To Raquel's Progress Diary
Early in 2007, Raquel
Brebach Guimaraes Fletcher, one of Dudley Ladies most popular European imports
was diagnosed with Bowel cancer and from time to time she sent in
updates of her progress through all the ups and downs of the NHS and
Unfortunately Raquel died on Sunday 28th August 2011 but please read
her very moving, very funny and inspirational progress throughout that
28/08/11 - Thank You and Goodbye Raquel
On Sunday 28th August, our lovely lovely Raquel
Right up until the very sudden end Raquel was
We had her last email update on Thursday 25th just
three days before her death detailed below, where she was encouraging
people to support Lance Armstrong's Cancer Charity.
The funeral took place on Friday 9th
September at 11.40am at Stourbridge Crematorium.
Raquel by the way did not want any flowers but wanted any
donations made to Macmillan Cancer Support, Cancer Active and
latterly Cancer Research UK.
Below are also a number of photos that people have sent in
that remind us all of what a lovely warm person she was.
Story Starts Here in Thursday
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!
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!
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,
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
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
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
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,
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
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
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.
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
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,
I too wanted to say thank you for my lovely
card and all the kind words of support I have received - it really cheered
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
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
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
Lots of love as always
Udderwise Known As Cream
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
Lots of love,
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,
Is it Toooooth or Tuth
You are probably wondering what I have been up to as I have been quiet
for a while . . . well I am not ignoring you, apologies for the phone
calls and emails I have not yet been able to reply to but I have
suffered from severe drowsiness and fatigue recently and it is not even
the Chemo that's causing it.
I have had backache problems since the
operation and have recently decided to mention this to the medical staff
and they reckon I suffer from neuro something pain (nerve related), so
basically the surgeon cut through some of my nerves during the op -
easily done unfortunately - so they have put me on another drug to fight
it and I am not taking it very well so I have been very spaced out
recently. I couldn't even walk properly and looked drunk most of the
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 -
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
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
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
Due to lack of energy I am still stuck on the last 100 pages of Harry
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
Insomnia Promotes Speed Reading
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
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
Anyway, I am going to love you and leave you - must make the most of the
Lots of love,
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
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
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
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
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,
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
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
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
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,
The Art of Typing With
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
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,
Things Are Looking Up
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,
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!
Lots of love,
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
Lots of love,
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
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
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
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
(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,
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
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
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
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
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!
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
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
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
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
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
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
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!
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
I can't tell you how happy we are right now. And it is spring and it's
Love to 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
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
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
I feel a lot more confident now that I have had such good results that I
not actually needing chemo all the time like the mad prof and gang
I do wish I had even more courage and trial life without chemo for a
longer period but I am not quite there yet.
On the good news front Paul has passed his reflexology exams and I have
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,
WEDDING BELLS - RAQUEL TIES THE KNOT
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
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
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!!
CT SCAN RESULTS
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
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.
Raquel and Paul XXX
OVER THE INITIAL SHOCK
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,
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,
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,
OFF TO SUNNY PORTO
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
BACK FROM SUNNY PORTO
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
Anyway, just thought I 'd check in. Lots of love,
YES IT'S THE DREADED COLD
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
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,
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,
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 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
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
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,
Christmas.... German or English
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
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
Oh To Be Back In Barbados Now
That Winter's Here
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
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
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
So, I think this is all the news for now.
Look after yourselves,
Lots of love,
CT Scan Results
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
Lots of love,
At Least it's My Birthday
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
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
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
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
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
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
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
on Holiday - Volcano Permitting
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
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
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,
Back From Holiday and Targeting The Race for Life
I haven't been in touch for a few weeks because so much has happened yet
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
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
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.
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
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
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.
Lots of love,
Like Reading Underwater and off on a cruise again
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
And now I am trying to think what I have been up to since my last
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
Lots of love,
Raquel is getting better
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.
Raquel goes to Deutschland
I thought I check in to let you know how I got on in Germany with
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
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!
Lots of love,
Keeping Away From Colds
I think I reported last when we had just come back from Frankfurt in
Germany. The aftermaths of the treatment didn't seem so strong this time
, however the lack of energy has still been getting me down but with the
help of some magic drops from Germany (thank you Sylvia) to improve
circulation problems (I generally have a very low blood pressure) and a
blood transfusion that was finally authorised after a lot of nagging and
complaining I feel a lot better now.
Having a lot more energy has lifted my mood, too, amongst other
things. The thing is they don't normally authorise a blood transfusion
until you feel close to death (sorry, but it feels the way) and I was
constantly told my HB (haemoglobin) was too high to have a blood
transfusion but luckily my oncologist saw sense in that I was
'symptomatic' despite the HB reading so we finally got somewhere. Hip
Now I am trying to remember what we have been up to the last few weeks.
.. as a highlight there have been many meetings and visits by friends I
hadn't seen mostly since our wedding last year. Lots of laughter and
chatting, definitely a good cure.
We travelled around beautiful Devon and Cornwall to celebrate my
friend's 40th. We had a wonderful time and October with its golden ,
warm light didn't let me down (I had told them to come over this time of
year and of course it was pouring it down with rain for the first two
days but things improved considerably after).
We also went to Porto to visit the family there and had a lovely time as
always. We went for a long weekend. It was lovely to see nearly all the
close family. Mum did 'try' to stress me out though as she rang on the
night before our flight and said we should try and change the flights
since they had forecast a hurricane and lots of rain for the entire stay
(we only went for a long weekend). I decided to work on my positive
thinking and we had wonderful sunshine for three days and rain only at
But of course there were also the moments of disbelief that one
suffers sometimes with people's comments and lack of sensitivity. My
great-aunt telling me about all these poor people that die from cancer
and one of my aunts asking if I don't want any children - Hello!?! In
the latter case I guess it comes from not thinking or perhaps from
forgetting because I look well that it is actually impossible with
the situation I am in and not quite at the top of my list of priorities
when actually I am fighting for my life.
On the last day we had walked to a place probably about 3 miles along
the coast to eat my beloved 'Bacalhau' (Portuguese delicacy but really
it is just cod
. One of my uncles and aunt came with us (they drove there) so they
could give me a lift back as I can't walk that far at the moment or
maybe I could but it would probably kick off my hip/leg pain more. Of
course we didn't all fit into the car and my dad wanted to walk back on
his own but Paul thought he should walk with him. Considering that
neither speaks the other's language I got quite excited as I thought
this was going to be an interesting language experiment. .And so it was!
Both came home having learnt a few words of the other's language. Sea,
seagull, sand, car . . .
Yesterday we went to the 'dive centre' where I get my oxygen treatment
and fed the ducks with leftover Rick Stein (celebrity chef) bread from
Padstow in Cornwall. There was a lot of fighting going on and maybe the
ducks realised they were in for a delicacy. You wonder why we are
feeding Rick Stein bread to ducks? Well, when I bought it I had
forgotten that we would only be back home for less than 48 hours before
we would travel to Portugal so by the time we were back . . .
This week I should have had chemo in the uk but my neutrophils (?) are
too low. These are within one's white blood cell count and fight
infection and illness etc. It is typical that after I had just come
around to having the chemo (I had originally decided that maybe it was
all a bit much together with the treatments in germany) I couldn't have
So, I am trying to keep away from any people with colds and staying
at home. I was hoping for the cloud to shift so I could do some
gardening but it is not looking very promising today. \Never mind, there
are plenty of other things to do indoors!!!
Lots of love,
Stuck For Words
Am a bit stuck for words at the moment hence no updates. I had
physically recovered from the Frankfurt trip with better energy etc and
I had even recovered mentally and started to see the funny side of
Birdie (the prof in frankfurt) having a team meeting while he was
carrying out the treatment on me (obviously acceptable in the world of
Birdie) ; the 'raft' of German directness delivered with
German precision (suddenly I started to feel for my English colleagues
who used to be at the receiving end from me) - they couldn't glue me up
which is what they normally do to the area where they went in with the
catheter for one reason or another so because I am on Warfarin (blood
thinner) they decided to put this very tight bandage around my hip area.
Of course that wouldn't have normally been a problem but a.) the
bandage was cutting into my thighs and b.) it triggered the pain in my
hip from the fractured bone big time.
So of course I was having none of it and the doctor had to be called.
A very efficient young female turned up and told me it was either that
or 'I would bleed to death' (sonst verbluten Sie'). Paul smiling along
no matter what she said as it was all in German and he didn't have a
clue what she was saying (all made me laugh later). I was not
particularly impressed with the fact that I may bleed to death because
I just knew I wasn't going to (My latest INR - blood clotting rate
reading had been exceptionally low so not really a chance). the doctor
murmured something about the problem of female fat deposits (oh yes, she
did!!!) whilst putting a different kind and more comfy bandage around my
Oh, and I had even recovered from the fact that Birdie rings the
patients he has treated the following morning at 6am. A 'bliss' that we
had so far escaped as his secretary must have been ringing our home
number whilst we were happily sleeping in a Frankfurt hotel. This
resolved I had to leave my mobile number behind and indeed it wasn't a
joke, we received a phone call at 5.50am the following morning.
Now I am having some more Radiotherapy to my hip area as the bone
pain etc. there had gone worse again (this was always expected and doc
was surprised I didn't return sooner). The good news is that the RT is
working already and after three of five sessions I can sleep again
(somehow the pain always kicked off at night). I am more tired again
because of the treatment but it is all under control!
So the reason why I am stuck for words is not because of myself but
because of my friend Lynn Hodges. Many of you know her or work with her
and sadly her spell in remission from Breast Cancer has been very
short-lived. The B- - - - - - has returned and is causing her a lot of
pain at the moment. It appears to have spread to the outside of her
lungs and to her liver and I think chest bone. If I understand it right
its the mets causing fluid pressing on her lungs why she is in pain. She
is today in hospital and they are going to put in a drain to get the
fluid out. She has also had her first chemotherapy treatment yesterday
so we are hoping she will feel much better very soon. I have only put
so much detail here as she asked me to include her in my updates. Paul
and I are very angry with her doctors, we really feel they have messed
this up big time. I know that doesn't help but it is hard to watch them
mess it all up, if they had got their arse (pardone my language) into
gear they could have got it under control a lot quicker.
Change of subject now and more positive stuff. We haven't really done
much these past few weeks. I have managed to get the garden ready for
winter with Paul's help and even put in some more bulbs for spring. Sat
under the ash tree the other day which has now lost all its leaves
whilst a bunch of starlings were chilping their little bodies out. It
was an amazing noise, sounded almost like an alarm. It was lovely as a
bright day, wonderful light and bright blue sky.
We went to Heidelberg for a day and met Birke there also who came up
from Stuttgart (we combined this with our Frankfurt trip). It was lovely
to see Birke and Heidelberg always brings back lovely memories when
visiting their in the past (auntie and cousin ; - ))
We also went to see Lord of the Dance here in Birmingham. The crowd
went completely mad when Michael Flateley appeared on stage and Paul
looked around looking really confused. It was quite clear he couldn't
understand what all the fuss was about. It was so funny to watch!
Well, I enjoyed it a lot and I am sure Paul enjoyed it, too, there
being a lot of pretty lasses in short dresses. ; - ))
Oh, and of course we went to a local Bonfire and fireworks on Bonfire
Night the other week. As you know I love my fireworks!
Now we are looking forward to christmas and the New Year and I have
started wondering how I want to celebrate my 40th birthday next year.
And next week we are off to Hamburg to visit my bro and family and we
will also be able to see my friend Cathy+her little boy Bruce on the
way. So you see, lots to look forward to.
Lots of love to you all,
Sigh of Relief
Just returned from treatment in Frankfurt (yesterday) and the good news
is that lungs and liver remain static (no growth).
