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On Valentine's Day 1992 I was hosting the first dinner party I'd been able to
manage since having my gall bladder removed in November. I'd not recovered well
from the surgery and my blood was being monitored for the Epstein Barr virus,
which had showed up in pre-surgical tests. The dinner party was for two couples
of close friends. I'd kept it simple but was lying down, at 5pm, to recover from
the preparations when the phone rang. My lovely gastric consultant was on the
phone. 'You cancelled the appointment with the haematologist I referred you to,'
he accused. 'I had gastric flu and had to stay close to a loo. But I've
re-scheduled it for March.' 'You must keep that appointment,'
he stressed, your latest blood test shows that you have lymphoma or leukaemia.'
'I will,' I said. 'Have a good weekend. Umm, thanks for calling.' And I turned
to my husband Peter's questioning face and said, "Apparently my latest blood
tests show I have leukaemia or a lymphoma."
It seems strange that I knew nothing at that time. I did know that leukaemia
wasn't good news, but I'd never heard of a lymphoma. Peter had. His father had
died of Hodgkin's disease 20 years earlier. It was the Friday of a three-day
weekend and there was no one to take all the calls Peter made, so there we were,
marooned with this shocking information.
The first hurdle to overcome was the tests. 'Gallons' of blood were taken and
a bone marrow trephine. There are at least 75 different kinds of non Hodgkin's
lymphoma. A Bacup booklet later explained to me that Stage 1 of a yin phoma
involves a single lymph node above or below the waist. Stage 2 is more than one
lymph node above or below the waist, Stage 3 is when you cross the waist divide
and have lymph node involvement above and below the waist. And Stage 4 is when
it involves other organs such as the spleen. Strangely, I never had any kind of
peripheral lymph node involvement - the cancer was ever only in the spleen and
the bone marrow but in order to ascertain this they had to draw out some bone
marrow from the pelvic bone under local anaesthetic.
So as not to terrify anyone who has to have a bone marrow trephine, I've met
people for whom that procedure was no big deal. But, for me, it felt like rape
and torture all rolled into one. Afterwards, the horror and laughter my stories
of this procedure inspired helped ease the recalled trauma. As soon as I
revealed my fear of the procedure, the doctor offered to knock me out for it and
it has never been a problem since.
I found that I needed a sense of humour to get through the alien minefield
you find yourself in following a cancer diagnosis. If I couldn't laugh, I'd have
cried - and I'm not so sure I could have stopped. Telling people can be strange.
I felt 'different' and removed from normal life. On a trip to London an old
friend asked me, 'How are you, Kit?' 'Oh, fine really,'l replied, grasping the
nettle firmly '.. .considering I've been told I have incurable cancer.' There
was a long silence as she digested my words. She's one of those people who
spring back from everything like a Mr Blobby with sand in its base, and this
line actually made her pause, but not for long. 'Oh well, never mind. At least
you know what you're going to die of.'
Another area where laughter helped me was that vexed question of losing my
hair. It had been a source of compliments all my life. Even when there was not a
lot else going for me I'd always had nice hair. The first course of chemo didn't
have much effect, but neither did it have much effect on the cancer. After about
six months they decided to do CHOP (a much more aggressive chemo protocol) and
my hair started falling out in handfuls.
The philosophy that works best for me is, 'when life gives you lemons, make
lemonade and have a party!', so I decided to have fun with the hair loss.
This was surprisingly easy, once I'd made up my mind, and I was incredibly
fortunate that David GelIer, my husband's acting godfather, owned a wig
catalogue company and gave me carte blanche. I stopped collecting at nine!
They weren't all from David, I bought one at Selfridges and picked up two in
a party shop. Once I started looking for the positives I found there were
many.
The wonderful thing about being bald is that you can have whatever hair you
like. I'd always wanted long, straight platinum blonde hair so guess which wig
was first on my list? I named that wig Helga and still encounter male friends
who enquire wistfully after it.
