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

f you would like to send Raquel any words of advice or encouragement then you can contact her on raquelbg28@hotmail.com

Anyway, here are Raquel's reports so far.

Tuesday 31

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

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.

Wednesday 04

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

Tuesday 25

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 . . .

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

Wednesday 21

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

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

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  : Peppermint Cottage, 22 Lavender Lane, Stourbridge, DY8 3EL

Did I say 'brief' update? 
 
Lots of love  

RaquelXXX

Friday

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

Wednesday

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

Wednesday

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 

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

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

Wednesday

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
 

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

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

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

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

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

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
 

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
 

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

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

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

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

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

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

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

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

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

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

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

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
 

Friday 28/09/2007

Is it Toooooth or Tuth

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

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

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

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

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"

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

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

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

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

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