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Here we describe Wendy's battle with Cancer over the years with useful
information and a personal view on the treatments with associated links .
*** IMPORTANT *** One very important point to note that if this
is your first diagnosis of "Hodgkin’s" more than around 80% of cases (aged
dependant) go into remission and often do not result in what you will read here.
Wendy has been un-lucky and you should not judge your disease upon her
experiences. Wendy has a very stubborn form of Hodgkin’s and she has always had
a weakened immune system, even from being a child.
1991
Wendy was 21 years old when she first found out she had Cancer. At the time
she was planning her life with her then partner Guy (Now Husband). Then came the
blow! Wendy wrote a diary at the time - here, it is.
"Many people in today’s society have very negative views about cancer. We
frequently hear about the pain, the trauma, and the people who die from cancer.
We rarely hear the positive side, the cures, the advances, the way cancer can
change people’s lives for the better.
Admittedly, being diagnosed as having cancer and being treated for it, can be
a VERY difficult thing in life to cope with. Despite this, having been through
it myself, I feel the bad times can overshadowed by the positive aspects cancer
can bring.
It has changed my life, changed my outlook, and it has made me appreciate
things people take for granted. It has given me the opportunity to learn more
about life, about myself, my own feelings, people attitude, in fact I learnt
more during the year I had cancer than I have throughout the rest of my
life.
I can now look back on my experience of cancer as a huge challenge, one,
which has been difficult, but with the help of the Doctors, a positive attitude
and support of my family and friends I will hopefully overcome.
I was first diagnosed in May 1991. Months after feeling lethargic dizzy and
generally "off colour" resulted in me being referred to a specialist in Milton
Keynes Hospital. Lumps were discovered in my neck and a biopsy was planned. I
immediately thought the worst; lumps to me meant cancer. I was reassured by
family and friends that 95% of lumps were benign. I went into the operation very
positively and assumed that that would be the end of it. The night of the
operation I had a visit from the haematologist, he prepared me for the worst.
The lumps were being examined but unfortunately he strongly suspected it was
some form of cancer.
Friday 3rd May 1991
I'm stunned, people like me don't get cancer. What an awful feeling knowing I
may have cancer, but not knowing for sure. I'm frightened - what if it is, what
if they can't cure me, what if I die? No I mustn't think like that 95% of lumps
are nothing to worry about so that's what I'll hang on to.
Wednesday 8th May 1991
I was told today I have cancer. I can’t believe this is happening to me. My
family and I are all in shock. You don't imagine things like this happen to you.
I've been given a booklet to read about my cancer it's called "Hodgkin’s
disease" I' ve never heard of it before.
Thursday 9th May 1991
Went to have my stitches out, saw all the nurses, they were please to see me
so. They said "Oh Wendy haven't you had some wonderful news" I stood there near
to tears, it didn't seem that wonderful to me. "You've got Hodgkin’s Disease, we
were told you may have Leukaemia which is far harder to treat. Hodgkin’s has a
such a good success rate"
The nurses really gave me a boost. It's never though of it like that - "good
cancers and bad cancers". I suddenly felt very lucky. There are people in far
worse situations than me, with cancers which are harder to cure. I am lucky; I'
ve got good chances.
Saturday 11th May 1991
Went to the Hospital for more results and to find out whether I need
radiotherapy or chemotherapy. I have hoped and prayed it will be radiotherapy in
fact it's the only thing that has kept me going this week. However, it wasn't to
be. I was told my cancer is quite widespread, in my neck, my chest, stomach and
spleen and that it will require six - ten months of chemo. I burst out crying,
kicked the wall, and shouted at the Doctor. I can't believe this, what have I
done to deserve this. I do try to be positive but I keep getting knocked back -
why?
Went home, numb. Can't bear to touch my hair knowing it will fall out. What
if I can't have children - Guy and I are planning our lives, to get married,
eventually have children like "normal" couples? Now everything is ruined. I may
never be able to have children of my own - this is definitely the worst day of
my life.
Monday 13th May 1991
What a wonderful day, someone is watching over me and changing my luck. My
haematologist referred me to an infertility clinic in Harley Street in London.
They are putting me on the I.V.F programme. There is a chance I will be able to
have my own children. I feel positive again. This is going to work. It's has got
to.
The IVF programme was an experience in itself. There are a
multitude of factors influencing its success rate. The majority of women who
pursue the IVF programme attempt a few different drug regimes until the most
suitable one for that particular person is found. My Doctor was only prepared to
delay my treatment for 1 month; consequently I had only 1 chance. I was told not
to expect too much. The average amount of eggs women produce is 6. Unfortunately
not all are fertilised & many aren't of good enough quality to survive the
freezing process.
There are so may 'ifs & 'buts', but I was determined this
would be a success. I arrived at the clinic on Monday & was told to start
the programme on day one of my period. I was due to start on the Friday prior to
Monday appointment. Usually I'm very regular, but due to shock & upset I was
delayed a few days. If I had have started my period on time; the IVF programme
would have been impossible. To me, this is a sure sign that someone is watching
over me. I pushed all thoughts of Cancer to the back of my mind. I could only
cope with one thing at a time. All my energy & positive thinking was being
directed to IVF at this moment.
A friend & colleague of mine had been told about crystals
& stones & how certain stones were supposed to have healing properties.
