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Welcome To Raquel's Progress Diary

Early in 2007, Raquel Brebach Guimaraes Fletcher, one of Dudley Ladies most popular European imports was diagnosed with Bowel cancer and from time to time she sent in updates of her progress through all the ups and downs of the NHS and chemo treatment.

Unfortunately Raquel died on Sunday 28th August 2011 but please read her very moving, very funny and inspirational progress throughout that period.

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Sunday 28/08/11 - Thank You and Goodbye Raquel

On Sunday 28th August, our lovely lovely Raquel passed away.

Right up until the very sudden end Raquel was inspiring people.

We had her last email update on Thursday 25th just three days before her death detailed below, where she was encouraging people to support Lance Armstrong's Cancer Charity.

The funeral took place on Friday 9th September at 11.40am at Stourbridge Crematorium.

Raquel by the way did not want any flowers but wanted any donations made to Macmillan Cancer Support, Cancer Active and latterly Cancer Research UK.

Below are also a number of photos that people have sent in that remind us all of what a lovely warm person she was.

 

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Raquels Story Starts Here in Thursday 08/03/2007

I haven't been around for a while although I am planning to return soon!

I have been on holiday and also had some health problems, nothing serious but it has stopped me from coming to the running club. I am still running when I feel like it though but at my own pace and less distance wise as just not fit enough at the moment. Hopefully all will be well soon and I will be back at the club.

Thanks for asking about me, it is nice to be noticed that I am missing.

Hope you are keeping up well and see you soon!

Raquel

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Think it may be Colitis

I am ok , they think I have got colitis or Crohn's disease, it is an inflammatory bowel disease. got my hospital appointment now for the end of march (they had sent me to the wrong hospital first which has delayed addressing the problem) & will get some new medication later on today (the one I was previously given made me more ill than the actual disease!), so I am hopeful!

Hope to see you guys soon!

Raq

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The NHS

I have now learnt about the NHS,  I only had to have two days off, I managed with the rest. I am fine now, actually, the new medication seems to work much better!! hurray.

Thanks for offering, but honest I am fine and being looked after!

Take care for now & see you soon,

Raquel

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Tuesday 15/05/2007

Bad News

I have been meaning to write to you for some time but since it is bad news I have been finding it difficult to tell everyone. When I went for my checkups at the hospital, unfortunately it turned out that my bowel problems had been caused by something far more serious than expected. I have been diagnosed with third stage bowel cancer in April. I have had my operation to remove the tumour and affected lymph nodes three weeks ago. The operation went well.

I am now recovering quite well, the fact that I am young and fit has been to my advantage. I will have to have Chemotherapy treatment for 6 months which will start very soon now - so don't expect me back at the club for some time!

I am, however, determined to come back and when I do I want to train for a Race for Life Run or something of that nature to raise awareness for bowel cancer.

My mother has come over from Portugal to be with me at this difficult time in my life and I am being well looked after.

I know this would have come as a shock to you but the best way to help me is to stay positive and to send positive thoughts my way!

All the best,

Raquel

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Saturday 26/05/2007

Cancer Research

Hi All,

Sorry to bother you with this but I have recently been very touched by a couple of friends and work colleagues of mine who have been 'inspired' by my illness to do a Race for Life in early June to raise money for Cancer Research UK.

Excuse my ignorance, for those of you who do not live in this country - I have no idea if similar events take place in your countries (although I am quite certain that they do) but basically all the money raised by these Race For Life events goes to the charity Cancer Research UK which will indirectly help me.

If you want to donate, the process is very easy - I have just followed it myself and you can even donate from abroad (amazing how these things work). The web address to donate and pledge your support is shown below.

http://www.raceforlifesponsorme.org/RMGroyalmailgirls

I would also like to profoundly apologise to those of you who didn't know that I had bowel cancer - as you can imagine the last few weeks have been extremely hectic, tiring and simply mad and I just haven't had the time yet to tell you all. And also the courage, as telling people has been the hardest part of all.

I had my operation to remove the tumour and any cancerous lymph nodes on 24th of April,

I am now well on the mend but will need to start a chemotherapy treatment next week which will last for about 6 months, getting treatment every two weeks.

I am very positive most of the time and whilst I totally understand that this will come as a shock to you, I do need you to be positive for me as well more than anything.

Thank you & lots of love,

Raquel XXX

 

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Sunday 17/06/2007

Thank You

"Hi All,

I too wanted to say thank you for my lovely card and all the kind words of support I have received - it really cheered me up!

I am just going through my second chemo treatment right now, this means two down already (although still suffering a little bit from this lot) and only 10 more to go - that will take me into early/mid November time. I then will have to see if I can come back over the winter months or if I give myself and body a break to recover (depends what my body wants really) and may start with the beginners class in April 2008. Well, one needs to have a plan!

I am generally in good spirits and determined to remain so.

Keep on running girls!

With lots of love from

Raquel XXX"

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Monday 20/08/2007

Saturdays Suck

Just thought I'd send a cheery hello from a nice blue skied West Midlands - doesn't happen very often that the sun shines so I already feel better for it.

The hospital just rang to see when I am coming in for my Chemo treatment today - I am allowed to get it today so it won't ruin my bank holiday plans to go to the Lakes with the walking group (don't worry I won't be doing any mountain walking!!). Normally I have to go back into hospital on a Saturday which can be sucks sometimes.

In terms of round 6 of Chemo, in comparison to round 4 everything seems harmless now. Extreme tiredness was the worst bit, constantly cold now thanks to chemo messing up circulation was the second worse bit, pain in the hands because skin is now peeling or very dry and lastly something that possibly isn't a side effect of the chemo but couldn't stop eating since Saturday. I think I got so excited I could taste things again for a few days that I went overboard. Anyway I have managed to put weight back on and am nearing the weight I had when I went in for the OP in April so that can't be a bad thing.

Hoping to get the date for the move confirmed today - all going well I will be in my new home in two weeks time and I can wave goodbye to nasty landlord and noisy neighbours and can focus on getting better. I had to give it in writing though to my Macmillan nurse, that I won't start any decorating in the new house. Unfortunately she has sussed me out already - she understands that I am young and just want to get on with things and be back to normal but I have been told that I need to slow down a bit. I can reassure you though that I haven't got plans to do any decorating myself, even I can be sensible enough to know that I won't have the energy for that at the moment.

Only 6 more treatments to go but I am getting impatient and want to be back to normal very desperately - I have to admit.

Positive for the week. I found a fellow sufferer by chance (same cancer and very similar story), (thanks to my friend Rob) and it has been really good talking to her and will keep up the contact. I still don't want to go to any help groups, for which I have had an invite, too, just don't think it is my scene.

I am taking a wee break from the wizardry world and am now reading 'Cider with Rosie' on recommendation from a friend - looks like another really good read.

Anyway, must dash as my favourite nurse, Ian, is waiting for me with my drugs (He makes me laugh and makes the afternoon so much more bearable and I can flirt with him you see ; - )).

PS/  I will respond to all emails that I have been sent in due course.

Lots of love as always

Raq XXX

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Friday 31/08/2007

Udderwise Known As Cream

Morning All,

Guess it is high time for another update.

This round of Chemo has brought new pains - unfortunately the mouth ulcers got so bad that I haven't been able to speak or eat properly since Monday. I knew there had been a reason to pile back on the pounds, I thought I might need the 'fat reserves' at one point. Well, I am happy to report that after a visit to my GP yesterday things are improving as I have been supplied with medication against it. If I had only known sooner that there is a remedy!

But the silly people at the hospital referred me to mouthwash and Bonjela, which I can confirm is absolutely no use!

So trying to organise a move while one can 't actually talk properly has certainly been a challenge. today I still don't know when I will be moving as the dear solicitors are dragging their heals or is it heels - basically all three parties are ready to move early next week, just the solicitors are not ready. I will know more later on today, hopefully.

None of this has dampened my spirits though as I have plenty to smile about and besides I have got the finishing line in view now - only 5 more treatments to get through. That's two thirds done after the next round which will start next week. I had a fabulous weekend in the Lake District. What a gorgeous part of the country - just wonderful. I have got another friend from Uni come over to stay with me today for the next few days and the day she leaves my mum is back for 6 weeks.

Now, I thought I 'd entertain you today - I have been given a new cream for my hands and feet (they dry out from the chemo) from the hospital. It had been on order for ages and they had to wait 6 months for it to arrive. I wouldn't be surprised if my friends at Mount Pleasant were holding it up at Customs as the stuff is from Ohio, USA.. . It is supplied in a tub with a white lid with black cow type spots on. The Cream is called Udderly sMOOth Udder Cream.

it does get better.

The Directions for Use are: Wash udder and teat parts thoroughly with clean water and soap before each milking to avoid contamination of milk. Use Clean individual towels for this purpose. Apply to the udder after each milking, massaging into the skin. For teat cracks apply a sufficient quantity to fill crack and cover surrounding area. Apply uniformly to chafed area and bruises to maintain skin suppleness.

For aid in softening swollen udders following calving, apply liberally twice daily with gentle massage.

Now I guess this is the part that actually applies to me - May be used for chapped or chafed skin. Do not use in or near eyes.

Well, the nurse reassured me that he didn't think I was a cow. He got a little paranoid thinking I'd get the wrong end of the stick.

Anyway folks, this is it from me for this week - thanks for keeping me updated and for sticking with me, for all the postcards and cards and letters and presents and emails that are still coming through - thank you!!

Lots of love,

Raquel XXX

 

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Friday 07/09/2007

Guinea Pig Day

Hello All, Thought I'd better get an update out before the pending move next week.

Yes, today is mushroom day - round eight of Chemo has commenced yesterday but strangely I am not yet feeling that bad and am quite chirpy. Guess it is the fact that I am moving next week and the sun is shining - finally an end to the tiresome tale of my nasty piece of something landlord. I thought he had given up on the matter but now we finally have a completion date of Monday for the house move, my solicitor owed up to the fact that he had further harassment from his end but didn't tell me as he didn't want to stress me unnecessarily. Anyway, only a few days now, I am moving on the 11th.

Well, I had plans to go back onto that nasty drug (Oxaliplatin) yesterday but the mad Chemo Prof refused. Would have helped if he had discussed this with me previously but guess at the end of the day it is his decision, especially as he will have to use me as a guinea pig as he hasn't done this kind of treatment before. (stopping sometime on the drug and then putting them back on - for those of you that haven't paid attention or haven't been on previous email update lists ; - )). anyway I told him I was happy to be his guinea pig, I mean it is kind of exciting, especially if it is going to work and might help others in the future. Just a wee bit annoyed as I had planned to have my mum here for support and now she will only be able to be here for two nasty rounds instead of three and he is looking at trying to put me on for the four final rounds. We shall see.

Apart from that, Mum has arrived in the UK again safely - she is in good spirits; now that Hell's Kitchen is on (another cooking series) instead of Gordon Ramsey's cooking series - for those of you that remember my mum has added the word 'fucker' to her vocabulary thanks to Gordon Ramsey's swearing and particular fondness of the word 'fuck' (pardon me) .the ' fucker' - Gordon Ramsey, who really is a cook, (she already asked how the fucker is doing and obviously is missing him - she also said Fuck and Hell????, what is going on with the English cooks)? haha, very entertaining, she had me in stitches.

Anyhow, I think this is it from me for this week. Finished 'Cider with Rosie' (got distracted so it took me longer), which indeed was a lovely read and now back on Round 3 of the wizardry world of Harry Potter. Also managed to get lots of lovely DVD bargains in the sales so should be ok to survive the next few weeks.

Lots of love,

Raquel XXXX

 

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Friday 28/09/2007

Is it Toooooth or Tuth

Hello All,
You are probably wondering what I have been up to as I have been quiet for a while . . . well I am not ignoring you, apologies for the phone calls and emails I have not yet been able to reply to but I have suffered from severe drowsiness and fatigue recently and it is not even the Chemo that's causing it.

I have had backache problems since the operation and have recently decided to mention this to the medical staff and they reckon I suffer from neuro something pain (nerve related), so basically the surgeon cut through some of my nerves during the op - easily done unfortunately - so they have put me on another drug to fight it and I am not taking it very well so I have been very spaced out recently. I couldn't even walk properly and looked drunk most of the day.

I fell asleep in the hospital's waiting room before my appointment with the mad prof and I think he got the hint then as he had to wake me up. I agreed with the mad prof yesterday that we have to reduce the doses or try another drug but since drugs don't get out of your system that quickly I am still suffering.
I will get back to you in my own time once I have recovered - it doesn't mean though that I don't enjoy your emails or cards, presents etc - thank you!!!

What else is new - well the mad Prof is still very impressed with me, he has spoken to some of his colleagues about my 'grand' idea to put myself back on the Oxaliplatin drug after having had a break of four sessions from it. They are all equally impressed with my cleverness (I still don't think there was anything particularly clever about it but never mind) and he reckons I am the first person in the world to trial this. hmmmm.

Mum keeps me entertained. I came down the other day for breakfast and she shouted 'don't be afraid,l am wearing a hat' - so there she sat in one of my noddy winter hats and a big scarf around her neck. I did get the message and put the central heating on. She wouldn't believe me though that in English you have no two words for that type of hat and the type of hat the Queen wears. The dictionary had to be consulted before she believed me!

I had similar fights with my friend Sue over the pronunciation of 'tooth' and 'toothbrush' - she still won't believe the dictionary confirming my pronunciation. I definitely think it is a long oooo sound and not a short one but here in the black country they say tuth.

Friends of mine have been painting my study in Candy Love Pink 4 - yes, it is a lovely pink colour although some might still want to disagree with me. I just thought I needed something bright and positive to inspire me with lots of great product ideas when I eventually return to work.

My brother is visiting tonight so I have sneakily taken myself of the nerve drugs as I don't want to sit here like a flat tyre and mum is busy preparing home made pizza for tonight. hopefully my taste buds will be back.
Due to lack of energy I am still stuck on the last 100 pages of Harry Potter 3.

If you think my spirits are in anyway dented, you are wrong, I am allowed to have a whinge every now and then but otherwise I can reassure you that I am quite blissfully happy in my cottage and with other things.

Love,
Raquel XXXX

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Monday 08/10/2007

Insomnia Promotes Speed Reading

Hello All,
 
Not much to report this week from the 'wacky' world of Raquel. The clouds have lifted and that is always a good thing, so looking like it is going to be a nice day in the West Midlands.
 
Staying in touch is getting harder for me at the moment as I am now mostly tired. The mad prof reckons it is the built up from the Chemo which of course I am now going through round 10! This round of Chemo has hit me relatively hard with lots of sickness feelings over the initial few days but seems to be calming down now.
 
I am still in good spirits though, just haven't got the energy to do much. I am finding it a bit harder now though that I am so close to the end - when you get this close you just want to be there and not have to go through another few rounds although there aren't many left at all now.
 
Two nights of insomnia resulted in me speed reading two books, one in particular I can recommend - Paulo Coelho's The Alchemist. I have now found 3 books at the back of that book that I am curious to get and that edition was from 1999, so there are probably more. I have now moved on to something entirely different Tracy Chevaliers' Fallen Angels which seems to be another good read, so far. Thanks for all the books you have sent me over recent weeks, it is nice to have one's own little library!
 
Broadband is still exciting me, little things in life make a difference - it is so fast, it is fab!
 
Cant believe I have been in my home for 4 weeks tomorrow and Mum is going home in a week's time - time is flying even when you are going through Chemo!
 
Anyway, I am going to love you and leave you - must make the most of the sunshine!
 
Lots of love,
Raquel XXXX
 

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Wednesday 17/10/2007

Lucky Lady

Well, hello hello, I thought I'd better get this out before I suffer another knock on the head tomorrow with Round 11 of Chemo (penultimate round) awaiting me. I feel better this time, not dreading it anymore, just feel ready for it - so bring it on!

Well, it has been an eventful week in the world of me.

Last week I celebrated some successes, getting a nice cheque of my mobile phone company for threatening to take my complaint to trading standards (they miss-sold me my contract under false pretences) - just means to me that despite the cancer and everything I still have my fighting spirits and am no pushover.

The nasty landlord who one would think would have been appeased now that I have moved out and he was able to complete his sale pathetically tried to get his legal expenses out of my deposit. Anyway my solicitor has given him a piece of his mind and nasty landlord has decided he doesn't want the case to go to court (funny that, must have realised he would lose, the loser)

Mum has gone home yesterday, of course she nearly missed her tedious cross country train to Stansted airport as she was still busy sorting out my garden in the morning. I nearly caused major chaos by happily standing on
the platform with her backpack and tickets waving but luckily I realised a moment before the doors shut and through the bag into the train.

Unfortunately I noticed 5 minutes before we had to go that she had 3 itemsof hand luggage. Managed to convince her to get rid of one and had a bad feeling about the other two. And of course I was right, they gave my poor mum a lot of hassle for that at the airport , so she almost missed her flight, so if any of you are travelling, remember one piece of hand luggage only.

What else? Ah, yes, saw Mr. Patel (Surgeon) on Monday and told him about my back pain as I value his opinion more than the mad professor's and after all he is the one who did the op. He laughed out in surprise when I told
him that apparently he has cut through some of my nerves as he actually hadn't been anywhere near them. (mum of course told him that she had known that all the way that he was ' innocent' ) Hmm, funny that. I am really not
happy with the mad prof for not checking this with my surgeon and for putting me on knock out tablets that made me feel so miserable and all for nothing. So, it is going to be awkward on Thursday when I see him next. His
pride will be hurt and I am supposed to trust my medical team but obviously that trust isn't there right now. At least not with the Prof. He should stick to his own expert area of chemo, hopefully he knows what he is doing
there. Anyway, Mr. Patel was great as usual and got an x ray sorted that afternoon and everything is fine, just a posture problem. He was very pleased with me and told my mum ' that one is full of life' - so there you
have it.

The other exciting tale of the week (for me) is that I have miraculously stopped losing my hair. It is great as I was getting obsessed with it wondering if I would make it to the end of my chemo with still hair on my head or not. However I have learnt you can lose trillions of hair and still have some & they are already growing back. Wonder what mad prof will have to say about that one.

And lastly mum is gone of course and I am a bit worried how to survive the last month of treatment but there is a new light in my life in the shape of my new boyfriend, who has very kindly taken time of work to look after me
on my worst days so I should definitely manage somehow. Aren't I a lucky lady. ; - )

Lots of love,
Raquel XXX

 

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Tuesday 30/10/2007

Me and My Big Mouth

Good Morning All,

Well - me and my big mouth - this has actually been a really tough round, looks like they are definitely not going to get any easier!

I am therefore extremely relieved that I have only one more round to go as it feels now like my body is starting to fall apart. the long list of side effects which is not complete include mouth ulcers that won't be scared off anymore by doctors' creams, hand pain, foot pain (my left foot feels like it has an iron implant), electric type shocks (don't know how else to describe it, it doesn't hurt but is just weird) going from my legs into my feet , swollen hands, aches and pains all over my body whilst the chemo is travelling about but I guess the worst of all is the severe loss of appetite as everything tastes blunt and horrible and I have to invent tricks to keep me eating.

I could have quite easily gone without any food or drink for an entire week but guess what - I decided not to and force feed myself as much as I could !

Eventually I discovered that fruit and custard are edible and if you think that any of that has stopped me carrying on with my life, you are in the wrong. I still forced down a Chicken Korma on Friday night, went on a 4 mile walk through the Warwickshire country side on Saturday and went to the seaside on Sunday (it was so lovely to see the sea) - but then that is usually around the time when I start feeling a bit better (after one week) - the week before that I mostly had to be content with playing marshmallow and watch DVDs etc.

My meeting with the mad professor caused a bit of a stir as I don't think they deal with many patients like me. ; - )

Anyhow, I asked him if he and Mr.Patel (surgeon) could ever agree on anything ('can you two ever agree on
anything??') as the mad prof still thinks it is my nerves that are causing my back pain. The oncology (chemo) nurse fell into a nearby chair of laughter and the other nurse looked at me in amazement. Guess nobody dares
to talk to the mad prof like that. He didn't quite know what to say so I added that it didn't help the patient if the medical team couldn't' agree. Well, somebody had to tell him. It will be fun when they start fighting over my portacath - one wants it out and the other wants to keep it in kindergarden!

One of my recent highlights was a visit from one of the district nurses who told me how much she admired my attitude and that I was very different to most of cancer patients she sees and if she ever got cancer she hoped she I'd be dealing with it like I do. I think that was one of the nicest things somebody has ever said to me. The other highlight is that Steve Sneath, one of my colleagues, is doing a Toughguy challenge for Marie Curie Cancer Care next year! Can't wait for the pictures! And lastly I am planning 5 weeks away to mostly New Zealand in January, I am so thrilled and excited.

Missing mum and her mad entertainment - one of her last stunts was to climb on my roof (extension) to clean my windows, never mind she is scared of heights and 69 years old. I think I now know where I get it from, it
had never occurred to me before.

Just that moment Megan, the Macmillan Nurse arrived and I greeted her with "Mum is on the roof".

My mum begged her not to move anywhere and hold onto the ladder until she came back down - this all happened to the great bewilderment of Megan - don't think she has come across that very often when visiting one of her cancer patients.

Paul, has turned out to be the perfect 'nurse' and is looking after me very well, don't know how I would have coped without him.

After all the chemo is over I am hoping to receive the all clear. I generally feel very positive that I will receive good news (I am sometimes scared though because I am actually human). This will be done in form of a CT scan on
bowel, liver and lungs (they weren't' sure at the time if any bastard (pardon my language) cells had travelled from the bowel area to those areas as they couldn't see anything but they had been in one of my blood vessels
near the bowel and that was their concern- just thought I'd remind you as it has been quite a few months.

Well, I am signing off now to have some Crunchy Nuts and Fruit and a good cuppa tea!

PPS for those of you who haven't kept up to date - it is my last and final round on Thursday - Gong!

Lots of love,
Raquel XXX

 

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Friday 09/11/2007

The Art of Typing With Gloves On

Well hello, hello - I guess it is update day again.

I am in a much better mood today as I can finally eat again (a little bit) and have also mastered the art of typing with gloves on!

Well, this has certainly been the toughest round of all!!! But it is my last round and I am starting to feel better again, so the worst is over - tatatatatatata!! Got the champagne stored in the fridge!!!

I have been on a kind of hunger strike for almost a week, my stomach felt 'shut' and my mouth just didn't fancy food that tasted like a combination of metal, cement and glue - not that I have ever actually tried eating either of those or any of those mixed together but this is the only way I have come to describe it.

Unfortunately Paul worked it out that I hadn't been eating so decided to force-feed me last night which seems to have done the trick - at least I managed to enjoy his chicken chow mein kind of and my crunchy nut breakfast this morning went down relatively well. Haribo is the only 'food' i could kind of have last week and maybe a bit of fruit. Never mind the surgeon wanted me to lose some weight anyway. Cheeky sod, it is not my fault they are pumping me full of steroids!

Mentioning the latter, the mad prof has actually spoken to the surgeon after my little comment the other week, which I am quite impressed with because at least he listens to me. According to the mad prof Mr. Patel has backed down a bit re the nerves issue but I have decided to take no chances and get it checked out properly before I end up taking more drugs for the rest of my life. You never know a chiropractitioner might do the trick
after all. One of them has recently sorted out my dad, who always had two legs of different lengths (yes, this is true) and now they are both the same length.

What else - 22nd of November is my D Day.

I should find out in the afternoon if I am in the clear. I am feeling very positive at the moment. I was quite positive anyway but now a dear friend has organised a hypnotherapy cd for me to which I have started listening to this week and I kind of float around in a happy yellow bubble mostly now. It also seems to be working on improving my energy levels which can only be a good thing as I am going to need it!