So we can all sigh a big sigh of relief now and look forward to
Still quite tired from the journey and treatment and usual adventures
over there which I will write more about when I have fully recovered.
Lynn is feeling better since she had all the fluid drained from her
lungs and she has now (yesterday) had her second bout of chemo. She has
some pain in ribs because there is a bony lesion
in her rib so I gave her a few ideas what she can do to get improvement
as doctors never seem forthcoming, you need to stay on their case all
the time! Losing hair but doesn't care (oh, it rhymes) as long as chemo
is working. I know that's the right attitude.
lots of love,
dark, windy, cold January day took my dear friend away
I have been very quiet lately because my dear friend Lynn has taken a
sudden bad turn over the New Year. We saw her on the 27th of December
and she was fine and days later she wasn't and she never recovered from
that. It seems she had developed a lesion on her brain which caused a
bleeding and that resulted in her rapid deterioration. There was nothing
that could be done and that in itself has been very upsetting.
So Monday - a dark, windy, cold January day took my dear friend away.
I have been struggling to come to terms with this as Lynn was such a
lovely person - in fact one of the warmest, most selfless people I have
ever met. Even in her last days she was more worried about me than
herself. That was so typical of Lynn. I remember her bright smile and
her mad laugh - laughs we had plenty even in this last crazy year and
now she is gone.
Please don't worry about me, yes, I am terribly upset but I am even
more determined now and I know Lynn would have wanted me to fight on for
the both of us and to carry on living life to the full as much as I can
and that I will.
Wind of Change
Just come back from Frankfurt yesterday and am still
fairly tired so not sure how long this update will be.
In the world of Birdie I am still static/stable which is
great news - I know it can mean a small slow growth here or there but
whilst minimal they still call that static as it is not growing at a
certain rate and not all over and no new lesions - I have decided to
leave it to them what they call static and what not. After having seen
recently in front of my own eyes how quickly some b - - - - - - - can
grow static will do me fine anytime for now. I am going to focus my
energy on just trying to get better either way.
I may have confused some of you having said we won't be
going back to Frankfurt anymore for now as I was achieving the same
results in the UK with the biweekly treatments (normal chemo) between
May and August 2010 which also resulted in static/stable. I had
explained this to Birdie but he talked me around and thought it would be
good to give one more treatment direct to the lungs for some proper
stabilisation before going back to a normal treatment schedule here. And
since he has a very good reputation in his field I thought it was a good
idea to listen to him and hence we have been again to Frankfurt. . .
All went fairly smooth this time - they even managed to
get me more or less comfortable on the treatment table (thanks to my
various hip bone fractures lying on the table usually means great
discomfort). Birdie shared his opinions with me while carrying out the
treatment - which were 'what would England do without their Royals' and
'that Lisbon was nice as long as you stuck to the main street and didn't
look down the side streets'. Hahaha.
Even funnier was when we first walked into his office
in the morning and paid his secretary (room right next to his with door
open) - I thought I heard him fart in his room. But then I thought, 'no
Raquel, you haven't slept well, you are imagining things'. But when we
left the room Paul said to me 'Did you hear him fart?' And I said, 'No,
was that for real, did he really, I can't believe he did that'. It was a
loud and long one you see, the sort you'd definitely try and hide
somehow. But no, he didn't. Guess, he doesn't have to??
Oh well, anyway after having 'rested' for 3-4 hours after
the treatment and feeling rather 'ratty' because I don't like staying in
the treatment halls but want to be upstairs with my husband . . . they
finally let me hobble outside to be with Paul. Me very keen to get a
decent drink to get me out of my very 'low blood bunker' (=dizzy and
close to collapse/seeing black) hobbled up to the drink machine to get a
half healthy drink (bionade) from it where the flipping machine had the
nerve to neither dispense drink nor return our money. It was just the
last thing i needed or anyone in that situation needs so I got so
infuriated I managed to create havoc within 5 minutes of leaving my
The problem was made worse by a very stupid woman at
the reception desk who had nothing better to say to me then ' hahahah.
What am I supposed to do about it? How do you think we feel if it
happens to us?'. I asked her 'if that was meant to be a joke?' I did
feel like going into a rant about it surely being a big difference in
telling a patient who had just had a major procedure done to themselves
and just wanted a drink to ring the number on the drinks machine with my
UK mobile which would have cost me more than the bloody drink no doubt
than to her sitting on her fat a - - - all day being right by a phone
and able to just wait there till the man from the machine eventually
turns up. anyway, my eyes were sending daggers at her and I marched off
back to our seats.
And believe me I don't do much marching these days but
on the way I spotted this man moving our clothes from our seats and sit
himself and his wife in Burbon trousers (there is something about Burbon
trousers that annoys me even more, anyway, I am sure that is what
that brand is called beige you know with white and red and black caro
pattern on it - apologies if any of you have a pair) on our seats
whereas there were two empty seats right opposite!! But know they wanted
to have the three seats so they could plant their no doubt Bourbon coats
over the back of the third seat . . . so here I came along in my mood,
grabbed our coats and this man tried to say innocently as if he didn't
know 'Ooh, have I taken your seats'. So I said very loud 'YES!' - the
silence in the waiting room was amazing you could have heard a needle
drop and I left an extra long pause until I said in the same false voice
' Oooh, but don't worry about it'. Grrrrr. 10 minutes later I had calmed
down and Paul and I had a laugh about it but sometimes you just don't
need these things on top of everything else.
Anyway, that's it for now. Will try and get some more
sleep. Just thought I entertain you with a tale or two. Sure it doesn't
happen every day you here about a Professor farting in public.
Lots of love,
Been a Bit Quiet Lately
Not sure if I have been on strike or what but here finally an update.
As you may have guessed I have been quieter as usual as things hadn't
been great in the last few weeks.
Of course Lynn's death has hit me quite hard, in fact it just all became
a bit too much so Macmillan has sorted me out with a free counsellor.
Not sure it is helping but I am always willing to try.
Then I planned my 40th, an event I had been sooo looking forward to but
kind of overshadowed by Lynn passing away a few weeks earlier. I had so
many nice and lovely friends at my party that I did have a great time
although I was in a lot of pain which was probably all my own fault.
I had actually been getting better a few weeks earlier and had tried to
walk without the walking stick that I had been given by the physio in
November (and then she disappeared). I had even managed to drive again.
Then we went to the Channel Islands and probably on Sark, a fairly large
island but with no public transport, I ended up walking all the places
because me being me was not going to miss out now that I had made it
So to cut a long and painful story very short, I feel I overdid it
then as my leg was a lot lot worse when we came back and, well, and then
I had the party a few days later. I had hoped that at the party I didn't
have to use my stick and wouldn't have to worry my friends and family so
underneath that all upset me quite a lot. On the other hand I had a
marvellous time with our house being full of lovely people and 6 people
staying over and everyone getting on so well and making friends.
So then came a difficult few weeks to sort out my pain, I saw the
painspecialist again, who is lovely by the way (yes, a nice doctor) but
very strangely he actually seemed to make things worse.
In fact what happened was that the morning after we had seen him in
the afternoon I must have had a very strong and adverse reaction to one
of the drugs prescribed (although of course everyone is in denial about
that) and my left leg, my Good leg, went into a mad state of pain and
cramp, the right one not being much better I basically was kind of
incapable to walk. Now that of course hit both Paul and me very very
hard, mentally and me physically of course. But within three days thank
god things were back to normal.
The Macmillan team came and supplied me with all sorts of 'goodies'
that frustrated me even more but probably gave me a kick up the arse to
fight, fight,fight. I was given a (in my opinion) useless trolley to
move things around, which I asked if I could redesign it, please. So far
no interest. A Zimmerframe, which upon their next visit I 'ran off' with
as I am far too strong for it (hehe), a wheelchair. So we are now at
the state where all those goodies have ended up in the shed. So
relieved. I of course have my own little agenda and am trying to
get more mobile again and ultimately want to get rid of the stick. But I
feel I need professional help from a physio so if they can't sort
something out for me locally, I will go and pay for it. I am just so
determined to get my leg better again and become stick free.
So yes you will be pleased to hear, last week I drove again and
things are slowly getting better again. But my HB has been struggling
because of all the treatment (have been struggling getting used to the
biweekly chemo again and then had RT in-between) , there has been the
problem with the mouth ulcers again etc. All the things I didn't miss
while I was seeing Birdie.
So I had two blood transfusions in the last few weeks. One before we
went to the Channel Islands which unfortunately gave me the energy to
walk around too much and one yesterday yes, spent all glorious sunshine
Sunday in hospital, but at least I am much better now and can breathe
much better again. It was tiring me out just walking to the loo and back
(all on one level).
We have also been on a wonderful cruise at the end of March for a
week around the Canaries with a stop in Morocco, too. I coped well and
everything went well and we thoroughly enjoyed ourselves and the beauty
of our destinations.
Oh, and we also saw Joseph (musical) at the beginning of March.
Basically, I have decided that doing nice things and going nice places
is good for us and a very welcome distraction from the treatment etc.
So, we will be trying to plan a lot of that this year.
Tomorrow I am doing an interview for Heart FM (radio) as April is bowel
cancer awareness month and I am also supporting a lady who also has
advanced bowel cancer on the phone and foolishly perhaps I have signed
up for another Race for Life although God knows at the moment how I will
be able to do it (it is at the end of May) but we all know chances are
high that I will.
Oh and here is a tip for when you feel really down: go and watch Mary
Poppins, honest. : - )) or Miss Marple with Margaret Rutherford or the
Lots of love,
Raquel has asked me to tell you that she
is going to have an operation tomorrow or Friday 6th May to
remove a large tumour from her brain. The situation is very
serious and she may not pull through but in typical Raquel
fashion she says she has every intention of doing so!
She is still in Germany and doesn't have access to email.
I can't really find the right words to express my feelings at
this moment but I know we will all be thinking of our dear and
wonderful friend and sending her all our love and positive
thoughts. Her strength and resilience in the face of her illness
has been an inspiration to us all and I, for one, know I am so
lucky to have her in my life.
Love, Cathy x
in Germany Part 1 - Post Op Thoughts
My dear Family and Friends,
How long it has been! The following is an attempt
to write a full and honest account of what happened to me - us
so you may need a while to read it all.
We have been back home, in our lovely home,
Peppermint Cottage, since Friday evening but I wasn't ready to
write to you yet but today is the day. I guess I am trying once
more to recover from an emotional rollercoaster and I am also
trying to prioritise as my future is sadly nothing but clear.
I need to sort out appointments and more than ever try
and find other possible cures as the orthodox world has not much left to
offer me. So Paul and I are going through some difficult times again,
and you of course as you don't want me to be in this situation, trying
to find something that will help me hopefully in between me feeling very
tired at times and sleeping a lot and recovering and probably feeling
all drugged up from medication. Although I have bouts of much better
energy in between.
Oh, and before I forget, thank you for all your emails -
going through them left me very tearful and emotional- cards, texts etc
please don't misunderstand I really appreciated them but I really was in
no position to cope so if I didn't reply please don't hold it against
We arrived in my hometown, Stuttgart, on the evening of
Easter Sunday, 24th of April. I was tired but been tired for months and
feeling the illness but other than that no particular symptoms that
could have told me cancer had spread to brain.
We spent a lovely and restful day in the Schrebergarten/allotment
of Birke's parents, enjoyed ourselves with laughter and good
conversation at my friend Gudrun's where we were staying in Stuttgart
West (near Birke). We met Birke's cute new born (beginning of Feb) which
for me was on top of my to do list this year as Birke and I have been
friend's since the age of 14. Tuesday we went to the Wilhelma, which is
the zoological and botanical garden in Stuttgatr, and Paul had to wheel
me around all day but it was ok as it was a lot of walking and hilly and
I just had to be sensible. we had a lovely time catching up with more
friends also. I started to feel quite tired though and remember nearly
falling asleep when we met Stephie. Stephie, no offence! Also at the zoo
our camera got stolen right towards the end, presumably from my lap,
maybe another sign I was very tired and not quite with it as it was a
bit of a miracle how it could have happened.