I had a visit from her & she brought me a piece of moonstone & a paper
telling me of its properties. She was unaware I was undergoing the IVF programme
& we were both equally shocked to read one of the stones properties was to '
beneficially stimulate the ovaries'. From the day I was given the moonstone to
the day I finished the IVF programme, I constantly wore the stone around my
neck. I believed in it. I really thought it was enabling me to produce lots of
eggs. Most people would dismiss this as nonsense & mock my beliefs, but when
you are undergoing something traumatic you need positive thoughts. You've got to
believe in something. I can understand how people’s faith in religion can help
during a crisis, but not attending church myself I needed something else. That
little piece of moonstone gave me the strength & will, to stay optimistic
through a programme where the success rate was very uncertain.
The IVF treatment was expensive. It wasn't available on the NHS
without a few years waiting. It is sad that people simply aren't given the
chance if they haven't got the money. When I was told the fees would be
£2000.00, my heart dropped. Guy and I didn't have that sort of money, but we
were the lucky ones. My parents contributed half the cost, from money, which my
grandparents left in their will & Guy's Nan gave us the remaining half of
the money to pay for the treatment. We will always be grateful for this help it
certainly wasn't taken for granted. It's nice to think in a way our grandparents
made it possible for us to have their great grandchildren.
Another important factor, which determined whether or not we
were offered the I.V.F programme, was how good a relationship I had with Guy.
Our case had to be accepted by an ethics committee at the clinic. The reason
being that it is not yet possible for single women to just have their eggs
frozen, they have to be fertilised first. Luckily I had a steady partner; we are
not married but had been together for six years, so our case was accepted.
As I have previously said everything seemed to fall into place.
The programme wasn't particularly pleasant. It involved many daily injections
over the month, which disrupted my hormones, & many tiring trips to London
for scans & blood tests.
Wednesday 5th June 1991
Went to London for my first scan to see if any eggs were developing. I was
very anxious. It was essential to me that this was as success.
Left the clinic feeling elated. I had twenty follicles, the majority of which
contained eggs. At least I'm having a stoke of luck. It must be that piece of
moonstone, which I was given recently.
The I.V.F programme was successful and the egg collection day soon arrived. I
was given the choice of a general anaesthetic or pain killing drugs.
Unfortunately a general anaesthetic would involve me travelling to a different
hospital, as the facilities were not available at Harley Street. This would
result in my eggs being transported back to the clinic for fertilisation; this
had the risk of some of the eggs dying during transportation. I opted to just
have painkillers as I couldn’t run the risk of any of the eggs being damamged or
wasted.
The eggs were aspirated trans-vaginally and if I was totally honest I found
it extremely painful. Most women do not experience such pain, I do not would not
want to put people off, it was merely the fact that I had produced so many eggs
(far more than average) my ovaries were extremely tender.
The next few days were tense, waiting to hear news of how many eggs had
survived fertilisation and and been of good enough quality to survive
freezing . I produced seventeen eggs, thirteen of which were
fertilised. So now I have thirteen embryos which are frozen and stored at the
Hallam Clinic (Now called Well Women’s Clinic), Harley Street London.
I was overjoyed; a huge weight had been lifted off my mind. I was now assured
that even if I was infertile (and only approximately 50% of Women are after
Chemotherapy) I knew I could have children of my own. The eggs can simply be
transferred into my uterus when required. With that as a guarantee I was able to
accept the remaining side effects of the Chemotherapy, as I knew that however
unpleasant, they were at least temporary .
Thursday 13th June 1991
Went for my first Chemotherapy. I was very nervous. I was given an injection
and sixteen tablets per day to take. Some of the tablets were the "cancer
killing" drugs while other were preventative measures to help stop sickness,
indigestion and mouth ulcers. I stayed in Hospital that night just in case a bad
reaction to the drugs. I suppose it was a bit of anti-climax really, as nothing
happened.
On my first visit to the ward I was quite apprehensive I expected to see lots
"bald-headed" depressed, miserable people who were suffering and in pain. I
couldn't have been more mistaken. The ward was a very cheerful place indeed full
of people keeping my spirits up and helping me to be positive.
I can remember being very worried about losing my eyelashes and eyebrows. The
hair on my head didn't matter as much, I could wear a wig but they didn't sell
"stick on" eyebrows! I was discussing my fears with another patient, she had a
terminal cancer and she was cheering me up. I guess it should have been
the other way around. She was laughing with me, "all you are worrying about is
your eyebrows" she said "I'm worrying if I'll ever wake up each morning".
That lady died a few weeks later and even when she was being wheeled away
through the ward to spend her last few days peacefully in a hospice she lifted
here head up a little and weakly called to me "have you still got your eyebrows
- Wendy?"
I will never forget that lady she had a great influence over the way I coped
with my treatment. She taught me not to worry about trivial things. It didn't
matter what happened as long as I came out of this alive.
Many people I met were suffering with advance cancer and rare forms of
Leukaemia. It had made me appreciate how lucky I was that my prospects were
good. No matter how bad you think your own problems are there is always someone
worse off than yourself - its worth thinking about.
Looking back my mind was a jumble of mixed feelings. I felt extremely
helpless for the first time in years. The only way I could be involved was by
being positive. I couldn't see my cancer and not being able to see anything but
simply knowing it's there in your body is a very strange feeling. It's as though
your body has let you down .
I needed to be open about my illness, I accepted I had cancer and told
everyone. I didn't want to hide it away, disguise my feelings or not use the
word "cancer". I appreciate that to many people the word cancer conjures up very
negative images. I suppose it's fear of the unknown, but in my opinion the more
"cancer" is hushed up the more it remains a taboo subject.