Oh, I should probably explain the glove thing because you probably think I turned completely mad otherwise.

The neuro something has come back badly now, like i suffered it in round 4 and then was taken of the oxaliplatin drug for 4 rounds which causes it. So I have this annoying tingling in my fingertips which just makes it harder to do a lot of things, same applies to my feet. I can't even stand in the kitchen which has a carpet with big socks on (not the carpet, me has the socks on!) as I can still feel the cold floor coming through and the tingling. I am very pleased I did go through most of the treatment through the tropical summer months we had because if I go outdoors I feel the cold like ice on my face, probably the kind of feeling you get in the Antarctic.

The 'iron implant' in my foot is getting worse and doesn't seem to enjoy my driving despite I am trying to relax it with a bit of Il Divo so I have earned the comment 'stubborn' from the Macmillan nurse, but I guess she meant it kind of as a compliment. After all my stubbornness (all inherited and not my fault by the way) has helped me get through this nightmare journey over the past few months.

Another experience I made is with the lovely benefits system. I dragged myself to the jobcentre on Monday because after 3 weeks I still had no paperwork through from my 30 minute phone application for incapacity
benefit. They dared to blame the royal mail but of course I put them straight. Anyhow, after having given them all the paper work and what else one has to do and asked 3 times if they had everything, of course I got a letter through the other day to ask for more details. They really make you jump through hoops. So try and not be over 6 months ill as that will certainly make you more ill!

Right, I think this is it for this week, have a good weekend all.

Lots of love,
Raquel XXX

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Tuesday 20/11/2007

Things Are Looking Up

Hello,

Just a brief update from me to let you know I am starting to feel much better already. I still have problems with my hands and feet but they seem to be easing off as well now. Skin is definitely getting better and so is hair (braved it to the hairdressers on Friday), which has boosted my confidence.

Dentist caused my lips to bleed again but has now all healed and mouth ulcers have buggered off. One did try and sneak in after the others had already gone but I told it to bugger off as it was too late timing now and so it miraculously did!

My taste buds have improved a lot, although not yet back to normal, but it means I am eating again (probably too much at the moment as I am so excited I can taste things again).

The long dreaded CT Scan finally took place on Friday afternoon and upset my bowel - for those of you who have never been it means you have to drink a lot of rather strange tasting liquid prior to the scan to cause the Blackpool illuminations (English town which has a lot of Christmas lights) inside your body.

Been to see a back specialist as I didn't trust the  chemo prof (mad) on the nerves issue and the good news is that he agreed with the surgeon that it is not the nerves. It cheered me up as it means I don't have to take the nasty little drugs the mad prof had planned for me. I will have to go to an MRI scan next week though (the tunnel one) but I am kind of amused by it as it means going into a huge truck that parks once a month outside of the West Midlands Hospital - those of you who still don't get my sense of humour - I just find it funny that a private hospital has to do their scans in a truck.

Another highlight of last week was to take a Sainsbury's (UK supermarket) bag full of drugs (Chemo Spilling Kit and the lot) back to the hospital as I don't need them any longer. It cleared a whole kitchen cupboard, great news!

Well, all is geared up at my end now for the big day on Thursday where I will hopefully get the good news that I am in the all clear. Cross what you can for me and send some positive thoughts. I will let you know later in the day on Thursday what the outcome was.

All the Best,
Love,
Raquel XXX

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Thursday 22/11/2007

Good News

Hi All,
 
I just wanted to share the good news with you  - right now I am cancer free, had my results today and all looking on the up.
 
Of course I am going to be under surveillance for the next few years but I feel that a bright future lies ahead of me.
 
Thank you for your best wishes over the past few days!
 
I am a little tipsy right now as I am on a combination of champagne and champagne truffels and I am off to celebrate tonight!
 
Byyyyyyyyyyyyeeeeeeeeeeeeeee,
Lots of love,
Raquel XXXX

 

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Sunday 19/10/2008

I'm back

Hello my dears,
 
A brief update today as not much has been happening.

I am back on treatment after a loooovely three week break this Thursday. Having been off it has made me realise that I am suffering more from it and it is impacting more on my life than I realised - so yes, I have very much enjoyed my break - everything has become easier. Over a week now since I am no longer suffering from mouth ulcers (these are nasty things, I had developed a giant one on my lip, yes, made me feel 'great' indeed !)
It has been so nice to enjoy food without having a metallic taste or being in pain.
 
And since you keep asking (maybe I should attach a calendar to these updates) three more treatments to go until the next scan then I am hoping for a longer break until I have to go back on chemo.
 
I have discovered a new book this week of a woman not living far from here who was told over 25 years ago she would die within a few months from her brain tumour and then ten years after that developed bone cancer but she never had the standard treatments (surgery, chemo, radio) and has managed to keep the cancer at bay all that time. Fantastic stuff. So I ordered two books, one for me and one for a friend of Pauls who is dying from cancer. She is only our age and it has been stressing us out a lot, maybe that's why I have to keep so busy.
 
So, what have I been up to - we managed to catch up with friends we hadn't seen for a while. It was great. Been able to carry on with my sugar crafting (I made a Santa face and a bear lately, haha) and flower arranging -  made nice posy for table (I am rather pleased with myself), the tai chi is getting a bit easier but of course it doesn't help that I can't go every week. Been walking (hurray), went to a christening of Paul's second cousin, became godmother (very proud) of my Finish friend's most recent addition to the family - a little baby girl (well, guess they are all little).
 
the beautiful autumn days (yes brother we get nice weather here sometimes!) have mostly been spent in the garden. I do enjoy a good old Indian Summer. And that is where I am off to now, I got tons of tulips to dig into the ground for a festival of flowers in the spring. So must dash - I will keep you posted. (I always tend to go a bit mental the last three days before chemo as there is so much I want to do and feel like I am running out of time because then I have to take it even more easy)
 
Lots of love,
Raquel XXX

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Wednesday 29/10/2008

Bored

Hello All,

I am bored as Doctor Paul has ordered I need a rest. So I am sat in bed with my laptop and thought I could send another update.

Outside is a crispy autumn day. We have lovely bright blue skies but there is now frost on the fallen ash tree leaves covering Lavender Lane (we are all hoping for the council to sweep them up or for the wind to blow them
away, I think). Paul and I managed to put all the non winter hardy plants in the greenhouse, let's hope they are safe there from Jack Frost (Jack Frost ist ein anderer Name fuer Frost hier).

Got woken up by a shorts wearing postman this morning delivering nothing but my rather unexciting 10 years Service Reward. It was unexciting because you'd think you get more than a posh pen and a glass frame with your name and a few words in it. But still, I put it proudly on the fire Sims especially since it is the only reward I ever received where they spelled my name correctly.

It is half term and we are enjoying a course free week. nice too, especially for Paul who has to do lots of homework from his reflexology course. Whereas my homework consists of beating up icing sugar once a week
for the course and buying flowers for the other course as well as rummaging through the garden for some foliage (Gruenzeug) to keep costs down. ; - ) Wonder if my neighbour has noticed yet that one of his bushes right next to the fence is getting smaller. . . oops.

I suffer from a giant mouth ulcer that developed last night. sniff. It is very painful and if I was a research scientist I would develop something that bloody works for these nasty things. Not much drinking, eating and talking for me for the next few days. Poor Paul managed to cook a soup last night and spent some time on it and then it was far too spicy for me to eat it. Paul by the way acquired stardom lately by turning up in the Regional TV News. They showed the rather damaged Aston Martin car James Bond drove in the recent movie and there he was in the background, wearing white gloves and looking rather importantly pretending to type something into a
computer. Managed to have a good laugh about it in between throwing up on Thursday.

Well, I had my 10th lot of Chemo on Thursday and since I was ready for one more experiment I refused all anti sickness drugs. Unfortunately this backfired and resulted in me riding the porcelain bus for most of Thursday.
(in other words I was throwing up = mir war schlecht/musste spucken). Strangely although I didn't take any
anti-sickness drugs after Thursday I have been absolutely fine in terms of sickness since. This may have been as my chemo bottle was leaking and I didn't get all of the joy of the chemo.

Anyway despite everything the mad professor (who still hasn't had a haircut for well over a year now) has concluded that they should report about me in one of the medical magazines. doubtful that this will happen but I could tell they are rather puzzled about the recovery of my blood. I have top marks again (so basically my blood is perfect) and that within having only three weeks for it to recover. (Remember it has recently been on the low side which resulted in the three weeks break instead of the two).

They were curiously asking me what I had been up to in the last three weeks as they couldn't quite get their head around this change in my blood. In the end the mad prof concluded that I should carry on with my 'regime'. One last confused look at my wild mane of hair before he left the room (my hair had been falling out big time over recent months but just when I started to consider that I really may need a wig (how do you spell this thing? = Peruecke) in a few weeks time it reduced falling out significantly and has been growing back like weed at the same time). Hurray, it hopefully means a wig-free bride in a few months time.

Got two more lots after this and should get my CT Scan results on the 4th of December.

Haven't been doing much since my last update last week, just sorting out the garden and went to the Safari Park on Sunday eve. They were advertising Illuminated Animals and there I was with my imaginative mind expecting to see elephants and lions carrying fairy lights. What a disappointment it was!

Lots of love,
Raquel XXX

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Thursday 18/12/2008

Writer's Block

Dear All,

First of all my apologies for not writing for such a long time but apart from being a very busy little Santa I think I had 'writer's blockage'. It only just has been lifted by Paul's friend, who I told you about a few weeks ago (they gave her two months to live after her cancer had returned) asking to see me today. We only went to see her Saturday and for her wanting to see me again today has given me some kind of strange boost. I guess the fact that I may be helping her somehow and may be making a difference to her has given me a boost.

Well, you know I had my CT scan results on the 4th of December, I couldn't really write to you then as we had a flight to catch. We went to see my brother and family in Germany, I hadn't seen my youngest nephew (oh, he is so
adorable) for a year now and nor had I seen my sister in law. My brother and my elder (also adorable) nephew did come to see me in September. So we had a delightful weekend. Paul made things on order from my nephew in plasterscene (?) , so that kept him busy because obviously there was the language thing. (so we had forklifts and all types of boats and aircrafts made).

So, back to the results, I am digressing. The waiting for the results is kind of the worst of it all. So you can imagine, when the hour and minute of finally seeing the mad Prof comes, I want him to spit out the results
there and then. Not so this time, he started going through how I had been feeling etc, then started cracking jokes at what point I interrupted him and told him (probably having the look of a school teacher on my face)

"Professor Ferry, all I really want to know is my results!"  He looked at me puzzled, then remembered ' Oh, your results! Well, they are very good!' You can't believe the feeling of relief Paul and I experienced at that moment.
So, the good news is that the buggers (Umgangssprache = nervige Objekte in diesem Fall = Metastasen)
 on my lungs have not grown, there are no new lesions and the buggers have even partly reduced in size. Now, this latter bit seems to have puzzled the mad professor. Apparently the best case scenario is usually for the metastases (hereto referred to as 'buggers') to stay the same size and not grow but they don't normally expect
them to reduce in size. So for the first time ever he was curious to hear if I am using any alternative treatments. He actually wrote down my rather large list of vitamin & mineral etc pills but he only knows half of it. When
I mentioned the diet he clearly didn't want to know. . . his loss, not mine. Oh, and one of his patients is friends with Gordon Brown (nearly put Ramsey here (he is the TV cook my mum became addicted to last year when she was here), wonder what my mum thinks of the f- - - - - now, haha! - for those who don't know he has been accused of having had an affair for the past 7 years), and she is taking some other drug that the prof originally designed andtrialled and then dismissed and now he is in trouble with the pharmaceutical company he originally trialled this with. The woman is much better but he is still claiming it has nothing to do with that other drug she is taking. Might be worth checking it out.

The other news around my scan is that as usual there are the cystical mass on my right hand side which has stayed the same in size. Still the mad prof and the surgeon are disagreeing on this. The latter still believes this is
not necessarily cancer. I have a new small cyst on the left hand side on an ovary now, which they say can be anything as women my age tend to have cysts in that area. Then there is the mysterious pubic bone that is
healing, well, the bone isn't mysterious but the fact that it is healing without me noticing that it was ever fractured or broken. And lastly there is some thickening on the ascending colon and again they don't know what that is. So for me it is to concentrate on the good news now, the cancer is under control and something I am doing must be right. Of course I would like to know for definite what all these other bits mean but apart from an endoscopy (camera up your bum) to check out the colon bit they can't do anything. My surgeon is adamant he doesn't want to operate no matter what so I guess we will never know about these cystical masses.

Apart from all that life has been lovely. I had a 2.5 weeks break from the chemo and fitted in lots of stuff. Went to the xmas market in Birmingham, saw some friends, went on a 6mile walk, did a nice snowman cake for my mum
in law to be's birthday and made some gorgeous (sorry but I am pleased with myself) cupcakes for her to sell at the Christmas fayre to raise money for her theatre group. Apparently 'they flew off' as they were so popular, so yes, I am pleased as I had never decorated cupcakes before. By the way my mad and eccentric Sugarcrafting Teacher has overcome the fact now that I may not be able to produce a perfectly round-shaped fruitcake but that I make up for it on the creative side. She has asked if I am coming back next term and said it would be lovely if I did. After all the abuse I had from her this has cheered me up as well.
 
Apart from that I have been doing some rather stupid things. I am not sure if I can blame this on the chemo although I tend to blame the Chemo for everything these days. The other day I was in my car, motor running ready to set off when I realised the front door of Peppermint Cottage was still open. . . yesterday morning I came downstairs and noticed a funny burnt smell in the house. Mysteriously a huge candle which both Paul and I had checked that it was out decided to light itself (??) overnight and burnt down entirely. Since I had placed it straight onto Paul's beautiful table, the latter is now ruined and there was wax all over the place (chair, table, carpet) - but we are just relieved to be still alive or that the table resisted the burning and so apart from a black dented hole into the table nothing else was set on fire. It feels like the angels have been looking over us, god knows what could have happened. So , watch these candles!!
 
So, now i think I have written enough. Although I could go on for a bit. ;- )

For me the lights on the Christmas tree are shining even brighter this year. Have a good look, you might see it to. ; - )

Merry Christmas and a Very Happy New Year to all the ladies at the club. The way things look at the moment it is looking unlikely that I will ever be running again but at least I am still walking and one should never give up hope!
 
Love,
Raquel XXX

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Thursday 05/02/2009

Can't Sleep

Hi All,

I can't sleep as I have got chemo in a few hours and I quite like being tired for that so I can sleep through most of the treatment. Thought I'd sneak an update in before I don't feel like facing the computer for a few
days.

Outside it is snowing heavily to my great disappointed. Since I will be in hospital all day I won't be able to go for a walk in the snow. I must admit I have been enjoying the snow as much as the children, shame I haven't got
a sledge anymore!

Never noticed how noisy typing can be - it is when the house is all quiet apart from the heating making silly noises.

Well, what a month it has been. We haven't had an easy start into 2009. Not even a week after Tabz funeral Paul's grandmother died. Four days later, whilst Tabz ashes were spread over a beautiful beach in Devon, a good friend of ours lost his brother to a heartattack - he was only 46. Three days after that Paul's great aunt died. Apart from that we had more bad news from people we care about but I won't elaborate here. So mentally, it
has been quite a lot to deal with. On the other hand physically I had a good round of chemo, actually. Apart
from some silly thing on my tongue (some sort of ulcer development) I have been able to get through the round more or less unscathed. I have more energy than usual and none of the other nasty side effects. So, I have
started to go out for a little walk at least every other day which is good for me. I like getting some sunshine into my system, too. I have done the shopping,, made a lot of the wedding invitations and set up a wedding
website to ease the process of organising everyone. Oh, and I have started to grow my own wheatgrass. Apparently that's very good for you and even better when fresh. It has actually been quite a satisfying process to see some green starting to come out of the wheat. I have ordered a sprouting jar to ease the process. It arrived safe and sound the other day despite the Postie throwing it over our 2m high gate.

Apart from that I have been supervising the kitchen project. The new oven and hob are now working to my great delight. It is going to be so much easier and quicker to cook stuff, I am so excited and can't wait to bake my
first cake in it! At the moment it is going to be a great help as my father in law unfortunately doesn't appreciate our diet (can't understand why - hehe) and prefers his steak pie+chips and sausages etc. In our old oven it
just took forever to get these done. . . At least he is eating our soup and we manage to sneak some brussel sprouts in and tell him there are none in the soup. . .haha. .. it won't do him any harm. But anyway it means I have
had to develop into a domestic goddess and dish out different dishes. The worst was the other night when I decided to make omelette and had to make three types.

The kitchen only needs tiling and painting now and the sink . . . well, I shouldn't say 'only' as my father in law who is doing most of it likes to take his time but it also means that it is getting done properly. Paul has
already lost his patience with it, it was funny though to see him come to life on Saturday when friends of us fitted some new windows and it was demolition time to get rid of the old windows. Never seen Paul work with so
much enthusiasm -haha! He just makes me laugh. Don't get me wrong - he is not lazy but he hasn't got the patience and he likes to moan about such things just for the sake of it.

Other than that I have had my usual portion of getting annoyed with the mad professor. When I saw him last I was kind of ready to get the baseball bat out my uncle had suggested quite some time ago. Instead of being happy for me that my bowel scan came back clear all he was happy about was that it
was now apparently '3-0' between him and my surgeon. I clarified with him that it was me who needed to know for sure as there had been too many question marks. So then he went into a long monologue about how typical
that was of me and 'that I am like a dog with a bone' (strange I remember a few work colleagues calling me that - and I can see the 'guilty' parties laugh at this moment) and I should have become a doctor apparently and he
himself is a dreamer and his own teacher at uni used to say to him ' he is dreaming, he is dreaming but we need to know what he is dreaming about'. So anyway, we have come to the conclusion that if we had to work together he would have driven me mad - so at least we are agreeing on something for once. He managed to upset me again with his prognosis of my life expectancy, I have to admit it got me down again but is now making me more
resolute to proof him wrong. And then it will be a biiig 1-0 to me.

I will sign off now and find something else to do (which won't be a problem) - this was a longer update than expected.

Lots of love and be careful in the snow out there. It looks like there is now black ice underneath the snow in some places so don't go out unless you have to!

Raquel XXX

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Thursday 12/03/09

BRILLIANT NEWS

Dear All,
 
I can not describe how relieved I am right now as I am still in a state of shock from the very positive news Paul and I just had.
 
The cancer has reduced in the pelvis and has state stable (has not increased) in my lungs and there are no new lesions anywhere - it is all just bloody brilliant considering that I have had less chemo for the last 3 months (they stopped giving me one of the drugs) and also had a nearly one month break from the treatment around christmas - it is just fantastic.
 
I can't tell you how happy we are right now. And it is spring and it's lovely everywhere.
 
Love to all,
 
Raquel+Paul XXX

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Tuesday 24/03/09

GARDENING LEAVE

Dear All,

Just a brief note this time. Really have been enjoying the good news the
other week and just allowing myself a few extra days off from chemo.
Instead I have been enjoying the good weather we had in this country for
the last week. It has been lovely, just been spending a lot of time in the
garden pruning and weeding and I went on a few walks, too.

So today, it is back to the drain, that is Chemo. I am really not
looking forward to it as I don't like how it interrupts my life for a few
days resulting into me just sleeping lots, I'd much rather be able to do
things all the time.

I am looking into having a bit longer breaks especially around the wedding,
I feel a lot more confident now that I have had such good results that I am
not actually needing chemo all the time like the mad prof and gang reckon.
I do wish I had even more courage and trial life without chemo for a much
longer period but I am not quite there yet.

On the good news front Paul has passed his reflexology exams and I have now
zero points on my driving license! Hurray!

To those of you to whom I haven't replied to your emails yet I apologise
and blame the wedding and the good weather. ; - )

Bye for now,
Raquel XXX

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Wednesday 03/06/09

WEDDING BELLS - RAQUEL TIES THE KNOT

Dear All,

Yes, I know it has been a very long time since my last update and it has been hard admittedly to get back into these.

As you know I took a good six weeks break from chemotherapy in order to feel the best possible on our wedding day which was on the 15th and 16th of May. Yes, we got married twice, Friday at the Register Office and Saturday by means of a beautiful humanist ceremony. It was just the perfect day on the Saturday. Luck was on my side and I didn't feel any pains in my leg that day and my energy levels had sort of returned (I suffered from exhaustion and stress just before the wedding) and apart from a very needed afternoon nap I was able to enjoy our beautiful day. It was all worth it though as we have had so many nice
comments from people enjoying themselves, it was just lovely to know that our efforts to give everybody a good time had been appreciated and most people had a fantastic time.

I can't wait to see the wedding video to relive it all again, it has been nice getting first photographs through and I can't wait to get our official pictures soon. My dad has made it onto YouTube, if you want to see his performance of the night (joint with Elvis) again or if you weren't at our wedding and want to have a look - please go onto Youtube and search under 'Alberto dancing granddad'

My dad is 'the legend' now having even impressed teenagers (who as you know are hard to impress). Even my mother went mad on the dance floor, astonishing everyone including her own brother. I think that night just showed what spirit my family is made off.

We spent a further few days in the lake District with friends and family (my parents stayed until the Thursday), which was lovely being able to spend some proper time with people we hadn't seen in a very long time - as
unfortunately there wasn't time for that on our wedding day. I think I never realised before how busy we would be and I hardly had the chance to say hello to people let alone have a chat.

The day we returned from the Lake District it was near back to reality. A Blood test on the same day with me being poked for bloods 4 times by a new doctor who also used the plaster on me that I am allergic to, so now I have 3 wonderful plaster marks all across my arms. . . that day we made most of what we had and then
the next day I went to have chemotherapy . . . I coped well this time so a couple of days later we managed to drive south where we spent a few days in Devon and Cornwall house-sitting for Caz and Dave. It was just perfect as we could go when I felt well enough and didn't have to book anything etc, we had a wonderful time.

This Sunday I did the Race for Life - Finally for the first time. For those who don't know what it is it is a charity run/walk raising money for research into cancer. It meant everything to me that I was well enough to do it myself.

Physically it was less of a challenge than I expected ( I didn't run of course, I walked) but mentally was tougher. Me and my husband (! ; - )) Paul couldn't hold back the tears when the speaker said' we are all here hoping to find a cure for cancer' . It just brought it home to us how wonderful this would be for so many people.

So please don't hold back, give generously if you can - it is for all of us.

And Thank you to those who have already given and to those that are raising money themselves by doing the Race for Life. Paul and I have + will sponsor people, too, in fact altogether we will give a pound for everyone of our wedding guests as a favour, which will make it about £170.

PS I will try and be in touch individually with people soon - it is chemo day again today and next week I am banned from the house as Paul is breaking the wall to the living room down, so I am moving out for a few days as it is not good for my lungs to be in such a dusty environment so bear with me but now that the wedding planning is over I shall have more time for emails and phone calls hopefully!!
 
www.raceforlifesponsorme.org/raquelbg (this is not a link as I don't know how to do links!)
 
and don't forget to check out YouTube!!

Thank you,

Raquel XXX
 

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Wednesday 03/06/09

CT SCAN RESULTS

Dear All,
 
As some of you knew I was given my CT Scan Results today and unfortunately it hasn't been good news.

The nodules on the lungs have partly doubled in size and volume. The cyst in the right hand side of the
pelvis has also grown a bit whereas the other one has remained the same in size. There are no new lesions anywhere else, so at least there is some good news in this as well.
 
