Life was fairly ideal when, on 24th March 2000, as a 56-year-old self-employed graphic designer, I woke up with extreme pain in my right foot and big toe. I made an appointment to see my GP that morning and was surprisedly informed that it was gout, but to be sure, a blood test was taken and sent to Worcester Ronkswood Hospital for confirmation. Later that day I was phoned by my doctor, saying it was gout; however, as there was an anomaly with the blood results, an appointment was made with a haematologist for the following Monday. Still blissfully unaware of the seriousness, I arrived at the hospital with my daughter for company, having insisted my wife attend another important meeting that had been arranged for that day.
After multiple more blood samples were taken, the results showed I had chronic myeloid leukaemia (CML). It came as a complete shock. My mind was in a spin; the word ‘leukaemia’ can do that to you. The questions came flooding into my mind: How long? Why? Is there anything I can do? Is it genetic? The haematologist (Dr Stockley) at Worcester was brilliant. He explained everything and answered all my questions. The prognosis then was a bit bleak, only about five years of survival.
By this time, we had been at the hospital for over four hours, and I received a mobile call from my wife Barbara having arrived home from her meeting and wanting to know the news. I attempted to reassure her and said we were on our way home and would explain all then. Not satisfied, Barbara continued to interrogate me and wanted a straight answer: was it cancer? We had always been very honest with each other, yet I tried to avoid the answer. She asked again, and I had to say, “Yes.” This wasn’t the way I had intended to inform her and could only imagine what she would be going through at home on her own. When we returned home, my wife was still distraught at not having been present, so I phoned the consultant, and he kindly arranged to see us again in two days, as she had many unanswered questions. In hindsight, all the signs had been there: weight loss, night sweats, and fatigue (which I put down to just getting older) for the previous few months.
We were told there were two main options: one to have a bone marrow transplant with about a 50% survival rate, and then only if a suitably matched donor could be found; or a second option of daily interferon injections which can prolong the development of the fatal blast stage. Unfortunately, the side effects of severe flu-like symptoms prevented most patients from continuing with this procedure. The urgent treatment was to reduce the massive accumulation of rogue white blood cells, which were clogging up my organs, hence the gout. The plan was to take the drug hydroxyurea, which reduces all the white cells, both good and bad. So, it was only a short-term problem solver, as the damaged cells continued to replace the good ones. It would last for about six months, and then it would be time to continue with interferon injections. In the meantime, my brother would be tested for a bone marrow match. Unfortunately, this test proved to be negative.
The next few months were a crazy emotional ride, with many financial challenges. I had been an avid computer enthusiast for many years, so I started searching the internet for all the information that I could discover on CML and made three vital finds:
1) I found a beneficial USA site run by Jerry Mayfield.
2) I found a UK CML support site.
3) I found an article on the BBC website reporting on a new drug that was being tested by a Dr Drucker in Portland, USA, for patients with CML.
The internet now came into its own. It literally became a lifeline. I needed information; I studied any content I could find and quickly accumulated vast amounts of data on leukaemia. Firstly, I was unaware of how many variants of leukaemia there were, and each was dealt with differently. I was now on a weekly appointment schedule for blood tests, and I think Dr Stockley enjoyed our too and fro of facts and questions. One very interesting article came up on the BBC website of a remarkable new drug trialled in America that targeted the faulty gene that caused CML. Named the Philadelphia chromosome, it was a rearrangement of particular parts of chromosome 9 with 22, resulting in a new abnormal chromosome 22. I looked with anticipation to my regular appointments with the haematologist. We would exchange information and we had developed a great, close rapport. I brought up the new drug at our next meeting with Dr Stockley, and he was quite sceptical, as over the years he had seen it all before and, in the end, it had been a disappointment. But he was still willing to support me if trials came to Britain, as they did later that year.
I tried to continue working, but it had become increasingly more difficult with the fatigue and the inability to concentrate fully. I was also becoming increasingly concerned that I should leave Barbara financially stable and with no debts, if the worse was to happen. So, I looked into withdrawing my private pension fund. With the lump-sum I could pay off the mortgage and the remainder would provide a small living for Barbara and the caring for her widowed mother, who was now living with us. It had been life-changing news for all the family, and they were all determined to help. You hear of news like this breaking families apart. In our case it was the opposite. The bonds became even stronger.
I have always loved the sea, so for my birthday in May 2000; we arranged a trip to Aberaeron in Wales. It was a beautiful, memorable day. Then in June, our son Guy and his wife Sharon kindly arranged a holiday for us on the Kinard Estate, Pitlockry, in Scotland. One of the days there was spent visiting Iona for the first time, over on the other coast. The whole holiday was an incredible new adventure and gave us time to forget about any present troubles and recharge our spirits.
Then September came, and it was getting close to deciding the next stage of my treatment. I had an appointment with a Dr Charlie Craddock at the Queen Elizabeth Hospital, an expert in leukaemia, to discuss my options. He felt a transplant was too dangerous at this stage, and my best option was the new drug. He had campaigned to trail it at the QE but had lost out to Heartlands Hospital. My next challenge was to try and get on this new trail at Heartlands.
With a recommendation from Dr Stockley, I had an interview arranged with Dr D. Milligan at Heartlands for 5th October. I was just within the criteria set for the trial: less than six months post-diagnosis and no treatment with a drug other than hydroxyurea. The candidates for the trail, were randomly selected between the new medication and the conventional treatment of interferon. I was accepted for the trial and given a load of paperwork to read, but we were unprepared and surprised that we had to make a decision that day! After a brief discussion I went ahead; after all, it was a no-brainer. It gave me a chance of a longer life and the opportunity, if successful, for others to follow. I was then given my first bone marrow biopsy without sedation; otherwise, I couldn’t have driven home, as Barbara was not driving at that time because of a damaged ankle.