That night, Tuesday night, I woke up and needed to go to
the loo but something was different. The whole world was turning, I am
not talking about a bit of dizziness, I am talking when you have
overdone it on a bad carousell ride at the funfair, it was awful. Got
knows how I made it down Gudrun's Korridor to the loo. I remember
sitting in her kitchen (next to loo), eating an apple wondering how to
get back. I have always suffered from low blood pressure so I thought it
was just that and I would be fine in a bit. Next morning we did the
usual, legs up, drink stuff etc. and I didn't have that crazy
Drehschwindel anymore although I didn't feel great and we went into
Stuttgart and bought a new camera and went to a cafe with Birke and
little Michel, had a nap in the avie. In the eve we met Gudrun's lovely
new boyfriend and had a very swabian meal (Swabia is the area where
Stuttgart is in and they have very particular foods that I miss like
Maultaschen and Spaetzle), at Gudrun's home. Ah, rewind, loosing track,
we did all that on Tues eve, I mean the evening eating - buying camera
etc was on the wed so in the eve we got Joschi, Birke's hubby to
babysitt in between feeds so Birke could come out for dinner and we
managed to convince Gudrun, too, so we had another nice Swabian Meal on
our last eve in Stuttgart before heading down to Utting am Ammersee,
lovely little town in deepest Bavaria.
So you wonder what on earth we were planning to do down
there. Well my Finish friend from Uni in Cologne, Minna, lives down
their with her partner and 4 children and the youngest and wildest is a
little girl, now 2.5years and is my Goddaughter and that was another
thing high on my to do list this year, to meet her as last time I saw
her was at our wedding two years ago. I recall Paul asking me on the
morning whether I really felt fit enought to travel. But you know me, a.
I thought I kind of was, b.I am extremely stubborn and I hadnt come all
that way to not go now that we were so close to our destination (i think
it was a 2-3 hour journey by train) and now I forgot what c. was if
there was a c.
Anyhow we got to the lovely 1 track station of Utting and
got greeted by two very blond females, one tall one and one little one.
As with everyone else it was so lovely to see them, although admittedly
I felt tired and slightly dizzy, nothing like world-turning dizziness.
Had a lovely afternoon admiring my friend how she managed to stay calm
with all the kids running around the garden and sometimes house and
their friends at times, at the same time trying to catch up with us and
maintaining an Ikea show home style house in pure white with not a
single dust corn in sight.
We had a lovely eve, chatting, the others drinking
strange concoctions of alcohol, I of course sticking to my
Apfelsaftschorle (sparkling water with applejuice).
Next day we watched the Wedding and if any of you don't
know which wedding, wakey wakey, by then it was the 29th of April and
our Prince William married his beloved Kate Middleton, a commoner
(hurray) in Westminster Abbey and we were all watching. In the avie,
Minna and Silja (my goddaughter if you hadn't guessed) took us to Lech
am something, can't remember now, a very pretty town. Where Paul went
off to look after Silja as she kept running off chasing pigeons whereas
Minna and I had a chat, maybe a chat that saved my life, who knows.
Minna asked me how my parents were doing and I said 'that my dad hadn't
been that well and passed out a couple of times and they thought the
potassium in his blood was too high' but i also said to her 'and can you
believe it they never even did a scan of his brain', kind of fully aware
that it could be something a lot more serious. What I mean is I kind of
knew then that something wasn't quite right with me either but the
message hadn't quite been delivered yet into action. But when Minna then
told me a very personal story I thought 'oops' or probably more 'ohoh'.
When I felt worse the next morning I decided I don't
care, this is it, I am going to be checked out. Poor Christine and Ulli
had arrived from not too far away Munich (so maybe we weren't actually
in deepest Bavaria yet) to enjoy a boat trip with us on the Ammersee but
ended up driving us to a private clinic in Herrsching (also on the
Ammersee and now definitely in deepest Bavaria in my opinion as hardly
anybody spoke English there and we could see the Alps)- of course my
friends were an exception-they speak very good English- well not that
the English have much to show for their German nor for any other foreign
Anyhow, at this clinic I got checked out from head to
toe, like I had not ever been checked out in the Uk before and I felt in
very good hands. Sadly they confirmed my biggest fears and found two
metastases (that means spread from my primary tumour the bowel cancer)
on my small brain. One of them was rather large and the other was fairly
small. The small brain is at the back of your head. The message was
delivered to me,Christine+Ulli and Paul in German, oh sorry, you
gathered that already if you managed to keep your attention for so long
; - ) . Anyway Paul somehow kind of understood anyway, not sure how,
might have been the body language. I remember the very kind young doctor
saying to me this has probably come as a major shock to you and me
saying when you lived with this for four years you kind of get used to
it. Not sure whether that was a totally honest answer. I somehow managed
to get a double room for me and Paul in the clinic as they weren't going
to let me go. They were going to put me on Cortison, a steroid and keep
me in for a few days to reduce the swelling. I was also told I didn't
have long. maybe 1-2 weeks and I could be in a Coma/Koma. Then there was
the suggestion made to transfer me to Augsburg where they could operate.
I have nothing against Augsburg but also nothing for it as never heard
anything of it.
Me being me can't sit still when being presented with
such news, so I rang my surgeon in the Uk straight awy, who had removed
my bowel tumour, of course he couldn't help as he is not a neurosurgeon
but his mate was and he'd get me in touch, so I realised I was on a high
learning curve. When on the ward I rang my oncologist ,yes, the mad
professor), didn't get much sense out of him, he thought I was a nurse
and profoundly apologised when he realised it was me. he did say
radiotherapie (RT) was my only way forward, this without seeing any pics
or trying to get any more details of me as to size and location of mets
in brain so that left me bloody confused as the local doctors said I
didn't really have time for RT because of the latter - size and where it
was, RT doesn't work quick enough in that situation and this was
confirmed to me later by other doctors plus Minna had already said that
in her account. My friend Sylvia got in touch with an old friend from
Uni, who happens to be an oncologist these days (Hello Ernst) so I could
have a very useful chat with him and then Sylvia told me about someone
that went to Heidelberg(HD), where they were the only place happy to try
and operate this other person and I also remember my mum always going on
about HD as she watches a lot of programs that feature HD when cancer is
the subject. So maybe Sylvia is another one that kind of saved my life,
just telling me the story like Minna did with her personal account where
by the way, RT was too late or didn't work in time so all help came too
Sunday dragged on, nothing much happens in hospitals at
weekends but luckily Paul could take me to the lake and we could meet up
with the Poesel/Eloranta clan (Minna) who had driven down from Utting so
that cheered me up. Ah, what also cheered me up was my sneaky dinner the
night before. They had forgotten to order me food at the clinic so the
Schallmosels (Christine+Ulli)+Paul were allowed to bring me some food
back and god did I enjoy it, Nuernberger Wuerstle with Sauerkraut! So
German of me, I know, but so yummy, and I definitely deserved a treat
I remember saying to Paul on Sunday eve, 'what are we
going to do'??? Still confused at that point with all the contradicting
advise on whether to RT or Op. Paul came out with the sentence 'Shall we
go to Heidelberg?' And I said 'lets go to Heidelberg'. Had to wait till
Monday afternoon when a very tattery old oncologist finally made an
appearance and gosh was I glad that I didnt have to rely on him for
advise as we had made our decision by then as you know. Honestly, he
could hardly speak and the young doctor with him had to shut the window
so he could be heard and it wasn't a noisy place. They looked very
surprised that I had already decided, well we had, because I did need
Paul on board with me obviously, and that I had already made an
appointment in Heidelberg for Wednesday, the day we were supposed to fly
back home. So we had to let the flights go. I didnt' know what would
happen in the uk, red tape or not but I knew they would see us in
so I kind of told them I was going to discharge myself as
all dizzyness had gone (thanks to the steroids) and I couldn't quite see
the point of hanging around the clinic and I was desperate to have a
nice eve with our friends. So that's what we did. Next day lunchtime we
started our trip back to Stuttgart after Minna and Andi kindly helped us
get a hotel room in Heidelberg for the night at short notice, Birke
kindly picked us up in Stuttgart, dropped us off at Gudrun's where we
repacked as not sure of the future, Paul wanted to take bags but not
suitcase, Birke then picked us back up again from Gudrun's, drove us to
the mainstation, sorted our tickets, put us on the train, I slept the
entire journey, so there we were in Heidelberg and ended up having
Flammkuchen in a very touristy place, I can judge that by the size of
the Flammkuchen in case you wondered. Flammkuchen again is German food
and usually savoury although usually Kuchen is cake.
So now we were in Heidelberg and this is where my first
update ends. I have made this a very detailed account, partly maybe for
psychological reasons so I can retrace our steps, also so I can avoid
too many questions from you so I don't need to go over and over it
again. Quite frankly, i want you to understand but now I 'd rather talk
about what you have been up to and thirdly another selfish reason I feel
more of an urge to write my book so I better write it all down while I
And lastly if I haven't made it clear for this part of
the update we are for ever grateful to Birke, Gudrun, Minna+Andi,
Christine+Ulli, Sylvia, Ernst without whom we don't know how we would
have managed, magnificent ground support ; - ) . I in particular am very
grateful as I worry about my Paul and knowing that he had this great
help while we were out there means the world to me and this remains the
same for part two of my update. and despite everything I am very pleased
that we went to Germany and cheated Diddy (cancer) once more. And soon I
will probably stupidly been plotting how we can cheat it again.
And we felt it was pure luck that it was discovered in
Germany as they did treat us like royalty there and I am not sure in
England they would have acted so quickly with op etc and I will explain
more of it when I get around to part two. ..
Til then my dear friends and family, sorry you have to
wait but it will give you plenty of time to read this update properly
first. ; - )
Loads of love,
in Germany Part 2 - My little visitor
Hello my dear friends and family,
I am trying to remember where I left you last, I think it
was in the very beautiful town of Heidelberg, where we had arrived on a
pleasant, almost summery eve, the third of May, not knowing what the
future would hold. (I don't know if you know but Heidelberg is a
gorgeous, very touristy town set by the river Neckar, with a beautiful
castle and old town. It is also known for its excellent university. So
well worth a visit if you are fit enough!!)
And yes, for those of you who still don't get it WE ARE
at home now, Sorry but there is still the odd one out there who is too
scatty or I don't know what to understand or read that we are at home,
sweet sweet home.
Anyway, I shall calm down and carry on where I left off
on Friday - All we knew is that I had made an appointment with the
Ambulanz Service at the Kopfklinik (ambulance service at the head
clinic) for the following day, Wednesday 4th of May. We got there and of
course we got hit by the question 'who is going to pay for all this'
first. Luckily for us they had an International Office right across from
checkin where there were some extremely helpful German ladies, all with
perfect English, that really went out of their way to help us. For me
and the cloud around my head ( I now blame the 2 brain metastases)- it
was all a bit too much to cope- but they really made it bearable.
Luckily my credit card first got us into the Ambulanz
Service to be seen by a doctor. (Next day a lady came who had a cold so
she wore a mouth mask when she came to see me. Basically, because Raquel
was being Raquel and a very lucky one this time, I had just got Paul his
EHIC card (all Brits listen out and get one!) and had noticed that mine
had run out in September last year and updated mine, all this just
before we went on our cruise in March, so basically we were extremely
lucky to be insured through the EU, otherwise the bill would have been
very high. No, normal travel insurances don't cover people with cancer,
they won't come anywhere near us).