They are going to try a different drug (Erbitux) with me from next week onwards on a biweekly basis and there will be another scan in 2 months time.
 
Paul and I are devastated at the moment we so wanted it to be good news, it is just hard to believe it all happening.
 
We will be in touch when we have recovered from the news.
 
Love,
Raquel and Paul XXX
 

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Tuesday 21/07/09

OVER THE INITIAL SHOCK

Dear All,
 
I think I have got the date right. . . I guess when you are not working it is easy to lose track!
 
Anyhow, I was quite determined to send you an all positive update today as mentally I have been a lot more positive. Guess we have gone over the initial shock now, I am not necessarily feeling any worse a month on so I guess that gives one hope. I have also decided in order for me to stay sane I have to convince myself that I am going to be just fine one day. So that's what I keep telling myself.
 
We are trying to get back to a more normal life again and with the house nearly finished now that is becoming easier already. We started going out again and doing the things we enjoy like spending time with friends and enjoying the outdoors.
 
There is something I have kept from a lot of you up until today because well I don't really know why but I guess it is because it is just so unbelievable but my mum has breast cancer. There it is out now. She is going in for operation tomorrow and yes there is a lot I could say about how I feel about this whole situation but I won't. We are hoping that they have caught it in the early stages but of course until 'the b' is out we won't know for sure.
 
I sincerely wanted to thank all of you that wrote or gave money for Race for life or did the Race for life themselves or whatever else you did to support me - you really don't know how much it means to me. It was good to see how many resources are out there and thank you for encouraging me to battle on and for highlighting the things for me that I don't really see. And yes, any of you that have been to our wedding and have got photographs, we still love to see them although we already had over a 1000 but its still great to look at them and more. It is just one simple way of cheering us up! And apologies if I haven't replied yet but I don't like spending too much time on the PC at the moment.
 
Right, must dash as it is chemo day today and have got lots to do before we head to the hospital. Oh, and guess what I have sorted out a cleaner so when we come back from hospital today I am hoping to find a clean house - exciting!
 
PS I have started to send out some Thank you cards to some of you but havent put anything else in about current situation because there is a time and a place.
 
Lots of love,
Raquel XXX

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Tuesday 21/07/09

CHEMO AGAIN

Dear All,
 
A brief update before I go into Chemo again in a bit as it does wear me out for a few days.
 
Good news is that we are all hopeful I am responding to the treatment as the pains in my legs have reduced and even the Prof said twice when I saw him two weeks ago how well I looked; he was very surprised and doesn't normally tell me things like that (although he normally sees me at my worst anyway but I have changed things around now so I see him sometimes after the chemo bottle has come off instead off when I am wondering if I can make it to the loo in time for the next bout of sickness , i. e during treatment)
 
Last week was a very good week, I have kind of decided to do what I want to do and not let the cancer stop me anymore. So we have been travelling to see friends and family within the UK which was lovely.

We also fitted in a lot of walking and I am very proud that I have walked 9 miles on coastal paths (they are very much up and down in England for those of you who don't know) as well as in the Shropshire Hills. So, yes, I have been on a bit of a high this week despite the bad news about my mother.

I guess I have kind of decided that the only thing that will help my mum is if I get better. I know a lot of people have asked about mum as you all met her at the wedding or met her previously of course - she seems positive and mentally fine, the operation didn't take place yet because they wanted her to see a specialist first so we are waiting for a new date in the next few weeks. I am not happy about that and have urged my mother to push for a sooner date.

It seems at the moment things are harder to cope with for my dad with both me and my mother being ill with cancer.
 
I am sure there was more I wanted to tell you but that will have to wait for another day as I want to do my weights before we go to the hospital.
 
Lots of love,
Raquel XXX

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Friday 14/08/09

GOOD NEWS

Hi All,
 
Sorry I haven't got around informing everyone straight away and not sure if everybody that I sent the news via text got the text but there has finally been some good news!
 
I got my CT Scan results yesterday and the cancer is static, no sign of growth and no new lesions anywhere - it is such fantastic news, we are just so relieved and happy at the moment.

The other very good news was that my bone marrow (Knochenmark) hasn't suffered at all which the Professor was quite surprised about as it was expected that it would suffer. I asked if any of my diet may have had a positive effect but all I got was 'raw liver apparently helps'. Obviously I am not eating raw liver - not a cannibal, am I!!!

In case you are not sure why this is important - if the bone marrow suffers too much they would have to stop treatment and obviously that wouldn't be good news at the moment.
 
So I am carrying on with the current treatment every two weeks in general for another 2 months till the next scan (mytomycin - c and 5 FU which are both chemo drugs) - however there will be a three week break in September because Paul and I have actually decided that enough is enough and we have booked our honeymoon! Hurray! In good old family tradition (my Portuguese side of the family) we are off to the beautiful islands of Madeira and Porto Santos (they are Portuguese islands for those of you lacking in geographical knowledge ; - ) )
 
The other very good news is that My mum's operation seemed successful and she is supposed to be coming out of hospital later on today.
 
Lots of love,
Raquel XXX

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Tuesday 01/09/09

OFF TO SUNNY PORTO

Dear All,
 
Unfortunately it is chemo time again today and then we are off to Porto on Friday to see my parents and the rest of the family before we then head off from Porto to Madeira on Tuesday for a nearly two week honeymoon break. We won't be back until the 22nd of September when I am going straight back into Chemo. I am very much looking forward to my three week break from chemo, the honeymoon of course, seeing my family, hopefully seeing a lot of sunshine (been quite miserable here mostly) and just enjoying being with Paul.
 
We have just come back from a wonderful walking weekend on the Gower peninsula near Swansea in Wales; I managed to walk on three consecutive days and managed to get about 21 miles under my belt for those three days. I am extremely pleased and proud of myself. My leg has only started to play up a little bit but otherwise I have been feeling ok. Had lots of nice fresh local fish too, it was just nice being able to enjoy food again (I can't really eat much the first few days on chemo).
 
Last week I have been on a course at the Penny Brohn Cancer Centre in Bristol. It was a wonderful experience giving me lots of reassurance and hope and tips on how to cope better with chemo etc. I had the impression that most consultants and course participants I met there were quite surprised and impressed by me. I don't think anybody expects someone looking quite so well after over a year of almost constant chemo. Interestingly the nutrionist told me to be less strict with myself especially when on chemo; I guess the happy factor is very important, too. And in fact the doctor I saw there even suggested a two months break from chemo and with that coming from an ex oncologist I was quite impressed but have to say I am not ready at the moment for taking that risk yet. I shall be trying (and am) to get properly into meditation and have been working a lot with imagery to get rid of the nasty buggars on my lungs. I am hopeful that the scan results in October will be even better than the last ones. Fingers and everything crossed. I came back very relaxed from Bristol but unfortunately was then 'attacked' by a nasty mouth ulcer which made me miserable for a couple of days. I can recommend this place to anyone suffering from cancer or having a dear one affected by cancer. I am going back on an even longer course there in mid October (5 days Retreat)
 
We have also been able to catch up with friends from a far over the last 2 weeks which was very nice, too.
 
Oh, and we went to see Harry Potter 6 and I am also half way through book 6! yes, Lynn, you should get those books back soon!
 
Well, I hope you have made the most of the summer and are looking forward to a beautiful autumn (one should never give up hope). I shall finish with a nice poem for a change:
 
Hope is the Thing with Feathers
 
'Hope' is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all,
 
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
 
I've heard it in the chillest land
And on the strangest sea,
Yet never, in extremity,
It asked a crumb of me.
 
by Emily Dickinson
 
Love,
Raquel XXX

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Tuesday 29/09/09

BACK FROM SUNNY PORTO

 

Hello All,
 
Its been a few weeks since I last said 'hi' so I thought I drop you all a line or two.
 
We got back from our wonderful honeymoon happy, relaxed, nicely tanned and well fed (I have probably overdosed in Bacalhau, the Portuguese traditional dish of cod which is simply delicious). why do these things have to end?

So we returned a week ago, had a day's break and then straight into Chemo the following day. Now I am already feeling better again, it was hard coming back to the chemo though after having had such a wonderful time in Madeira. It is such a beautiful place, everywhere there is beautiful, the mountains, the coastlines, the levada walks, the gardens, the sea and the weather was very nice to us, too.

We managed to do some walking as well and I surprised Paul with the speed (well for me it was speed) I got up a very long hill. Perfect training for my next mission (climb Snowdon which is the highest mountain in Wales) which I will be attempting this week. Wish me luck - I have tried twice over the past two years and have failed. Although one time I was nearly at the top!! 
 
We also swam in the sea which I haven't done for a very long time so I appreciated the fact even more that I have got a port and not a Hickman line for the chemo infusion as it allowed me to do so. I would have been terribly jealous if I hadn't been able to go and swim because the water was so incredibly clean and there were some gorgeous natural pools between volcanic rocks- I just had to tell Paul to drop the agenda, get our swimsuits and have a swim! I guess these are things you learn from cancer. Seize the moment!

We also went to see my parents - and my mum (who recently had a tumour removed from her breast) was zooming about as usual, so hopefully that's good news. Saw nearly all the lovely cousins in Portugal which was nice as i didn't really have time for them or anyone else at the wedding, which of course is normal - it s just me who didn't realise that it would be that way. Paul helped my dad a lot with harvesting the grapes, which did put a big smile on my dad's face, which was nice to see. I also helped a little bit and found it surprisingly relaxing.

The last few days we have been rather busy. I have been enjoying the garden a lot though. All my bulbs I had dug into the soil in mid June have finally decided to start blossoming, so I have got loads of beautiful Gladiola and Freesias added to the rest of the remaining flower galore. I hope winter will hold back a while as I love autumn.
 
PS If anyone has tried to ring my parents they are having serious problems with their phone line. It is n't working at all at the moment and I haven't got news yet as to when the line will be back up and running.
 
Anyway, just thought I 'd check in. Lots of love,
Raquel XXX

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Wednesday 07/10/09

YES IT'S THE DREADED COLD

Hi All,
 
Just wanted to check in as I will not be contactable via email for a while. I had to postpone chemo to tomorrow as I have finally had to surrender to a cold. I am saying finally because of course for someone on chemo the threat of infection is high and I haven't had a cold for a very long time. So before you ask I hence haven't climbed Snowdon last week either as when we got there I woke up in the morning and couldn't even speak at first and from Sunday I am off again to Bristol to the Penny Brohn Cancer Centre where I will be until Friday the 16th on a course.
 
We have had some kind of good news today - my mother has finally had the result from her biopsy and the good news is that it hasn't spread anywhere, the other good news is that she won't need radio or chemotherapy and the not so good news is (drugs are never good!) that she has to take a hormone drug called Anastrosol as her cancer has been caused by an hormone imbalance common in older ladies passed the menopause (well that is as much as I worked out by reading on the cancer research uk website as the doctors didn't explain any of that to my mum)
 
Apologies to those of you to whose emails I haven't responded yet but as usual it has been one thing after the other here . . . we are trying to get Paul's business going and there are always other things to do, too, and especially when you have a cold you don't get that much done anyway. . . .loving our new home and glad we are getting it cosy just in time for those long dark evenings.
 
Lots of love,
Raquel XXX
 

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Thursday 22/10/09

GOOD NEWS

Hi All,
 
Just wanted to confirm some good news and oh boy am I glad I am the messenger of good news!

Had my routine CT scan earlier this week and the results today and no new lesions, disease is static and the fracture on my pubic bone has healed. My bone marrow is doing amazingly well and so are my bloods.

They are quite surprised really at the hospital but I knew deep down that I am on the right way.
 
Lots of love,
Raquel XXX

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Wednesday 18/11/09

HAPPY DAYS

Dear All,
 
Guess this update is going to be quite long - sorry - but then you haven't heard from me for a while.
 
This is mostly due to the fact that unfortunately very shortly after the good news from the CT scan I started suffering serious pain in my leg/pelvis/groin area - it has all been rather nasty and I don't want to go too much on about it as it has been quite upsetting for Paul and myself and we don't want to dwell on the negatives.

I think it may have been caused by acupuncture that I have been trying out to deal with chemo side effects as both times I had the acupuncture the day after my leg went mad. I had to promise Paul to stop the acupuncture which I think was a good decision . . . 

I know it works for a lot of people but I seem to have had a very strong reaction to it.so I saw the mad prof about it who gave me stronger painkillers that didn't really work either (he did say to come back though if not getting better).

I then resorted to my own painkillers (Alka Seltzer XS) which seemed to work better for me as I then managed to climb some steep hills in the Lake District despite it all. And for those of you who want to have a go at me for not resting and whatever I can reassure you that the endorphins experienced in the process well made up for it.

Anyhow pain was finally getting better (possibly also thanks to a Tens machine) although still loitering about so I went to see an Osteopath this Monday upon recommendation from a lady I see for healing and counselling. And guess what? I have a twisted pelvis and all is quite in a mess apparently - needs loosening up so I have been doing gentle exercises 3 times a day and I am delighted to say that last night I had my first painkiller free and pain free night in a month. I am quite jubilant about it.
 
Now onto more highlights - in short version

I finally finished all the Harry Potter books some time ago and if someone can explain to me how the sword of Griffindor gets into Neville Longbottom's hands at the end of book 7 I would be most grateful (and I know it's coming out of the sorting hat but how did it get in there in the first place?)

Went to see The Editors and a-ha, loved seeing a-ha again more than twenty years on from when I saw them the last time - although it was quite a different experience this time (Paul responsible for both concert ticket bookings)

Went to see two Bonfires and Firework displays this year for Bonfire night (5th of November) in order to make up for not being well enough to go out for Bonfire night last year.

We had a wonderful, wonderful break in the Lake District a couple of weeks ago. It mostly rained but when the sun came out it was just so beautiful. I absolutely loved being back where we got married (we went back to the venue and where we had our pics taken as that was by a lake and a nice walk) - all I can say it was endorphins galore. Anyway I have attached some pics to cheer you up - I hope you like the ones of me on top of Loughrigg Fell and Helm Crag.

My mother in law organised a little show to raise money for the Beating Bowel Cancer charity and the children's heart unit last week and I was asked to go on stage to accept the cheque. I said I would but not to expect a speech. and of course there I was standing there talking about Bowel Cancer! I just been wanting to raise awareness about the disease for such a long time so how could I not have said anything!! I also made some cupcakes which were sold in the break to raise more money and they got sold out in minutes - will try and make more next time if the opportunity comes up again.

We are off to Hamburg/Germany tomorrow to visit my brother, sis in law and nephews for a long weekend - we are very much looking forward to it and I hope Paul will be able to make use of his new vocabulary (Flugzeug, Zug, Auto, Laster, Feuerwehr, Polizei, Krankenwagen - all what little boys talk!)

The month break from the Chemo did me good by the way -  no mouth ulcers to report and hands are doing very well. Well , the latter is actually down to my new 'potion' that I made up myself out of EXtra Virgin Olive Oil and a few drops of Lavender Oil. it works wonders, I can recognise my hands again and I can only strongly recommend it for any dry hands. Not sure if simple Olive Oil will do the trick or if you do need the lavender - the oncologist suggested if they should run a trial to find out . . . joking of course but he took a note and hopefully it will be passed on to other suffering patients.
 
Right, probably forgot lots of other things that have happened lately but must dash.
 
Lots of love,
Raquel XXX

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Wednesday 23/12/09

Christmas.... German or English

Dear All,
 
Just a brief update from me. It has been a while since I last wrote but I don't think this much has actually happened.
 
Been having Chemo every two weeks but now I am having another break until the end of January. I am really excited about it as it means I have more energy. The pelvis problem has remained under control for which I am very grateful. My oncologist is surprised and pleased how well I am doing and thanked Paul for looking after me so well. I am still trying to convince him that all the other things I do alongside of chemo have made a difference.

He suggested I should write a book. I thought he was joking but Paul thinks he was actually serious. My Macmillan Nurse supported this, she thought it would help other people if I did. So maybe it is going to be a project for 2010 and probably 2011 or longer ???
 
We are planning on having a very chilled and quiet Christmas - having to cook the Turkey (organic and free-range) will be the major challenge as we have never done this before. We are looking to combine our two Christmas traditions - the German and the English one as it was the German Christmas I grew up with and is what I am used to. So we will probably open half the presents on Christmas eve and the other in the morning.
 
The New Year we will be celebrating in York with our walking group. I am still going walking although haven't done much lately. Have been twice this week in the snow and sunshine though - it just looked so beautiful . The frosty trees against a bright blue sky. . . sorry, I know you are probably all fed up with it as it has been a major obstacle for many people having to travel in it.

Have started little work outs on a cross country trainer in our living room though as my mum sent me an article about some recent studies confirming that exercise is good against cancer. Still doing daily meditation which seems to have had a calming effect on me and of course lots of baking. Even my sugar crafting teacher from last year would have been impressed about the perfect shape of the fruitcakes I have recently made (it is a birthday heavy season in Paul's family)
 
In the New Year we will go on a cruise trip for two weeks to the Caribbean. Paul is turning 40 and wanted to celebrate this 'ageing event' abroad. We have picked a cruise for people who don't do cruises and we are very excited.
 
So there we are really. Another year gone by. We watched 'A wonderful life' the other week - such a beautiful film - it got me very emotional indeed. And once again I am looking forward to a magical Christmas.
 
Lots of love - Merry Christmas and A Happy and Healthy New Year to all of you,


Raquel XXX 

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Wednesday 27/01/10

Oh To Be Back In Barbados Now That Winter's Here

Hi All,
 
I am sensing that some of you have been worrying about me because I have not send an update for a while - so here it goes.
 
We had a lovely Christmas - it all went to plan, turkey and all, nice, quiet and relaxing, just how we wanted to spend it. Can't believe that's been a month.
 
Then of course we spent New Year's Eve in the beautiful city of York, we had a bit of snow also and just spent a lovely few days there. One evening Paul and I went on a ghost tour around town and Paul 'got picked on'. 'you - the big one' Paul had to act as a guinea pig at nearly every stop and because I was with 'the big one' I got drawn into it, too. We haven't laughed so much in a long time. It wasn't in the slightest scary though.
 
A few days after Paul turned 40 and we went on a Cruise to the Caribbean the very same day. Despite the snowy conditions in Birmingham we were only delayed by about 2-3 hours so we got off lightly. Paul was delighted when he realised thanks to the different time zone he would have an extra 4 hours to celebrate his birthday.

It was our first cruise ever and I have to say I found it quite an ideal way of travelling for myself under current circumstances. Paul loved it, too, and we are hoping to go on another cruise again soon. It was stress free, we had a nice cabin with even a fridge (no window but you get used to that), food 24/7 and plenty of fruit, nuts, seeds, salads and veg so no problem for a wannabe pescetarian like myself (= eat meat rarely but eat fish regularly).

It was lovely being able to have breakfast on deck or sailing away into the sunset on the evening. Weather was nearly almost near the 30 Celcius mark although we were unlucky in that we had more than the usual share of Caribbean rain. There was entertainment on board every evening (acrobats, comedians, music, tribute bands, quiz etc.). The ship takes you to your next port of call overnight so you don't need to worry about getting there or spending hours in a car driving to your next destination (well, that wouldn't have been so easy on water anyway.

We visited 11 islands (Barbados, Tobago, St. Lucia, Grenada, Isla de Margarita, St. Vincent, Barbados (again), Tortola, St. Kitts, St. Maarten, Antigua, Dominica and back to Barbados). Each island was somehow different with its own character but also of course lots of similarities between the islands. It was wonderful coming back to Barbados, where I had been twice before and we had our very own personal island tour with my mum's pen friend Sheila, who we met again twice on this trip (as well as the rest of the family), which was a great bonus. We also swam with dolphins on Tortola, which of course was a highlight as I think they are the most wonderful creatures on the planet, I just absolutely adore them. It was so nice to see people smiling broadly, too, on this experience. We also swam with turtles in the sea which again was a great experience and we went snorkelling - I just love the world under the sea so I am glad I was able to do it.

If you asked me which one was my favourite island then to me it is still Barbados, but also Dominica (the friendliness of people and the purity of nature on this island were striking), I also loved Tortola (one of the British Virgin Islands) and Isla de Margarita (Venezuela) maybe because it was quite different as heavily influenced by the Spanish. Well, really they were all beautiful but also there is a lot of poverty on most islands and that's not what you first think when you dream of the Caribbean. Most islands completely depend on Tourism as their only income and it is very noticeable.
 
So whilst i was out there my pelvis/right leg were bearing up on mild to moderate painkillers and I was able to enjoy our holiday. Unfortunately the day we came back matters in that department got worse and I have been limping about for the past week now.

I have been to see the osteopath twice who confirmed that the muscles in this area are in quite an angry state and we are quite sure now that this is all down to this abscess cyst (be it cancerous or not) on my ovary that I have been struggling with on and off for nearly two years now.

So basically he can give me some relief but unless something happens with this cyst that's all he can do. So I have now been on heavier painkillers which are making me very tired and sitting in front of the pc isn't the most comfortable position so I haven't really felt like emailing much. Apart from this I had actually been feeling great on holiday, I had lots of energy and felt generally much better which was a sign to me that the chemotherapy  in past months was to be blamed for my tiredness. So the break has done me really good. I am now awaiting scan results so I should let you know the outcome this week.
 
We were hit by reality coming back from holiday in more ways than one. One of my best friends Lynn Hodges has been diagnosed with breast cancer and it has been hard to come to terms with this. After all it was Lynn that came with me nearly 3 years ago to hear the dreadful news that I had cancer - how could we have ever imagined it could be her in a similar position so soon?

I saw Lynn on Friday though and it was great to see that like me she certainly has got a lot of fighting spirit and she looked so well, too. In addition to this my 'step' grandmother is in hospital, I know she is over 90, but it was still a shock.

On the good news front my mother had some more tests and all is looking well.
 
So, I think this is all the news for now.
 
Look after yourselves,
 
Lots of love,


RaquelXXX

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Friday 29/01/10

CT Scan Results

Hi All,
 
It has taken me a little longer than usual to digest the news of my most recent CT Scan, so I am sorry for not sharing it with you sooner but it has been a rather confusing 24 hours.
 
Basically Paul and I went to get the results yesterday afternoon and unfortunately we only had doom and gloom from the oncologist.

The nodules on the lungs have got worse again basically and there is a small lesion on the liver, too. I was very surprised because I had been feeling so well of late (probably thanks to no chemo) and just couldn't believe it.

What has been a problem for me though has been the pain in my right thigh/pelvis but the oncologist just wasn't very interested to talk about it, he said the size of that had stayed the same, the pubic fracture was still showing as healing and there wasn't really a reason for me having this pain. I even had to argue with him what sort of pain I was experiencing (he claims I have nerve pain whereas I know it is mostly muscular pain and sometimes nerve pain).

Anyway it wasn't a nice meeting and apart from me telling him off about being so negative and telling him that his negativity didn't work for me and receiving an apology and a rephrasing of a sentence I took particular offense to there wasn't much to be happy about. Paul cried his heart out and it broke mine to see him like this. I agreed to go back on a chemo drug I have been on nearly 3 years ago (Oxaliplatin) since recent tests from France have shown that people can improve on this drug if they never progressed on it before and haven't had it for over two years - I fit into that category. So I am going to give it another go. I have also decided to make friends with the drug to get optimum benefit from it.

So this morning Paul took me to the Osteopath and I decided to read the report from the Radiologist (Roentgenexperte) on the way in the car and to my great surprise the last sentence of the report reads ' The abscess cyst in the right pelvis area has significantly reduced in size and is now barely visible'. It took a while to sink in as this cyst was 10cm (about 4 inches?) in size 3 months ago at the last scan and now it is basically shrunk a lot.