Many people do find it difficult to admit they have cancer and would prefer
to keep their illness to themselves. If that is their way of coping then that's
all right. It is very individual thing and there is no right or wrong way. I
found I had to talk about it constantly to help sort my mind
out".
Monday 17th June 1991
Felt sick today, I've got an unpleasant chemical taste in my
mouth. I'm sucking acid drops all day to help get rid of the taste. I feel so
tired; I've just slept all day.
Tuesday 18th June 1991
I was up all night, couldn't sleep. I'm taking a high dose of
steroids & they wind me up at night. Poor Guy is shattered; he's got to go
to work tomorrow.
My first course of treatment went well. I only had minor
complaints, like headaches & sickness, but I'm aware that the second course
of treatment won't be so easy. I was prescribed 2 different sets of drugs on
alternate months. "A" drugs & "B" drugs. The "B" drugs were the strongest
& whilst very effective at killing the cancer cells, they also had a
temporarily damaging effect on the blood which required careful
monitoring.
Red Blood Cells
The "B" drug killed many red blood cells. These are responsible
for carrying oxygen around the body. A lack of these would result in me becoming
very lethargic & anaemic. If the level was top become too low I would
require a blood transfusion.
White Blood Cells
Also killed by the "B" drug are the white blood cells. These
are responsible for providing the immune system. Without them any illness or
infection can be easily contracted. To help combat this, strong antibiotics were
prescribed as well as creams & mouthwashes to prevent simple things like
ulcers & coldsores becoming serious. I was advised not to mix with people
during this 2 week period & to keep myself & surroundings very clean.
Everything had to be disinfected & I had to take my temperature frequently,
any rise in temperature would result in admission into hospital for antibiotics
on a drip to prevent any illness occurring.
Platelets
Finally the "B" drug reduced the platelets in the blood. These
are responsible for clotting the blood. I had to be careful not to bruise or cut
myself. Any loss of blood which failed to stop, like cuts & nose bleeds
would have to be reported & a transfusion of platelets would be
requested.
All this sounded very bewildering at first, but really it was
nothing to be alarmed about as long as I was sensible & didn't put myself at
risk. My blood soon recovered on its own, this was only a temporary side
effect.
Thursday 11th July 1991
Had my first "B" drug today. It was given to me in a drip. I
asked my doctor about the drugs. He said they were derived from primrose &
the other periwinkle.
I knew what was ahead of me now. I had to experience my first
immune system drop & I also knew within the next few weeks my hair would
fall out. I was well prepared; I bought 2 wigs & had my hair cut short so
that when it did fall out it wouldn't be so drastic. To be honest I was dreading
it. I couldn't brush my hair in the mirror without crying & even asked Guy
or my Mum to wash it for me, as I was frightened of it coming out in my hands.
Looking back now, once my hair had fallen out it was a huge relief & not as
bad as I imagined.
Wednesday 24th July 1991
Hair! Hair! Hair! That’s all I can say. On my pillow, in the
sink, in my food- everywhere! Its well & truly falling out, but I don’t look
any different yet, probably, as it’s so thick; there is so much to
lose.
Sunday 28th July 1991
Feel poorly today, my blood count has dropped, my temperature
keeps going up & down & my throat feels a bit sore.
Monday 29th July 1991
Temperature very high. I was admitted into hospital. I've got a
throat infection. It’s very sore. When you are healthy, you really do take your
immune system for granted.
Tuesday 30th July 1991
Horrible night. Still in hospital. My head became terribly
itchy. I went into the bathroom, scratched my head & all my hair fell out.
The sink was full to the top with hair. I looked at myself & cried. It just
didn't look like me. I looked awful, so ugly. I was so upset; the nurse gave me
a sleeping tablet to help me get through the night.
Thursday 1st August 1991
Surprisingly this morning I feel fine. Put my wig on. Its very
easy, no messing about washing & styling my hair. I'll save a fortune on
shampoo.
I soon accepted my hair loss. I didn’t have to worry now, what
a relief, other patients in the ward were in the same position as me and we used
to make light of the situation. There was a poster on the ward of a cartoon
character with a baldhead beneath was a caption: ' God made only a few perfect
heads, the rest he covered with hair'.
Having experienced losing my hair, I would tell someone in the
same situation not to be nervous. I got myself worked up for no reason at all.
There is really nothing to losing your hair admittedly it is a shock when it
happens, however much you're expecting it, but you soon adjust. After all, it’s
worth it if it’s going to save your life.
Whenever I got down about having to wear a wig, I would think
to myself, I'd rather be bald & very much alive then not alive at all.
The "B" drug as I've said before affects your immune system.
Some patients manage to sail through without picking up any infections.
Unfortunately, I had to be admitted into hospital every time, although it isn't
pleasant being in hospital, I was quite relieved to be there as I did feel
poorly.
During these times I had regular blood tests to analyse my
blood cells & treatment was then given. On a couple of occasions I lost a
great deal of red blood cells & required blood transfusions. The thought of
these at the beginning seemed quite daunting. I didn't like the thought of
receiving someone else's blood & was quite frightened about the cases of
contracting aids through blood transfusions. My haematologist put my mind at
rest by saying that people did contract aids but that was years ago before blood
was tested thoroughly. Nowadays blood is very safe & without it I would
become critically ill. I didn't know what the transfusion actually entailed, but
there was nothing to it. It is simply given through a vein just like the
chemotherapy. It was more inconvenient than anything else was. It took about 8
hours for the 3 units of blood received.
