My friends call me Dick; I am 61 and married to Babs, my high school girlfriend. We have two sons. Our eldest son, Alistair, died suddenly 22 years ago in an accident in Africa. James our youngest is happily married, with a baby daughter. I am retired now after a career as a landscape architect and tree consultant.
One night 21 years ago, after cleaning my teeth, I found I couldn’t pee. It wasn’t painful, I just couldn’t pee. I went and made a cup of tea and tried again. Now I was concerned as my bladder felt swollen. I called the out of hours service and spoke to a doctor who asked me to drive to the next town to see him. He was sceptical and urged me to go and produce something in a basin. I strained and eventually managed to force out some blood and tissue. He looked serious and told me to drive straight to the local general hospital in a nearby city.
I was “in retention”. Fortunately for me the drive and the discomfort of my distended bladder made me force the coagulated blood and tissue out when I got to the ward. Relief at last, but they kept me in and I had an anxious sleepless night. Over the next six weeks, it was established I had a very large tumour in my right kidney that was into the renal vein, but had outgrown it’s blood supply and started to breakdown and decay. This was the tissue that had blocked my bladder outlet. I was told the disease was slow growing and I might have had it for 5 years. The diseased kidney was removed 6 weeks later after determined intervention by our angry GPs. The unnecessary delay was hard to live with and inevitably adversely affects the procedure and the outcome.
I had a rooftop incision across the front of my tummy, roughly following the bottom of my rib cage. Unusual for a kidney removal, but this gave the best access in case I was riddled with disease. I recovered quickly and was soon up and fit again after about 6 weeks. I was told it was a dangerous disease with a 50% 5-year survival, but that they were sure they had the entire tumour.
I got on with life, but we were still grieving for our eldest son, who had died the previous year while we were on holiday in Malawi in a bathing accident caused by a sudden change of wind. We were all there, and any or all of us might have perished. I was still feeling grief, guilt, remorse, anger, despair etc. We were a fit family, and all good swimmers, but the conditions had made our ability irrelevant. I had been training hard after the accident and not looking after myself well. At times I wished I had died so he wouldn’t be alone. It seemed wrong to have survived. I am telling you this so you can understand I had a negative mindset. This was the theme playing through me day and night.
Two years later, during a routine check of my lymph nodes in the shower, I felt a pea-sized lump in my armpit. I had a biopsy two weeks later; by then it was a broad bean. After another fortnight a walnut was removed that turned out to be a metastasis, the wound reopened and another op was needed to get the disease left behind. After a CT I was put onto interferon A, injected subcutaneously 3 times a week, which I took for two years. I kept fit for the first 18 months, but I got a campylobacter infection and lost a lot of weight and condition before it was diagnosed. I never really recovered fitness and became steadily weaker. Two lessons here. First, always maintain your general fitness, it will help you to cope with treatment. Second, and this is only for the desperate. I couldn’t inject myself to begin with; in desperation one day I did it through my clean white shirt, which was somehow easier.
I had had no guidance on how to cope with the side effects, and a GP summoned by my wife found me delirious in bed, swathed in blankets, trying to sweat out the fever caused by the drug. They were very amused, of course, and told me to cool myself and take paracetamol. With advice from another patient, I learnt to inject the interferon at noon and start taking paracetamol and would be fine for the next four hours. I would be feverish by 8 but could sit in front of TV and by 10 I would start coming down and be able to sleep. Patients and nurses are usually the most helpful with coping with treatment.
After two years of interferon a CT was negative and I stopped with relief and became fit and strong again. Three years later a CT showed another tumour in my remaining kidney. The lower lobe of the kidney was removed and the tumour was another primary.
Two years later another CT showed two more tumours in the remaining piece of kidney which was removed, and these also turned out to be primaries. I was now living on haemodialysis, which was a bit of a shock, and I suddenly felt very poorly. It is just about enough to keep you alive, but you are pretty sick.
I was referred to a geneticist and investigations found no known syndrome, but my multiple primaries were unusual.
You will have gathered by now that I think mindset is very important. Whatever treatment you are having love your life and nurture your body. Exercise, but not too hard. Eat well, but in moderation. Rest when you need to and try to get good sleep. Avoid stress – it has a powerful depressing effect on your immune system. I believe in God and often just pass the worries over, it’s a great relief. I practice yoga, meditate occasionally, and use mindfulness and guided imagery. But I don’t beat myself up about forgetting to practice, that after all is self defeating. I know when I need it. Give your body the best chance to restore your health. Your immune system has got you this far and dealt with millions of cancerous rogue cells on the way, it is still working for you.
After four years on haemodialysis with clear CTs, I had a transplant, but unfortunately, the high dose immune-suppression needed in the first few months let previously invisible metastases in my chest and belly grow uncontrolled by any immune function. This was discovered belatedly by CT scans done after 3 years; I had dropped off the oncologist’s radar. What can this tell us? Be proactive, manage your care rigorously yourself and stay well informed at every stage. No-one will be as thorough as you.
What next? Average life expectancy on haemodialysis is only 5 years, and your body declines fast as the kidneys do a lot more than the basic functions provided by haemodialysis. Haemodialysis has given me four good years. I travelled throughout Europe and went to the USA, though I wouldn’t recommend that. I rode to Italy over the Alps on dirt tracks, and skied. I did an olympic distance triathlon, slowly, but finished. I tell you this not to brag, but so you know it need not be too bad. I saw our son grow up, go to university, be commissioned as an Officer and give us a grandaughter.
Recently I have done a couple of years on sunitinib followed by a couple more on pazopanib. I switched to axitinib after a tumour was found and removed from my middle bowel. I still have inoperable tumours in my chest and abdomen, whose growth is restrained by the angiogenic drugs. The next step is not clear yet, but I do know I have a great life and want to live it as long as I can so I will keep going. Personally I don’t feel comfortable being called a cancer survivor. It suggests someone desperately clinging on, and whilst there have been bad times I have had 21 great years since diagnosis. I prefer to think I have lived well with cancer. I don’t care too much what others think of me, except those I love. This is my life and not to live it to the full is a waste.
The plan now is not to go gracefully, but to eventually and belatedly skid sideways into the grave, thanking God for a great ride. I am trying to wear out my toys and get all the mileage I can from this brilliant tough body. There are undoubtedly some problems, but living with them is a lot better than the alternative, and I am truly grateful for the chance to do so. I try to remember you get back what you give, so I try to love and give happiness to others, selfish I know, but try to forgive me I’m desperate. I am often grumpy and hard to live with. I conveniently blame the drugs; we patients are lucky there aren’t we, healthy folk can’t use our trump card excuse. Live life as if you don’t know how long you have (no-one knows anyway) and your cancer will be a gift. You will get more from your life than most people who are busy striving for more bedrooms etc.