James Fisher was diagnosed with Chronic Myeloid Leukaemia in August 2000 at the age of 30.
“Jan 4th 2000 was a new start. Working away from home had been difficult, particularly for my wife Cara who had been left at home 3 nights per week looking after our two young boys, Oliver and Thomas, then 5 and 3 years old. A new job just 10 miles from our home town of Thetford in Norfolk was a new start and a great way to celebrate the new century.
I was a typical young dad, working hard to provide for my family and to buy my own house. I never really found time to exercise however always looked at myself as being relatively fit. In April 2000 I had to travel to the USA for a 2 week training course. It was a great experience to travel to New York and Connecticut, to meet colleagues and to learn more about the business. During this trip I can recall feeling unwell at times which I put down to the time difference and the stress of the job and being away from my family. On my return, Cara, the boys and her parents collected me from Heathrow and it was then that Cara`s dad commented to Cara that he thought I looked unwell. Everyone always told me that I looked pasty, that`s just the way I have always been.
At the millenium dome the day before being diagnosed
The summer came and we went on holiday to North Devon with a large group of friends. Looking back at the photos now we can all see that something was wrong however at the time it was not apparent. It was not until August that things finally came to a head. My weight had dropped significantly and other symptoms started to cause me some concern. My gums were bleeding and I was experiencing excruciating pain in my bones, mainly in my legs. I finally gave in to the pressure from my wife to see a doctor.
I can recall having to see a lady doctor that I had never met before. She felt my stomach and noted down my symptoms, sending me away with a ticket to have a blood test. Looking back I am certain that she suspected it was something serious. The next morning I turned up at the cottage hospital in Thetford to have my sample taken. Although 30 years old, I was very anxious about having blood taken. The sample was taken, without any pain of course, and I headed off to work. I was not concerned about the results that day, I was more excited about our new sofa being delivered that afternoon and getting home to try it out. At about 3pm the doctor called me at work. I can recall his words as if it was yesterday, ‘please can you come straight to the surgery? Tell your boss that you will need some time off work.’
I called Cara and we both met at the surgery. We both sat in front of a male doctor who advised us that he was 90% sure I had blood cancer. My white cell count was dangerously high and I would need to go into hospital the next day for 100% diagnosis. When we arrived home the sofa was stuck in the hallway with two delivery drivers wondering what all the fuss was about with so many people in tears. That night was difficult and I can remember looking at Oliver and Thomas asleep in their beds with floods of tears rolling down my face, they were the only tears that I cried. I said to myself there and then that no matter what this was it was not going to beat me and I had to remain positive.
The next morning we arrived at Addenbrookes Hosptial in Cambridge where I spent 2 days being assessed. It was a little overwhelming with doctors and nurses flying around and still the not knowing what was actually wrong with me. On the 2nd day I can recall them taking a sample of bone marrow from my pelvis. This was uncomfortable and an experience I did not want to go through again. They finally diagnosed Chronic Myeloid Leukaemia (CML).
On holiday with Cara and the boys a few weeks prior to diagnosis
Fortunately at that time we did not have access to computers so my education into my condition was through asking questions and reading the pamphlets available from the hospital. This was enough for me. I did not want to know too much, just what needed to happen to make me better. I can recall my options. Do nothing other than treat the CML with drugs and maybe have 6 years or opt for a bone marrow transplant which could cure the condition. With this came risks though. Bone Marrow transplants involve high dose radio and chemotherapy to wipe out your immune system. The process is complicated and not without risks. Cara and I discussed the options and were both in agreement that we should explore the route of transplant. My brother Robbie and sister Liz were both tested for compatibility, a simple blood test. I left hospital with drugs to manage the white cells and I recall twice weekly visits into West Suffolk Hospital where they measured and adjusted the drugs.
A week or two passed and I received a call from the hospital. My sister was a match and they wanted to see me to discuss how to proceed. To this day it amazes me that I was not more excited about that news. I guess I was still in a state of shock about what had gone on in the previous weeks or maybe it was all part of my strategy just to beat it!
With my sister, Liz, six months after transplant.
Through all of this I was extremely fortunate to be working for a company that were determined to see me, the new guy who turns up and within 8 months is off with a life threatening illness, through the process. Not all companies would have been so understanding; I basically worked when I felt like it but being the person that I am I did not abuse it.
The date was set for my transplant, March 2001. A couple of weeks before that, an appointment was also made for me to have my Hickman line fitted. I knew all about the Hickman as my 3 year old nephew Elliot had his fitted a few months earlier. He was diagnosed with a brain tumour one month after I was diagnosed and was also being treated at Addenbrookes. The procedure was simple enough but did involve going into theatre. The end result was 3 tubes coming out of my chest which I was told would save me a great deal of discomfort in the coming weeks. Elliot and I used to call them our ‘wigglies’ and we both got used to having them around.
The time building up to the transplant was a mixture of keeping focused on my white cell count, showing my face at work and trying to cram things in with the kids as a ‘just in case the worst happens.’ We booked 5 days in Disney Paris and had a great time, although it was rather cold.