So anyway, we were eventually seen by a doctor of the
Ambulanz Service of the Head Clinic who left both me and Paul in tears.
Basically, she made it sound like I was going to die and that they
didn't know any of my wishes, my will, what would happen to my body etc.
I pressed out the words that I hadn't come prepared with that because I
had no plans of going anywhere so I hadn't thought of it - sorry I did
warn you this was going to be a true account of what has happened-. In
the end she said 'We will give you our strength and if you give us your
strength, hopefully we can safe your life'.
With these 'cheerful' thoughts she then fought for a
hospital bed for me on the ward, with an aim to operate the next day or
the day after. We didn't know where Paul would be able to stay; another
big issue for us, a.) having to be separated at this hour and b.) the
language issue etc etc. The ladies from the International Office again
proved extremely helpful as they sorted Paul out with a small apartment
at the Guesthouse of the University which was basically walking distance
from the hospital, again we were so lucky!!
But of course I had taken painkillers for my hip pain
that also contained Aspirin and nobody at the previous clinic (Herrsching,
Bavaria) had decided to tell me to better come off them if I was going
to be operated on. Basically this doctor had confirmed that RT (remember
Radiotherapy) was totally out of the question as it would come too late
Yes, it did upset me a lot that I couldn't just get on
with it and get the Op over the next day or the day after, having to
wait until Monday (and weekends are even more boring in hospitals) was a
bit of a nightmare for me but luckily Gudrun and Sylvia came for a
couple of days before the weekend and entertained/distracted/supported
us. There were more tests to be done, one of them was very strange but
as the Op was going to be done sitting they needed to check I had a link
between heart and lungs or something. Basically I , of course, belong to
a 5% of population that have a small hole in the heart so it increased
my risk of the Op. I just didn't know what else they were going to throw
at me to make things worse.
Then my mother said she would come and stay for a few
days from Tuesday (day after the Op) to Sunday, I was pleased, very
pleased but also worried as my mum worries so much and I seem to have to
carry her worry, too. So I was very pleased my friend Liz announced
she'd come Sun-Wed and Paul's dad was coming with an open ticket, also
Tuesday I think. I knew the two would have a more calming influence and
I knew Paul would never admit he needed help or would benefit of some
company, he is just not the sort of person to do so. I was worried sick
about him and all my family and friends, so please forgive me I didn't
want to talk or text much, I just didn't want to think of what could
happen if worse came to the worse, I was so wanting to stay but I was so
scared, too. I didn't want to say good-bye. Paul saying he needed to
know what to do with my ashes made everything worse. I thought, if he
has given up on me, that is the worst. But he hadn't, he just needed to
know but I wasn't even prepared to go there. But then this little bird
flew into my room in the hospital, a Kohlmeise, grey tit, and kind of
spoke to me, and I haven't lost the plot but it kind of reassured me, it
was like a sign that everything would be alright and I calmed down and
thought they wouldn't try and operate if they didn't think they could
safe my life.
Anyway, we spent the Sunday at the very close by (walking
distance) Zoo, which was great - doctors who did the op next day were a
bit speechless when they heard. . . but you know me, wasn't going to
mope spending the day before the op, which was a beautiful day, in the
hospital. . .
So luckily Monday came and I was first on the list, thank
god, no more waiting. Myrtle, my teddybear, that normally supports me in
these times (kind of need to cuddle something in these crazy times and I
couldn't take Paul into theatre) was still in the UK so Paul bought me a
Yogibear from the hospital shop which I intended to take with me for
moral support. The male nurse was a bit crazy, gave him the same sticker
as me so he wouldn't get lost in theatre and shook my hand to say 'I
will see you later'. Just what I needed to hear, basically.
And so he was right, I saw him again the next day
after a day in intensive care. Waking up was probably the most amazing
moment of my life. I felt like I was given another lease of life. The
light seemed so bright and the birds have never sung so sweet. Seeing
Paul again just left me in tears and speechless. I remember Gudrun
ringing to get news of how I did and I said 'I am fine', I think, just
as the doctors arrived to do their round. I made them laugh, too, as i
asked whether the thing on my head (an antenna type thing to measure
pressure on brain during and after op, I think) made me look like a
teletubby. I was just so relieved I would see or hear from everybody
again, it was just amazing.
And that's where I am going to leave you right now, sorry
I just decided there will be a part 3.
Lots of love,
in Germany Part 3 - Life in Hospital
Dear Friends and Family,
So sorry I left some of you on a cliff-hanger yesterday,
forgot that not everybody has been kept in the loop! So here I am trying
to remember what happened next. Yes, I woke up and entertained the docs,
. . . I was keen to leave Intensive Care and couldn't wait to get back
to the ward. Basically the doctors were very pleased with my progress,
the op went a lot smoother and quicker than expected so thank you for
sending me all that healing, apparently I nearly swore at the doc trying
to get the pipe back out of my throat - I told him I am surprised that I
didn't- all was hunkey dorey, really. I felt like a new woman, no cloud
around my head, more energy, the dizziness gone, looked better than
before the Op apparently (I refused to look in the mirror although
really there was no reason to but I had seen so many Zombies (sorry)
walking around the Head Clinic I did wonder what they had done to me but
the rather large scar is not really visible as at the back of my head
and hair has already grown over it now; the antenna area on top is also
being covered by new Raquel lawn, it just grows so fast).
We had the lovely visits of Liz and my mum and Mike
that week like I mentioned before and at the weekend Angela and her
partner visited one day and the next day Sylvia came with Elmar - great
distraction. We also spent our 2nd wedding anniversary that we had
already booked to spend in the Lake District in the hospital. Guess
there is a first for everything. . .but it was strange and we indeed
plan to celebrate with a trip to the Lakes as soon as I feel fit for it.
I wasn't able to walk far, far but Paul was able to push me out in a
wheelchair to the nearby Botanical gardens, which were literally outside
the hospital doors, it was so nice to sit there, watch the birds, hear
the frogs and see the occasional hare on an eve. It was great to get out
and the hospital surroundings were perfect, so green. One of the docs
had a fit though when we asked him if it was ok to take me out, he had
heard the zoo story and was getting rather hyper about where we should
go and not go. We laughed a lot once he was out of sight. . .
My walking was and is better and like i said I felt
better but then the questions started tumbling in . . . what about that
other small metastases/secondary that they did not take out and what
about the rest of me - the lesions on the hips and lungs and liver?
So I said I wouldn't lie to you and here are all the
answers - the remaining brain met is being left for now as it is since I
have no symptoms. It would be too difficult to operate and also RT would
have heavy side effects which I can do without at the moment. However my
oncologist in the UK who we saw Thursday has since put me on steroids to
keep the swelling down and things under control.
The liver and lung ones unfortunately have grown - I
am now looking into how best to deal with them but panic hasn't settled
in, quite the contrary, right now I feel I am getting my life back.
The ones on the hips have actually not got any worse - so
there is some good news, too!
Then a week after surgery, when I was supposed to move
onto the rather strange station of Neuroonkologie (still puzzles me) I
developed a very high fever. the highest was 39.6, it just kept going up
and down like on a fun fair ride at the Oktoberfest, we just didn't want
to tell you all the details as we didn't want to worry you. They thought
the infection came from my lungs, pneumonia, I am not sure but I just
got on with it. Wadenwickel is what I suggested since I remembered my
mum doing them when we had fever when I was young.
They are wet towels around your calves and I asked my
parents for some tea so they suggested Redbush (Roibush Tea) which Mike
kindly got for me - he was our very reliable shopper for two and a half
weeks and kept running into HD on errands for us. Of course they put me
onto Antibiotics and a lot of Paracetamol to bring the fever down and
they kept waking me every two hours at night to check the temperature,
not nice. Eventually the fever was between 38s and normal so they moved
me to that strange station I mentioned above.
Sadly, there I agreed to take part in a lumbar
puncture (nervenwassertest) which was bloody awful, basically they poke
a needle in your lower spine and then collect a lot of nervenwasser/nervewater
from it. It didn't go down too well with me and I suffered for days with
headaches and sickness, so half the day was gone before I kind of
recovered. It was a real shame as I had been feeling so great after the
op and then all this. But I thought to myself, 'Raquel, it is just
another mountain you have to climb and you will get through this, the
Alps do not carry on for ever either'. Unfortunately my mum in law,
sister in law +boyfriend came to visit just when I was going through
that face and whilst it was so lovely to see them, of course I felt
uneasy as they couldn't see me as well as I wanted them to see me.
I haven't mentioned yet the numerous ladies I shared a
room with in all that time (about a month) I spent in hospital but they
do deserve mentioning. There was Frau Richter first of all, who suffered
from insomnia after her Op and turned the telly on in the middle of the
night and who was more concerned about how she'd look at her daughters'
wedding in two weeks time and who hadn't actually told her mum about the
There was Frau Lueth who had a rare nerve thing going
on on the side of her cheek, we could hardly drag my mum away from her
on the eve, a lovely lady who named her dog Heaven because the father
Then there was Frau Kretzinger who had done a report
on the main guy at the Head Clinic and filmed him during life Op years
ago, so she had come back here for having her brain tumour removed.
Sadly the woman didn't realise how deaf she was and being in the same
room with her while she was on the phone was unbearable,
Then there was the woman who wouldn't really talk,
then there was the stroppy teenager, that kind of softened towards me at
the very end (well a weekend together), I figure, as she offered me her
Then there was the Polish woman who claimed she wasn't
foreign and who was extremely confused. She had already had 3 or 4 brain
ops and hadn't been checked out for over 2 years and thought she could
just come and stay for one night although she had not been feeling
right. One eve she was picked up for a scan, and the nurse left her
dinner on her side table, nice roll with seeds on top, little Kohlmeise
(grey tit) decided to fly into room, land on empty cup, then on bread
roll, knick a seed and fly back out again. So funny. I sent Paul to tell
the nurse, not sure what the nurse understood as he came dashing back
into the room but anyway we got cup and fresh bread roll replaced for
her. You see, there was a lot of wildlife just nearby. And in a way
there was a lot of entertainment, you just had to be able to see the
funny side of things, which of course wasn't always easy.
Anyway, I think I shall carry on with Part 4,
hopefully tomorrow, I think I have shared the most important details
with you now so there shouldn't be any cliff-hangers. I am just back
home being me I guess, getting on with things, relentlessy searching for
solutions, not willing to give up.
Oh, and of course, since I wasn't able to do the Race
for Life this year, planned for the 29th of May, since I spent it in a
German hospital bed instead, I am rooting big time for Caz, Pauline,
Gail and Brenda who have very kindly decided to do the Race for me in
Plymouth, so please do sponsor them kindly.
Here is the link:
Lots of love for now,
in Germany Part 4 - Post Op Thoughts - Feels like Prison
Of course I am not at home yet, am I! So what happened on
the next ward? Which was literally right next to the previous ward, some
of it I already told you. I had to do strange reflex tests etc.,
apparently all is normal with that, great, neurologists, honest! (you
might have gathered, I don't get them!) They carried on to control my
infection but also indicated they did not have all the medical reports
to come up with a treatment plan for the future -the other reason (not
only the infection)- why we were still there. We hoped they had
something else for me, being the centre of excellence in Cancer research
in Germany and we had great hopes, hopes which had kind of been raised
by the team in the kopf/headclinic.