So, how come the oncologist never mentioned this to me? How does he make sense of it? I don't really make sense of it myself apart from that I have been concentrating on this area trying all the stuff I learnt (Imagery, Meditiation etc). As this is where I have been experiencing the pain and I haven't felt any discomfort from the lungs I haven't really paid them much attention lately.

Fact is the cyst is down to a minimum. Question remains where is the pain coming from?

Fact is something I am doing is working and if I can get rid of a 10cm size cyst then I am sure I can get rid of little bugger nodules on my lungs, too.

it seems a miracle at this stage but I don't care - what this has done to me is wiped away my disillusion and doubts that all my efforts I was putting in in addition to the orthodox treatments had come to nothing (well, it felt like that after the meeting yesterday).

I will now carry on and focus on the lungs mostly and I am sure in 2 months time at the next scan the picture will be quite a different one again.
 
Lots of love,


RaquelXXX

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Saturday 20/02/10

At Least it's My Birthday

Hi All,
 
Not going to apologise for the long communication break as I cant help it if my pelvis doesn't like sitting on front of the computer for long periods of time. Today is a good day so far with little pain - so hear I am!

That was one reason why I haven't written - the other reason was that I don't really like sharing bad news and it has been quite a mixed bag in recent weeks. We have been very busy with tests and appointments and now I finally kind of know where I am and I also have some good news.

Just wanted to give you a brief update of what's been happening.

Good news: Cyst in pelvis which had measured 10cm and was believed to be cancerous has definitely gone
Bad news: found lesions and fractures in bones and an oedema (swelling) in muscle in pelvis area hence the pain!

This was found because the osteopath that was treating me for the pain said there is something really wrong here they should do an MRI (Kernspinn) or a bone test. I went to see the surgeon that took my tumour out nearly three years ago and he referred me straight away. In fact I went for a scan the same evening!! did that make me feel important for once - oh yes!! 

Then I was supposed to have the different chemo drug combination of oxaliplatin and 5FU the next day and my dear oncologist messed up my charts and so instead of being treated on the Tuesday as I like it I was told I had to wait til the Thursday.

Of course no one tells Raquel to wait two days and have her weekend ruined so I asked the nurse to try and move it to the Wednesday at least and when they had no luck I asked if I could ring the oncologist myself. Needless to say - for those who have worked with me - the charts were faxed through in time for my treatment to go ahead on Wednesday. . . much to the great astonishment of the nurseing staff at my hospital; they thought it was bloody hilarious that they had been told a definitive 'no' and all of a sudden it was all happening. So those of you who know me well will probably now think 'thank god the old Raquel is still there' and that is exactly how I felt.
 
So then I was lined up for a bone test (because I asked for it!!) and I also asked to see a Radiotherapy specialist after it was mentioned that it might help although the oncologist apparently didn't think it was quite worth trying it because of the side effects but I thought I'd rather hear it from the horse's mouth. In the meantime I read up about radiotherapy to the bones for secondary bone cancer and it actually sounded very promising. Pain relief in 70% of people within a few weeks and also a better chance for the bones/fractures to heal. When we saw the radiotherapy specialist yesterday this was mostly confirmed and side effects shouldn't be much either. I will probably start treatment this week so I am delighted!
 
Oh, and I have seen the oncologist again this week who was like a changed man. Not sure if anybody had a word with him but he never said a negative word to me and was all happy (mostly because I told him the pain was already getting better since the first and now second lots of chemo that I had). He also told us that the surgeon asked him in their big consultants' meeting where they discuss individual cases like mine 'whether he thought I was an interesting patient'. He told us with great enthusiasm that he responded with ' Oh, VERY interesting, I am fascinated by her. And I have never learnt so much about alternative medicine from any of my patients.' He also told them that I had bought him a book last Christmas (Anticancer - A new way of life) and the surgeon didn't believe him, he thought he was pulling his leg.
 
I have also gained hope again from a DVD that was recommended to me by my aunt Ille. The Living Matrix. I also read up on someone else's story on the beatingbowelcancer website which resulted in me concluding that my journey has been like a walk in the park compared to hers and I have no plans whatsoever to give up hoping that one day I will be healed.
 
Speaking of healing I have changed my healer and feel much better for it - she comes to my house and doesn't want a penny, she is so good. The other healer I had seemed quite money driven. Also added a few more supplements to my never ending list 
 
Hubby came home from his day volunteering at the local hospice the other day and brought the great news that this woman who he has been treating for the last few months has just had a test and her bowel cancer has disappeared and she hasn't had any chemo or anything like that as the poor woman had two chemos and lost her leg some time ago so nobody was really looking after her medically anymore and now her cancer has gone - so you see it is bloody possible!!! Not sure if my husband had anything to do with it but I reckon he may have some hidden talents (he is far too shy to acknowledge them). And yes I am getting lots of treatments of him, too. . . . fingers crossed.
 
Paul is taking me to the Lakes again for a long weekend (Thursday , coming back Sunday) next weekend -yippee - it is my birthday the last day of the month and I am getting quite excited and am hoping I will be able to hobble around a bit more than lately.

Birthday cards to this address are very welcome Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet.
 : Peppermint Cottage, 22 Lavender Lane, Stourbridge, DY8 3EL

Did I say 'brief' update? 
 
Lots of love  


RaquelXXX

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Saturday 29/03/10

Another Birthday

Dear All,

 

You probably noticed that you haven’t heard from me for quite a while . . .  well, so much has happened . . . it has been a real rollercoaster ride this past month . . . so much going on . . . , so then I suffered from severe writer’s block, and now I am starting to panic if I leave it any longer there will be just so much to report it will be getting harder and harder to write.

 

First of all I want to thank those of you that sent me a birthday card or an ecard or birthday wish by text/email – it made my birthday even more special and when you are in the situation that I am in, special is very important – so thank you, you kind souls.

 

Talking about birthdays I am celebrating another birthday this weekend – it has been 3 years since my cancer diagnosis – quite an achievement it has been. I woke up yesterday and realised that actually I am dead proud of myself! Can’t believe it has taken me three years to realise that I should be!!!

 

Anyone wanting to join me in celebrating is invited to sponsor me for doing the Race for Life again this year. Go on I know you want to- here is my sponsor page www.raceforlifesponsorme.org/raquelfletcher  I have already achieved 50% of quite a high set target but I am hoping to get to the 100% obviously. And hopefully when Brenda (& Co?) gets her drums banging again we shall see figures rising, too.

 

So, you probably would like to know if we enjoyed our weekend in the Lakes, which is where we went for my birthday. We did indeed despite me fighting off a chest infection at the time. It was gorgeous, white mountains and sometimes sunshine . . . as my walking wasn’t very good back then our programme looked different. We went shopping in Ambleside, went on a lake cruise on Lake Windermere (saw where they filmed Coronation Street ‘No, we will NOT go to the police’ (says polar neck Gail Platt, sorry McIntyre) – sorry only those of you that have watched it will get what I mean)). Went to where we got married – OF COURSE – yes snow on the grounds of High Close, it was strange . . . went to Dove Cottage where William Wordsworth had lived for a few years and to the Wordsworth Museum, all very interesting. And also went to Beatrix Potter Gallery in Hawkshead.

 

On the first of March we had another appointment with my surgeon who has been very supportive since we approached him for help. He gave us the good news from the Bone Scan that showed that ‘only’ the bones in my pelvis had been affected and there were no cancerous lesions anywhere else in my bones. A big sigh of relief for us as of course my oncologist’s flippant comment when we last saw him was ‘I expect to see little deposits all over your body within your bones’ had played on my mind. . . Good thing that what one expects and what one finds isn’t always the same. Maybe this was another situation where what one expects would have been better off kept it in one’s mind rather than speaking out loud and sharing such ‘wisdom’. Anyhow, I am digressing.

 

The surgeon had more to tell us and he looked rather nervous. He asked if I had ever considered or looked into supporting myself with herbs!!!!! Paul and I nearly fell off our chairs and looked at each other in great astonishment. An orthodox doctor talking herbs!!! The world had gone mad, surely, I nearly pinched myself to make sure I wasn’t dreaming. To cut a long story short, Mr. P’s mother in law had been diagnosed with a very aggressive form of cancer 13 months before and was given 8months to live without chemo and 12 with. Since the lady is 77 she didn’t want the chemo and decided to make most of what she had left. 13 months on she is still here, bouncier than ever and Mr. P couldn’t quite understand it as she had no medical support. So he found out she had been taking Turmeric together with hot water and manuka honey and a bit of lemon for taste. About a teaspoon or 2 a day. Apart from that she wasn’t doing anything different. (she is an Indian lady and lives on an Indian Vegetarian diet). Hearing this from an orthodox doctor who says of himself he would have never believed it if he hadn’t seen it with his own eyes was so unbelievably encouraging, it really was like someone had given me an elixir that actually worked. So, needless to say I am back on the Turmeric and so is most of my Bristol 10 group (group of people I met at the Penny Brohn Cancer Centre in Bristol and anyone else I have managed to share this with – spread the word, folks!)

 

That week Paul organised a late surprise party for my birthday in a Curry House – I think about 30 turned up. I didn’t have a clue and Paul is extremely pleased with himself that he ‘managed to pull it off and fool me out of all people’. For some reason he thinks it is normally impossible to keep anything from me . . . and he blames the chemo that I didn’t notice what he was up to . . .

 

 

I also had a couple of meetings with a surprisingly normal and nice oncologist who also deals with radiotherapy (my chemo guy only deals with chemo). It was quite obvious that he had been warned about me by my chemo guy – and he confirmed this when I asked. He also obviously expected a long list of supplements as I had to state exactly what I am taking. I was a bit nervous about showing him my rather long list but he said ‘Come on, I am ready for you’ . . . Oh, what I would give to play mouse and listen in to their conversations. . .

Then I started radiotherapy (RT) the following week, which was to work on the cancer in my bones (and the tumour in one of my muscles in the same area), which had caused fractures in the pelvis area. The pain had been so bad in recent weeks and my mobility was suffering severely. I had 5 sessions Monday-Friday, each day. All looked amazingly well at the end of the week as I was already getting my mobility back and the pain seemed to get better each day. I was so delighted that I could drive again and walk up stairs normal and put my shoes and socks on without help etc etc (because of the tumour in my muscle in my right leg it severely impacted on my mobility in that leg). So, you can imagine I was bouncing (well tired and sleepy but utterly delighted).

 

But of course nothing runs a smooth course with me.

 

So a week after the treatment had finished I started to show side effects to a degree that have made my life a misery. I have been to hell, I think but I am definitely back now! Finally Friday after drinking gallons of Aloe Vera juice and peppermint tea and nursing my wounds with Aloe Vera Gel from an actual plant and supplementing with lots of Slippery Elm and Probiotics, I started to get a bit better and it has improved a lot since. I also want to mention that I am thinking of complaining to the hospital as all they told me was to use Aqueous Cream!  Aqueous Cream up my . . . . is all I can say about that (yes, I am bloody angry!). Anyway, I am still sitting on several layers of soft pillows so now I am hopeful that each day from hereon will get better and better again. If you are wondering what it is . . . well, I had RT to an area where your skin is quite sensitive and thin (apart from in my case the bum itself perhaps ; - )) and daily tasks as passing urine and stool have become an absolute nightmare .I know I have never given birth but I think the pains were on that level and that’s each time I went and one of the side effects is that you go a LOT (I know that is too much information for you but I don’t care anymore). Not sure how I have managed to stay sane to be honest . . . but I have got Paul of course and at least I have been able to sleep ok , that helps - and Desperate Housewives and the Mentalist have been back on . . . oh, and I have been busy going through all of your emails on my work laptop (my work email) as I am retiring at the end of the month. Reading through your emails and my updates has made me laugh out loud, you don’t know what a funny bunch of people you are!! I have copied them all over as I found that some of the comments will be a great inspiration for my book. Oh boy, you have given me so much food for thought, you really haven’t got a clue! No need to panic, I won’t be mentioning any names unless you insist of course.

 

Sadly, there has also been the news of one of my dearest companions passing away. She started her battle with bowel cancer almost the same time as I did, so it is something else I have been trying to come to terms with.

 

And there has been more news but if I carry on I will end up writing my book here and now . . .

 

Oh, I do want to tell you though how Lynn is, we have been seeing quite a lot of her and husband Nigel and she was doing remarkably well. The pre operation chemo seems to be working very well as her tumour has severely shrunk already. One more chemo to go for Lynn and we will know more after – I have just found out though that things have caught up with her last week and she has been sleeping through most of it.

 

Oh, and my parents are coming over in two weeks time so I do hope I feel much better by then. Having read through all the emails from 2007 brought back those funny stories about that famous chef that my mum has a fascination with, Gordon Ramsey, or as my mother would call him ‘The F - - - - -‘. So I am hoping one of his programmes will be on when they are here as I have got to see her reaction!! I bet she’ll go ‘Oh there he is the F - - - - - ‘, would love to see my dad’s face.

 

The carpet in the hallway stairs and landing was laid this Friday and looks brill. Dylan, I am sorry the carpet went to the tip before I could remind Paul to keep it for you, I know you wanted it 70ies style and Retro but it’s too late now.

So, yes we are getting the house ready for my parents’ pending arrival. . . Paul even painted the front of the house bits so Peppermint Cottage is standing tall and proud these days.

 

So, that’s it, the last document I have ever written on this work laptop for old memories sake – going to say goodbye now before it blows off in my face (it is quite old)  but I shall invest in a new one as I much prefer sitting where I want rather than being confined to the computer upstairs.

 

Signing off now,

 

Princess on the Pea

XXX

 

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Wednesday 21/04/10

Off on Holiday - Volcano Permitting

Hi All,
 
We are off on a holiday tomorrow for two weeks - it looks like we are going to be one of the lucky ones and get out of here despite the volcanic ash cloud.
 
Sadly, my parents are stuck (and particularly my dad reminds us of his 'dreadful fate' every few minutes) and we had to book them on a flight a week later than they had planned to go home. Accepting things is not something my parents do easily and yes it doesn't help that we are going away tomorrow and are having to leave them on their own for a few days. It has been difficult for me not to get too stressed with the situation but I need to look after myself and we can't just cancel or change our holiday now anyway. We actually picked the perfect moment to get away in terms of having a break from treatment. . .
 
For the first time in over 3 years I have been refused treatment last week as my platelets are too low (28 whereas normal is between 150-400). they think it is because of the radiotherapy to my bones which targets the bone marrow. My haemoglobin has also been rather low so I needed a blood transfusion on Friday and am now pleased to report that I feel loads better and am bouncing around again (whereas before I was tired all the time and suffered from a very dizzy head ). I had a blood test yesterday which confirmed that platelets are improving (45) and HB is up again to a normalish rate so hopefully by the time we come back from the break all has recovered.
 
All the pain etc I have been suffering from is gone - so that is great news.
 
Mum is still loving Gordon Ramsey and after denying calling him anything rude at first ('this was when I was much younger') - remember three years ago!! - she couldn't resist when he started swearing and excitedly told my dad ' look , look what he is saying! and then happily joined in.
 
I am sure loads more happened but I can't remember now and still got stuff to sort before we go so I shall love you and leave you.
 
Oh, yes, of course - nearly forgot. Been on the Radio to raise awareness about bowel cancer, it was only short as of course that volcano in Iceland has a lot to answer for and kind of took over the news. . .
 
Signing off now from Mushroom War Peppermint Cottage (my mum chucked Paul's precious mushrooms (he loves mushrooms) out last week without asking (apparently they were mouldy) and the two have been exchanging idle banter ever since. . . the result was that Paul bought a big box of mushrooms and he has been cleaning mushrooms since Saturday. He thinks his life has changed since . . . as really he wanted to wash them with water but mum told him he should clean them with a kitchentowel. He reminds me a bit of Aschenputtel or Cinderella at the moment.
 
Please sponsor me at www.raceforlifesponsorme.org/raquelfletcher
 
I am definitely going now as my dad has just woke up from his afternoon nap and no doubt I won't have a peaceful moment now. He wants to have a party when he gets home to Portuga ( so my dear cousins in Portugal , listen out and ask him for an invitation)l, kiss the grass in his garden - yes, he is already staring at me over the edge of my new bright red laptop ; - ), no doubt he is thinking about what to ask next!
 
Lots of love,


RaquelXXX

 

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Tuesday 25/05/10

Back From Holiday and Targeting The Race for Life

Hello everybody,
 
I haven't been in touch for a few weeks because so much has happened yet again.
 
I start with the good news. We had a wonderful holiday on the Greek islands and around - weather was mostly fab, there was loads and loads to see in terms of sites and of course visiting the pyramids and the sphinx in Egypt for one day on a tour was kind of a highlight. I was overwhelmed that I made it there; it is quite so different from anything that we know.

Well, I could go on and on about the trip as we loved it but I will probably end up with a few pages and I know some of you find that too much to read. We were extremely lucky as we flew through the ash cloud without any problems. We returned to the UK on the 6th of May and got home just with an hour to spare to go voting. Luckily our polling station is literally across the road so we made it in time. The Brits amongst you don't need to worry, I am not allowed to vote nationally, just regional.

The next day we flew off to Stuttgart to Birke and Joschi's wedding, where I was witness and entertained the Swabians when my address was read out at the register office. It was fantastic being back 'home' although unfortunately very rushed. 6 days later we went to Corinne and Paul's wedding in Wiltshire - two delightful and beautiful weddings in the space of a week, well done to Mrs. Salden and Mrs. Ives for organising it all so brilliantly - we loved being there and of course followed with further celebrations of our first wedding anniversary - I can't believe how many of you kindly remembered and sent a card!!
 
Unfortunately we have had some bad news since and whilst recent scan results showed improvement in the pelvis/bones area it also showed an increase of metastases on the lungs and increase of the liver growth. It has hence taken me a while to gather myself and tell you as I hate telling you bad news. It was a very bizarre meeting when we were told the news as for the first time ever my oncologist was more positive than me!

I think that alone definitely was a shock but at the same time also gave me a wake up call and a kick up my backside. I think the only signal I gave him that I wasn't going to give up was when I fished my Race For Life paper out of my handbag and asked him to sponsor me.

He looked quite puzzled. So anyway, we seem to be reaching the end of the line for orthodox treatments. There is apparently only one more drug they can try now and then that's it.

They are not used to people being as tough as I am surviving against all odds so whereas they have a lot more options for people in the early stages they haven't for people in the later stages because the pharmaceutical companies are all about profit and there isn't enough to go around with the few of us that get to this stage . . . well that is what the oncologist said in a round about way. Maybe he is a bit disillusioned as well?

I guess it had come as a greater shock than usual because I have been feeling so well and looking great  - I even had the radiologists at the hospital fighting over me . . . one of them said to the other (had this from the x-ray nurse who told us) 'I have had it with you!! I get all the wrinkly ones and you got a young, fit, slim, tanned, long dark haired one with glasses!' . It did make us laugh. . . so you see despite all the toxins I have had to put up with for three years now I still manage to look good. 

So despite that I always knew this day might come it was still a big shock. But I wouldn't be me if I just accepted all this. I have come to the conclusion that acceptance doesn't work for me, I am a fighter and that is the way I have chosen to go.

So I am now exploring alternative and complementary options more seriously but of course one has to dread careful as there is a lot of hocus-pocus out there with people only interested about making money. But there are some good ones, too. I feel lucky that last year I went to the Penny Brohn CAncer Centre as I am now getting a lot of support from their doctors with lots of useful contacts and advise. I haven't fully decided which way to go yet but am exploring my options. The main thing is that I am back to myself and feel very positive again.

So your next question may be 'what can I do to help?'

I know you may feel upset or sad right now and of course you are 'allowed' to but I need you to stay positive for me. If you do come across any 'cures' or whatever, yes, please, tell me about them but only if you have looked into them yourself as it is taking me a lot of time looking through everything and that's quite tiring so that is something you can help with if you come across anything. I will add it to my list of options as I have done with suggestions some of you have made in the past.

And thirdly, if you have a few pounds to spare - please sponsor me www.raceforlifesponsorme.org/raquelfletcher even a few pounds go far in e.g buying a new mask for lab work etc.  It makes me happy to be able to help and a good flow of endorphines is supposed to be very healing . . . Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet.

That's it for now . . .will keep you posted on the next part of my journey through the helter-skelter of cancer.
 
PS For those of you who know and care about Lynn. She has had her mastectomy which went well. Not all of the tumour removed was cancerous. Some lymph nodes that were taken from the arm were cancerous but not all. She has just started a new course of more chemo which is making her very sick. She will have two lots and then another scan and then we know more. At the moment her consultant is very positive. So if you want to write to her, email me and I will give you her address.
 
Byyyyyyyyyyyyyeeee,
 
Lots of love,


RaquelXXX

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Wednesday 04/08/10

Like Reading Underwater and off on a cruise again

Hi All,
 
Guess it is time for a wee update . . .
 
First of all - Thank you so much to all those of you who have been able to sponsor me for the Race for Life. In the end I beat my target of £1500 by about £50 so I am extremely pleased and most grateful to you. An article was printed about me with piccy in the Express and Star, which is a regional paper, and was used to remind people to send in their sponsor money. So, I really feel like I have done something useful with my spare time this year.
 
Another huge thank you goes to all of you who still write to me although I don't always reply or take months to reply. Thank you for staying with me.
 
And now I am trying to think what I have been up to since my last update! ha!
 
Well, I have been happier as my days are not completely full with Diddy appointments and I have found some time for myself plus I have been able to get some stuff done lately as I have been feeling a bit better in myself and have more energy at least on some days! I have set up Paul's website and will be asking you if you could be so kind to visit it as it will help him to get into the Google search machine and promote his business a little more. www.treatyourselfholistictherapy.com It is not complete yet but at least it is there!
 
I have found some very good reading time of at least 2 hours per week and am pleased to say I have nearly finished Charles Dickens' Nicholas Nickleby. I get this reading time 33 feet under . . . when I do my hyperbaric oxygen treatment which is basically like a dive in a tank usually with one or two other people with you and you wear a mask. so not even I manage to talk while I have the mask on. So, I am pleased I am starting to tackle all these unread books on our shelves. . .
 
Tomorrow we are off on a one week break to the Western Med, another cruise, yes, as these seem the best way of travelling for me at the moment. This time we are flying to Palma (Mallorca), then onto Palermo (Sicily), Naples, Corsica, South France and Barcelona before we get back to Palma. I hope you aren't thinking 'What! another holiday!' as I have been quite upset lately with people in our walkinggroup making comments on how often we go on holiday and how we can afford it. . .  Yes, it is amazing how the human mind works sometimes! It is like they are jealous of us but how can you possibly be jealous of someone that had to retire on grounds of ill health at the young age of 39 and is fighting for their life? The only reason why we can afford to travel is because I had a pay out and I have insurances and Paul had a payout when he decided to retire to be better able to look after me and have a business that is more flexible around me. Oh, one wonders at the human nature sometimes.
 
Anyway, we are very much looking forward to escape as autumn seems to take over here at the moment.
 
Ah, yes, now I remember! We are off to Germany in mid August, to Frankfurt to meet Professor Vogl. He seems to be quite a capacity in his field (chemoembolisation) and thinks he may be able to stabilise Diddy on the lungs. Obviously  we think Diddy is in 3 areas of my body (lungs, liver and pelvis) but the one area that is really the problem at the moment are the lungs. Prof Vogl's treatment can be injected (I think) directly into the lungs and wouldn't affect any other parts of the body, so my healthy cells would be spared and I wouldn't have any of the usual side effects (me thinks -  I will know more once we have been!). I am getting scan results from my oncologist here before we go over but I am quite calm about them now as I have a proper Plan B.
 