Wednesday 18th September 1991
Had to have a blood transfusion today, hopefully I'll feel
better & have more energy afterwards. It's quite boring sitting here with my
arm straight. I keep looking at the bags of blood & wondering where they've
come from. You never know it might be a tall dark handsome man.
When I had an infection I had to be given strong antibiotics
via a drip. They had to be given at regular intervals throughout the day &
night. Some of this I did find very painful. It shouldn't usually be a painful
procedure & other patients didn't experience this. My problem was with my
veins. I have unusually small veins, which cannot be seen, clearly from my skin
surface & this constantly caused problems for the doctors who had difficulty
finding them. On some occasions they would need 6 or 7 attempts at finding my
veins with the needle. I could stand 1 or 2 of these but my wrist began to get
sore & bruised, my veins became burnt with the flow of antibiotics as it was
so toxic & the doctors were frequently changing the flow into other veins to
allow them to heal.
Thursday 19th September 1991
Feel a bit brighter now after my blood transfusion. My arms are
a bit sore though after all the antibiotics.
Had a blood test to make sure I wasn't getting too much of the
antibiotics. Apparently too much can cause kidney damage.
Oh you have to laugh, that’s all I need, a new kidney whilst
I'm here.
The periods of being in hospital didn't last long, a week at
the most. It was soon over and I began to feel well again. Throughout the
chemotherapy I had periods of feeling poorly & periods of feeling really
well. On my good days & there were plenty of them, I made the most of it. I
pampered myself, weeks away, party’s etc, leading a normal life as possible. I
wouldn't want people to get the wrong impression & think I was poorly
constantly for months, as I wasn't.
I had to have CAT scans every few months. The scans were quite
straightforward. They involved me swallowing a chalky liquid & then lying on
a table, which moved itself through a domed shape machine in order to take
x-rays.
I also had to have ultra sound scans on my stomach to check for
the disease. These were also straightforward. I remember the first time I had to
have an ultra sound scan, it was right at the beginning before I had been on the
IVF programme & I was aware I might not be able to have children. I was sat
in the clinic waiting room; I was waiting for the scan with lots of other
pregnant women who were waiting for scans of their babies. I was trying not to
look at them; it all seemed so unfair.
In November I had the last of my scans. It was an apprehensive
time waiting for the results to find out how much more treatment I would
require.
Thursday 28th November
1991
Went for my chemo as usual & was given the most wonderful
news. My scan results were brilliant, no cancer to be seen. This would be my
last chemotherapy & I will be finished by Christmas.
I can't tell you what a wonderful day that was. I ran out of
the hospital & sat in my car & cried & cried with happiness. I drove
home & phoned everyone up, who also cried with me. From that day on the
'congratulations' & 'well done' cards came rolling in. I felt wonderfully
happy.
Congratulations instead of get well cards. I kept saying over
& over again to myself, 'I'm better I haven't got cancer, I'm better'.
Christmas & the weeks leading upto Christmas were
wonderful. I had so many bottles of champagne; so many celebrations I seemed to
be on cloud 9 all the time.
Wednesday 18th December 1991
Jean & Jenny from work came round. They told me to go
upstairs & not to come down until they told me. When I came down my lounge
floor was a mass of decorated hampers full of food & wine & chocolates.
Also Congratulations cards with £80.00 in them. I burst in to tears with
emotion. It was a gift from everyone at work. For months they had all been
donating food for Christmas hampers to give to me when I was better. This really
touched me it was a wonderful surprise & made me realise how many people
care.
The Aftermath
Christmas came & went & I was looking forward to putting everything
behind me & getting back to work. I thought working full time would be too
much so I decided to work mornings. People were pleased to see me back & I
was thrilled to be starting to get my life back to normal. I assumed that as I
had finished the chemotherapy & been told I no longer had cancer, I would
feel fit & that would be the end of it. I was in for a shock.
Mentally I feel I coped very well with my treatment & stayed very
positive throughout. I had something to focus on & had a wonderful support
mechanism at the hospital. Suddenly everything stopped. I no longer saw the
doctor & nurses on a regular basis as I had previously & I felt at a
loss.
Back at work people used to talk about how ill they were feeling with a sore
throat or a bit of a cold. This used to make me so angry, I would think of all
the serious ill people I had been in contact with & how trivial a cold was
in comparison with their illnesses. I knew that in time I would be back like my
colleagues moaning about a trivial cold & it would feel important to me, but
at the time people moaning like this, made me want to shout at them. I became
quite complacent about things. I could see myself brushing over other peoples'
minor problems by using helpful phrases like 'Oh well, worse things happen at
sea' etc; When I knew that their problems however minor they seemed to me, were
real to them.
The things I've described above were quite difficult at the time for me to
cope with, but I feel the main crunch came for me when I went back to hospital
for a check-up. I saw one of the nurses who told me some awful news. One of the
people I had been having chemotherapy with (I will call him Ian for confidential
reasons) had died. He was only 18 years old & had leukaemia. He had been
given the all clear at the same time as me, however just after Christmas he had
a massive relapse & died. After hearing this I went back to work & cried
& cried. I didn't know Ian all that well, but it suddenly made me realise
just how close to death I could have been. It didn’t seem fair. I couldn't help
thinking about his grieving family & that’s where my depressed feelings
started. I was constantly relating how Ian's family felt to how my family would
have felt if I had died & all I seemed to do was cry.
I had never really appreciated the severity of my illness. I'd never thought
about myself dying. All through my treatment I'd concentrate on getting better,
which gave me something to focus on.