Thanks to the wig games I look back on that period with fond nostalgia, which
is a very strange thing considering how ill I was and how often. In the end, I
lost my hair five times and latterly grew comfortable and confident enough to go
out everywhere completely bald; in fact, many people found my baldness 'cool'. I
am planning a workshop (I prefer the word playshop) to teach people how hair
loss can be transformed from a very sour lemon into fizzy lemonade.
Despite two courses of strong chemotherapy, in 1992 and 1995, and radiation
to the spleen, in 1996, to control the steady proliferation of cancer cells, the
disease got aggressive in 1997. The treatment was similarly aggressive: a course
of six bouts of chemotherapy, at four-weekly intervals, to reduce the tumour
load, followed by stem cell harvesting in preparation for a transplant in April
1997.
I'd weathered the previous courses of chemotherapy, and with it the sickness,
ulcers of the mouth and digestive tract, the frequent hospitalisations for the
raging infections complicated by very low white blood counts. Low levels of
platelets (the clotting cells) and haemoglobin the red cells (which carry oxygen
around the body in the blood) are transfusable, but white blood cells must be
made by the individual patient's own body. So this time around there were some
fresh new experiences I'd never faced before.
 In the interim, a drug called Neupogen had been developed. It allows even
more aggressive chemotherapy, by helping to boost levels of white blood cells
previously considered unacceptable.
This meant I was facing daily intramuscular Neupogen injections, regular
blood transfusions, rigors and the first set of Groshong lines in my chest.
That was a very bad time for me. I was resisting everything, probably in
stubborn denial like the human equivalent of a mule sitting down on its haunches
who has to be dragged along by its harness. I was up to my last set of
pre-transplant chemo. At that stage it would often take half an hour or more to
get a working canula going, and my hands and arms were permanently
technicoloured. I was petrified of the Groschen lines and wanted to avoid the
responsibility of looking after them myself at all costs. Finally I agreed. I
actually couldn't take any more of the "stabbing".
The plan was I'd go into ~ hospital on Tuesday ~ night, have the lines put in
on Wednesday morning, have a day to recuperate, start chemo, through the lines,
on Thursday and be out on Saturday. It didn't work out that way. On Monday I was
running a temperature of 40 so they wrestled a canula in somewhere and started
mainlining three different types of antibiotics. It wasn't fun, but my
consolation was that I wasn't going to have the lines put in imminently, or
followed by chemo, so there was a positive side. My oncologist came to see me,
clearly disturbed. Len Price was a wonderful man and an incredible doctor. He
paced about at the foot of my bed. 'Look, Kit,' he told me, 'you were supposed
to have the lines put in today and start chemo, tomorrow. Nothing has cultured
yet in your blood results and, with a fever of 40 you're clearly pretty ill. We
prefer you to be in perfect health for surgery.
The risk, if we go ahead, with putting the lines in, is that we further
weaken you and that the lines are much more likely to cause infections if they
get inserted with an infection active in the body. ('Yesss!' I thought to
myself, 'a reprieve. Thank you God!')
'On the other hand,' he continued, 'the risks of not doing the chemo are that
we let this very aggressive cancer get the upper hand. This is the worst part of
my job. I have to make the decision between two unacceptable choices.' To say I
had mixed feelings is an understatement. 'As a physician, Kit,' Len continued
gravely, 'my responsibility to make the right choice is one I take very
seriously and I have been going back and forth for nearly 24 hours. Nothing's
changed. Your temperature hasn't dropped but at least it hasn't increased so
I've had to make a decision based on these circumstances. And my decision is -
we're going to go ahead with lines today as planned and chemo tomorrow.'
At my January 1998 check-up, following the stem cell transplant (which was my
best hope of a cure), I found myself in Len Price's office listening in horror
as he said, "Look Kit, it's not a good sign that the cancer is back less than a
year after the transplant. And it's still the same aggressive beast we were
dealing with. Unfortunately I have given you the legal limit of all the chemo
drugs available, except two. If those two work it's just about extending your
life. If not, well, I promise I won't let you suffer." I'm not going to pretend
that I greeted this news with uproarious laughter. I believe my exact words
were, "Oh s---! More chemo!" Oncologists are defensive about what they do, and
his rejoinder was very crisp, "If you don't like the treatment, Kit, you should
try the disease."
