Originally published in November 2003 icon
Lymphatic Cancer - The Facts
Laughing Her Way Back To Good Health
Kit’s life B.C. (Before Cancer) was outwardly very enviable. She was a full-time wife and mother, with a hectic social and travel schedule.
She lived in New York, with her American husband and young son, for part of the year, spending Christmas and summer holidays in London.
In 1992 Kit was told that she had non Hodgkin’s lymphoma -a treatable but incurable condition. At the time of diagnosis it was "indolent" (very slow-growing), but she was told, "It always gets aggressive.
If you are lucky it will take 20 years - unlucky five." She was 40 then, with a six-year-old son, so even 20 years’ life expectancy was a shattering blow. But through a combination of a new treatment, her oncologist’s determination and having the strength to confront the mess her life was in beneath the glossy surface,she was able to "pull off a miracle".Kit has written her story for I C 0 N, to show readers "there’s fun to be had with cancer - trust me.
"I’m not going to claim a cancer diagnosis was something I enjoyed, that would be absurd. Like everyone else who has experienced it, my reactions were overwhelming and frightening, and each fresh treatment brought up the same shattering fear to be faced and conquered. I maintain, however, that the ’inappropriate sense of humour’, that got me into trouble all my life, played a big part in getting me out of trouble on my cancer journey.
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."
I did know that leukaemia wasn’t good news, but I’d never heard of 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.
When life gives you lemons, make lemonade and have a party!
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 risks of not doing the chemo are that we let this very aggressive cancer get the upper
hand
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.
You see! I exclaimed triumphantly, I told you I’d get a miracle!
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, contact her by email: [email protected]