I went back to hospital to express my feelings to the doctors & nurses.
It was wonderful to hear I wasn't going mad. It was explained to me that when a
person goes through a traumatic experience the stress of it has to come out at
some time.
Some people react badly to being diagnosed or others deny that they have got
cancer & don't turn up for treatment. Others find the shock of it all comes
out years later.
What I was going through was perfectly normal. It was a form of posttraumatic
stress & was a healthy, normal process, which I had to go through. I was
given time off work which gave me the opportunity to think & sort my
feelings out, a task I could only do myself. As time passed things gradually got
easier. I would still have occasions where I'd feel down, but that was to be
expected. I found I had to go through my experience in detail & read my
diary of the year over & over again. It may seem strange to people but I had
to make myself read it in order to accept what had happened. I had to put it
behind me & get on with my life.
This project I have written has helped me enormously. It has been difficult
& has taken me a long time to write. On many occasions I couldn't continue
with it, but overall it has been of great value to me emotionally & a method
which has now helped me to totally put the experience in the past & identify
all the positive aspects the experience has given me.
Conclusion
It is worth thinking, if you are ever faced with a traumatic experience that
whatever happens to us in our lives, however difficult, however cruel, there is
always something positive to be gained. Maybe we have to experience traumatic
events in order to help others in similar situations, whatever the reasons, the
experience certainly gives you an opportunity to build your character, to change
your outlook on life & appreciate things previously taken for granted. If
people can turn negative experiences into positive learning experiences, I'm
convinced it would certainly go some ways towards ensuring those with health
difficulties to be able to face their problems head on & progress positively
through their treatment"
W.Burrington 18/2/1993
1995
As you can see by the date the Wendy's next relapse allowed Wendy and her
Husband Guy to get Married in 1993 and have four wonderful years where the
experience of cancer was not forefront of their minds. They had been told that
if you managed five years of remission then the likelihood of a relapse would
diminish year on year. Unfortunately Wendy relapsed again at Christmas time
1995.
Wendy was treated with two months of Chemotherapy and then had daily
injections of "growth factor" hormones to stimulate the production of "stem
cells" as Wendy was preparing for a Peripheral Blood Stem Cell Transplantation
at the University Collage Hospital London. This involved the removal and storage
of the newly grown stem cells. Wendy was then given very high dose Chemotherapy.
The treatment caused Wendy to be susceptible to infections and she had to be
isolated for several weeks. Wendy remained in isolation until the re-infusion of
the stem cells had produced the appropriate cells to ensure that Wendy's could
fight any infections on her own.
During this treatment Wendy had the Chemotherapy regime known as BEAM. The
drugs included in this are BCNU, Etoposide, Cytarabine and Melphalan.
The treatment was a success and Wendy and Guy got on with their lives.
1999
Once again Wendy was free from the disease for four years. It was the last
thing on her mind as she had found out the by some miracle she was pregnant. A
miracle for two reasons. One, given the intensity of the Chemotherapy Wendy had
been told by the Doctors that she was infertile and menopausal and should take
HRT and two, the pregnancy happened naturally, i.e. no I.V.F.
During the latter stages of the pregnancy Wendy began to feel off colour,
tried, fatigue and colds etc but she simply put this down to the trial of
pregnancy. Clayton Thomas was born the 3rd of January 1999 and the family was
over joyed. Unfortunately Wendy's health did not improve and investigations
confirmed Wendy's worst nightmare - the disease had returned. As you can image
this was a massive blow to new parents who just wanted to enjoy their new baby
and carry along the path to normal family life.
At the time Peripheral Blood Stem Cell Transplantation was a very strong and
aggressive treatment against cancer. Clearly, this had not worked so Wendy
returned to once gain to University Collage Hospital London to discuss treatment
options. These options included Allogeneic Bone Marrow transplant, which
involves the infusion of bone marrow form one person to another. The donor is
usually a relative i.e. a Brother or Sister. Subsequently Wendy's sister was
tested for her compatibility, but unfortunately a match was no found.
Therefore, two options remained. These were a Matched Unrelated Donar
Transplant, this involved the infusion of marrow from someone unrelated to Wendy
but with similar tissue type. This carried a risk of rejecting the donor
transplant a condition known as "graft v host" disease. The second option was to
repeat using an alternative Chemotherapy regime. Wendy was advised by her
Doctors to opt for the latter safer option.
Wendy and Clayton with Grandma in tow packed their bags and went back to
University Collage Hospital for her third battle against the disease. A stay
which lasted 4 weeks.
2001
In September 2001 Wendy relapsed for the third time, unfortunately things did
not look very positive at all this time around. My consultant told me a "cure"
was now no longer achievable as I had exhausted many of the modern conventional
treatments. Wendy could try for another Bone Marrow Donor but for Wendy at this
stage, with a weakened immune system it would be very risky indeed - There was a
strong possibility that she would not be able to tolerate it. Wendy did not want
to take this risk and was offered different Chemotherapy regimes, which were
unfortunately not curative.
At this news Wendy folded and pleased to know how long this palliative care
would keep her alive - She wanted to see her son at school, grow up, get
married, have kids - normal things. Unfortunately, the Doctors responded with
"around" three years and that was optimistic. Wendy now had a long, hard,
agonising choice to make - what to do and which route to choose.
Over the years Wendy had become a firm believer in alternative and
complimentary therapies and thought that with her prognosis she had nothing to
loose. Wendy decided to put the Chemotherapy to one side as it was there as and
when she required it. She put all her energy into finding a more natural path to
help support her body.