I am still doing all the other things I listed in my last update, too, but like I said I have got a better schedule now and hence am a lot happier. A lot of my time still gets spent in the garden (despite the weather, of course). I have also recently been out walking (rambling) again, which was lovely although a challenge! Garden centres hold a constant attraction to me, too. Oh, and we have a little veg patch this year and just today Paul picked the first runner beans so I shall make them later for dinner! 
 
There are probably a million and one other things I wanted to tell you about but I can't remember right now so I will keep it unusually 'short'.
 
Lots of love,
RaquelXXX

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Thursday 12/08/10

Raquel is getting better

 

Dear All,
 
Just a quick note to tell you that we have only just come back from our wonderful trip - loved it and will tell you about it later - and went straight to the hospital for the results from my last scan which I had a few days before we went off on our cruise.

Anyhow - oh I am soooo pleased, finally a break! Disease is static - not visibly grown anywhere and some of the lesions on my lungs have actually regressed (smaller).

We are both so relieved but at the moment a bit too much to take in so I just wanted to share the good news with you and will be writing more the next few days.

 

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Tuesday 31/08/10

Raquel goes to Deutschland

 

Hi All,
 
I thought I check in to let you know how I got on in Germany with Professor Vogl.
 
It was a bit of an adventure, to be honest. Luckily we brought plenty of time with us. When we turned up at the time and date that I had arranged with Birdie (is less to type than Professor Vogl and Vogel  means bird in German for those English speakers amongst you) nobody knew about us. I kind of expected that  because of the way he had been on the email and phone (a man of not many words at all). So anyway after some back and forth and him clearly not really remembering who I was when I eventually saw him (he thought Paul was the patient) and the ladder being blissfully unaware due to lack of grasp of German language . . . we kind of got there eventually and especially after I had lightened myself of several hundred Euros for a detailed MRI scan. 5 or 6 hours later we finally left the establishment called Universitaetsklinik Frankfurt. The sparkling water and large flat tv screen in the waiting room did not make up for having to wait this long but the guy is a popular guy, very popular - we heard American, Aussie, Dutch, Spanish sounds in the waiting room. . . a lot of MS patients as well as cancer patients.
 
'Haben Sie einen Port?' (have you got a port) became the standard question in those couple of days which for an outsider must have sounded like an invitation to drink some portwine but in my bizarre little world it means a handy entrypoint for drugs.
 
The following day we got back to the hospital early (and I had to be without food which wasn't a good start as  I love my food). Well, early, that is after having got the tram in the wrong direction for too long we were actually late but in the world of Birdie of course that didn't matter at all. Another huge lump of money lighter and I got kindly invited to get ready for the procedure. My ipod and Susan Boyle (yes, I have got one too now!) rescued me from a panic attack whilst sitting in the little changing cubicle on my own for too long having had to leave Paul outside in the waiting area.
 
The actual procedure was short but horrible. Basically they put a high concentrated chemo from my groin through a catheter straight into one side of my lung. The theory being if it goes where Diddy actually is and not all over the body it is going to be more effective. Shortly after I was on planet cuckoo land and I was quite happy to be there - no pain just spaced out, yeah!!! Paul reassured me after that indeed we were travelling through an undercover car park for ages (me in bed) before they left me in a restroom upstairs (I think).  The kind nurse kept telling me about a 'Bettfahne' (well, I thought she did) which in English means bedflag. I couldn't really make a connection. I know it was to do with the loo and because I wasn't allowed to get up at all for 4 hours but I still kept seeing this flag that obviously wasn't going to be there. In the meantime a friend kindly explained that the word is 'Bettpfanne' (must be the local accent or maybe the misunderstanding derives from my spaced out state) and means kind of bedpan so I think you get the hint now. Anyhow I was quite happy in my bed and especially when I was eventually allowed to eat but then I had to go back and have a controll scan (to make sure the chemo had gone to the right place) and then I ended up waiting several hours again for Birdie to tell us it had gone to the right place.  So the second day we were there for 11 hours. I think next time I will just ask if I can stay in my bed for longer. I was just so knackered. tiredness was the biggest problem with this treatment and morning sickness for a week. I think the chemo had to come back out one way or the other. 
 
Whilst Birdie really isn't the talkative type he still manages to come out with the same useless comments re the state of one's illness as any other oncologist. So, i think when I am better I am going to campaign for a better communication course for oncologists.  When he told me how many metastases I have on my lungs I told him that I didn't need to know such detail. Well, I suppose he will have to get used to me. I will spare you the other comments. Anyhow on the good news front there was a lady there that has been seeing Birdie since 1998. She has bowel cancer with secondary's on the liver. She said he was an absolute ace. I also found out that the lady who runs a cancer treatment advise service here in the UK (alternative and complementary etc.) also rates him very highly as she has sent a few people over to see him and he has done miracles for them. So, at the end of the day, if it works I can cope with the rest of it. We are back in a month to have the other side treated and that's when he will check the progress on the right lung, which is the one he treated two weeks ago.
 
So Paul has now decided to learn German. I think he felt a bit traumatised by German nurses talking to him in German and him not being able to answer or help me in that way. He probably felt more like a burden and that I was looking after him because of the language issue.   
 
Tomorrow I am having normal chemo back here in the uK. The Prof thought I wouldn't be fit enough to have this treatment but my body has proved him wrong once again.
 
The cruise was wonderful by the way. Fab weather, fab ports, fab food, very friendly staff - had a great time and thanks for all the emails. I was amazed how many stories you could contribute of people being jealous!
 
Just been down to London for the fourth wedding of the year - what is going on this year, must be the year of the weddings? - one more to go! It was lovely, by the river in Putney, wonderful setting, delicious food, weather ok considering it is English summer, beautiful bride, friendly people - what more can one want? We also saw the Lion King, I thought it was absolutely amazing.
Now the weather seems to be improving and we went out for a little walk along a reservoir and the river so you see we still try and do as much as we can when I have the energy and time in-between appointments.
 
Anyway, am surprised how long this update turned out to be!
 
Byyyyyyyyyyyyyyyyyyyyyyyeeeeeeeeeeee,
 
Lots of love,
RaquelXXX

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Thursday 14/10/10

Keeping Away From Colds

I think I reported last when we had just come back from Frankfurt in Germany. The aftermaths of the treatment didn't seem so strong this time , however the lack of energy has still been getting me down but with the help of some magic drops from Germany (thank you Sylvia) to improve circulation problems (I generally have a very low blood pressure) and a blood transfusion that was finally authorised after a lot of nagging and complaining I feel a lot better now.

Having a lot more energy has lifted my mood, too, amongst other things. The thing is they don't normally authorise a blood transfusion until you feel close to death (sorry, but it feels the way) and I was constantly told my HB (haemoglobin) was too high to have a blood transfusion but luckily my oncologist saw sense in that I was 'symptomatic' despite the HB reading so we finally got somewhere. Hip hip hurray.
 
Now I am trying to remember what we have been up to the last few weeks. .. as a highlight there have been many meetings and visits by friends I hadn't seen mostly since our wedding last year. Lots of laughter and chatting, definitely a good cure.
 
We travelled around beautiful Devon and Cornwall to celebrate my friend's 40th. We had a wonderful time and October with its golden , warm light didn't let me down (I had told them to come over this time of year and of course it was pouring it down with rain for the first two days but things improved considerably after).
 
We also went to Porto to visit the family there and had a lovely time as always. We went for a long weekend. It was lovely to see nearly all the close family. Mum did 'try' to stress me out though as she rang on the night before our flight and said we should try and change the flights since they had forecast a hurricane and lots of rain for the entire stay (we only went for a long weekend). I decided to work on my positive thinking and we had wonderful sunshine for three days and rain only at night.

But of course there were also the moments of disbelief that one suffers sometimes with people's comments and lack of sensitivity. My great-aunt telling me about all these poor people that die from cancer and one of my aunts asking if I don't want any children - Hello!?! In the latter case I guess it comes from not thinking or perhaps from forgetting because I look well that it is actually impossible with the situation I am in and not quite at the top of my list of priorities when actually I am fighting for my life. 
 
On the last day we had walked to a place probably about 3 miles along the coast to eat my beloved 'Bacalhau' (Portuguese delicacy but really it is just cod Open-mouth smile) . One of my uncles and aunt came with us (they drove there) so they could give me a lift back as I can't walk that far at the moment or maybe I could but it would probably kick off my hip/leg pain more. Of course we didn't all fit into the car and my dad wanted to walk back on his own but Paul thought he should walk with him. Considering that neither speaks the other's language I got quite excited as I thought this was going to be an interesting language experiment. .And so it was! Both came home having learnt a few words of the other's language. Sea, seagull, sand, car . . .
 
Yesterday we went to the 'dive centre' where I get my oxygen treatment and fed the ducks with leftover Rick Stein (celebrity chef) bread from Padstow in Cornwall. There was a lot of fighting going on and maybe the ducks realised they were in for a delicacy. You wonder why we are feeding Rick Stein bread to ducks? Well, when I bought it I had forgotten that we would only be back home for less than 48 hours before we would travel to Portugal so by the time we were back . . .
 
This week I should have had chemo in the uk but my neutrophils (?) are too low. These are within one's white blood cell count and fight infection and illness etc. It is typical that after I had just come around to having the chemo (I had originally decided that maybe it was all a bit much together with the treatments in germany) I couldn't have it anyway.

So, I am trying to keep away from any people with colds and staying at home. I was hoping for the cloud to shift so I could do some gardening but it is not looking very promising today. \Never mind, there are plenty of other things to do indoors!!!
 
Byyyyyyyyyyyyyyyeeeeeeeeeeee,
Lots of love,
RaquelXXX
 

Thursday 18/11/10

Stuck For Words

Hi All,
 
Am a bit stuck for words at the moment hence no updates. I had physically recovered from the Frankfurt trip with better energy etc and I had even recovered mentally and started to see the funny side of things again.

Birdie (the prof in frankfurt) having a team meeting while he was carrying out the treatment on me (obviously acceptable in the world of Birdie) ; the 'raft' of German directness delivered with German precision (suddenly I started to feel for my English colleagues who used to be at the receiving end from me) - they couldn't glue me up which is what they normally do to the area where they went in with the catheter for one reason or another so because I am on Warfarin (blood thinner) they decided to put this very tight bandage around my hip area.

Of course that wouldn't have normally been a problem but a.) the bandage was cutting into my thighs and b.) it triggered the pain in my hip from the fractured bone big time.

So of course I was having none of it and the doctor had to be called. A very efficient young female turned up and told me it was either that or 'I would bleed to death' (sonst verbluten Sie'). Paul smiling along no matter what she said as it was all in German and he didn't have a clue what she was saying (all made me laugh later). I was not particularly impressed with the fact that I may bleed to death because I just knew I wasn't going to (My latest INR - blood clotting rate reading had been exceptionally low so not really a chance). the doctor murmured something about the problem of female fat deposits (oh yes, she did!!!) whilst putting a different kind and more comfy bandage around my hips.

Oh, and I had even recovered from the fact that Birdie rings the patients he has treated the following morning at 6am. A 'bliss' that we had so far escaped as his secretary must have been ringing our home number whilst we were happily sleeping in a Frankfurt hotel. This resolved I had to leave my mobile number behind and indeed it wasn't a joke, we received a phone call at 5.50am the following morning.

Now I am having some more Radiotherapy to my hip area as the bone pain etc. there had gone worse again (this was always expected and doc was surprised I didn't return sooner). The good news is that the RT is working already and after three of five sessions I can sleep again (somehow the pain always kicked off at night). I am more tired again because of the treatment but it is all under control!

So the reason why I am stuck for words is not because of myself but because of my friend Lynn Hodges. Many of you know her or work with her and sadly her spell in remission from Breast Cancer has been very short-lived. The B- - - - - - has returned and is causing her a lot of pain at the moment. It appears to have spread to the outside of her lungs and to her liver and I think chest bone. If I understand it right its the mets causing fluid pressing on her lungs why she is in pain. She is today in hospital and they are going to put in a drain to get the fluid out. She has also had her first chemotherapy treatment yesterday so we are hoping she will feel much better very soon.  I have only put so much detail here as she asked me to include her in my updates. Paul and I are very angry with her doctors, we really feel they have messed this up big time. I know that doesn't help but it is hard to watch them mess it all up, if they had got their arse (pardone my language) into gear they could have got it under control a lot quicker.
 
Change of subject now and more positive stuff.  We haven't really done much these past few weeks. I have managed to get the garden ready for winter with Paul's help and even put in some more bulbs for spring. Sat under the ash tree the other day which has now lost all its leaves whilst a bunch of starlings were chilping their little bodies out. It was an amazing noise, sounded almost like an alarm. It was lovely as a bright day, wonderful light and bright blue sky.
We went to Heidelberg for a day and met Birke there also who came up from Stuttgart (we combined this with our Frankfurt trip). It was lovely to see Birke and Heidelberg always brings back lovely memories when visiting their in the past (auntie and cousin ; - ))

We also went to see Lord of the Dance here in Birmingham. The crowd went completely mad when Michael Flateley appeared on stage and Paul looked around looking really confused. It was quite clear he couldn't understand what all the fuss was about. It was so funny to watch!

Well, I enjoyed it a lot and I am sure Paul enjoyed it, too, there being a lot of pretty lasses in short dresses. ; - ))
Oh, and of course we went to a local Bonfire and fireworks on Bonfire Night the other week. As you know I love my fireworks!

Now we are looking forward to christmas and the New Year and I have started wondering how I want to celebrate my 40th birthday next year.

And next week we are off to Hamburg to visit my bro and family and we will also be able to see my friend Cathy+her little boy Bruce on the way. So you see, lots to look forward to.
 
Lots of love to you all,
RaquelXXX

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Thursday 09/12/10

Sigh of Relief

Hi All,
 
Just returned from treatment in Frankfurt (yesterday) and the good news is that lungs and liver remain static (no growth).
 
So we can all sigh a big sigh of relief now and look forward to Christmas.
 
Still quite tired from the journey and treatment and usual adventures over there which I will write more about when I have fully recovered.
 
Lynn is feeling better since she had all the fluid drained from her lungs and she has now (yesterday) had her second bout of chemo. She has some pain in ribs because there is a bony lesion
in her rib so I gave her a few ideas what she can do to get improvement as doctors never seem forthcoming, you need to stay on their case all the time! Losing hair but doesn't care (oh, it rhymes) as long as chemo is working. I know that's the right attitude.
 
lots of love,
RaquelXXX

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Friday 14/01/11

A dark, windy, cold January day took my dear friend away

Dear All,
 
I have been very quiet lately because my dear friend Lynn has taken a sudden bad turn over the New Year. We saw her on the 27th of December and she was fine and days later she wasn't and she never recovered from that. It seems she had developed a lesion on her brain which caused a bleeding and that resulted in her rapid deterioration. There was nothing that could be done and that in itself has been very upsetting.
 
So Monday - a dark, windy, cold January day took my dear friend away.
 
I have been struggling to come to terms with this as Lynn was such a lovely person - in fact  one of the warmest, most selfless people I have ever met. Even in her last days she was more worried about me than herself. That was so typical of Lynn. I remember her bright smile and her mad laugh - laughs we had plenty even in this last crazy year and now she is gone.
 
Please don't worry about me, yes, I am terribly upset but I am even more determined now and I know Lynn would have wanted me to fight on for the both of us and to carry on living life to the full as much as I can and that I will.
 
 
RaquelXXX

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Wednesday 26/01/11

The Wind of Change

Hi All,
 
Just come back from Frankfurt yesterday and am still fairly tired so not sure how long this update will be.
 
In the world of Birdie I am still static/stable which is great news - I know it can mean a small slow growth here or there but whilst minimal they still call that static as it is not growing at a certain rate and not all over and no new lesions - I have decided to leave it to them what they call static and what not. After having seen recently in front of my own eyes how quickly some b - - - - - - - can grow static will do me fine anytime for now. I am going to focus my energy on just trying to get better either way.
 
I may have confused some of you having said we won't be going back to Frankfurt anymore for now as I was achieving the same results in the UK with the biweekly treatments (normal chemo) between May and August 2010 which also resulted in static/stable. I had explained this to Birdie but he talked me around and thought it would be good to give one more treatment direct to the lungs for some proper stabilisation before going back to a normal treatment schedule here. And since he has a very good reputation in his field I thought it was a good idea to listen to him and hence we have been again to Frankfurt. . .
 
All went fairly smooth this time - they even managed to get me more or less comfortable on the treatment table (thanks to my various hip bone fractures lying on the table usually means great discomfort). Birdie shared his opinions with me while carrying out the treatment - which were 'what would England do without their Royals' and 'that Lisbon was nice as long as you stuck to the main street and didn't look down the side streets'. Hahaha.

Even funnier was when we first walked into his office in the morning and paid his secretary (room right next to his with door open) - I thought I heard him fart in his room. But then I thought, 'no Raquel, you haven't slept well, you are imagining things'. But when we left the room Paul said to me 'Did you hear him fart?' And I said, 'No, was that for real, did he really, I can't believe he did that'. It was a loud and long one you see, the sort you'd definitely try and hide somehow. But no, he didn't.  Guess, he doesn't have to??
 
Oh well, anyway after having 'rested' for 3-4 hours after the treatment and feeling rather 'ratty' because I don't like staying in the treatment halls but want to be upstairs with my husband  . . . they finally let me hobble outside to be with Paul. Me very keen to get a decent drink to get me out of my very 'low blood bunker' (=dizzy and close to collapse/seeing black) hobbled up to the drink machine to get a half healthy drink (bionade) from it where the flipping machine had the nerve to neither dispense drink nor return our money. It was just the last thing i needed or anyone in that situation needs so I got so infuriated I managed to create havoc within 5 minutes of leaving my hospital bed. 

The problem was made worse by a very stupid woman at the reception desk who had nothing better to say to me then ' hahahah. What am I supposed to do about it? How do you think we feel if it happens to us?'. I asked her 'if that was meant to be a joke?' I did feel like going into a rant about it surely being a big difference in telling a patient who had just had a major procedure done to themselves and just wanted a drink to ring the number on the drinks machine with my UK mobile which would have cost me more than the bloody drink no doubt than to her sitting on her fat a - - - all day being right by a phone and able to just wait there till the man from the machine eventually turns up. anyway, my eyes were sending daggers at her and I marched off back to our seats.

And believe me I don't do much marching these days but on the way I spotted this man moving our clothes from our seats and sit himself and his wife in Burbon trousers (there is something about Burbon trousers that annoys me even more, anyway, I am sure that is what that brand is called beige you know with white and red and black caro pattern on it - apologies if any of you have a pair) on our seats whereas there were two empty seats right opposite!! But know they wanted to have the three seats so they could plant their no doubt Bourbon coats over the back of the third seat . . . so here I came along in my mood, grabbed our coats and this man tried to say innocently as if he didn't know 'Ooh, have I taken your seats'. So I said very loud 'YES!' - the silence in the waiting room was amazing you could have heard a needle drop and I left an extra long pause until I said in the same false voice ' Oooh, but don't worry about it'. Grrrrr. 10 minutes later I had calmed down and Paul and I had a laugh about it but sometimes you just don't need these things on top of everything else.
 
Anyway, that's it for now. Will try and get some more sleep. Just thought I entertain you with a tale or two. Sure it doesn't happen every day you here about a Professor farting in public.
 
Lots of love,


RaquelXXX

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Monday 11/04/11

Been a Bit Quiet Lately

Hi everyone,
 
Not sure if I have been on strike or what but here finally an update.
 
As you may have guessed I have been quieter as usual as things hadn't been great in the last few weeks.
 
Of course Lynn's death has hit me quite hard, in fact it just all became a bit too much so Macmillan has sorted me out with a free counsellor. Not sure it is helping but I am always willing to try.
 
Then I planned my 40th, an event I had been sooo looking forward to but kind of overshadowed by Lynn passing away a few weeks earlier. I had so many nice and lovely friends at my party that I did have a great time although I was in a lot of pain which was probably all my own fault.
 
I had actually been getting better a few weeks earlier and had tried to walk without the walking stick that I had been given by the physio in November (and then she disappeared). I had even managed to drive again. Then we went to the Channel Islands and probably on Sark, a fairly large island but with no public transport, I ended up walking all the places because me being me was not going to miss out now that I had made it there.

So to cut a long and painful story very short, I feel I overdid it then as my leg was a lot lot worse when we came back and, well, and then I had the party a few days later. I had hoped that at the party I didn't have to use my stick and wouldn't have to worry my friends and family so underneath that all upset me quite a lot. On the other hand I had a marvellous time with our house being full of lovely people and 6 people staying over and everyone getting on so well and making friends.
 
So then came a difficult few weeks to sort out my pain, I saw the painspecialist again, who is lovely by the way (yes, a nice doctor) but very strangely he actually seemed to make things worse.

In fact what happened was that the morning after we had seen him in the afternoon I must have had a very strong and adverse reaction to one of the drugs prescribed (although of course everyone is in denial about that) and my left leg, my Good leg, went into a mad state of pain and cramp, the right one not being much better I basically was kind of incapable to walk. Now that of course hit both Paul and me very very hard, mentally and me physically of course. But within three days thank god things were back to normal.

The Macmillan team came and supplied me with all sorts of 'goodies' that frustrated me even more but probably gave me a kick up the arse to fight, fight,fight. I was given a (in my opinion) useless  trolley to move things around, which I asked if I could redesign it, please. So far no interest. A Zimmerframe, which upon their next visit I 'ran off' with as I am far too strong for it (hehe), a wheelchair. So we are now at the state where all those goodies have ended up in the shed. So relieved. I of course have my own little agenda and am trying to get more mobile again and ultimately want to get rid of the stick. But I feel I need professional help from a physio so if they can't sort something out for me locally, I will go and pay for it. I am just so determined to get my leg better again and become stick free.

So yes you will be pleased to hear, last week I drove again and things are slowly getting better again. But my HB has been struggling because of all the treatment (have been struggling getting used to the biweekly chemo again and then had RT in-between) , there has been the problem with the mouth ulcers again etc. All the things I didn't miss while I was seeing Birdie.

So I had two blood transfusions in the last few weeks. One before we went to the Channel Islands which unfortunately gave me the energy to walk around too much and one yesterday yes, spent all glorious sunshine Sunday in hospital, but at least I am much better now and can breathe much better again. It was tiring me out just walking to the loo and back (all on one level).

We have also been on a wonderful cruise at the end of March for a week around the Canaries with a stop in Morocco, too. I coped well and everything went well and we thoroughly enjoyed ourselves and the beauty of our destinations.

Oh, and we also saw Joseph (musical) at the beginning of March. Basically, I have decided that doing nice things and going nice places is good for us and a very welcome distraction from the treatment etc. So, we will be trying to plan a lot of that this year.
 
Tomorrow I am doing an interview for Heart FM (radio) as April is bowel cancer awareness month and I am also supporting a lady who also has advanced bowel cancer on the phone  and foolishly perhaps I have signed up for another Race for Life although God knows at the moment how I will be able to do it (it is at the end of May) but we all know chances are high that I will.
 
Oh and here is a tip for when you feel really down: go and watch Mary Poppins, honest. : - )) or Miss Marple with Margaret Rutherford or the Pink Panther.
 
Lots of love,
RaquelXXX

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Thursday 05/05/11

Thinking of Raquel

Dear All,

Raquel has asked me to tell you that she is going to have an operation tomorrow or Friday 6th May to remove a large tumour from her brain. The situation is very serious and she may not pull through but in typical Raquel fashion she says she has every intention of doing so!