Luckily I am very well organised and have kept all
copies of any scans etc and the treatments of Birdie in Frankfurt in one
big red folder under the desk so I could guide my sis in law via the
phone to find them and my mum in law brought them all over so the docs
could have a look at all finally and stop procrastinating. Everything
seemed to move soooo slowly. Then there was the story of my left (my
good) leg, suddenly from one day to the next I was in extreme pain with
it, not sure it had to do with them not moving me right from the
stretcher back to the bed at CT as they just pulled me across; this was
at a time I really didn't feel well, tackled by fever and lumber
puncture and just didn't seem to have the energy to move myself - I
swear next time I will! I also had to go to a hearing test at the HNO
(throat, nose, ear clinic) with little results because probably lumber
puncture caused a bit of a whistling noise in one of my ears - in
hindsight I think it just all came together but probably a good thing it
got checked out there and then but even that left me worse for wear for
a couple of days.
Anyhow, I spent another week on that ward and the bed
fight continued until eventually on another Wednesday Avie, I believe, I
got moved to an entirely different ward, part of the National Centre of
Tumours, in a different part of the huge University Clinic building. yet
another room mate, frau Doerrsam, she was a character, indeed.
Three years fighting pancreatic cancer (Bauchspeicheldruesenkrebs),
I think that says it all as this is the most unforgiving of all cancers.
It is the one that Patrick Swayze managed to cheat for over 2 years. We
left her one of my Vanilla Dany+Sahne desserts I got obsessed with while
out there (I ate it with berries) at the end and her eyes popped out
like Scrooge Mac Duck's eyes when he sees dollars (Dagobert Duck). So
funny, I will never forget the sight.
Anyway things changed in one way when we reached that
ward. It didn't help that the doctor just seemed to shrug his shoulders
and there was a lot of silence among the white coat brigade when I put
them on the spot re what they could actually do for me. Of course I said
it in front of all 10 of them but the Oberarzt actually felt inclined
after that to take some extra time and explain what they can/can't do.
so he suggested another chemo to buy me time, maybe try Avastin (had
that for a year in 2008/2009 up to our wedding) again and also test me
again to see what Gene (wild or mutant) my tumour is as that makes a
difference. Still waiting for the results and haven't approached the
Avastin route with my oncologist yet as I think one step at a time. It
wasn't that easy to convince him to try the chemo , which I have
mentioned again below.
In Germany, I was still in agony with my leg and could
only 'move' with 'breakthrough' painkillers but they weren't prepared to
do anything apart from painkillers since nothing new showed on the scan.
For me just being more and more drugged up into a Zombie state is no
solution either though and of course I told them that - stunned silence.
It was hard not being able to go to the botanical gardens anymore as
sitting in a wheelchair was too painful. Luckily after a while I managed
on a 'mobile' chair whilst on these breakthrough painkillers which was
more flexible but it wasn't great.
Anyhow, what really got to me was being checked in by
a rather large male nurse who claimed I was underweight and needed
feeding up, maybe with nutritional drip etc, that really got me going so
I put on 3kg in one week just to spite him (by the way I was a weight
then that I was in my 20ies, so not really that skinny at all yet but
appreciate having a bit more on the ribs won't do me any harm!). I did
tell him my appetite was fine if presented with nice food but hospital
food wasn't exactly designed for that purpose. I was surprised that even
on the cancer ward you get the same crap food as in the rest of the
Then there was the Ecoli outbreak and the only other
healthy foods Paul had been smuggling in for me other than berries were
out of the question - lettuce and cucumber. So back to the usual German
feast of breads and cheese and cold meat spread for breakfast and lunch.
Found some muesli and Griessbrei (semolina) though for breakky but not
The other thing that really annoyed me and made me
feel like I was in prison was having to go onto the scales every
flipping day plus the question if I had been to the loo. Again the same
nurse argued with me to put me onto Movicol, which is a laxative and
makes you go, because of my Morphine pain patches. Only when I said I
already go at least 7 times a day (probably thanks to the turmeric I was
drinking twice a day) and this would definitely cause me diarrhoea, he
finally left me in peace. But this is when I started missing home and
the fact that no offers, no answers for treatment in HD seemed to come
our way. And indeed they felt my Uk oncologist ought to decide. I think
a lot of it had to do with money and they weren't convinced we'd be able
to pay for treatment over there although I kept trying to reassure them.
Luckily Dunja came to cheer us up (Mike had to leave us that day) and
also Gudrun and Sabine just before we finally went home. It was so nice
to have their company and time flew by so quick.
One day I got suddenly asked by one of the docs, 'when
do you want to go home?' I was surprised, as normally they decide that
question. They promised me a letter of recommendation and said I could
go home when I felt ready. This was at a time my infection wasn't
cleared yet. I had been on the antibiotics for two weeks, one day off,
fever climbed, so they put me on for another week at least. it was only
in the Uk they finally said, we don't put people on Antibiotics for this
long and told me to come off it and I have been fine since -by the way-
as I keep checking my temperature.
My insurance had been contacting the doc and they were
happy to expedite ? me home on behalf of the insurance. So they sent a
nurse over to accompany us. Because my leg pain was so severe I had to
be transported on a stretcher, one ambulance (I thought it would fall
apart) from HD to Frankfurt airport, then one to the aircraft with lift,
me and nurse at first in BA business class. They were great and upgraded
Paul from cattle class to business. Trip over in aircraft wasn't too
bad, was given some oxygen but since I had only had a blood transfusion
two days earlier it all went ok. Unfortunately in LHR (London Heathrow)
no ambulance/lift was booked so we had to wait on the aircraft for over
an hour so if anyone knows anyone booked on a BA flight to Frankfurt
that afternoon, the delay was me. Pilot was having none of it though and
said my welfare was more important. In the end we got moved with one
ambulance to greet the final ambulance but the shambles or poor
organisation continued as we had to wait to meet that one although they
had been in the right spot since 13.30 hours but got told to move
somewhere else and it was already 16.00 or later by then . . . all not
as glorious and victorious as I had planned my return home. . . but I
just had to accept it.
It seemed like a strange dream finally seeing
Peppermint Cottage again, I had so hoped I wouldn't miss the roses after
all the pruning in the autumn. And they were still out. It was all too
much I think when we first got back. Lots of sleeping, a very determined
Raquel , very determined to get upstairs and into our own bed after all
this time and so we did. It took time to settle back in but now I am so
glad we are back home.
What have I got up to since back? Had some nice
visitors but still taking it easy as still getting very tired. Saw the
mad professor who was very surprised and admitted so to see me walking
without a stick and looking so well since brain op. Everybody at
hospital very surprised how well I look. So of course that has given me
a boost. Will see prof again tomorrow to discuss another form of chemo,
given in tablet form. Don't think it is the long term answer for me, so
I continue in my search but I think it will buy me some time and it has
been recommended by three different German doctors, so I think it is
worth having a go although I have to admit not looking forward to any
possible side effects. I have also mentioned I am on steroids, these are
supposed to help with a number of pains I have and keep the brain met at
bay. The more I read up on RT to the brain, the more glad I am that docs
not suggesting it at the moment. I think there are other, better
solutions out there for me.
Mum has offered to come over to give Paul a respite
but we haven't decided yet, it is not usually a rest for me, which is
sad, but true, as my poor mum is not of a calming influence.
I been trying to get on with my life really. So I have
sorted out a new Motability (you can get it when you are classed as
disabled) car, so we went test driving a couple yesterday and that went
well. Went for a Jupiter red Mercedes A class Automatic in the end, that
will help me get some of my independence back. It just means they take a
chunck out of my disability living allowance, which is fine. Don't need
to worry about repairs, service, road tax, insurance and Paul has
decided to sell his old trailer.
Also treated myself to a four wheel rollator with
shopping bag and seat. The social services here gave me three crappy
tools instead, which all don't work for me: a tricycle, which isn't very
stable and you can't sit on it when tired, a 'shopping trolley' for the
house for driving a cup of tea from the kitchen to living room but it is
so poorly designed you will end up with an empty cup whilst you reach
the sofa, and a Zimmer frame for which I am too strong. We got a refund
from the boiler people promised Monday (honestly it sometimes is worth
complaining £150) so that covers my new rollator toy, haha, I am very
pleased. Also been pottering around the garden and put some plants into
pots on the patio, extremely pleased with that.
So often in the evenings I am tired and still sleep a
lot but I feel I am on top of things. I have bought a book called
'overcoming cancer-24 stories of triumph and hope' because I need
inspiring, too, but I also read Winnie the Pooh. haha.
Tonight we have a visitor, doesn't normally to come
and see us, so that is nice ,too. Listening to Jackie Evancho on CD at
moment, I do like my classical, calming music at mo. Also borrowed kids
DVDS from Paul's mum, much to Paul's despair. Seen the Chitty Chitty
Bang bang and now got Aladdin and another one to watch. Earlier we went
around a friend's house , they have a new born, only about a month,
another Harry. Very cute and soothing.
Saw the season's finally of 'the Mentalist' but have
decided to wait until Christmas to put current series of Desperate
Housewives on my wish list. Got back into my soaps, Emmerdale And
Coronation Street without any trouble. That says it all. Like I said, am
spending a lot of my time researching other alternative or complementary
solutions for Diddy but haven't decided yet what way to go.
I think this is it for now.
Oh, I had a great moment earlier. Stood talking to the
nurse at hospital, no stick , no rollator. Just feels so great having
both hands free. I am only using the Rollator to help me get back into
learning how to walk properly and when I am tired. It will give me
independence to go shopping, too, I hope. Independence is what I crave.
Oh, and my bloods are definitely on the improve, Hb now over 11 and
don't need to be on Warfarin anymore. Oh, and I am making steps to
finally see a physiotherapist. Had enough of all the red tape, so asked
for private referral through my GP.
Love you lots,
Think I have it all out of my system now, thanks for your
patience, although I know a lot of you have kind of enjoyed reading my
updates and are encouraging me to write my book. I guess that really has
to be my other big project now. I want to give strength and hope to
others, not to give up, if that is right for them, it is so hard to know
what is right, but for me I have too much to live for, that's just how I
see it and why go through this shit for four years and then give up? I
just can't. I would miss out on too much. Like Paul rescuing a little
black bird the other day that had fallen out of a nest in our hedge or
the look of a little newborn baby or not seeing my husband's face every
day. There is too much out there I would miss - as i could go on for
ever - but i really don't know how simple the answers are.
Just one more thing, thank you all for your amazing
support, thank you to Liz and Sylvie and Cathy for sending the updates
and thank you all for not giving up on me, it means so much to me. Thank
you to those who could come out to see me and will come and see me the
next few weeks. I know I need to take each day as it comes, which is
difficult for me, but I think I am getting there.
Oh, and of course, if you can please sponsor the girls
Another visit to the Mad Professor
Just thought I give you another quick update on what has
We had another appointment with the mad professor who
does not look so mad anymore since his hair has been kept in a neat
haircut (normally I think it is cut once or twice a year) but anyway, I
am sure you are not interested in the oncologist's habits of how often
he is cutting his hair. . .
I kind of triumphed again because he admitted that he was
very surprised when he saw me walking into his office 'Stick free' last
week and he said' I have to admit you are tougher than I thought'. I
told him that he should know me better after 4 years!!! But inside I was
sooo pleased, a real boost. Just love proofing him wrong. I think he may
be a bit scared of me as I was/am very calm and just asked him quite a
lot of questions, which he was probably dreading but I felt I finally
got some straight forward answers rather than him beating around the
bush. Which might be clear answers to from where Paul is sitting but to
a part German/part Portuguese woman even after now my 13th year in the
UK, you do need to talk straight with me! And I did tell him, that I was
pleased I was finally getting some straight answers from him . . .
Anyway, he handed us the Capecitabine (Xeloda) tablets
over, which I am supposed to go on and take them daily now and see how I
get on with them. They will be lower dosed but ongoing, so no breaks.