The therapy she used the most was Homeopathy. Wendy
found, by sheer chance, an excellent Homeopath who was truly dedicated, full of
love understanding and empathy - something Wendy needed at the time. The
Homeopathist was "Classically" trained by George Vithoulkas the most
influential Homeopath in the modern world today. His remedy's successfully
eliminated neurological pain, fatigue, and infections and helped Wendy through a
four-month eruption of severe shingles. What's more Wendy felt that they were
the greatest contributing factor in holding the tumour growth for six months -
Wendy feels Homeopathy is beneficial to all - even Guy and Clayton now use
Homeopathic remedy's with great success. Wendy's Homeopath is Dr. David Cohen -
contact in the UK 0161 792 4477
Wendy started to explore many other alternative avenues. She completed two
residential courses at the Bristol
Cancer Help Centre, this again
Wendy would recommend to any one with cancer. If fact Wendy has said on many
occasion that it is a shame that you have to have cancer to visit the centre as
it would be beneficial to anyone both - Guy and Wendy's Mother have also been
and found it thoroughly therapeutic.
At the Britsol Cancer Help Centre they raise awareness
of the benefits of diet, meditation, visualisation, relaxation, counselling and
healing. More over you are able to mix with people in a similar predicament in
safe and emotionally secure surroundings. Of course there are ideas and regimes
which you are encouraged to practice once you are back at home. However, Bristol
does recognise that you should use what feels right for you and your
circumstances. You should not get hung up on following these plans to the
letter; as if it does not suit you it will do more harm than good - in other
words have some chocolate if you really want some!
Having taken on board many different ideas, therapies and regimes Wendy
decided what she wanted and what felt right to follow. The formulated plan was
Homeopathy, Change in diet, regular relaxation, meditation and visualisation, Shiatzu,
reflexology, hypnotherapy, regular healing and vitamin regimes
recommended by Bristol.
The progression of Wendy disease slowed and some tumours even stopped for
over six months. Unfortunately they could not be contained any longer than this
and the tumours for whatever reason started to grow again and quite
considerably. This time the CT scan showed that in the seven months since the
last scan some tumours were around 7.5 - 9.00cm across - about the size of a
tennis ball. This was bad news.
Wendy visited her Consultant again to discuss once more the palliative
options. Nothing had changed. Nothing new. No miracle in the last seven months -
on reflection we didn't expect that either. This didn't help Wendy mentally and
she went into a rage throwing things around the house. She had turned her life
upside down, put her self out, worked at this so hard it hurt to try and stop
the disease totally naturally - Once she took the news on board Wendy started to
think straight again - the family re-grouped. Wendy decided the time had come to
receive more Chemotherapy, but this time she was determined that she wanted to
support her body and her immune system as much as possible in combination with
taking the toxic drugs.
March 2003
Wendy was desperate to find a Hospital who paid greater attention to
supporting the body during Chemotherapy. Guy took a week off work and feverishly
searched the web for any possible clinics looking worldwide to try and find
someone, anyone who matched Wendy's criteria. Surprisingly, there were more
options open to Wendy that was first thought. However these very fragmented and
would involve extensive travel throughout United Kingdom, something which at the
time was not practical given Wendy's condition. The search widened.
A colleague of Guy's mentioned a Clinic in Germany - St George
Hospital - where her best friend’s father was
treated. This clinic had it all under one roof. Conventional Chemotherapy
combined with a vast array of alternatives the main one being Hyperthermia -
fever treatment. The beauty of this clinic is that in many cases a far lower
dose of Chemotherapy can be given inconjuction with the Hyperthermia treatment
to give better results than full dose Chemotherapy alone. Wendy was on the next
flight out to Germany.
On her arrival at St. George Hospital in Bad Aibling near Munich any
apprehensions Wendy had were soon diminished. The Hospital was just what she was
looking for. The Medical Director Proff. Friedrick Douwes was a very kind,
sensitive and knowledgeable Doctor with a wealth of understanding of alternative
treatments not least of which was the Hyperthermia whole body treatment.
During Hyperthermia tumourous tissue is heated using different techniques as
a result of this heating cancer cells are damaged, blood and oxygen supply is
reduced causing an increase in cancer cell killing and the bodies own
immunological defence mechanisms are activated. Hyperthermia is also used
successfully for secondary cancer prevention and even tumours that are
inoperable or resistant can be influenced favourably by this treatment.
Wendy spent seven months on the St
George treatments, attending the Hospital in Germany every six - eight
weeks with a return home in between. This was a very difficult time
trying to concentrate on the beating the disease as well as coping with being
away from Home, Husband and Son for three to four weeks at a time. However
following CT scans, the tumour mass started to decrease. Wendy also
had milder doses of Chemo' when she was back in the UK as well just to
keep everything under control in between visits to Germany, we called it
maintence Chemo'.
July 2003
Another scan to check everything still going to plan. Oh no ! the tumour mass
had grown slightly!!!!! This was a blow. You can imagine the despair again.
However, we were told not to worry by Germany. "Come back right away"
and they would get back on with the treatment. Wendy was told that
sometimes tumour mass can change shape or even swell slightly in between
treatments due to Hyperthermia/Chemo. We were told to calm down, sit tight and
carry on with the treatment. Proffesor Douwes said "These things take time,
this is not a miracle cure we have to keep attacking" So we did.
September 2003
Yet another Scan. This time WOW! what a result. Just two months
later the tumour mass had reduced by a whopping
40%.