We then had to wait a week to find out on which side of the trial I was on. I was luckily selected to take the new drug STI571 on Study 0106 number 006, which reminded me of the old TV programme ‘The Prisoner’ and his phase as number six: ‘I’m not a number. I’m a free man’. I started taking the four golden tablets on 11th October 2000, followed by an intense series of tests and more uncomfortable bone marrow biopsies, 18 in all over the years to the point that my back apparently looked like a pincushion. I was offered the opportunity of staying at the hospital for the first month of daily tests but preferred the comfort of my own bed. It was a challenge though, as the storms were particularly bad that month and we had to check each day on which roads were flooded.
The results of the drug were so successful that, after six months, the other arm of the trial was offered the option to move to the new drug. It was a sensation in the drug industry—the fastest new drug to obtain a public licence. I then joined part of a campaign to persuade NICE to recommend the drug be offered for all first-line treatment of CML patients, as up to then, it was only recommended for patients in the final stages of CML.
I responded very well to the drug, with one minor hiccup a few months into the trail when my platelets dropped into double figures and I had to stop taking the tablets for six weeks till my results recovered. I did suffer from the most common side-effects, which was a small price compared with the alternative. I found taking the pills with breakfast helped. The most unpleasant effect was muscle cramps. They would come on quite unexpectedly, but often while lying in bed. They appeared to be mostly in my calves or arms.
My response to Glivec was excellent, and after three years, I became undetectable. The initial trial was for five years, with all the costs provided by Novartis. As this approached, there was an offer of an extension to ten years. But over this time, the journey of 40 miles to Heartlands Hospital had become increasingly more of a challenge, difficult and costly. My Worcester haematologist suggested I moved my CML treatment to Worcester Royal, which I did. Things pretty much settled down to a basic routine. I did have a time when I became very anaemic and had to stop taking Glivec until my blood count recovered. I had a series of six vitamin B12 injections and another (19th) bone marrow biopsy to try and identify the problem. When nothing was found of any note, I resumed on a daily 200gms instead of 400gms. As we all know, Glivec (also known as imatinib) was such a success that it quickly became the first-line treatment and has given mine and many other people’s lives back. For me it was the right drug at the right time.
I had another hurdle to overcome on 19th March 2014, when I woke up that morning with severe chest pain. Barbara called an ambulance, and I was admitted to Worcester Royal and diagnosed with having had a heart attack. They kept me in to have several tests which seemed to, funnily enough, coincide with the mealtimes, and therefore I missed most of the food on offer, so my notes recorded that I was suffering from malnutrition. I was fortunate to have a fantastic temporary Cardiologist, Dr George Pavlakis, who performed a coronary angiogram and inserted two stents. He did this on his day off so there wouldn’t be a delay of another four days for me to be discharged. I left hospital on 22nd March.
In memory of Barbara
I met my wife, Barbara, in the last years of secondary school. I had transferred to her school to take my GCE’s. She went on to train as a Home Economics teacher, at Keele University and we were then married in 1962. We have two children, Guy and Georgiana. When they both left home to go to university, we moved in 1982 to a small village in north Worcestershire. Since we met, we always enjoyed being involved with church life, and Barbara trained and was licensed as a Lay Minister in May 1997.
On her birthday, 18th July 2018, I took Barbara on what was to be our last ride out together by visiting the most romantic garden in Britain: Miserden Gardens. This was in the Cotswolds just south of Stow. At the beginning of August, Barbara felt she had started to develop a UTI. She had had them before and knew the symptoms—a quick course of antibiotics would clear it up. She phoned our doctors to request some medication, but the drug prescribed was MacroBID, an alternative to the modern antibiotic, as all doctors were trying to avoid the overuse of antibiotics unless essential. Unfortunately, Barbara has always been very sensitive to different medications and this time she reacted badly to this one, with prolonged diarrhoea and headaches. Over the next days, she became very frail and had to be supported to go anywhere. On one excursion, she collapsed and fell unconscious. I called for an ambulance which arrived quickly. By this time, Barbara had started to regain consciousness. The ambulance team felt the need to take Barbara to the hospital for some tests. The A&E department appeared packed on 16th August, as usual, and while we were waiting she had another seizure, and immediate attention was administered. There followed a further six weeks in hospital with a failure to find a definitive diagnosis. On 26th September, we had the sad news that Barbara’s organs were failing, and we stayed with her through the night. She passed away on the morning of the 27th.
In the past, I had a few conversations with my haematologist about stopping my imatinib tablets for my CML, as my response had been so positive. But Barbara always worried a lot and was very anxious, so it had not taken place. Now it was different—partly encouraged by grief, I stopped taking my medication and informed my consultant. My results have since remained stable.
The time without my wife has been very hard, and I made another pilgrimage to Iona in August 2019 with the family to give thanks for Barbara’s life. I am still undetectable by PCR, but grief remains very raw, and the COVID-19 lockdown has exacerbated the isolation. I miss Barbara’s steadfast enduring faith and love; the delightful humour that she would often use as a weapon to diffuse any tense situation; her smile and sparkling blue eyes that could light up a room. She would rescue me from melancholy and sessions of depression, but most of all, I miss the beautiful warm hugs that were so plentiful and she was so renowned for.
I am continually reminded of our incredible, beautiful 60 years together and give thanks for every minute of it. My life is blessed, and like the opened Pandora’s box, after all has gone, there is always hope left.