But I have already spotted a bonus, I won't have to go and interrupt
what I want to do for having to be back at the hospital every 10 days
for infusions. Again greater flexibility, greater independence , me like
a lot. Taking the tablets like that - apparently that is the way they
have found here- works best for people. You probably think I have
started taking them already, but I haven't. I want to be in a good
routine first before I get into a muddle again with what I take when
etc. I am talking about food, supplements, medication etc. I also want
to give my liver a chance first, so I am going to do a liver flush first
to detox it before I ask it to deal with more toxification. I know, just
a gut feeling I have and because I have been getting pains from the
liver, which are controlled by the steroids, I just feel my poor liver
needs some extra TLC right now.
Also emailed Birdie in Frankfurt to see if he can still
help me when fit enough to travel abroad again.
Steroids- I was supposed to be on those for two weeks,
found out by chance that you can't just stop taking them. Nobody
mentioned before, just finding it hard how disorganised the private
healthcare can be, do feel the NHS here is better organised in that way.
. . . Anyway, looking at cutting them down but worried it will affect my
energy levels. (steroids can make you feel like you have energy and at
moment I don't know is it them or me just better since Op)
Mentioned Avastin to the Prof, which I had between 2008
and our wedding in 2009 and then got told it is not working anymore. It
coincided with it being nearly a year of treatment and the funding
stopping from the insurance and a 7 week break. Doctors in germany feel
it is not proven that wouldn't work for me anymore because of the break.
Avastin (Bevazicumab) is not a chemodrug. It stops blood and food supply
to cancer cells, I think. So trying to look into that again, too.
Apparently there is a trial in the US but only open for US citizens. Mum
thinks we could just move there and become US citizens, ha, asked her if
she hasn't seen the film 'green Card'. Prof thinks I would have to get
divorced first, marry a US citizen, etc etc. All doesn't make sense so
need to see how else we could get it. It doesn't come cheap, so
decisions, decisions, decisions as I am sure insurance won't cover it
and Prof will only be interested if I go ahead and pay for it myself. We
don't need any money, I am just wanting to tell you exactly how it is!
I need to inject myself (trying to train Paul up later as
his wee sis is a nurse and will show him) with anti- clotting. No longer
need to be on Warfarin (yippee) but poking myself with a needle hasn't
proved successful so far and we want to reduce risk of blood clotting
because of the other brain met.
Going to seek further opinions on the other brain met.
Hoping to get meeting with Neurosurgeon in UK (friend of the surgeon who
removed the bowel tumour in 2007 and I trust him) and Birdie in
Frankfurt has also confirmed they may be able to take a look at it.
Starting Physiotherapy on Monday, very pleased I finally
took that decision. Had been asking for it here for months through
Social Services and Macmillan but have only encountered RED TAPE
(obstacles), not solutions. They basically would want me to spend a day
in the day care unit at the local hospice, and then when it suits them,
they will take a look at me but I am out rightly refusing to spend any
time at any hospice, other than in and out for an appointment. so I had
enough now, I am going private. Wish I had made that decision a long
time ago. In Germany they did give me physio by the way and it didn't
make matters worse. I know my situation with the hips is extremely
confuse and complex but I can just see that not doing anything in that
area is not the right answer either!!
My lovely friend Caz coming up in a bit to visit, really
looking forward to that.
Reading a lot more now as not so tired and eyes back to
normal since Op. Reading 'the House at Pooh Corner' before I go to sleep
as that is nice stuff to read and 2, soon 3, cancer books parallel to
each other. The 24 success stories is a real good one but also finally
wading my way through ,'The Rainbow Diet' by Chris Woollams.
Went to see Paul's dad in Brean (about 2 hours journey by
car) yesterday. Was a very big step for me but good to know we can
theoretically leave the house - still needs some adjustments though but
hoping to travel up to the Lakes soon, just feel an urge to go there, I
always just rejoice so much from being there. So many happy memories and
the landscape is so gorgeous.
anyway, probably forgot loads but off I go now,
Lots of love,
The Last Few Weeks in Pictures
Probably talked enough for a bit so I thought I send you a few pics
instead so you believe me I am doing ok. . .
1. Saying goodbye in Stuttgart, Gudrun, Birke and me on a Swabian
Meal out (Paul taking pic)
2. Probably the talk that made me go to the doctor, Minna in me in
3. Paul and me at Ammersee, day after finding out about the brain
mets. Still smiling.
4. Same day with the Poesel/Eloranta Clan by lake Ammersee
5.Paul's wee appartment in Heidelberg, which was walking distance
from the hospital.
6. Me and King kong at the zoo, a day before surgery.
7. Our 2nd wedding anniversary, - what you see on top of my head was
the leftover from the 'teletubby' antenna, not the place where the
8. Our 2nd wedding anniversary, no, I did not want my pic taken
9. A promise kept, meeting Dave and Gemma's new arrival back home at
Peppermint Cottage (little Harry)
10. Spot the scar
11. Caz and me this Saturday gone
12. Back in the poppy field this Sunday, face ballooning from
Steroids probably. . . cutting down now ( on steroids)
13. the beautiful poppyfield this Sunday
Lots of love,
Had quite a busy week this week and thought I fill you in. Off to the
Lake District next week (Monday) for a few days - very excited but also
nervous that it will go well. Its a big step but we got to try these
It has been a bit of a week again with ups and downs. Physically
generally doing well, haven't had many tired days but I went to see
physio on Monday and I don't know what she did (had a massage) and I was
left in agony with leg/hip pains until Thursday. Thank god it is gone
again now and those pains have kind of not bothered me too much anymore.
It just varies so much.
The biggest bowel cancer charity in the country can not find anyone to
match me. Meaning no one to talk to going through similar experience.
This and the fact that the Penny Brohn Doctor (cancer charity in
Bristol), who I normally ring for a bit of a boost every now and then
was speechless and didn't really know what to say kind of finally
started to bring the enormity of what I have been/am going through home
Just spoke to my (step) grandmother in ages - she was so happy to hear
my voice. It was so nice to be able to cheer her up like that.
Saw the surgeon that removed my bowel tumour years ago on Monday and he
was ever so impressed that I dont seem to have any drawbacks from the
Op. ie. writing/coordination/speech all working fine. He referred me to
his mate a neurosurgeon for a second opinion, whom we saw yesterday. the
latter actually kind of cheered us up a bit. He thought I was in the
best place for having the surgery done over in Germany (he thinks
Germany and USA are best places), kind of dismissed the British
healthcare system, which is funny as he is part of it. He also explained
everything really well to us which I must say nobody has done so to date
and maybe I should have asked these questions but maybe I was scared or
just didn't think of what to ask, I am not sure. Anyway, he advised
against operating on the right smaller metastases because he thinks my
right side of the small brain is making up for the massive op I had on
The metastasis on the left was actually very large and he was quite
certain it had been growing there for years. He said that brain mets do
not grow that fast but usually very slowly. This is really interesting
because I had headaches at the back of my head for years, even before I
was diagnosed with the bowel cancer and when I had chemo I would get
pains there too. And I actually have raised this a couple of times as a
question even with my surgeon back then, and everybody dismissed
this. 'Oh, it doesn't normally go to that part of the brain' and he even
felt it and said there was nothing there but you can't actually just
feel it anyway I think now! For me though it is a boost that it is not a
recent development and just suddenly went up there but has been growing
slowly. He also explained that it takes 3-4 months to recover from the
kind of Op I had so that again cheered me up as I can stop being so
bloody hard on myself all the time and pushing myself too much. I mean I
will always do things if I am well enough but if I am not so what, I am
having a bad moment, that's all. Also any light-headedness I have been
experiencing or funny noises is all very normal because they would have
cut through some nerves and that can cause all sorts. He is referring me
to a radio surgeon though just to get another opinion if he would treat
the other mets but no Op, no RT (which you know I am relieved about)
I am doing my liver flush thingy this weekend and boy it certainly is
working. Monday I will start taking the chemo tabs. This is the beauty
of it, we can go to the Lakes and still take the stuff. It is supposed
to build up over time so not expecting any side effects next week.
We also had lots of lovely visitors who just popped by for an hour or
so, which was nice.
I had a pampering lady come around on Tuesday and feel more human
again now. Also been to the dentist on Wednesday who fixed a part broken
tooth, seems I lost some blomb bit in Germany (probably all due to the
'lovely' hospital food).
Went to a little garden centre with a friend yesterday and got loads
of plants all for £3.50 - great bargain!
'Survived' two lots of visitors today and got some more friends popping
around this eve.
House full of lovely flowers.
Caz - your trick about the tulips IS really working. Still straight
after a week, only three drooping. If anyone wonders put a 2p copper
coin or the like in with your water. really seems to work wonders!
I think that's it, you know now what I have been up to. Just awaiting
the two day (tom and monday) heat wave that's supposed to hit the
Midlands with a bated breath now - will it really happen?
Lots of love,
At Langdale Valley
I guess it is time for another update!
We set off to the Lakes two weeks ago with the plan of
spending 4 nights up there but then we ended up
continuing our travels to Northumberland (England's
Northeast for the non-Brits amongst you) and Durham and
Whitby and finally a quick stop in Leeds to visit our
We had such a fabulous time in the Lakes (even the
weather was kind to us) and it seemed to be doing us
both so good that Paul suggested we carry on travelling
especially since we had nothing on until the Tuesday the
week after we left. I am so glad we did. Of course in
the Lakes we visited our usual haunts in Ambleside
(where we were staying in a nice B+B right in the
centre, which was just what I needed due to my lack of
mobility), and in the Langdale Valley and of course we
went up to High Close where we got married two years ago
and just sat outside on the bench and tried to soak in
the atmosphere of that wonderful day/weekend just over
two years ago.
Paul also pushed me
(wheelie=wheelchair) around Loughrigg Tarn, which must
be one of the most beautiful spots on earth; a small
'lake', down from the quiet path, surrounded by green
and in the background the beautiful mountain range with
the Langdale Pikes dominating the scenery. And also in
the background probably the most dreamt of cottage
overlooking the tarn. You may be thinking 'oh no, Raquel
is in a wheelchair' but you needn't think that because I
don't. In fact I smile when I sit in it because for me
it is only temporary while I am recovering. I get tired
easily still although getting better and at the moment I
can not walk such distances simply but that doesn't mean
I won't be able to in the future. I am getting better
and that is the main thing. And the big bonus is, this
way I still get to all the places I want to see and
don't have to miss out! And just to clarify I am not
always in a wheelchair, just when it is too far/much to
walk and when I am tired.
On the night, it was
such a beautiful evening with the most wonderful light
shining through the trees by the little river, (whose
water is the cleanest I have ever seen) that runs into
Elterwater 'lake' from Elterwater Village, so we decided
to go to another of our usual haunts, a spot by the
'lake' where we had some of our beautiful wedding photos
taken by Marie and Paul. The only problem was that the
path getting there had changed significantly or maybe
you don't notice it when you can walk but it was uneven,
rough, full of big pebbles, treeroots etc, basically not
designed for wheelchairs and I am sure Social Services
would have a word or two to say if they knew what kind
of terrains we are using wheelie on.
We also explored some new places like
Brantwood House by Coniston Water, where John Ruskin
spent his last years. A beautiful spot on earth,
wouldn't mind a house with a view like that one. We also
went to Holker Hall, which again was pretty; nice
gardens and interesting old mansion; Grace Kelly was a
frequent visitor here. We also tried to add some islands
to our collection and went right to the South of the
Lakes (the other side of Morecambe bay) and went to
Walney Island and had a look across Piel Island, which
has a castle on it and you can sometimes walk to it, if
the tide is low enough. We visited the Wordsworths'
graves in Grasmere village and had a walk around the
gardens there. We also managed to catch up with some
friends. Dylan kindly took us out to Troutbeck Village
to a lovely pub, where we had some very nice food and
beautiful views over the Troutbeck Valley. Of course
Dylan's local knowledge came very handy. He took us over
the amazingly gorgeous Kirkstone Pass back into
Ambleside. The following day we were lucky to be able to
meet up with Corinne and Paul and little Jude who
happened to stay up there in a caravan near Ambleside.