Wendy decided to write another Diary of her
experience atSt George Hospital to give people an insight into the day to day treatments
there, here it is:
Tuesday 7th
October 2003
I have just arrived at Pranseck Castle of St George’s
Clinic in Bad Aibling, Germany for my fourth visit. I thought I would write a
daily diary of my treatment there. I feel it may be useful for anyone
considering having treatment here and also to let the people who are frantically
fundraising back home have some insight into what the money is going towards.
When Mum and I arrived in the early afternoon, we were
greeted by the doctors, nurses and staff with great enthusiasm. After much
hugging and laughter and compliments from the team as to how much better I
looked, we were shown to our room. We usually have a double en-suite room,
(companions are able to stay with the patients), but due to the clinic being so
busy, we had a single en-suite room – not that this matters, as camp beds or bed
settees are provided. I briefly saw Professor Douwes who was very pleased to see
me looking and feeling a lot better than I was back in March of this year. I
will have a consultation with Professor Douwes tomorrow as well as various tests
and treatments.
Wednesday 8 October 2003
The first day at the clinic is usually quite busy but today
I had to pack quite a lot in as I had pre-booked my whole body hyperthermia for
tomorrow. Usually, when people come for their first visit, they spend the first
week on a detoxification programme prior to the whole body hyperthermia. My day
began with blood tests and urine tests and then an ultrasound examination, this
is where tumours visible by ultrasound are identified and located so that the
local hyperthermia can be given to the exact spots. During this appointment, the
doctor writes up any medication you will require and discusses other treatments
you may need/want i.e. oxygen, ozone and magnetic field therapy, inhalations,
reflexology, lymphatic drainage, massage, colonic irrigation etc. You are then
given a ‘green card’, which is a booklet where all your daily appointments are
booked. I saw Professor Douwes who came into my room. He was very pleased to see
me and was so enthusiastic to hear of my positive scan results. We discussed my
further treatment. I then had lung function and heart function (ECG) tests to
ensure my heart and lungs were strong enough for the whole body hyperthermia. I
then went to the main clinic in Bad Aibling for a UKG, which is an ultrasound on
my heart, to check the function of my ventricles and vessels – all was normal.
I had a talk with Mrs Douwes who is also a doctor at the
clinic. She oversees the whole body hyperthermia. This is chance for a detailed
run down of what to expect and a time when any questions or apprehensions can be
discussed. Consent forms regarding the procedure are discussed and then signed.
Whilst at the clinic, I was fitted with a line in my neck.
This is a plastic tube, which is inserted into the main vein in the neck. This
ensures easy access for drugs, infusions and blood tests etc. and prevents
numerous painful cannulas being inserted into the arms and eliminates the
damaging of these veins. I am always a little nervous prior to the line being
fitted, even though I have had them many times and they have never hurt badly.
You are given a local anaesthetic. I would say this is uncomfortable and a
little painful but not as much as you would expect. I would rather have a line
inserted than to sustain the pain of cannulas being inserted regularly,
especially as the veins in my arms and hands are very difficult to find.
My final treatment of the day always causes much hilarity
in the clinic and is always the subject of many jokes – colonic irrigation. It
is very important before the whole body hyperthermia that the bowels are clean.
If they are not, when the body is heated, all the toxins in the bowel can cause
problems. Therefore, the day before, everyone has a colon clean. During my first
experience I was not worried – just embarrassed. A tube is inserted into the
rectum and warm water in introduced into the bowels. Slight griping sensations
are felt as the bowel empties down the tube. During this first treatment, I
didn’t know what to say and just said to the man ‘What a job you’ve got’, to
which he replied ‘my job – it is shit!’ This broke the ice and he continued to
tell me of his funniest experience with colonic irrigation. He was at the end of
treating a man when all of a sudden, down the tube came a whole mushroom, then
another and then another. There were about seven mushrooms bobbing along the
tube of water. After much laughter, he told me how amazing it is that people do
not chew their food. From that day on, I was conscious to chew my food. Colonic
irrigation – once over the embarrassment, this leaves you with a lovely light
feeling inside and I think everyone should try it to get rid of toxins and
impacted faeces.
All day today I had to fast. Only drinks and clear soup
were allowed.
Thursday 9th October 2003
Today was the whole body hyperthermia. Before I left
Pranseck for St George’s, I had to have a small enema to get rid of any last
traces in the bowel. A taxi comes to pick you up and take you to the clinic
where your nurse for the day takes you to the hyperthermia bed. At that point,
during my very first whole body hyperthermia, I can remember feeling very
anxious and frightened and many people are on their first time. Now I have
experienced it I know I am in good hands and there is nothing to worry about.
The hyperthermia bed looks like a sun bed with sides. You are asked to undress
and get onto the bed, which feels lovely and warm. Your heart, blood pressure,
oxygen levels and temperature are all constantly monitored with individual
readings on a monitor by your bed, similar to an intensive care situation. The
nurse prepares your body by applying cream and fitting you with soft booties to
prevent blisters on your feet. Your blood count is taken and then when all has
been checked, the general anaesthetic is given. While under anaesthetic, a
catheter is fitted. Your body is heated to a good temperature – mine is usually
42.9 degrees. At this time, fluids are given and checks are made constantly. If
there are any problems, the doctor will stop the procedure. When the tumours
have been heated, they are given an intravenous glucose solution, which the
cancer cells respond to and absorb this solution at the same time as the low
dose chemotherapy. This procedure takes approximately six hours and this is
followed by recovery time in the hospital overnight.