Sunday March 11th was my intake day. Cara and I dropped the boys off at my parents and we popped back home to pick up my bags. I lied earlier - this was the last time that I cried. Walking away from my children and the home that I had worked so hard for, possibly for the last time was very difficult. We arrived at the hospital and went straight to C10 where Teresa, a nurse we knew well, showed us to a room which would become my home for the next 4-6 weeks. They managed to find Cara a room in a block of flats onsite so that she could be with me early the next day.
My nephew, Elliott, (centre) with Thomas and Oliver.
On the Monday morning I began 4 days of radiotherapy - 14 minutes in the morning and 14 minutes in the afternoon. The radio therapy room was like a dungeon but the nurses looked after me well and encouraged me to bring along some music which they played while I was in there. The treatment was not focused on one area of the body, it was Total Body Irradiation (TBI) and it was going to play a large part in destroying my immune system. I can remember how lonely it was standing by a wall with lead shields in front of me to protect my lungs, nurses lining me up using a laser and making a quick exit from the dungeon leaving me with strict instructions not to move. By day four it was all beginning to take its toll on me. I can remember wondering when my hair was going to fall out, when I was going to start feeling sick. I collapsed during my final session in the dungeon and was taken to a recovery area. Luckily, the consultant was happy with the treatment and did not want me to return. One piece of advice for anyone who is faced with this is not to take music that you really like into the dungeon as it is never quite the same afterwards!
While all of this was going on my sister had been given injections into her stomach to stimulate her `T` cells that would eventually be drawn off from her blood. She said that this was relatively painless and certainly not too much trouble for her big brother!
The Friday and Saturday saw the introduction of chemotherapy in the form of two large bags of clear fluid. This was pumped in through my ‘wigglies’ and at the time didn’t really cause me any discomfort. ‘Chemo’ was always a word I feared, but, as with the whole process, a coping mechanism seems to take over and the clear toxic fluid dripping into my veins did not really bother me.
Sunday was a day of rest thank goodness. Family visited but we both felt that it would be too traumatic for the boys so they sent me cards.
On holiday with Cara.
On the Monday morning the cells were taken from my sister. This involved them drawing blood, ‘spinning’ off the ‘T’ cells and putting the unwanted blood back into her. The result was a relatively small bag of blood that they infused into me through the Hickman Line. It all felt like a bit of an anti-climax but this bag of blood was my chance of a future.
Over the next week the effects of the radio and chemotherapy really started to take hold. Cara used to sit on my bed and pick out the hair from my head and face. This is what I had always imagined cancer treatment to be - A thin, weak person with no hair. It was a struggle to do anything but the nurses were professional and pushed me to get out of bed to go to the toilet and to shower once a day. Observations were every three hours (day and night) and communication with the outside world was only by whoever walked through that door.
Cara was a rock. She would travel the 50 minutes from home to hospital every day to see me as well as work part time and look after Oliver and Thomas. I would lay there and wait to hear her footsteps along the corridor. It is amazing the things that you notice when you have very little to do. It is funny because people rally around to buy you books, CDs and videos and yet everyone who has experienced this level of treatment will tell you that you have no concentration and no desire to do anything.
At home with Cara a few weeks before my diagnosis
The doctors’ ‘round’ each day was actually something to look forward to. As the days passed the blood counts were the only thing of any interest. Fortunately for me, my count always headed in the right direction and apart from the odd little infection, which was quickly treated, I was a text book case.
Towards the end of week four my count was reaching a point where I was borderline going home. I recall that a nurse persuaded the doctor to let me home for the weekend as she knew that his preference was to keep me there over the weekend. Fortunately she was successful and I remember the feeling of walking out of the hospital building into the fresh air and then seeing Oliver and Thomas when I got home. It was a very special moment.
Recovery was going to be a long road and contact with the hospital remained daily for a week or so and then gradually weekly, monthly and then quarterly. I returned to work in the September and found it to be a valuable part of my therapy.
We were lucky that we had our children before this episode in my life. For some this is not always the case and it must be very difficult for those people to have to come to terms with the fact that post transplant they may never have children. Unbeknown to us, though, our family was not yet complete! Without warning in 2008 Cara fell pregnant and our third son Ashton was born in April 2009. We were both shocked but cannot imagine life without our miracle child.
At Thomas's Birthday a couple of weeks after transplant
Twelve years on and I remain on immune-suppressant drugs. They have attempted to withdraw them on several occasions but the Graft Versus Host Disease (GVHD) always flares up. Contact with the hospital remains every three months but other than that I lead a normal life.
The last decade has taught me to value life. In this time my brother Robbie died from an aneurism in his brain, just one year after my transplant and my nephew, Elliott, completed his complex treatment for his brain tumour. My sister’s son, James, has also had brain surgery to correct an AVM whilst my father died from Pancreatic Cancer. Unlike my brother and father, I had a second chance and I try to make the most of life, best I can.
My experience of cancer has made me a much stronger person. People say that I must look at life differently now. Not at all! I still work too hard and do not find enough time to spend with family and friends. I looked at my cancer as nothing more than a blood disorder and something that I was going to beat. Without this approach I am certain that my journey would have been a very different one. I experienced the NHS at its best, with a team of people who I could trust with my life. I also met people who work tirelessly to raise money for Leukaemia research without which I am certain I would not be here today. I understand that today CML is treated solely with drugs without BMT, again another advance helped by research.”