It was great being able to catch up and have a good old
chinwag and a laugh.
The following morning we took advise
of Dylan and explored the route via the Kirkstone Pass
along Ullswater onto the M6 heading towards Alnwick,
where we stayed for a couple of nights exploring castles
in Northumberland. We took a quick stop at Hadrian's
Wall on the way there and we stood on a flat bit of the
wall enjoying the view over the rolling countryside.
In Alnwick we visited the Castle and
Gardens. At the castle the first 2 Harry Potter films
were filmed outside but apart from some broomstick
lessons in the courtyard there was no sign of
advertising or exploiting this. The film Robin Hood-King
of Thieves was also filmed here (the one with Kevin
Costner) and also the first series of Blackadder. To get
upstairs inside the castle we were allowed to use a
small lift because of the amount of stairs. The funny
thing about it was that it was so tiny that Paul and I
just about fitted in. We were told that the Queen had
been in there the week before for a visit to the castle
but she went up on her own and Prince Phillip also on
his own. Question is are they bigger than us? Was her
dress too big? Or is it not suitable for a queen to be
so close to her husband in a common lift? Any ideas??
The Gardens in Alnwick were also quite
interesting, we even did a tour through a toxic herb
Saturday was spent castle hopping. First on the list was
Lindisfarne Castle on Holy Island. We had luckily
checked out what time you could drive across to the
island via a causeway. Once on the island we had a nose
around and got close enough to the castle but didn't go
in. We enjoyed it on the island. Next up was Bamburgh
Castle which was right by the sea also but completely
different. Again we very much enjoyed our visit here and
not only because the staff was so incredibly friendly
and bent over backwards for us. We could see the Farne
Islands in the background (apparently full of seabird
life) and the wonderful, extremely long and quiet beach
below. Last on the list was Dunstanburgh Castle, and old
ruin right by the sea. Again a totally different type of
castle. We didnt manage to get to it but close enough
thanks to another terrain that wasn't suitable for a
wheelchair (coastal path). Not sure what the cows were
thinking when they saw us.
Sunday we went to the beautiful
cathedral city of Durham and stayed in Whitby on the
night. We didnt really have enough time in Whitby so I
would definitely want to go back there sometime. It is
right by the coast, got a beautiful river and little
port and houses on West Cliff and East Cliff high above
the river on both sides. It also has an amazing Abbey
ruin high above the town and of course brilliant Fish
What you haven't booked your trip to
the Norh of England yet?
Monday we visited Sheila in Leeds on
the way home. It was extremely lucky we were able to
catch her, too, as she was soon off down South herself
in preparation for her return to Barbados.
We got back Monday late afternoon, a week ago. I was
delighted to see the garden and hanging baskets had all
survived the warm spell and of course we were lucky that
Paul's mum was around to give the garden some water
while we were away. Love the garden.
And then I guess we were busy with
appointments and stuff last week and of course I now got
itchy feet and am looking where we can go to next. I am
trying to think if anything important has emerged from
any of the appointments. I guess it was good to see that
the physio exercises last week didn't actually cause a
reaction so I think it was the Lymph Massage and not the
exercises, which is good news. Had to see Prof on
Thursday last week; he wanted to make sure 'I wasn't
falling apart since I had started the chemo tablets'
because he thinks he knows what I am like and apparently
I would go through a lot of suffering just to get
better. Strange then that I told him I didn't want the
daily injections anymore that Paul had to administer in
case of blood clotting as I found them too torturous and
done my own research which suggests that I don't
actually need them and also that they could actually
cause some nasty side effects. Also finally got through
to him that I don't want to be on the steroids any
longer, not even on 2mcgr steroids (small dose). So he
finally got that but it is going to take 6 weeks to ween
me off. The next thing I really need exploring is why he
has decided to keep me on these tabs constantly. He
claims he has put me on a lower doses and people fare
better with that than the usual 2 weeks on, one week
off. The thing is, I read the info leaflet that comes
with the drugs and I am actually on the normal doses,
not a lower one. So I will be doing my own research.
Paul seriously thinks that my oncologist is so fed up
with me proofing him wrong . . . .I can't really put it
here, that would be criminal if that is what he was
doing and I don't think Paul is right.
We also had lots of evening visitors
last week, which was nice, too. My brother and family
are currently visiting my parents, so that is nice, too,
as I get more time to talk to my brother and we get
first hand info how my parents are really doing.
Our little nephew, Harry (2) visited
last week but slept almost the entire time and had about
15 minutes here where he was awake. So apparently he
complained after in the car and said'I didn't want to
leave Raquel's house yet. I hardly spend any time there'
(he has his little routine of what he does and plays
with when he comes here etc). Unfortunately the little
man is suffering with hayfever already and when his nan
wouldn't let him in her garden because of it and the
fact that it has a tree with pollen he said' I won't go
near the tree nan'. so cute or what.
Saturday I made an older lady a
birthday cake; she does my feet (reflexology) once a
week to give Paul a bit of a break and she had tears of
joy in her eyes. So glad I made it.
Sunday (yesterday) we went to a local
sightseeing place, Harvington Hall, which was fab. An
old moathouse with so much history and such an amazing
old beautiful building from the 16th century (lots of
wood). Then I got into a baking frenzy. I have recently
got into a routine again to make our own bread in the
breadmaker. So I did one of those, then I did Paul a
fruit loaf ,also in the breadmaker, then I made a fruit
crumble and a carrot and almond cake. No wonder I was
tired in the evening despite Paul helping of course!
Last and not least, dont forget to sponsor the girls -
they are running for an extremely good course next
Sunday in Plymouth. Research into Cancer unfortunately
takes a lot of time and money - if not we could all look
at a brighter future - here is the link for ease of
And last but not least a petition from my hero, Lance
Armstrong, maybe you can find time to sign it.
The UN Summit is a one-in-a-lifetime
opportunity to make fighting cancer a global health
open letter and join us in telling world leaders to
seize this historic opportunity:
Let’s make sure cancer survivors
everywhere get what they need to face this disease
probably wondered why you haven't heard from me since my
positive and euphoric (?) recent updates.
Well, unfortunately we went for a
routine MRI scan on the brain about 3 weeks ago with
results a few days later and not good news at all. There
are several new mets on the cerebellum and spreading
fast at the time it seems (next scan will be in a few
weeks again). To be honest, after having been doing so
well, it was a major shock.
The orthodox world can only offer me a
full Radiotherapy (RT) brain scan and aren't exactly
selling me this (no guarantees it would work and would
make me feel worse actually) .I have been feeling rather
unwell since the news. Dizziness has come back plus
headaches so it all wasn't good news. I have to admit I
have been extremely stressed and not me at all, shouting
and being depressed and wanting to cry all the time, it
just has been bloody awful. I partly blame the mets and
partly the drugs (had to up the steroids again
unfortunately to reduce swelling on my brain, when I was
just trying to wean myself off them).
And don't have a go at me for feeling
low, I have been putting up with this for nearly 4.5
years and I have mostly been positive!!!
And I am no saint, i may be an
inspiration but I am no saint!
Well, it has been a tough ride
recently, we had more travel plans and really that is
all I'd love to do right now but I have just not got the
energy. We managed to do some local trips on better days
(Warwick Castle, Harvington Hall, Hartlebury Castle,
Hereford) and hoping to do a bit more. Even thinking of
hiring or whatever a caravan to travel. Flying
apparently not such a good idea, well we will see.
So for now, I have started on the
mistletoetherapy today. I feel better, whether that is
psychological or not, I can not tell you but today is a
I had a quick spell in hospital (24
hours) last Saturday and I had the macmillan (uk cancer
charity) nurses coming and bombard me yesterday so we
are kind of all 'set now'. To be honest having to make
decisions about being resuscitated (wiederbelebung) or
not hasn't exactly cheered us up and being told the
Marie Curie (UK cancer charity) nurses will come and sit
with me for 3 nights next week hasn't lifted our spirits
either, strangely. The orthodox world is just really
pulling me down with the mad Prof being a complete arse,
sorry but it has to be said. We saw him last week and I
thought I had turned a corner with him but he was really
still not getting why I am not prepared to give up.
This week all I needed him to do was
agree to use my portacath for some high intravenous
Vitamin C and he couldn't really authorise that but more
importantly I needed needles from the hospital to
administer the stuff .my sis in law who is a trained
nurse is supposed to administer the stuff so we can do
it here at home and I don't have to trail down to
Bristol 3 times a week for the next 5 weeks, which is
extremely tiresome for me. the coward lied to me (saying
that wasn't his call and he couldn't authorise as they
can't send out needles as I could be a heroin addict,
haha) and we are now still trying to source these bloody
needles as they normally only get delivered to hospitals
and not individuals.
I have been so stressed and upset
about this. The one thing I ask him which would really
make my life much easier at the moment and he can't do
it. All he had to say to me was 'that he had hoped I
would have found some peace by now'. So basically I
should give up. I told him that that was never going to
happen. Paul had a great idea, he thinks I should send
him a copy of The Verve 'the drugs don't work'. Loving
it. Probably will do, much better than all the anger.
Anyway, if any of you have links to an
oncology ward, could you please let me know asap, maybe
you could help, it would mean the world to me if I could
get hold of these needles by Tuesday or early Wednesday
Love you all and please don't be sad,
it upsets me too much. I just keep crying all the time,
just please try and stay positive for me.
PS Interestingly the 'complementary or
alternative' doctors have been very positive, it is just
the 'orthodox' world that is trying to drag me down but
I guess they make me so angry that it actually keeps me
going and fighting just to prove them all wrong.
PPS my mum is coming to visit for two
weeks from next Thursday to help my own poor saint Paul,
so that is going to cheer me up. I just need my mum
So many of you have been asking so I just want you to
know that of course I have got needles. It is a good sign, I think, and
it really cheered me up today because all of you that know me know I
wouldn't have the needles if I wasn't me anymore.
So how did I get them???
None of the possible sources could deliver for today
or tomorrow morning but today I managed to get 5 needles from my
hospital. yes, I am dead pleased with myself. If only the prof knew,
haha!!! it completely cheered me up and changed my mood.
Other than that I generally feel a bit better, having
started my mistletoe-therapy treatment and also started to make plans
for travelling again rather than just focussing on Diddy all the time.
We are hoping to do a little trip into Wiltshire and
Jersey around Mid/late September, then we had already flights booked to
Cologne a while back at the end of September and hoping that we can
still do this against all the odds and when we are back from that I
should have finished my Vit C treatment and would love to go and see the
Scottish Isles. Somewhere I have been wanting to go for ages.
When after that I feel well enough, we shall be off to
do some of Europe, all of this by motor van or campervan. I know it is a
dream at the moment but dreaming is good and cheers me up. I just need
some sleep right now and hopefully that will improve my rather depleted
energy levels. I can not sleep because of the steroids but I need them
to control my dizziness. it is really difficult. So yes I am very hyper
Love you all lots, keep your fingers crossed for me
and stay positive for me and thank you for your optimism, I really need
it right now.
PS anybody got an idea where we can hire or buy an
inexpensive but comfortable motorhome from, please let us know! Need
loo, shower, comfy seating and bed, that is main thing for me really.
Don't need any fancy snick snacks.
Planning to do the big world next year, overseas that
is!!! Am I crazy??? Maybe - but I am loving this. Been doing a lot of
crying, too, so feel a lot better now.
Also been looking at moving to the seaside (haha).
thought of a bungalow with sea view in Pembrokeshire or Devon and
Cornwall, like I say, dreaming is good, think it is a bit out of our
price range. .. . or maybe am looking on the wrong internet sides?