Friday 10th October 2003
Woke up at the clinic after the hyperthermia. Feeling tired
and a little groggy. The taxi came to take me back to my room at Pranseck
Castle. I had a quiet morning resting but felt okay. I had Reiki in my room,
which was lovely. I then got up and had a shower. In the afternoon I had oxygen
therapy on a magnetic field and also an inhalation. I had an infusion of
selenium and intravenous ozone.
Saturday 11th October 2003
This morning, I woke up with cold-sores on my lips and
nose, which is a very common side effect of the hyperthermia. I have always
suffered quite badly with this and my sores can get quite bad so I decided to
take a homoeopathic remedy for it this time instead of the cream, which is
provided. No appointments today. Had a walk in the sunshine in the beautiful
park nearby. Had an ice cream while listening to a string quartet. Very
pleasant.
Sunday 12th October 2003
Very tired today. Didn’t get up until after dinner. Felt
achy and flu-like, which is common after hyperthermia. Felt down. Had a little
weep. Feeling sorry for myself – missing home. No treatments/appointments today
as it is week-end. There are trips organised to local places of interest which
patients and companions can go on. I wasn’t up to it this time but in the past,
we have been able to visit Munich, Salzburg and beauty spots such as the
Bavarian lakes and mountains.
Monday 13th October 2003
Busy, busy day. Had Prognosis Screening.
I will have a more detailed consultation with the doctor
regarding the results tomorrow. Had laser therapy on my cold-sores, which have
now spread and are very sore. Had oxygen, magnetic field and inhalation therapy.
Had local hyperthermia with Oxone I-V and vitamin C infusion.
Tuesday 14th October 2003
Began this morning with a consultation with one of the
doctors regarding the prognosis test. They have found out that my body stores a
lot of fungus and that olive leaf extract would be the best product to use to
eliminate this – fungus in the blood is not good and hinders healing. I have a
big disturbance of my meridian lines. One of them is totally out of the norm. It
is the meridian line which runs along my right arm/shoulder and into my neck.
Funnily enough, this is where I experience excruciating neurological pain and
had surgery for two years ago. Apparently, scarred tissue around this area could
be the cause of the disturbance. I happen to have six separate scars in this
area. I had my scars treated with laser light therapy to improve the tissue and
try to un-block the meridian, which will also help with the healing process. I
will be having another prognosis test on Friday to see if this therapy has
worked. Had my other usual daily therapies including local oxygen, magnetic
field, inhalation and infusions etc. I then had a consultation with Dr Dowes and
the staff team. Dr Dowes has decided to increase my injections of Thymoject and
factor AFZ and added the olive leaf extract and mushroom extract to my immune
boosting regime. He seemed to think I wouldn’t have to return to the clinic
until the New Year providing I carry on with low dose chemotherapy at home. I
took part in yoga/relaxation/meditation.
Wednesday 15th October 2003
Fasting day
again. Similar day to last Wednesday. Doing final checks for whole body
hyperthermia tomorrow. All went well and as soon as I come
round properly I can go back home.
November 2003 - July 2004
I came home for a good rest. Dr Dowes said I should now
leave my treatment until after Christmas and consider coming back in January. So
thats what I did.
Over Christmas I
was OK and
felt a bit more mobile. I went back to my UK Consultant and he arrnaged a scan.
The results were OK and we had made progress again with shrinkage in the
tumours. My consultant suggested that we carry on with the same regime of Chemo'
I had received in Germany in the low dose as "maintenance" until I decided
to go back again. That didn't happen. Funds ran out
and on top of this as much as I new the treatment worked in Germany the thought
of leaving my son Clayton for another three weeks at a time really
hurts me deep inside - you have to be a Mum to understand that! I therefore was
persuded by my conscience and the UK consultant to carry on here in the UK and see
how it went. I spoke to Joe Smarda at the SBL Clinic
and
he came up with an immune boosting immunology programme for me so that I could
sustain the Chemo with out all the possibilities of picking up viruses etc and
so that my blood was strong enought to keep having the Chemo's with out the red and
white counts being knocked back. This was vital at this stage. We called it the "support"
programme.
I spent the next seven months undergoing standard Chemo. At
first the results were good and the tumours started shrinking but then they
slowed up. In fact we were down to around 1-2% reduction in size for each three
months of treatment. All work and no gain. My UK consultant took stock and
said this wasn't working and that we had to change Chemo regimes quick. So I
moved onto ABVD and started again on a Twelve course, around six months of
treatment. All seemed OK at first, we started small on the doses and built them
up. However as they build up so did the side effects. It came to the point when
I had had eight, that was enough. I could not endure another four. I think it
might have killed me. The decsion was this - one more Chemo and then that was
it. I had my fill of that awful stuff flowing through my body. I wasn't living,
I was just existing in my bedroom one week after another looking at the same
four wall. No, that was it. I needed to go back and revisit the alternative
route and the non toxic approach.
This is where we stopped the "support" programme with Joe
Smarda and went on the Joe Smarda "attack" programme naturally.
I booked two trips
to the Czech Republic to go and see Joe at the SBL Clinic
. One in Early August and then a repeat visit at the end of
September.
Wendy is now receiving a host of therapies at an immunological clinic in
the Czech Republic called SBL Clinic (see treatment page
on this site for more details). Of course the treatment costs are not met by the
NHS nor any medical insurance, therefore all the funding for WendysWay has to
come from our own efforts in raising money and awareness.
Thankyou
Wendy's Family
xxx

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