She is still in Germany and doesn't have access to email.

I can't really find the right words to express my feelings at this moment but I know we will all be thinking of our dear and wonderful friend and sending her all our love and positive thoughts. Her strength and resilience in the face of her illness has been an inspiration to us all and I, for one, know I am so lucky to have her in my life.

Love, Cathy x
 

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Friday 10/06/11

Raquel's Adventures in Germany Part 1 - Post Op Thoughts

My dear Family and Friends,

How long it has been! The following is an attempt to write a full and honest account of what happened to me - us so you may need a while to read it all.

We have been back home, in our lovely home, Peppermint Cottage, since Friday evening but I wasn't ready to write to you yet but today is the day. I guess I am trying once more to recover from an emotional rollercoaster and I am also trying to prioritise as my future is sadly nothing but clear.

I need to sort out appointments and more than ever try and find other possible cures as the orthodox world has not much left to offer me. So Paul and I are going through some difficult times again, and you of course as you don't want me to be in this situation, trying to find something that will help me hopefully in between me feeling very tired at times and sleeping a lot and recovering and probably feeling all drugged up from medication. Although I have bouts of much better energy in between.

Oh, and before I forget, thank you for all your emails - going through them left me very tearful and emotional- cards, texts etc please don't misunderstand I really appreciated them but I really was in no position to cope so if I didn't reply please don't hold it against me!

We arrived in my hometown, Stuttgart, on the evening of Easter Sunday, 24th of April. I was tired but been tired for months and feeling the illness but other than that no particular symptoms that could have told me cancer had spread to brain.

We spent a lovely and restful day in the Schrebergarten/allotment of Birke's parents, enjoyed ourselves with laughter and good conversation at my friend Gudrun's where we were staying in Stuttgart West (near Birke). We met Birke's cute new born (beginning of Feb) which for me was on top of my to do list this year as Birke and I have been friend's since the age of 14. Tuesday we went to the Wilhelma, which is the zoological and botanical garden in Stuttgatr, and Paul had to wheel me around all day but it was ok as it was a lot of walking and hilly and I just had to be sensible. we had a lovely time catching up with more friends also. I started to feel quite tired though and remember nearly falling asleep when we met Stephie. Stephie, no offence! Also at the zoo our camera got stolen right towards the end, presumably from my lap, maybe another sign I was very tired and not quite with it as it was a bit of a miracle how it could have happened.

That night, Tuesday night, I woke up and needed to go to the loo but something was different. The whole world was turning, I am not talking about a bit of dizziness, I am talking when you have overdone it on a bad carousell ride at the funfair, it was awful. Got knows how I made it down Gudrun's Korridor to the loo. I remember sitting in her kitchen (next to loo), eating an apple wondering how to get back. I have always suffered from low blood pressure so I thought it was just that and I would be fine in a bit. Next morning we did the usual, legs up, drink stuff etc. and I didn't have that crazy Drehschwindel anymore although I didn't feel great and we went into Stuttgart and bought a new camera and went to a cafe with Birke and little Michel, had a nap in the avie. In the eve we met Gudrun's lovely new boyfriend and had a very swabian meal (Swabia is the area where Stuttgart is in and they have very particular foods that I miss like Maultaschen and Spaetzle), at Gudrun's home. Ah, rewind, loosing track, we did all that on Tues eve, I mean the evening eating - buying camera etc was on the wed so in the eve we got Joschi, Birke's hubby to babysitt in between feeds so Birke could come out for dinner and we managed to convince Gudrun, too, so we had another nice Swabian Meal on our last eve in Stuttgart before heading down to Utting am Ammersee, lovely little town in deepest Bavaria.

So you wonder what on earth we were planning to do down there. Well my Finish friend from Uni in Cologne, Minna, lives down their with her partner and 4 children and the youngest and wildest is a little girl, now 2.5years and is my Goddaughter and that was another thing high on my to do list this year, to meet her as last time I saw her was at our wedding two years ago. I recall Paul asking me on the morning whether I really felt fit enought to travel. But you know me, a. I thought I kind of was, b.I am extremely stubborn and I hadnt come all that way to not go now that we were so close to our destination (i think it was a 2-3 hour journey by train) and now I forgot what c. was if there was a c.

Anyhow we got to the lovely 1 track station of Utting and got greeted by two very blond females, one tall one and one little one. As with everyone else it was so lovely to see them, although admittedly I felt tired and slightly dizzy, nothing like world-turning dizziness. Had a lovely afternoon admiring my friend how she managed to stay calm with all the kids running around the garden and sometimes house and their friends at times, at the same time trying to catch up with us and maintaining an Ikea show home style house in pure white with not a single dust corn in sight.
We had a lovely eve, chatting, the others drinking strange concoctions of alcohol, I of course sticking to my Apfelsaftschorle (sparkling water with applejuice).

Next day we watched the Wedding and if any of you don't know which wedding, wakey wakey, by then it was the 29th of April and our Prince William married his beloved Kate Middleton, a commoner (hurray) in Westminster Abbey and we were all watching. In the avie, Minna and Silja (my goddaughter if you hadn't guessed) took us to Lech am something, can't remember now, a very pretty town. Where Paul went off to look after Silja as she kept running off chasing pigeons whereas Minna and I had a chat, maybe a chat that saved my life, who knows. Minna asked me how my parents were doing and I said 'that my dad hadn't been that well and passed out a couple of times and they thought the potassium in his blood was too high' but i also said to her 'and can you believe it they never even did a scan of his brain', kind of fully aware that it could be something a lot more serious. What I mean is I kind of knew then that something wasn't quite right with me either but the message hadn't quite been delivered yet into action. But when Minna then told me a very personal story I thought 'oops' or probably more 'ohoh'.

When I felt worse the next morning I decided I don't care, this is it, I am going to be checked out. Poor Christine and Ulli had arrived from not too far away Munich (so maybe we weren't actually in deepest Bavaria yet) to enjoy a boat trip with us on the Ammersee but ended up driving us to a private clinic in Herrsching (also on the Ammersee and now definitely in deepest Bavaria in my opinion as hardly anybody spoke English there and we could see the Alps)- of course my friends were an exception-they speak very good English- well not that the English have much to show for their German nor for any other foreign languages.

Anyhow, at this clinic I got checked out from head to toe, like I had not ever been checked out in the Uk before and I felt in very good hands. Sadly they confirmed my biggest fears and found two metastases (that means spread from my primary tumour the bowel cancer) on my small brain. One of them was rather large and the other was fairly small. The small brain is at the back of your head. The message was delivered to me,Christine+Ulli and Paul in German, oh sorry, you gathered that already if you managed to keep your attention for so long ; - ) . Anyway Paul somehow kind of understood anyway, not sure how, might have been the body language. I remember the very kind young doctor saying to me this has probably come as a major shock to you and me saying when you lived with this for four years you kind of get used to it. Not sure whether that was a totally honest answer. I somehow managed to get a double room for me and Paul in the clinic as they weren't going to let me go. They were going to put me on Cortison, a steroid and keep me in for a few days to reduce the swelling. I was also told I didn't have long. maybe 1-2 weeks and I could be in a Coma/Koma. Then there was the suggestion made to transfer me to Augsburg where they could operate. I have nothing against Augsburg but also nothing for it as never heard anything of it.

Me being me can't sit still when being presented with such news, so I rang my surgeon in the Uk straight awy, who had removed my bowel tumour, of course he couldn't help as he is not a neurosurgeon but his mate was and he'd get me in touch, so I realised I was on a high learning curve. When on the ward I rang my oncologist ,yes, the mad professor), didn't get much sense out of him, he thought I was a nurse and profoundly apologised when he realised it was me. he did say radiotherapie (RT) was my only way forward, this without seeing any pics or trying to get any more details of me as to size and location of mets in brain so that left me bloody confused as the local doctors said I didn't really have time for RT because of the latter - size and where it was, RT doesn't work quick enough in that situation and this was confirmed to me later by other doctors plus Minna had already said that in her account. My friend Sylvia got in touch with an old friend from Uni, who happens to be an oncologist these days (Hello Ernst) so I could have a very useful chat with him and then Sylvia told me about someone that went to Heidelberg(HD), where they were the only place happy to try and operate this other person and I also remember my mum always going on about HD as she watches a lot of programs that feature HD when cancer is the subject. So maybe Sylvia is another one that kind of saved my life, just telling me the story like Minna did with her personal account where by the way, RT was too late or didn't work in time so all help came too late.

Sunday dragged on, nothing much happens in hospitals at weekends but luckily Paul could take me to the lake and we could meet up with the Poesel/Eloranta clan (Minna) who had driven down from Utting so that cheered me up. Ah, what also cheered me up was my sneaky dinner the night before. They had forgotten to order me food at the clinic so the Schallmosels (Christine+Ulli)+Paul were allowed to bring me some food back and god did I enjoy it, Nuernberger Wuerstle with Sauerkraut! So German of me, I know, but so yummy, and I definitely deserved a treat that day!

I remember saying to Paul on Sunday eve, 'what are we going to do'??? Still confused at that point with all the contradicting advise on whether to RT or Op. Paul came out with the sentence 'Shall we go to Heidelberg?' And I said 'lets go to Heidelberg'. Had to wait till Monday afternoon when a very tattery old oncologist finally made an appearance and gosh was I glad that I didnt have to rely on him for advise as we had made our decision by then as you know. Honestly, he could hardly speak and the young doctor with him had to shut the window so he could be heard and it wasn't a noisy place. They looked very surprised that I had already decided, well we had, because I did need Paul on board with me obviously, and that I had already made an appointment in Heidelberg for Wednesday, the day we were supposed to fly back home. So we had to let the flights go. I didnt' know what would happen in the uk, red tape or not but I knew they would see us in Heidelberg.

so I kind of told them I was going to discharge myself as all dizzyness had gone (thanks to the steroids) and I couldn't quite see the point of hanging around the clinic and I was desperate to have a nice eve with our friends. So that's what we did. Next day lunchtime we started our trip back to Stuttgart after Minna and Andi kindly helped us get a hotel room in Heidelberg for the night at short notice, Birke kindly picked us up in Stuttgart, dropped us off at Gudrun's where we repacked as not sure of the future, Paul wanted to take bags but not suitcase, Birke then picked us back up again from Gudrun's, drove us to the mainstation, sorted our tickets, put us on the train, I slept the entire journey, so there we were in Heidelberg and ended up having Flammkuchen in a very touristy place, I can judge that by the size of the Flammkuchen in case you wondered. Flammkuchen again is German food and usually savoury although usually Kuchen is cake.

So now we were in Heidelberg and this is where my first update ends. I have made this a very detailed account, partly maybe for psychological reasons so I can retrace our steps, also so I can avoid too many questions from you so I don't need to go over and over it again. Quite frankly, i want you to understand but now I 'd rather talk about what you have been up to and thirdly another selfish reason I feel more of an urge to write my book so I better write it all down while I remember.

And lastly if I haven't made it clear for this part of the update we are for ever grateful to Birke, Gudrun, Minna+Andi, Christine+Ulli, Sylvia, Ernst without whom we don't know how we would have managed, magnificent ground support ; - ) . I in particular am very grateful as I worry about my Paul and knowing that he had this great help while we were out there means the world to me and this remains the same for part two of my update. and despite everything I am very pleased that we went to Germany and cheated Diddy (cancer) once more. And soon I will probably stupidly been plotting how we can cheat it again.

And we felt it was pure luck that it was discovered in Germany as they did treat us like royalty there and I am not sure in England they would have acted so quickly with op etc and I will explain more of it when I get around to part two. ..

Til then my dear friends and family, sorry you have to wait but it will give you plenty of time to read this update properly first. ; - )

Loads of love,
Raquel+Paulxxx

 

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Monday 13/06/11

Raquel's Adventures in Germany Part 2 - My little visitor

Hello my dear friends and family,

I am trying to remember where I left you last, I think it was in the very beautiful town of Heidelberg, where we had arrived on a pleasant, almost summery eve, the third of May, not knowing what the future would hold. (I don't know if you know but Heidelberg is a gorgeous, very touristy town set by the river Neckar, with a beautiful castle and old town. It is also known for its excellent university. So well worth a visit if you are fit enough!!)

And yes, for those of you who still don't get it WE ARE at home now, Sorry but there is still the odd one out there who is too scatty or I don't know what to understand or read that we are at home, sweet sweet home.

Anyway, I shall calm down and carry on where I left off on Friday - All we knew is that I had made an appointment with the Ambulanz Service at the Kopfklinik (ambulance service at the head clinic) for the following day, Wednesday 4th of May. We got there and of course we got hit by the question 'who is going to pay for all this' first. Luckily for us they had an International Office right across from checkin where there were some extremely helpful German ladies, all with perfect English, that really went out of their way to help us. For me and the cloud around my head ( I now blame the 2 brain metastases)- it was all a bit too much to cope- but they really made it bearable.

Luckily my credit card first got us into the Ambulanz Service to be seen by a doctor. (Next day a lady came who had a cold so she wore a mouth mask when she came to see me. Basically, because Raquel was being Raquel and a very lucky one this time, I had just got Paul his EHIC card (all Brits listen out and get one!) and had noticed that mine had run out in September last year and updated mine, all this just before we went on our cruise in March, so basically we were extremely lucky to be insured through the EU, otherwise the bill would have been very high. No, normal travel insurances don't cover people with cancer, they won't come anywhere near us).

So anyway, we were eventually seen by a doctor of the Ambulanz Service of the Head Clinic who left both me and Paul in tears. Basically, she made it sound like I was going to die and that they didn't know any of my wishes, my will, what would happen to my body etc. I pressed out the words that I hadn't come prepared with that because I had no plans of going anywhere so I hadn't thought of it - sorry I did warn you this was going to be a true account of what has happened-. In the end she said 'We will give you our strength and if you give us your strength, hopefully we can safe your life'.

With these 'cheerful' thoughts she then fought for a hospital bed for me on the ward, with an aim to operate the next day or the day after. We didn't know where Paul would be able to stay; another big issue for us, a.) having to be separated at this hour and b.) the language issue etc etc. The ladies from the International Office again proved extremely helpful as they sorted Paul out with a small apartment at the Guesthouse of the University which was basically walking distance from the hospital, again we were so lucky!!

But of course I had taken painkillers for my hip pain that also contained Aspirin and nobody at the previous clinic (Herrsching, Bavaria) had decided to tell me to better come off them if I was going to be operated on. Basically this doctor had confirmed that RT (remember Radiotherapy) was totally out of the question as it would come too late for me.

Yes, it did upset me a lot that I couldn't just get on with it and get the Op over the next day or the day after, having to wait until Monday (and weekends are even more boring in hospitals) was a bit of a nightmare for me but luckily Gudrun and Sylvia came for a couple of days before the weekend and entertained/distracted/supported us. There were more tests to be done, one of them was very strange but as the Op was going to be done sitting they needed to check I had a link between heart and lungs or something. Basically I , of course, belong to a 5% of population that have a small hole in the heart so it increased my risk of the Op. I just didn't know what else they were going to throw at me to make things worse.

Then my mother said she would come and stay for a few days from Tuesday (day after the Op) to Sunday, I was pleased, very pleased but also worried as my mum worries so much and I seem to have to carry her worry, too. So I was very pleased my friend Liz announced she'd come Sun-Wed and Paul's dad was coming with an open ticket, also Tuesday I think. I knew the two would have a more calming influence and I knew Paul would never admit he needed help or would benefit of some company, he is just not the sort of person to do so. I was worried sick about him and all my family and friends, so please forgive me I didn't want to talk or text much, I just didn't want to think of what could happen if worse came to the worse, I was so wanting to stay but I was so scared, too. I didn't want to say good-bye. Paul saying he needed to know what to do with my ashes made everything worse. I thought, if he has given up on me, that is the worst. But he hadn't, he just needed to know but I wasn't even prepared to go there. But then this little bird flew into my room in the hospital, a Kohlmeise, grey tit, and kind of spoke to me, and I haven't lost the plot but it kind of reassured me, it was like a sign that everything would be alright and I calmed down and thought they wouldn't try and operate if they didn't think they could safe my life.
Anyway, we spent the Sunday at the very close by (walking distance) Zoo, which was great - doctors who did the op next day were a bit speechless when they heard. . . but you know me, wasn't going to mope spending the day before the op, which was a beautiful day, in the hospital. . .

So luckily Monday came and I was first on the list, thank god, no more waiting. Myrtle, my teddybear, that normally supports me in these times (kind of need to cuddle something in these crazy times and I couldn't take Paul into theatre) was still in the UK so Paul bought me a Yogibear from the hospital shop which I intended to take with me for moral support. The male nurse was a bit crazy, gave him the same sticker as me so he wouldn't get lost in theatre and shook my hand to say 'I will see you later'. Just what I needed to hear, basically.

And so he was right, I saw him again the next day after a day in intensive care. Waking up was probably the most amazing moment of my life. I felt like I was given another lease of life. The light seemed so bright and the birds have never sung so sweet. Seeing Paul again just left me in tears and speechless. I remember Gudrun ringing to get news of how I did and I said 'I am fine', I think, just as the doctors arrived to do their round. I made them laugh, too, as i asked whether the thing on my head (an antenna type thing to measure pressure on brain during and after op, I think) made me look like a teletubby. I was just so relieved I would see or hear from everybody again, it was just amazing.

And that's where I am going to leave you right now, sorry I just decided there will be a part 3.

Lots of love,
RaquelXXX
 

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Tuesday 14/06/11

Raquel's Adventures in Germany Part 3 - Life in Hospital

Dear Friends and Family,

So sorry I left some of you on a cliff-hanger yesterday, forgot that not everybody has been kept in the loop! So here I am trying to remember what happened next. Yes, I woke up and entertained the docs, . . . I was keen to leave Intensive Care and couldn't wait to get back to the ward. Basically the doctors were very pleased with my progress, the op went a lot smoother and quicker than expected so thank you for sending me all that healing, apparently I nearly swore at the doc trying to get the pipe back out of my throat - I told him I am surprised that I didn't- all was hunkey dorey, really. I felt like a new woman, no cloud around my head, more energy, the dizziness gone, looked better than before the Op apparently (I refused to look in the mirror although really there was no reason to but I had seen so many Zombies (sorry) walking around the Head Clinic I did wonder what they had done to me but the rather large scar is not really visible as at the back of my head and hair has already grown over it now; the antenna area on top is also being covered by new Raquel lawn, it just grows so fast).

We had the lovely visits of Liz and my mum and Mike that week like I mentioned before and at the weekend Angela and her partner visited one day and the next day Sylvia came with Elmar - great distraction. We also spent our 2nd wedding anniversary that we had already booked to spend in the Lake District in the hospital. Guess there is a first for everything. . .but it was strange and we indeed plan to celebrate with a trip to the Lakes as soon as I feel fit for it. I wasn't able to walk far, far but Paul was able to push me out in a wheelchair to the nearby Botanical gardens, which were literally outside the hospital doors, it was so nice to sit there, watch the birds, hear the frogs and see the occasional hare on an eve. It was great to get out and the hospital surroundings were perfect, so green. One of the docs had a fit though when we asked him if it was ok to take me out, he had heard the zoo story and was getting rather hyper about where we should go and not go. We laughed a lot once he was out of sight. . .

My walking was and is better and like i said I felt better but then the questions started tumbling in . . . what about that other small metastases/secondary that they did not take out and what about the rest of me - the lesions on the hips and lungs and liver?

So I said I wouldn't lie to you and here are all the answers - the remaining brain met is being left for now as it is since I have no symptoms. It would be too difficult to operate and also RT would have heavy side effects which I can do without at the moment. However my oncologist in the UK who we saw Thursday has since put me on steroids to keep the swelling down and things under control.

The liver and lung ones unfortunately have grown - I am now looking into how best to deal with them but panic hasn't settled in, quite the contrary, right now I feel I am getting my life back.
The ones on the hips have actually not got any worse - so there is some good news, too!

Then a week after surgery, when I was supposed to move onto the rather strange station of Neuroonkologie (still puzzles me) I developed a very high fever. the highest was 39.6, it just kept going up and down like on a fun fair ride at the Oktoberfest, we just didn't want to tell you all the details as we didn't want to worry you. They thought the infection came from my lungs, pneumonia, I am not sure but I just got on with it. Wadenwickel is what I suggested since I remembered my mum doing them when we had fever when I was young.

They are wet towels around your calves and I asked my parents for some tea so they suggested Redbush (Roibush Tea) which Mike kindly got for me - he was our very reliable shopper for two and a half weeks and kept running into HD on errands for us. Of course they put me onto Antibiotics and a lot of Paracetamol to bring the fever down and they kept waking me every two hours at night to check the temperature, not nice. Eventually the fever was between 38s and normal so they moved me to that strange station I mentioned above.

Sadly, there I agreed to take part in a lumbar puncture (nervenwassertest) which was bloody awful, basically they poke a needle in your lower spine and then collect a lot of nervenwasser/nervewater from it. It didn't go down too well with me and I suffered for days with headaches and sickness, so half the day was gone before I kind of recovered. It was a real shame as I had been feeling so great after the op and then all this. But I thought to myself, 'Raquel, it is just another mountain you have to climb and you will get through this, the Alps do not carry on for ever either'. Unfortunately my mum in law, sister in law +boyfriend came to visit just when I was going through that face and whilst it was so lovely to see them, of course I felt uneasy as they couldn't see me as well as I wanted them to see me.

I haven't mentioned yet the numerous ladies I shared a room with in all that time (about a month) I spent in hospital but they do deserve mentioning. There was Frau Richter first of all, who suffered from insomnia after her Op and turned the telly on in the middle of the night and who was more concerned about how she'd look at her daughters' wedding in two weeks time and who hadn't actually told her mum about the brain tumour.

There was Frau Lueth who had a rare nerve thing going on on the side of her cheek, we could hardly drag my mum away from her on the eve, a lovely lady who named her dog Heaven because the father was English,

Then there was Frau Kretzinger who had done a report on the main guy at the Head Clinic and filmed him during life Op years ago, so she had come back here for having her brain tumour removed. Sadly the woman didn't realise how deaf she was and being in the same room with her while she was on the phone was unbearable,

Then there was the woman who wouldn't really talk, then there was the stroppy teenager, that kind of softened towards me at the very end (well a weekend together), I figure, as she offered me her old magazines,

Then there was the Polish woman who claimed she wasn't foreign and who was extremely confused. She had already had 3 or 4 brain ops and hadn't been checked out for over 2 years and thought she could just come and stay for one night although she had not been feeling right. One eve she was picked up for a scan, and the nurse left her dinner on her side table, nice roll with seeds on top, little Kohlmeise (grey tit) decided to fly into room, land on empty cup, then on bread roll, knick a seed and fly back out again. So funny. I sent Paul to tell the nurse, not sure what the nurse understood as he came dashing back into the room but anyway we got cup and fresh bread roll replaced for her. You see, there was a lot of wildlife just nearby. And in a way there was a lot of entertainment, you just had to be able to see the funny side of things, which of course wasn't always easy.

Anyway, I think I shall carry on with Part 4, hopefully tomorrow, I think I have shared the most important details with you now so there shouldn't be any cliff-hangers. I am just back home being me I guess, getting on with things, relentlessy searching for solutions, not willing to give up.

Oh, and of course, since I wasn't able to do the Race for Life this year, planned for the 29th of May, since I spent it in a German hospital bed instead, I am rooting big time for Caz, Pauline, Gail and Brenda who have very kindly decided to do the Race for me in Plymouth, so please do sponsor them kindly.
Here is the link: http://www.raceforlifesponsorme.org/carolinelaw2603

Lots of love for now,
RaquelXXX
 

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Wednesday 15/06/11

Raquel's Adventures in Germany Part 4 - Post Op Thoughts - Feels like Prison

Hello everyone.