Eye Sight Not Great
Please please don't take this the wrong way but I can not currently
able to respond to individual emails or text messages etc/
You may get the odd message from me because I am after some help but
if I then don't respond with an update don't necessarily worry.
My eye sight is not great at the moment and I am finding it rather
difficult. Also I just seem to have caught a tummy bug as I have
been having diarrhoea since Thursday evening and feel very little
energy at the moment.
Thank you all for understanding.
Love you all,
been doing and plans for the Future
So what is really going on at
Every day is different and I can not
tell you from one day to the next what
is going to happen to help you get an
Tuesday 9th August saw Dr. Ritz, the
pain specialist, who recommended a full
brain RT and obviously doesn't believe
in mistletoe and high dose vit c but
would love to be proven wrong, he also
wrote a very nice letter copying to all
other docs including prof Ferry about
what I thought on the syringes and
copied it to all the docs I see,
including prof Ferry, quite entertaining
Wednesday 10th went to Bristol for
1st vit.c injection.
Thursday 11th made it to Debbie's
birthday party in evening but felt awful
all day. Debbie is one of my beloved
sister in laws here.
Friday 12th somehow made it to
Bristol but not well, really bad
diarrhoea, started the night before. 2nd
high vitamin c injection.
Saturday 13th still diarrhoea.
Sunday 14th still diarrhoea - called
in call out doc, who claimed I had a
tummy bug. my friend Alex visited the
avie/eve, think i was quite with it and
Monday 15th all diarrhoea stopped,
trying to eat again. Feeling very week.
my friend Tanja arrived in the evening
and I managed to catch up with her for a
Tuesday 16th they basically had
written me off. I woke up feeling very,
very ill, and it felt I was staring
death in the eye. The District Nurses
set me up with a constant pain driver,
pain relief, anti-sickness, sedation -
that sort of thing. Got really drowsy
and had not much drive left - really
felt like a gonner but in the avie
something happened and I told them to
take all the drug machines off, to their
great surprise and I made an amazing
turn around- just before they had rushed
everybody in including the solicitors to
sign off my will but something snapped
in me after that and I said 'No' ,I
don't want this'.
Wednesday 17th never saw anyone so
surprised in my life. the district
nurse's eyes were bulging out of
surprise and she told me she never seen
anyone like me with so much strength and
energy and that she couldn't see how I
do it - my brother came for a few hours,
which was nice although I didn't manage
to fully focus on him and enjoy his
presence as i still felt I had a lot to
Thursday 18th surprised people even
more as left house for local
appointment. liver pain suddenly getting
Friday 19th managed to get to Bristol
for 3rd vit C injection, having
mistletoe injections alongside from home
Saturday 20th sleeping all day, my
friend Cathy visited from Cambridge in
the evening, sorted out all my filing,
which was a great help and relief as
Paul and mum not having been able to do
that yet. Mum is more like Manuel from
Fawlty Towers, she tries, I think, but
hasn't been of much help so far, think
she is more of a burden to Paul than
Sunday 21st had vit c number4 from
home as my wee lovely sis in law,
Bungle, who is a nurse is now allowed to
treat me from home. Bungle, parents in
law and Rob visited.
Monday 22nd father arriving, Liz
Gamble 2, very kindly offered to pick
dad up from London station and drop him
here. great relief.
Tuesday 23rd Paul working hopefully
at the Blind Centre. got appointment for
bone injection (bisphosphonate) at RHH.
afternoon mri brain. eve results.
Wed 24th vit c 5 and mistletoe
Thursday 25th parents leaving. Audrey
at 3.30pm for a facial and my nails
hopefully. Bugsy Malone at 19.30, and
the maybe onto Barmouth?
Friday 26th Barmouth caravan
invitation to see Debbie and Ste and
little Harry. When vit c 6 and
Sat 27th journey home from Barmouth,
evening Chinese production of swan lake
ballet at Birmingham Hippodrome 19.30hrs
Sun 28th vit c 7 and mistletoe (or
Mon 29th vit c 7 and see above!
Tues 30th cranialosteopth appointment
Wed 31 possibly vit c 8 and mistletoe
Thursday 1st new car, i think!!!!
Sat 3rd vit c 9 and mistletoe
Sunday 4th a day trip to Barrie
island with Caz reminiscing Gavin and
Stacey (tv series, very funny)
next week days need to work out
Weds 7th - vit 10 and
Thurs 8th . Hairdresser coming to
house 3.30pm Super Trouper 19.30 at
Alexandra theatre Birmingham
Friday 9th should somehow be on vit c
11 - so still need to work that out?
Saturday evening 10th watching play
at Stourbridge theatre, murder weekend.
Cousins coming to visit around that
time, need to know when because am not
good with surprises at the moment :-)
probably trying to get to Scilly isles
that week before 29th of September -
which would be lovely then hoping to go
to Cologne from Friday 30th evening
(flights booked for some time), going to
see Cathy before then as she lives in
Cambridge nearby. Back from Germany 6th
8th of October watching legally
blonde, the musical, at the new
10th October off in our new mobile
home to the Scottish isles (Which we
have not bought yet so let us know if
you see one that looks good, over 2L
diesel, under £10k and with shower,
toilet and no rust), hoping to do them
one by one but need to check the ferries
and sailing times etc and yes we do want
to do all of them! yes!
When we come back from Scotland it
will probably be mid of November. We
will then soon head to Wiltshire to
visit Corinne and paul in Melksham and
Ann and Andrew in Bradford upon Avon. We
will also visit Wells and Lacock. we
will then take the ferry to Jersey in
our motorhome and carry on to Northern
France from there
We will start our first European trip
in northern France and travel around the
north west coast into northern Spain,
along the coast into Galizia, hoping to
get into Vila Verde where family
originates from to do some family tree
Would like to show Paul Portugal -
travel through Portugal to Southern
Spain (Alhambra etc), Gibraltar,
southern Spain but take in all the
islands like Ibiza, Formantora,
Mallorca, Menorca, back to mainland ,
somehow back the coast to Barcelona.
Probably along last bit of Spanish Coast
via The Pyrenees into France. Still
planning the next bit (and possibly
trying to get to Morocco) but probably
via southern France, French Riviera,
Corse, Sardinia, isle of Elba, Sicily,
isle of Capri - all in no particular
order. possibly more islands (as want to
collect as many islands as poss), there
is also the isle of Monte Cristo near
the isle of Elba. Would like to visit
Siena in Italy, then the Northern
Italian lakes like Maggiore and Como as
been to beautiful Garda, wouldn't mind
doing the latter again. Then from there
probably straight into Salzburg and
Prague, Dresden, Weimar, Hamburg.
Would like to see friends in South
Germany again but not worked out yet how
- Minna and Andreas and Kids in Utting
in Germany? Christine and Ulli in
Munich, Sabine in Ravensburg, also would
like to see Bodensee (Lake Constance),
Gudrun and Birke and Joschi and Angela
and Andreas and kids in Stuttgart.
Along Rhine would be an option to see
Sylvia and Dunja in Cologne (but then
can't do along Prague etc. so still to
be worked out), Sandra near Cologne,
Stepnan in Gelsenkirchen, once in
Hamburg obviously see bro and family and
From Hamburg probably head West to
Amsterdam and Bruges via Bremen perhaps
Amsterdam? Igna? Jildou?
probably back into UK via Ipswich or
Harwich?, Colchester - Liz, Chris and
Molly and then not sure yet, trying to
work our way through south
England/London back into Stourbridge
Lots of options and lots of friends
around London and the South - waiting to
hear first from you guys if you are
around before I book anything want to
see a show or two in London, defo Mamma
Mia and Oliver!
SO - you keep asking how you can
help/what I want
Now i know
- tips for itinerary for any of our
- research into Scottish ferries,
bearing in mind starting mid October and
first looking at Hebrides, starting with
Glasgow Arran I think, then just try and
do each island. if easier starting
further north (Shetlands) and coming
down that is fine. Probably would like
to get as far as Faroer Islands.
want to do the Harry Potter train from
Fort William to Mallaig. So Faroer
Islands, Shetlands, Orkneys, all of the
inner and outer Hebrides - any help
would be appreciated?
Any help with Europe itineraries
So then we will be back
If you want to
post me anything as you keep asking,
there is a long list of books and DVDs
(to cheer me up). Currently watching the
Hallelujah Trail with my Marie Curie Sit
Gavin and Stacey series 3 and 4
Gavin and Stacey special xmas edition
the old pink panther series with Peter
the Mentalist series 1-4
Desperate housewives series 7
Other: Batiste, Dry HAIR Shampoo
pair of Wellingtons, I am a size 6 with
very wide feet
dressing gown green like apple green
lights for garden - pretty fairy light
Arch for garden - wooden trellissy type
square cake tin cover to transport
nice thick bath towels (Grey or baby
or check out my wish list on Amazon.com
In the new year hoping to get to New
Zealand and oz and hire a motorhome
Nz - probably going to do a lot of
travel around the northeast of the
OZ - kind of have a plan, too, which
will include most of the coastal area,
Ayers Rock and Co, Tasmania, Kangaroo
Island, all of the Great Barrier Reef
Islands, Fraser Island, etc., also
hoping to get to Katrina's wedding at
the end of April and of course visit my
family in Sydney.
Then Canada and USA - again waiting
for itinerary suggestions. In USA
definitely probably start with organised
package in NY, then head north into
Colorado to visit family, San
Francisco, New Orleans, Rest quite open,
mostly interested in country side like
Gran Canyon, Mount Rushmore, South
Dakota, New England? or only worth in
Fall for Indian Summer?
I love you all very much XXX
anybody wants to come and c me, u r very
welcome but b prepared that i may not b
well enough to see you at the moment.
hope u understand now. xxxx
Hi all, perhaps u could send your pic,
I know some of you are in remission but I don't think it matters; Lance
has been in remission 4 a long time 2, I think you got some contacts.
When Lance and I meet
with world leaders at the UN Summit in New York next month,
I’m going to tell them a difficult truth that they need to
hear: Cancer is a global
crisis and it’s time for them to Face Up To It.
More than 100,000 members like you signed our open letter
calling for a global effort to take on the cancer crisis.
And LIVESTRONG will deliver your messages
to key Heads of State. But we’re not stopping there, and you
can have our back in another big way.
LIVESTRONG is collecting photos of
supporters like you from around the world to show in New
York while the summit is taking place. By adding your image,
you can help confront world leaders with the faces of our
global movement. Join thousands of others and make sure that
world leaders cannot ignore our public call for action.
Add your photo
using our simple Facebook tool and tell world leaders to
FACE UP TO IT.
(If you’re not on Facebook, you can still
add your photo
We’re not demanding miraculous breakthroughs
or wonder drugs. This is about getting commitments from
world leaders to implement proven solutions we already know
can save millions of lives.
When we walk through the doors of the UN, we’d like to know
that you and thousands of people from around the world are
with us in calling on world leaders to Face Up To It. Will
you add your photo right now?
Show world leaders the face of our global movement
and help make cancer a global health priority:
Together, I know we can make sure our leaders seize this
once-in-a-lifetime opportunity to stop the world’s worst
President and CEO, LIVESTRONG
28/08/11 - Thank You and Goodbye Raquel
On Sunday 28th August, our lovely lovely Raquel
Right up until the very sudden end Raquel was
We had her last email update on Thursday 25th just
three days before her death detailed below, where she was encouraging
people to support Lance Armstrong's Cancer Charity.
The funeral took place on Friday 9th
September at 11.40am at Stourbridge Crematorium.
Raquel by the way did not want any flowers but wanted any
donations made to Macmillan Cancer Support, Cancer Active and
latterly Cancer Research UK.