That exchange began a process that eventually included an immense upsurge of
anger, which gave me the energy to decide that I wasn't ready to go. I wanted a
miracle and I wasn't going to leave any stone unturned in my quest for one. This
was after five years of life overhung by the dreadful sword of Damocles. Five
years is a long time. My parents (and, initially, my husband) were the most
fantastic support throughout. I am indeed blessed to have them. Their steadfast
eagerness to help in any way they could, while never imposing any demands, was a
lesson in sensitivity and love.
It was very difficult for my son, whose youth was blighted by the shadow of
his mother's illness, and the related issues, but his matter-of-fact faith in my
miracle was a spur when the going got tough.
Reader, I got one! The miracle is that a new treatment was developed for my
specific CD 19 and CD 20 cancer cells. The treatment was Mab Thera (rituximab),
a contraction of monoclonal antibody therapy, and was brought over especially
for me from the USA. Mab Thera, as Len Price explained to me, was 'the magic
bullet we've all been searching for because it targets only the cancer cell, and
the one they figured out how to do first was your CD 19/CD 20 cells.' 'You see!'
I exclaimed triumphantly, 'I told you I'd get a miracle!' 'Well,' he conceded,
'It does seem a little like the US cavalry riding to the rescue at the very last
moment.'
I still feel blessed and awed by what I learnt in my quest. One being, that
once you start down the path that leads to miracles you can't stop. Today, five
years later, I am well and my journey continues. In this last year, I have
qualified as a Laughter Leader with Dr Madan Kataria who, while researching an
article entitled Laughter the Best Medicine for a medical journal, was so
stunned at the quantity and quality of medical evidence available, that he gave
up his practice and has dedicated his life to travelling the globe setting up
Laughter Clubs and Laughter Leaders. There are more than 1,200 Laughter Clubs
worldwide now.
I have also trained and qualified to be a Health Creation Mentor, about which
you may recently have seen a lot in the Press. I only wish Dr Rosy Daniel's
Cancer Lifeline Kit had been available to me in 1992. This, the first product of
the Health Creation Company, is an extraordinary cancer selfhelp kit designed,
written and produced by Dr Daniel. She is an holistic cancer consultant and
former Medical Director of the Bristol Cancer Help Centre. And, as someone who
knows the territory pretty thoroughly, I can tell you she knows her stuff and is
coming from such a loving and beautiful place that the integrity of this project
moves me very profoundly. Other than Dr Daniel, the thing that makes this Kit
unique is that there is a telephone mentoring service supporting its use
delivered by us, the 'Health Creation Mentors'. The kit and mentor service are
designed to provide a complete support and self-management structure for people
facing a cancer diagnosis. Actually the Health Creation Company and The Cancer
Lifeline Kit seems a lot like another miracle to me.
Sadly the great Len Price died in December 2001 and is sorely missed.
The last time I saw him he told me, 'You are doing so well I don't want to
see you for two years.' I'm now being 'followed' by the Royal Marsden Hospital
every three months - a display of zeal that never gets reported in the
newspapers when NHS care is discussed. I am in excellent health and about to
drop back down to six-monthly checks. My miracle also involved the
ending of my marriage in June 1998, which, it turns out, was the most toxic
thing in my life. The next most toxic thing was smoking. I had smoked
throughout my treatment, and the doctors used to come into my room, during the
high dose chemo, saying. 'I can't believe you are smoking in a positive pressure
unit!' Clearing the marriage toxin allowed me to cut out smoking. I quit in
August, just two months after Peter moved out. Since then I have divorced and
rebuilt my life. Today I live on a beautiful barge, on the Thames, with Simon, a
very loving man I'd known before I ever met Peter, and am happier than I've been
for years."
For more details on laughter leaders, the inspirational talks that Kit gives, or any of the above, please visit our Contact Page. |