Of course I am not at home yet, am I! So what happened on the next ward? Which was literally right next to the previous ward, some of it I already told you. I had to do strange reflex tests etc., apparently all is normal with that, great, neurologists, honest! (you might have gathered, I don't get them!) They carried on to control my infection but also indicated they did not have all the medical reports to come up with a treatment plan for the future -the other reason (not only the infection)- why we were still there. We hoped they had something else for me, being the centre of excellence in Cancer research in Germany and we had great hopes, hopes which had kind of been raised by the team in the kopf/headclinic.

Luckily I am very well organised and have kept all copies of any scans etc and the treatments of Birdie in Frankfurt in one big red folder under the desk so I could guide my sis in law via the phone to find them and my mum in law brought them all over so the docs could have a look at all finally and stop procrastinating. Everything seemed to move soooo slowly. Then there was the story of my left (my good) leg, suddenly from one day to the next I was in extreme pain with it, not sure it had to do with them not moving me right from the stretcher back to the bed at CT as they just pulled me across; this was at a time I really didn't feel well, tackled by fever and lumber puncture and just didn't seem to have the energy to move myself - I swear next time I will! I also had to go to a hearing test at the HNO (throat, nose, ear clinic) with little results because probably lumber puncture caused a bit of a whistling noise in one of my ears - in hindsight I think it just all came together but probably a good thing it got checked out there and then but even that left me worse for wear for a couple of days.

Anyhow, I spent another week on that ward and the bed fight continued until eventually on another Wednesday Avie, I believe, I got moved to an entirely different ward, part of the National Centre of Tumours, in a different part of the huge University Clinic building. yet another room mate, frau Doerrsam, she was a character, indeed.

Three years fighting pancreatic cancer (Bauchspeicheldruesenkrebs), I think that says it all as this is the most unforgiving of all cancers. It is the one that Patrick Swayze managed to cheat for over 2 years. We left her one of my Vanilla Dany+Sahne desserts I got obsessed with while out there (I ate it with berries) at the end and her eyes popped out like Scrooge Mac Duck's eyes when he sees dollars (Dagobert Duck). So funny, I will never forget the sight.

Anyway things changed in one way when we reached that ward. It didn't help that the doctor just seemed to shrug his shoulders and there was a lot of silence among the white coat brigade when I put them on the spot re what they could actually do for me. Of course I said it in front of all 10 of them but the Oberarzt actually felt inclined after that to take some extra time and explain what they can/can't do. so he suggested another chemo to buy me time, maybe try Avastin (had that for a year in 2008/2009 up to our wedding) again and also test me again to see what Gene (wild or mutant) my tumour is as that makes a difference. Still waiting for the results and haven't approached the Avastin route with my oncologist yet as I think one step at a time. It wasn't that easy to convince him to try the chemo , which I have mentioned again below.

In Germany, I was still in agony with my leg and could only 'move' with 'breakthrough' painkillers but they weren't prepared to do anything apart from painkillers since nothing new showed on the scan. For me just being more and more drugged up into a Zombie state is no solution either though and of course I told them that - stunned silence. It was hard not being able to go to the botanical gardens anymore as sitting in a wheelchair was too painful. Luckily after a while I managed on a 'mobile' chair whilst on these breakthrough painkillers which was more flexible but it wasn't great.

Anyhow, what really got to me was being checked in by a rather large male nurse who claimed I was underweight and needed feeding up, maybe with nutritional drip etc, that really got me going so I put on 3kg in one week just to spite him (by the way I was a weight then that I was in my 20ies, so not really that skinny at all yet but appreciate having a bit more on the ribs won't do me any harm!). I did tell him my appetite was fine if presented with nice food but hospital food wasn't exactly designed for that purpose. I was surprised that even on the cancer ward you get the same crap food as in the rest of the hospital.

Then there was the Ecoli outbreak and the only other healthy foods Paul had been smuggling in for me other than berries were out of the question - lettuce and cucumber. So back to the usual German feast of breads and cheese and cold meat spread for breakfast and lunch. Found some muesli and Griessbrei (semolina) though for breakky but not great.

The other thing that really annoyed me and made me feel like I was in prison was having to go onto the scales every flipping day plus the question if I had been to the loo. Again the same nurse argued with me to put me onto Movicol, which is a laxative and makes you go, because of my Morphine pain patches. Only when I said I already go at least 7 times a day (probably thanks to the turmeric I was drinking twice a day) and this would definitely cause me diarrhoea, he finally left me in peace. But this is when I started missing home and the fact that no offers, no answers for treatment in HD seemed to come our way. And indeed they felt my Uk oncologist ought to decide. I think a lot of it had to do with money and they weren't convinced we'd be able to pay for treatment over there although I kept trying to reassure them. Luckily Dunja came to cheer us up (Mike had to leave us that day) and also Gudrun and Sabine just before we finally went home. It was so nice to have their company and time flew by so quick.

One day I got suddenly asked by one of the docs, 'when do you want to go home?' I was surprised, as normally they decide that question. They promised me a letter of recommendation and said I could go home when I felt ready. This was at a time my infection wasn't cleared yet. I had been on the antibiotics for two weeks, one day off, fever climbed, so they put me on for another week at least. it was only in the Uk they finally said, we don't put people on Antibiotics for this long and told me to come off it and I have been fine since -by the way- as I keep checking my temperature.

My insurance had been contacting the doc and they were happy to expedite ? me home on behalf of the insurance. So they sent a nurse over to accompany us. Because my leg pain was so severe I had to be transported on a stretcher, one ambulance (I thought it would fall apart) from HD to Frankfurt airport, then one to the aircraft with lift, me and nurse at first in BA business class. They were great and upgraded Paul from cattle class to business. Trip over in aircraft wasn't too bad, was given some oxygen but since I had only had a blood transfusion two days earlier it all went ok. Unfortunately in LHR (London Heathrow) no ambulance/lift was booked so we had to wait on the aircraft for over an hour so if anyone knows anyone booked on a BA flight to Frankfurt that afternoon, the delay was me. Pilot was having none of it though and said my welfare was more important. In the end we got moved with one ambulance to greet the final ambulance but the shambles or poor organisation continued as we had to wait to meet that one although they had been in the right spot since 13.30 hours but got told to move somewhere else and it was already 16.00 or later by then . . . all not as glorious and victorious as I had planned my return home. . . but I just had to accept it.

It seemed like a strange dream finally seeing Peppermint Cottage again, I had so hoped I wouldn't miss the roses after all the pruning in the autumn. And they were still out. It was all too much I think when we first got back. Lots of sleeping, a very determined Raquel , very determined to get upstairs and into our own bed after all this time and so we did. It took time to settle back in but now I am so glad we are back home.

What have I got up to since back? Had some nice visitors but still taking it easy as still getting very tired. Saw the mad professor who was very surprised and admitted so to see me walking without a stick and looking so well since brain op. Everybody at hospital very surprised how well I look. So of course that has given me a boost. Will see prof again tomorrow to discuss another form of chemo, given in tablet form. Don't think it is the long term answer for me, so I continue in my search but I think it will buy me some time and it has been recommended by three different German doctors, so I think it is worth having a go although I have to admit not looking forward to any possible side effects. I have also mentioned I am on steroids, these are supposed to help with a number of pains I have and keep the brain met at bay. The more I read up on RT to the brain, the more glad I am that docs not suggesting it at the moment. I think there are other, better solutions out there for me.

Mum has offered to come over to give Paul a respite but we haven't decided yet, it is not usually a rest for me, which is sad, but true, as my poor mum is not of a calming influence.

I been trying to get on with my life really. So I have sorted out a new Motability (you can get it when you are classed as disabled) car, so we went test driving a couple yesterday and that went well. Went for a Jupiter red Mercedes A class Automatic in the end, that will help me get some of my independence back. It just means they take a chunck out of my disability living allowance, which is fine. Don't need to worry about repairs, service, road tax, insurance and Paul has decided to sell his old trailer.

Also treated myself to a four wheel rollator with shopping bag and seat. The social services here gave me three crappy tools instead, which all don't work for me: a tricycle, which isn't very stable and you can't sit on it when tired, a 'shopping trolley' for the house for driving a cup of tea from the kitchen to living room but it is so poorly designed you will end up with an empty cup whilst you reach the sofa, and a Zimmer frame for which I am too strong. We got a refund from the boiler people promised Monday (honestly it sometimes is worth complaining £150) so that covers my new rollator toy, haha, I am very pleased. Also been pottering around the garden and put some plants into pots on the patio, extremely pleased with that.

So often in the evenings I am tired and still sleep a lot but I feel I am on top of things. I have bought a book called 'overcoming cancer-24 stories of triumph and hope' because I need inspiring, too, but I also read Winnie the Pooh. haha.

Tonight we have a visitor, doesn't normally to come and see us, so that is nice ,too. Listening to Jackie Evancho on CD at moment, I do like my classical, calming music at mo. Also borrowed kids DVDS from Paul's mum, much to Paul's despair. Seen the Chitty Chitty Bang bang and now got Aladdin and another one to watch. Earlier we went around a friend's house , they have a new born, only about a month, another Harry. Very cute and soothing.

Saw the season's finally of 'the Mentalist' but have decided to wait until Christmas to put current series of Desperate Housewives on my wish list. Got back into my soaps, Emmerdale And Coronation Street without any trouble. That says it all. Like I said, am spending a lot of my time researching other alternative or complementary solutions for Diddy but haven't decided yet what way to go.

I think this is it for now.

Oh, I had a great moment earlier. Stood talking to the nurse at hospital, no stick , no rollator. Just feels so great having both hands free. I am only using the Rollator to help me get back into learning how to walk properly and when I am tired. It will give me independence to go shopping, too, I hope. Independence is what I crave. Oh, and my bloods are definitely on the improve, Hb now over 11 and don't need to be on Warfarin anymore. Oh, and I am making steps to finally see a physiotherapist. Had enough of all the red tape, so asked for private referral through my GP.

Love you lots,


Think I have it all out of my system now, thanks for your patience, although I know a lot of you have kind of enjoyed reading my updates and are encouraging me to write my book. I guess that really has to be my other big project now. I want to give strength and hope to others, not to give up, if that is right for them, it is so hard to know what is right, but for me I have too much to live for, that's just how I see it and why go through this shit for four years and then give up? I just can't. I would miss out on too much. Like Paul rescuing a little black bird the other day that had fallen out of a nest in our hedge or the look of a little newborn baby or not seeing my husband's face every day. There is too much out there I would miss - as i could go on for ever - but i really don't know how simple the answers are.

Just one more thing, thank you all for your amazing support, thank you to Liz and Sylvie and Cathy for sending the updates and thank you all for not giving up on me, it means so much to me. Thank you to those who could come out to see me and will come and see me the next few weeks. I know I need to take each day as it comes, which is difficult for me, but I think I am getting there.

Oh, and of course, if you can please sponsor the girls in Plymouth http://www.raceforlifesponsorme.org/carolinelaw2603

RaquelXXX
 

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Saturday 18/06/11

Another visit to the Mad Professor

Dear All,

Just thought I give you another quick update on what has been happening.

We had another appointment with the mad professor who does not look so mad anymore since his hair has been kept in a neat haircut (normally I think it is cut once or twice a year) but anyway, I am sure you are not interested in the oncologist's habits of how often he is cutting his hair. . .

I kind of triumphed again because he admitted that he was very surprised when he saw me walking into his office 'Stick free' last week and he said' I have to admit you are tougher than I thought'. I told him that he should know me better after 4 years!!! But inside I was sooo pleased, a real boost. Just love proofing him wrong. I think he may be a bit scared of me as I was/am very calm and just asked him quite a lot of questions, which he was probably dreading but I felt I finally got some straight forward answers rather than him beating around the bush. Which might be clear answers to from where Paul is sitting but to a part German/part Portuguese woman even after now my 13th year in the UK, you do need to talk straight with me! And I did tell him, that I was pleased I was finally getting some straight answers from him . . .

Anyway, he handed us the Capecitabine (Xeloda) tablets over, which I am supposed to go on and take them daily now and see how I get on with them. They will be lower dosed but ongoing, so no breaks. But I have already spotted a bonus, I won't have to go and interrupt what I want to do for having to be back at the hospital every 10 days for infusions. Again greater flexibility, greater independence , me like a lot. Taking the tablets like that - apparently that is the way they have found here- works best for people. You probably think I have started taking them already, but I haven't. I want to be in a good routine first before I get into a muddle again with what I take when etc. I am talking about food, supplements, medication etc. I also want to give my liver a chance first, so I am going to do a liver flush first to detox it before I ask it to deal with more toxification. I know, just a gut feeling I have and because I have been getting pains from the liver, which are controlled by the steroids, I just feel my poor liver needs some extra TLC right now.

Also emailed Birdie in Frankfurt to see if he can still help me when fit enough to travel abroad again.

Steroids- I was supposed to be on those for two weeks, found out by chance that you can't just stop taking them. Nobody mentioned before, just finding it hard how disorganised the private healthcare can be, do feel the NHS here is better organised in that way. . . . Anyway, looking at cutting them down but worried it will affect my energy levels. (steroids can make you feel like you have energy and at moment I don't know is it them or me just better since Op)

Mentioned Avastin to the Prof, which I had between 2008 and our wedding in 2009 and then got told it is not working anymore. It coincided with it being nearly a year of treatment and the funding stopping from the insurance and a 7 week break. Doctors in germany feel it is not proven that wouldn't work for me anymore because of the break. Avastin (Bevazicumab) is not a chemodrug. It stops blood and food supply to cancer cells, I think. So trying to look into that again, too. Apparently there is a trial in the US but only open for US citizens. Mum thinks we could just move there and become US citizens, ha, asked her if she hasn't seen the film 'green Card'. Prof thinks I would have to get divorced first, marry a US citizen, etc etc. All doesn't make sense so need to see how else we could get it. It doesn't come cheap, so decisions, decisions, decisions as I am sure insurance won't cover it and Prof will only be interested if I go ahead and pay for it myself. We don't need any money, I am just wanting to tell you exactly how it is!

I need to inject myself (trying to train Paul up later as his wee sis is a nurse and will show him) with anti- clotting. No longer need to be on Warfarin (yippee) but poking myself with a needle hasn't proved successful so far and we want to reduce risk of blood clotting because of the other brain met.

Going to seek further opinions on the other brain met. Hoping to get meeting with Neurosurgeon in UK (friend of the surgeon who removed the bowel tumour in 2007 and I trust him) and Birdie in Frankfurt has also confirmed they may be able to take a look at it.

Starting Physiotherapy on Monday, very pleased I finally took that decision. Had been asking for it here for months through Social Services and Macmillan but have only encountered RED TAPE (obstacles), not solutions. They basically would want me to spend a day in the day care unit at the local hospice, and then when it suits them, they will take a look at me but I am out rightly refusing to spend any time at any hospice, other than in and out for an appointment. so I had enough now, I am going private. Wish I had made that decision a long time ago. In Germany they did give me physio by the way and it didn't make matters worse. I know my situation with the hips is extremely confuse and complex but I can just see that not doing anything in that area is not the right answer either!!

My lovely friend Caz coming up in a bit to visit, really looking forward to that.

Reading a lot more now as not so tired and eyes back to normal since Op. Reading 'the House at Pooh Corner' before I go to sleep as that is nice stuff to read and 2, soon 3, cancer books parallel to each other. The 24 success stories is a real good one but also finally wading my way through ,'The Rainbow Diet' by Chris Woollams.

Went to see Paul's dad in Brean (about 2 hours journey by car) yesterday. Was a very big step for me but good to know we can theoretically leave the house - still needs some adjustments though but hoping to travel up to the Lakes soon, just feel an urge to go there, I always just rejoice so much from being there. So many happy memories and the landscape is so gorgeous.

anyway, probably forgot loads but off I go now,

Lots of love,
RaquelXXX

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Tuesday 21/06/11

The Last Few Weeks in Pictures

Hi All,

Probably talked enough for a bit so I thought I send you a few pics instead so you believe me I am doing ok. . .

1. Saying goodbye in Stuttgart, Gudrun, Birke and me on a Swabian Meal out (Paul taking pic)
2. Probably the talk that made me go to the doctor, Minna in me in Lech
3. Paul and me at Ammersee, day after finding out about the brain mets. Still smiling.
4. Same day with the Poesel/Eloranta Clan by lake Ammersee
5.Paul's wee appartment in Heidelberg, which was walking distance from the hospital.
6. Me and King kong at the zoo, a day before surgery.
7. Our 2nd wedding anniversary, - what you see on top of my head was the leftover from the 'teletubby' antenna, not the place where the metastase was!
8. Our 2nd wedding anniversary, no, I did not want my pic taken
9. A promise kept, meeting Dave and Gemma's new arrival back home at Peppermint Cottage (little Harry)
10. Spot the scar
11. Caz and me this Saturday gone
12. Back in the poppy field this Sunday, face ballooning from Steroids probably. . . cutting down now ( on steroids)
13. the beautiful poppyfield this Sunday

Lots of love,
RaquelXXX

   

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Saturday 25/06/11

Busy Week

Hi everyone,

Had quite a busy week this week and thought I fill you in. Off to the Lake District next week (Monday) for a few days - very excited but also nervous that it will go well. Its a big step but we got to try these things.

It has been a bit of a week again with ups and downs. Physically generally doing well, haven't had many tired days but I went to see physio on Monday and I don't know what she did (had a massage) and I was left in agony with leg/hip pains until Thursday. Thank god it is gone again now and those pains have kind of not bothered me too much anymore. It just varies so much.

The biggest bowel cancer charity in the country can not find anyone to match me. Meaning no one to talk to going through similar experience. This and the fact that the Penny Brohn Doctor (cancer charity in Bristol), who I normally ring for a bit of a boost every now and then was speechless and didn't really know what to say kind of finally started to bring the enormity of what I have been/am going through home to me!

Just spoke to my (step) grandmother in ages - she was so happy to hear my voice. It was so nice to be able to cheer her up like that.

Saw the surgeon that removed my bowel tumour years ago on Monday and he was ever so impressed that I dont seem to have any drawbacks from the Op. ie. writing/coordination/speech all working fine. He referred me to his mate a neurosurgeon for a second opinion, whom we saw yesterday. the latter actually kind of cheered us up a bit. He thought I was in the best place for having the surgery done over in Germany (he thinks Germany and USA are best places), kind of dismissed the British healthcare system, which is funny as he is part of it. He also explained everything really well to us which I must say nobody has done so to date and maybe I should have asked these questions but maybe I was scared or just didn't think of what to ask, I am not sure. Anyway, he advised against operating on the right smaller metastases because he thinks my right side of the small brain is making up for the massive op I had on the left.

The metastasis on the left was actually very large and he was quite certain it had been growing there for years. He said that brain mets do not grow that fast but usually very slowly. This is really interesting because I had headaches at the back of my head for years, even before I was diagnosed with the bowel cancer and when I had chemo I would get pains there too. And I actually have raised this a couple of times as a question even with my surgeon back then, and everybody dismissed this. 'Oh, it doesn't normally go to that part of the brain' and he even felt it and said there was nothing there but you can't actually just feel it anyway I think now! For me though it is a boost that it is not a recent development and just suddenly went up there but has been growing slowly. He also explained that it takes 3-4 months to recover from the kind of Op I had so that again cheered me up as I can stop being so bloody hard on myself all the time and pushing myself too much. I mean I will always do things if I am well enough but if I am not so what, I am having a bad moment, that's all. Also any light-headedness I have been experiencing or funny noises is all very normal because they would have cut through some nerves and that can cause all sorts. He is referring me to a radio surgeon though just to get another opinion if he would treat the other mets but no Op, no RT (which you know I am relieved about)

I am doing my liver flush thingy this weekend and boy it certainly is working. Monday I will start taking the chemo tabs. This is the beauty of it, we can go to the Lakes and still take the stuff. It is supposed to build up over time so not expecting any side effects next week.

We also had lots of lovely visitors who just popped by for an hour or so, which was nice.

I had a pampering lady come around on Tuesday and feel more human again now. Also been to the dentist on Wednesday who fixed a part broken tooth, seems I lost some blomb bit in Germany (probably all due to the 'lovely' hospital food).

Went to a little garden centre with a friend yesterday and got loads of plants all for £3.50 - great bargain!
'Survived' two lots of visitors today and got some more friends popping around this eve.
House full of lovely flowers.

Caz - your trick about the tulips IS really working. Still straight after a week, only three drooping. If anyone wonders put a 2p copper coin or the like in with your water. really seems to work wonders!

I think that's it, you know now what I have been up to. Just awaiting the two day (tom and monday) heat wave that's supposed to hit the Midlands with a bated breath now - will it really happen?

Lots of love,
RaquelXXX
 

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Monday 11/07/11

At Langdale Valley

Hi everyone,

I guess it is time for another update!

We set off to the Lakes two weeks ago with the plan of spending 4 nights up there but then we ended up continuing our travels to Northumberland (England's Northeast for the non-Brits amongst you) and Durham and Whitby and finally a quick stop in Leeds to visit our friend Sheila.

We had such a fabulous time in the Lakes (even the weather was kind to us) and it seemed to be doing us both so good that Paul suggested we carry on travelling especially since we had nothing on until the Tuesday the week after we left. I am so glad we did. Of course in the Lakes we visited our usual haunts in Ambleside (where we were staying in a nice B+B right in the centre, which was just what I needed due to my lack of mobility), and in the Langdale Valley and of course we went up to High Close where we got married two years ago and just sat outside on the bench and tried to soak in the atmosphere of that wonderful day/weekend just over two years ago.

Paul also pushed me (wheelie=wheelchair) around Loughrigg Tarn, which must be one of the most beautiful spots on earth; a small 'lake', down from the quiet path, surrounded by green and in the background the beautiful mountain range with the Langdale Pikes dominating the scenery. And also in the background probably the most dreamt of cottage overlooking the tarn. You may be thinking 'oh no, Raquel is in a wheelchair' but you needn't think that because I don't. In fact I smile when I sit in it because for me it is only temporary while I am recovering. I get tired easily still although getting better and at the moment I can not walk such distances simply but that doesn't mean I won't be able to in the future. I am getting better and that is the main thing. And the big bonus is, this way I still get to all the places I want to see and don't have to miss out! And just to clarify I am not always in a wheelchair, just when it is too far/much to walk and when I am tired.

On the night, it was such a beautiful evening with the most wonderful light shining through the trees by the little river, (whose water is the cleanest I have ever seen) that runs into Elterwater 'lake' from Elterwater Village, so we decided to go to another of our usual haunts, a spot by the 'lake' where we had some of our beautiful wedding photos taken by Marie and Paul. The only problem was that the path getting there had changed significantly or maybe you don't notice it when you can walk but it was uneven, rough, full of big pebbles, treeroots etc, basically not designed for wheelchairs and I am sure Social Services would have a word or two to say if they knew what kind of terrains we are using wheelie on.

