It’s been a while since I last blogged. About 8 months to be exact. I have learnt one thing that blogging is difficult to maintain when you are unwell no matter the will. In fact most of the everyday tasks are challenging, even things you regard as routine. I woke up this morning thinking that I feel well enough to reflect on a difficult eight months, an existential crisis if you like. Over 7 years since an incurable cancer diagnosis I have never once believed that I would survive as long as I have and a few years longer than the medics predicted. But at its height in the last few months I did feel very ill and increasingly unable to find a way forward but this blog ends relatively upbeat so please keep reading.
A number of issues have been at the heart of the problem, most notably for someone whose love of food is well known and well documented in my girth, I started to find eating an issue. This grew to such an extent that I had anxiety attacks and just could not eat things that were my staple fare – bread, potatoes, savoury dishes etc etc. I understood fully for the first time people with eating disorders. I knew I should eat but simply could not. My diet dwindled down and I was sustained by protein shakes and fruit. The impact was such that weight dropped off me and in six months I lost over 10 stones. I also felt ill most of the time and was diagnosed with a kidney function problem and anaemia that combined to bring me to an all time low about 8 weeks ago. At this point I felt real despair and for once found it hard to see the way forward though the saving grace was that the current treatment for my cancer was, just about, holding its own. I was not depressed though and tried to maintain my positive outlook. I had started counselling to help with the anxiety and it helped a lot, my family and friends began to understand that pushing food on me would not work. But the breakthrough came when my oncologist said that the state of my general health meant I would not feel hungry so to relax and if I did not feel like eating not to worry. I was also retching most nights which made nighttime a little unsettling and I just had little energy. In fact I did nothing as I could do nothing. I felt at my own rock bottom. I was emotional and tearful, my voice became quiet and broken – I was just a wreck really. I stopped taking photos, I stopped going to football, I stopped reading, I stopped blogging, was sustained only by my love of TV soaps and TV sport and my friends and family.
Eight weeks on I feel so much better though the caveat is that it is a comparative assessment. I remain quite ill and though my kidney function has improved slightly it remains a chronic problem and could worsen at any time and renal failure is a potentially real outcome. But some good things have emerged from this period. My type 2 diabetes has all but disappeared as a result of the weight loss. My hb1ac is normal and I have stopped taking all my drugs, 7 a day plus an injection, which had become toxic to my kidneys. I now take one daily dose of insulin to keep it stable. I now have a new slim fit wardrobe courtesy of primark as my clothes hung off me like discarded tents. My voice is back and my general well-being has improved. I am eating more, though still quirkily and still cannot enjoy food as I once did. I have stopped retching at night. But feel more aware of where I am and also where I am going which also is positive.
I have been humbled and inspired by how my family and friends have responded. I feel so lucky to have such caring children and friends who go the extra mile. I cannot express my thanks to them enough. I have also been privileged to see the much-maligned and cash-starved NHS work brilliantly and holistically to bring to bear on the issues. I now regularly see specialist nurses, the GP, oncologist and urologist working together and though there are no solutions they seek the best palliative ways forward as possible.
That brings me to the future as the word palliative implies. My future as everyone’s in reality is is time-limited. No one gives you an accurate time check about death and dying but it is a 100 per cent certainty to happen. It becomes much more defined and urgent when chronic or incurable illness is around. My focus over the past few weeks has been ensuring that everything you can do to prepare is in place – from lasting powers of attorney, wills, medical decisions on future treatment, to funeral plans. It is worth getting these things right because it is not me that would have to deal with uncertainties and disputes.
So what next. Well my current cancer treatment is just about still working though for how much longer is hard to gauge. After that I am currently too unwell for any further treatment which would mean palliative care only. I would formally enter what they call with no hint of euphemism, ‘end of life’ care. The added complication is that the kidneys could deteriorate to such an extent that this becomes the end of life issue. I have discussed with the medics all relevant decisions about potential options as I think for me, and this is a personal choice, it is time to focus more on quality of life than longevity. I write this feeling fine and thinking I might still be like this in six months or more. I would like to see the summer and I remain positive. Now is not the time for regrets or introspection. Engaging with my family and friends becomes precious indeed and there is much to look forward to. I am eating better, I am taking photos again, I am blogging, I have plans to see some live cricket in the summer, a lovely birthday weekend with my two children to come in May, always a wonderful surprise, my July BBQ with friends, visits from so many friends and just the joy of living. So please enjoy my passion for life as I go forward with realism but being positive, it just makes sense to me. I will try to continue blogging.
A few recent photos: