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I am 53 years old, but around eight years ago I started to feel more tired than usual. I easily fell asleep and my four year old son could outrun me over 50 yards- I was never quick on the sports field but this was not right. So I went to my GP who initially sent me to have some physiotherapy but this didn’t do much to sort out the problem so I left it.
A few months later, at my wife’s insistence I went to the GP again, as I was still feeling tired and more significantly I had some fluid material between my scalp and my skull. This was first thought to be a benign cyst but the MRI and CT scans showed there were two holes in my skull caused by malignant cells. I had Myeloma.
I thought I was in reasonable health – I had played football and cricket for teams into my late 30s and squash on a weekly basis into my early 40s and then I was hit with the news I had an incurable cancer.
I don’t take myself too seriously and try, when appropriate, to see the funny side of things. The natural state of mind for me is that the glass is half-full and this has helped me deal with the darker thoughts crossing my mind in the small hours. While the experts in this field of medicine are making great progress with new drugs and treatments, I try to have as positive frame of mind as much as possible.
Naturally, I was in a state of shock when I was first diagnosed in November 2007. Within a few days I had had some of my bone marrow taken for a bone biopsy and left hospital with a large carrier bag of assorted drugs. The tablet regime was CTD, which involves thalidomide to attack the illness and ensure I would be ready for my first stem cell transplant.
I didn’t know what to expect when I went in for the first transplant. I was ready to take on the world when I went into hospital. The chemotherapy hit me physically and mentally. I mentioned earlier about keeping a sense of humour- I admit I didn’t have one for a few days – but instead there was a battle with how rubbish I felt and how I was determined to get through it.
The doctors and nurses were excellent. I had an infection meaning I stayed in hospital for just over three weeks. Some of those in the same wards as me were teenage lads or young men in their 20s. They had not had an adult life to speak of but they weren’t sorry for themselves, talking of girlfriends and sport and getting through the day smiling. This was before Stephen Sutton and the marvellous work he did for teenage cancer. How those young men dealt with traumatic times in their lives made an impression on me. My life was much improved after the first transplant once I’d got my strength back.
My appointments with my consultant were every three months at this stage and unfortunately I relapsed after 18 months. I was put on bortezomib (Velcade) having heard what marvellous things it had done for other patients. After 6 months it was clear bortezomib (Velcade) didn’t work for me.
What to do? Send in the heavy mob. I went into the Royal Worcester and over 4 days this course of chemo was administered by a couple of R2D2s, my bedside companions. This did work and I was then ready for a second transplant with the remainder of my stem cells. (Autologous transplant) Although it was my second transplant and I had a good idea what to expect, it was no less testing than the first transplant experience.
There was talk of a donor transplant whereby I could receive the healthy stem cells of someone else who was a match with me (allogeneic transplant). However none of my 3 brothers were a match and no match was found on any register.
I relapsed after a year following the second transplant and I was put on lenalidomide (Revlimid). This continues to work for me nearly two years later. I’m also a member of the Worcester Myeloma support group and we meet every two months.
So I am three weeks on medication and one wonderful week off. This treatment allows me to enjoy and appreciate good times with my family and friends and even a trip to Venice earlier this year with my wife. We went for a few days with my sons and had a great time.
I’m looking to be on lenalidomide (Revlimid) for some while yet and to enjoy life as much as I can – maybe with a smile on my face.