We also explored some new places like Brantwood House by Coniston Water, where John Ruskin spent his last years. A beautiful spot on earth, wouldn't mind a house with a view like that one. We also went to Holker Hall, which again was pretty; nice gardens and interesting old mansion; Grace Kelly was a frequent visitor here. We also tried to add some islands to our collection and went right to the South of the Lakes (the other side of Morecambe bay) and went to Walney Island and had a look across Piel Island, which has a castle on it and you can sometimes walk to it, if the tide is low enough. We visited the Wordsworths' graves in Grasmere village and had a walk around the gardens there. We also managed to catch up with some friends. Dylan kindly took us out to Troutbeck Village to a lovely pub, where we had some very nice food and beautiful views over the Troutbeck Valley. Of course Dylan's local knowledge came very handy. He took us over the amazingly gorgeous Kirkstone Pass back into Ambleside. The following day we were lucky to be able to meet up with Corinne and Paul and little Jude who happened to stay up there in a caravan near Ambleside. It was great being able to catch up and have a good old chinwag and a laugh.

The following morning we took advise of Dylan and explored the route via the Kirkstone Pass along Ullswater onto the M6 heading towards Alnwick, where we stayed for a couple of nights exploring castles in Northumberland. We took a quick stop at Hadrian's Wall on the way there and we stood on a flat bit of the wall enjoying the view over the rolling countryside.

In Alnwick we visited the Castle and Gardens. At the castle the first 2 Harry Potter films were filmed outside but apart from some broomstick lessons in the courtyard there was no sign of advertising or exploiting this. The film Robin Hood-King of Thieves was also filmed here (the one with Kevin Costner) and also the first series of Blackadder. To get upstairs inside the castle we were allowed to use a small lift because of the amount of stairs. The funny thing about it was that it was so tiny that Paul and I just about fitted in. We were told that the Queen had been in there the week before for a visit to the castle but she went up on her own and Prince Phillip also on his own. Question is are they bigger than us? Was her dress too big? Or is it not suitable for a queen to be so close to her husband in a common lift? Any ideas??

The Gardens in Alnwick were also quite interesting, we even did a tour through a toxic herb garden. Gruesome.
Saturday was spent castle hopping. First on the list was Lindisfarne Castle on Holy Island. We had luckily checked out what time you could drive across to the island via a causeway. Once on the island we had a nose around and got close enough to the castle but didn't go in. We enjoyed it on the island. Next up was Bamburgh Castle which was right by the sea also but completely different. Again we very much enjoyed our visit here and not only because the staff was so incredibly friendly and bent over backwards for us. We could see the Farne Islands in the background (apparently full of seabird life) and the wonderful, extremely long and quiet beach below. Last on the list was Dunstanburgh Castle, and old ruin right by the sea. Again a totally different type of castle. We didnt manage to get to it but close enough thanks to another terrain that wasn't suitable for a wheelchair (coastal path). Not sure what the cows were thinking when they saw us.

Sunday we went to the beautiful cathedral city of Durham and stayed in Whitby on the night. We didnt really have enough time in Whitby so I would definitely want to go back there sometime. It is right by the coast, got a beautiful river and little port and houses on West Cliff and East Cliff high above the river on both sides. It also has an amazing Abbey ruin high above the town and of course brilliant Fish and Chips.

What you haven't booked your trip to the Norh of England yet?

Monday we visited Sheila in Leeds on the way home. It was extremely lucky we were able to catch her, too, as she was soon off down South herself in preparation for her return to Barbados.
We got back Monday late afternoon, a week ago. I was delighted to see the garden and hanging baskets had all survived the warm spell and of course we were lucky that Paul's mum was around to give the garden some water while we were away. Love the garden.

And then I guess we were busy with appointments and stuff last week and of course I now got itchy feet and am looking where we can go to next. I am trying to think if anything important has emerged from any of the appointments. I guess it was good to see that the physio exercises last week didn't actually cause a reaction so I think it was the Lymph Massage and not the exercises, which is good news. Had to see Prof on Thursday last week; he wanted to make sure 'I wasn't falling apart since I had started the chemo tablets' because he thinks he knows what I am like and apparently I would go through a lot of suffering just to get better. Strange then that I told him I didn't want the daily injections anymore that Paul had to administer in case of blood clotting as I found them too torturous and done my own research which suggests that I don't actually need them and also that they could actually cause some nasty side effects. Also finally got through to him that I don't want to be on the steroids any longer, not even on 2mcgr steroids (small dose). So he finally got that but it is going to take 6 weeks to ween me off. The next thing I really need exploring is why he has decided to keep me on these tabs constantly. He claims he has put me on a lower doses and people fare better with that than the usual 2 weeks on, one week off. The thing is, I read the info leaflet that comes with the drugs and I am actually on the normal doses, not a lower one. So I will be doing my own research. Paul seriously thinks that my oncologist is so fed up with me proofing him wrong . . . .I can't really put it here, that would be criminal if that is what he was doing and I don't think Paul is right.

We also had lots of evening visitors last week, which was nice, too. My brother and family are currently visiting my parents, so that is nice, too, as I get more time to talk to my brother and we get first hand info how my parents are really doing.

Our little nephew, Harry (2) visited last week but slept almost the entire time and had about 15 minutes here where he was awake. So apparently he complained after in the car and said'I didn't want to leave Raquel's house yet. I hardly spend any time there' (he has his little routine of what he does and plays with when he comes here etc). Unfortunately the little man is suffering with hayfever already and when his nan wouldn't let him in her garden because of it and the fact that it has a tree with pollen he said' I won't go near the tree nan'. so cute or what.

Saturday I made an older lady a birthday cake; she does my feet (reflexology) once a week to give Paul a bit of a break and she had tears of joy in her eyes. So glad I made it.

Sunday (yesterday) we went to a local sightseeing place, Harvington Hall, which was fab. An old moathouse with so much history and such an amazing old beautiful building from the 16th century (lots of wood). Then I got into a baking frenzy. I have recently got into a routine again to make our own bread in the breadmaker. So I did one of those, then I did Paul a fruit loaf ,also in the breadmaker, then I made a fruit crumble and a carrot and almond cake. No wonder I was tired in the evening despite Paul helping of course!

Last and not least, dont forget to sponsor the girls - they are running for an extremely good course next Sunday in Plymouth. Research into Cancer unfortunately takes a lot of time and money - if not we could all look at a brighter future - here is the link for ease of access http://
www.raceforlifesponsorme.org/carolinelaw2603

And last but not least a petition from my hero, Lance Armstrong, maybe you can find time to sign it.

 
The UN Summit is a one-in-a-lifetime opportunity to make fighting cancer a global health priority.
Read LIVESTRONG’s open letter and join us in telling world leaders to seize this historic opportunity:
LIVESTRONG.org/SignOn
Let’s make sure cancer survivors everywhere get what they need to face this disease head-on.
LIVESTRONG,
Lance Armstrong
 

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Friday 05/08/11

Needles Needed

Hi Everyone,

You probably wondered why you haven't heard from me since my positive and euphoric (?) recent updates.

Well, unfortunately we went for a routine MRI scan on the brain about 3 weeks ago with results a few days later and not good news at all. There are several new mets on the cerebellum and spreading fast at the time it seems (next scan will be in a few weeks again). To be honest, after having been doing so well, it was a major shock.

The orthodox world can only offer me a full Radiotherapy (RT) brain scan and aren't exactly selling me this (no guarantees it would work and would make me feel worse actually) .I have been feeling rather unwell since the news. Dizziness has come back plus headaches so it all wasn't good news. I have to admit I have been extremely stressed and not me at all, shouting and being depressed and wanting to cry all the time, it just has been bloody awful. I partly blame the mets and partly the drugs (had to up the steroids again unfortunately to reduce swelling on my brain, when I was just trying to wean myself off them).

And don't have a go at me for feeling low, I have been putting up with this for nearly 4.5 years and I have mostly been positive!!!

And I am no saint, i may be an inspiration but I am no saint!

Well, it has been a tough ride recently, we had more travel plans and really that is all I'd love to do right now but I have just not got the energy. We managed to do some local trips on better days (Warwick Castle, Harvington Hall, Hartlebury Castle, Hereford) and hoping to do a bit more. Even thinking of hiring or whatever a caravan to travel. Flying apparently not such a good idea, well we will see.

So for now, I have started on the mistletoetherapy today. I feel better, whether that is psychological or not, I can not tell you but today is a better day.

I had a quick spell in hospital (24 hours) last Saturday and I had the macmillan (uk cancer charity) nurses coming and bombard me yesterday so we are kind of all 'set now'. To be honest having to make decisions about being resuscitated (wiederbelebung) or not hasn't exactly cheered us up and being told the Marie Curie (UK cancer charity) nurses will come and sit with me for 3 nights next week hasn't lifted our spirits either, strangely. The orthodox world is just really pulling me down with the mad Prof being a complete arse, sorry but it has to be said. We saw him last week and I thought I had turned a corner with him but he was really still not getting why I am not prepared to give up.

This week all I needed him to do was agree to use my portacath for some high intravenous Vitamin C and he couldn't really authorise that but more importantly I needed needles from the hospital to administer the stuff .my sis in law who is a trained nurse is supposed to administer the stuff so we can do it here at home and I don't have to trail down to Bristol 3 times a week for the next 5 weeks, which is extremely tiresome for me. the coward lied to me (saying that wasn't his call and he couldn't authorise as they can't send out needles as I could be a heroin addict, haha) and we are now still trying to source these bloody needles as they normally only get delivered to hospitals and not individuals.

I have been so stressed and upset about this. The one thing I ask him which would really make my life much easier at the moment and he can't do it. All he had to say to me was 'that he had hoped I would have found some peace by now'. So basically I should give up. I told him that that was never going to happen. Paul had a great idea, he thinks I should send him a copy of The Verve 'the drugs don't work'. Loving it. Probably will do, much better than all the anger.

Anyway, if any of you have links to an oncology ward, could you please let me know asap, maybe you could help, it would mean the world to me if I could get hold of these needles by Tuesday or early Wednesday am.

Love you all and please don't be sad, it upsets me too much. I just keep crying all the time, just please try and stay positive for me.

PS Interestingly the 'complementary or alternative' doctors have been very positive, it is just the 'orthodox' world that is trying to drag me down but I guess they make me so angry that it actually keeps me going and fighting just to prove them all wrong.

 
PPS my mum is coming to visit for two weeks from next Thursday to help my own poor saint Paul, so that is going to cheer me up. I just need my mum right now.
 
Raquel

XXXX

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Tuesday 09/08/11

Needles and Campervans

Hi All,

So many of you have been asking so I just want you to know that of course I have got needles. It is a good sign, I think, and it really cheered me up today because all of you that know me know I wouldn't have the needles if I wasn't me anymore.

So how did I get them???

None of the possible sources could deliver for today or tomorrow morning but today I managed to get 5 needles from my hospital. yes, I am dead pleased with myself. If only the prof knew, haha!!!  it completely cheered me up and changed my mood.

Other than that I generally feel a bit better, having started my mistletoe-therapy treatment and also started to make plans for travelling again rather than just focussing on Diddy all the time.

We are hoping to do a little trip into Wiltshire and Jersey around Mid/late September, then we had already flights booked to Cologne a while back at the end of September and hoping that we can still do this against all the odds and when we are back from that I should have finished my Vit C treatment and would love to go and see the Scottish Isles. Somewhere I have been wanting to go for ages.

When after that I feel well enough, we shall be off to do some of Europe, all of this by motor van or campervan. I know it is a dream at the moment but dreaming is good and cheers me up. I just need some sleep right now and hopefully that will improve my rather depleted energy levels. I can not sleep because of the steroids but I need them to control my dizziness. it is really difficult. So yes I am very hyper therefore.

Love you all lots, keep your fingers crossed for me and stay positive for me and thank you for your optimism, I really need it right now.

XXX Raquel

PS anybody got an idea where we can hire or buy an inexpensive but comfortable motorhome from, please let us know! Need loo, shower, comfy seating and bed, that is main thing for me really. Don't need any fancy snick snacks.

Planning to do the big world next year, overseas that is!!! Am I crazy??? Maybe - but I am loving this. Been doing a lot of crying, too, so feel a lot better now.

Also been looking at moving to the seaside (haha). thought of a bungalow with sea view in Pembrokeshire or Devon and Cornwall, like I say, dreaming is good, think it is a bit out of our price range. .. . or maybe am looking on the wrong internet sides?

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15/08/11

Eye Sight Not Great

Dear All,

Please please don't take this the wrong way but I can not currently able to respond to individual emails or text messages etc/

You may get the odd message from me because I am after some help but if I then don't respond with an update don't necessarily worry.

My eye sight is not great at the moment and I am finding it rather difficult. Also I just seem to have caught a tummy bug as I have been having diarrhoea since Thursday evening and feel very little energy at the moment.

Thank you all for understanding.

Love you all,
RaquelXXX
 

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Monday 22/08/11

What we've been doing and plans for the Future

Hi All,

So what is really going on at Peppermint Cottage?

Every day is different and I can not tell you from one day to the next what is going to happen to help you get an idea:

Tuesday 9th August saw Dr. Ritz, the pain specialist, who recommended a full brain RT and obviously doesn't believe in mistletoe and high dose vit c but would love to be proven wrong, he also wrote a very nice letter copying to all other docs including prof Ferry about what I thought on the syringes and copied it to all the docs I see, including prof Ferry, quite entertaining really.

Wednesday 10th went to Bristol for 1st vit.c injection.

Thursday 11th made it to Debbie's birthday party in evening but felt awful all day. Debbie is one of my beloved sister in laws here.

Friday 12th somehow made it to Bristol but not well, really bad diarrhoea, started the night before. 2nd high vitamin c injection.

Saturday 13th still diarrhoea.

Sunday 14th still diarrhoea - called in call out doc, who claimed I had a tummy bug. my friend Alex visited the avie/eve, think i was quite with it and chatty.

Monday 15th all diarrhoea stopped, trying to eat again. Feeling very week. my friend Tanja arrived in the evening and I managed to catch up with her for a bit.

Tuesday 16th they basically had written me off. I woke up feeling very, very ill, and it felt I was staring death in the eye. The District Nurses set me up with a constant pain driver, pain relief, anti-sickness, sedation - that sort of thing. Got really drowsy and had not much drive left - really felt like a gonner but in the avie something happened and I told them to take all the drug machines off, to their great surprise and I made an amazing turn around- just before they had rushed everybody in including the solicitors to sign off my will but something snapped in me after that and I said 'No' ,I don't want this'.

Wednesday 17th never saw anyone so surprised in my life. the district nurse's eyes were bulging out of surprise and she told me she never seen anyone like me with so much strength and energy and that she couldn't see how I do it - my brother came for a few hours, which was nice although I didn't manage to fully focus on him and enjoy his presence as i still felt I had a lot to sort out.

Thursday 18th surprised people even more as left house for local appointment. liver pain suddenly getting worse again.

Friday 19th managed to get to Bristol for 3rd vit C injection, having mistletoe injections alongside from home in tummy.

Saturday 20th sleeping all day, my friend Cathy visited from Cambridge in the evening, sorted out all my filing, which was a great help and relief as Paul and mum not having been able to do that yet. Mum is more like Manuel from Fawlty Towers, she tries, I think, but hasn't been of much help so far, think she is more of a burden to Paul than help.

Sunday 21st had vit c number4 from home as my wee lovely sis in law, Bungle, who is a nurse is now allowed to treat me from home. Bungle, parents in law and Rob visited.

Monday 22nd father arriving, Liz Gamble 2, very kindly offered to pick dad up from London station and drop him here. great relief.

Tuesday 23rd Paul working hopefully at the Blind Centre. got appointment for bone injection (bisphosphonate) at RHH. afternoon mri brain. eve results. fingers xd.

Wed 24th vit c 5 and mistletoe injection.

Thursday 25th parents leaving. Audrey at 3.30pm for a facial and my nails hopefully. Bugsy Malone at 19.30, and the maybe onto Barmouth?

Friday 26th Barmouth caravan invitation to see Debbie and Ste and little Harry. When vit c 6 and mistletoe?

Sat 27th journey home from Barmouth, evening Chinese production of swan lake ballet at Birmingham Hippodrome 19.30hrs

Sun 28th vit c 7 and mistletoe (or Monday)

Mon 29th vit c 7 and see above!

Tues 30th cranialosteopth appointment at 12.15pm

Wed 31 possibly vit c 8 and mistletoe

Thursday 1st new car, i think!!!!

Sat 3rd vit c 9 and mistletoe

Sunday 4th a day trip to Barrie island with Caz reminiscing Gavin and Stacey (tv series, very funny)

next week days need to work out treatments

Weds 7th - vit 10 and mistletoe

Thurs 8th . Hairdresser coming to house 3.30pm Super Trouper 19.30 at Alexandra theatre Birmingham

Friday 9th should somehow be on vit c 11 - so still need to work that out?

Saturday evening 10th watching play at Stourbridge theatre, murder weekend. Cousins coming to visit around that time, need to know when because am not good with surprises at the moment :-) probably trying to get to Scilly isles that week before 29th of September - which would be lovely then hoping to go to Cologne from Friday 30th evening (flights booked for some time), going to see Cathy before then as she lives in Cambridge nearby. Back from Germany 6th of October

8th of October watching legally blonde, the musical, at the new Alexandra theatre.

10th October off in our new mobile home to the Scottish isles (Which we have not bought yet so let us know if you see one that looks good, over 2L diesel, under £10k and with shower, toilet and no rust), hoping to do them one by one but need to check the ferries and sailing times etc and yes we do want to do all of them! yes!

When we come back from Scotland it will probably be mid of November. We will then soon head to Wiltshire to visit Corinne and paul in Melksham and Ann and Andrew in Bradford upon Avon. We will also visit Wells and Lacock. we will then take the ferry to Jersey in our motorhome and carry on to Northern France from there

We will start our first European trip in northern France and travel around the north west coast into northern Spain, along the coast into Galizia, hoping to get into Vila Verde where family originates from to do some family tree work

Would like to show Paul Portugal - travel through Portugal to Southern Spain (Alhambra etc), Gibraltar, southern Spain but take in all the islands like Ibiza, Formantora, Mallorca, Menorca, back to mainland , somehow back the coast to Barcelona. Probably along last bit of Spanish Coast via The Pyrenees into France. Still planning the next bit (and possibly trying to get to Morocco) but probably via southern France, French Riviera, Corse, Sardinia, isle of Elba, Sicily, isle of Capri - all in no particular order. possibly more islands (as want to collect as many islands as poss), there is also the isle of Monte Cristo near the isle of Elba. Would like to visit Siena in Italy, then the Northern Italian lakes like Maggiore and Como as been to beautiful Garda, wouldn't mind doing the latter again. Then from there probably straight into Salzburg and Prague, Dresden, Weimar, Hamburg.

Would like to see friends in South Germany again but not worked out yet how - Minna and Andreas and Kids in Utting in Germany? Christine and Ulli in Munich, Sabine in Ravensburg, also would like to see Bodensee (Lake Constance), Gudrun and Birke and Joschi and Angela and Andreas and kids in Stuttgart.

Along Rhine would be an option to see Sylvia and Dunja in Cologne (but then can't do along Prague etc. so still to be worked out), Sandra near Cologne, Stepnan in Gelsenkirchen, once in Hamburg obviously see bro and family and Tanja

From Hamburg probably head West to Amsterdam and Bruges via Bremen perhaps Amsterdam? Igna? Jildou?

probably back into UK via Ipswich or Harwich?, Colchester - Liz, Chris and Molly and then not sure yet, trying to work our way through south England/London back into Stourbridge

Lots of options and lots of friends around London and the South - waiting to hear first from you guys if you are around before I book anything want to see a show or two in London, defo Mamma Mia and Oliver!

SO - you keep asking how you can help/what I want

Now i know

- tips for itinerary for any of our planned trips
- research into Scottish ferries, bearing in mind starting mid October and first looking at Hebrides, starting with Glasgow Arran I think, then just try and do each island. if easier starting further north (Shetlands) and coming down that is fine. Probably would like to get as far as Faroer Islands.

Also want to do the Harry Potter train from Fort William to Mallaig. So Faroer Islands, Shetlands, Orkneys, all of the inner and outer Hebrides - any help would be appreciated?

 
Any help with Europe itineraries
 
So then we will be back

If you want to post me anything as you keep asking, there is a long list of books and DVDs (to cheer me up). Currently watching the Hallelujah Trail with my Marie Curie Sit in Nurse.

Books:

DVDs:

Gavin and Stacey series 3 and 4
Gavin and Stacey special xmas edition
the old pink panther series with Peter Sellers
the Mentalist series 1-4
Desperate housewives series 7
 
Other: Batiste, Dry HAIR Shampoo
pair of Wellingtons, I am a size 6 with very wide feet
dressing gown green like apple green
Fairies
lights for garden - pretty fairy light type things
Arch for garden - wooden trellissy type thing
tall vase
square cake tin cover to transport square cakes
nice thick bath towels (Grey or baby blue)
 
or check out my wish list on Amazon.com

In the new year hoping to get to New Zealand and oz and hire a motorhome there.

Nz - probably going to do a lot of travel around the northeast of the island

OZ - kind of have a plan, too, which will include most of the coastal area, Ayers Rock and Co, Tasmania, Kangaroo Island, all of the Great Barrier Reef Islands, Fraser Island, etc., also hoping to get to Katrina's wedding at the end of April and of course visit my family in Sydney.

Then Canada and USA - again waiting for itinerary suggestions. In USA definitely probably start with organised package in NY, then head north into Canada?

Colorado to visit family, San Francisco, New Orleans, Rest quite open, mostly interested in country side like Gran Canyon, Mount Rushmore, South Dakota, New England? or only worth in Fall for Indian Summer?

 
 
I love you all very much XXX

PS if anybody wants to come and c me, u r very welcome but b prepared that i may not b well enough to see you at the moment. hope u understand now. xxxx

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Thursday 25/08/11

Hi all, perhaps u could send your pic, I know some of you are in remission but I don't think it matters; Lance has been in remission 4 a long time 2, I think you got some contacts.

Raquel XXX

Dear Raquel,

When Lance and I meet with world leaders at the UN Summit in New York next month, I’m going to tell them a difficult truth that they need to hear: Cancer is a global crisis and it’s time for them to Face Up To It.


More than 100,000 members like you signed our open letter calling for a global effort to take on the cancer crisis. And LIVESTRONG will deliver your messages to key Heads of State. But we’re not stopping there, and you can have our back in another big way.
LIVESTRONG is collecting photos of supporters like you from around the world to show in New York while the summit is taking place. By adding your image, you can help confront world leaders with the faces of our global movement. Join thousands of others and make sure that world leaders cannot ignore our public call for action.
Add your photo using our simple Facebook tool and tell world leaders to FACE UP TO IT.
(If you’re not on Facebook, you can still add your photo here)

Add Your Face 
We’re not demanding miraculous breakthroughs or wonder drugs. This is about getting commitments from world leaders to implement proven solutions we already know can save millions of lives.
When we walk through the doors of the UN, we’d like to know that you and thousands of people from around the world are with us in calling on world leaders to Face Up To It. Will you add your photo right now?
Show world leaders the face of our global movement and help make cancer a global health priority:
apps.Facebook.com/FaceUpToIt
Together, I know we can make sure our leaders seize this once-in-a-lifetime opportunity to stop the world’s worst killers. 
LIVESTRONG,
Doug Ulman
President and CEO, LIVESTRONG 

 Donate   


Twitter   Facebook   RSS

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Sunday 28/08/11 - Thank You and Goodbye Raquel

On Sunday 28th August, our lovely lovely Raquel passed away.

Right up until the very sudden end Raquel was inspiring people.

We had her last email update on Thursday 25th just three days before her death detailed below, where she was encouraging people to support Lance Armstrong's Cancer Charity.

The funeral took place on Friday 9th September at 11.40am at Stourbridge Crematorium.

Raquel by the way did not want any flowers but wanted any donations made to Macmillan Cancer Support, Cancer Active and latterly Cancer Research UK.

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