Cancer stinks, as does any serious illness. We can find reasons to be thankful but can’t gloss over the bald facts. Losing thirty years of healthy life expectancy overnight, coming to terms with likely disability and what that imposes on those we love, and facing up to death and its impact on those we love; these are not positive experiences. Some have it better – some cancers offer a better prospect of full cure or long-term remission than mine. And some have it worse – the quality of life for many is destroyed by a catastrophic event as the first revelation of a cancer. Other serious diseases might be easier or harder for most sufferers. Surely any serious disease is worse for younger patients and for those who must care for them. But there seems little point in trying to place myself in a league table of misery: I can just accept that it stinks, and it has happened to me as it could happen to anyone, and then get on with making the best of it.
Trying to understand, accept, adapt, and potentially help others could be to try to articulate the best and the worst aspects of what I am experiencing. That might even help others to help me. All emotions are magnified in such an extreme situation, so it is not hard to identify the highlights and the lowlights.
Top of the best bits must be the torrent of love, care and kindness. I have been constantly surprised and delighted by the support of fellow humans. It has made a difference – it does make me cry, but more often it brings hope, joy and peace. People are always bringing food. People I do not know well are sending e-mails every month to check up on me. Others are praying and praying and praying. Many offer help and are always willing to provide it, including help for my wife, which is just a necessary and just as comforting to me. There is goodness in humanity, and that has never been so apparent to me.
On the negative side, the worst experiences are the goodbyes. If I sing in a concert with a group, I cannot help but wonder if that will be the last time, and I can feel others thinking the same as they share a hug. Phone calls are always coloured by the acceptance that subsequent calls might be in very different circumstances. Most obviously and most tough, whenever somebody I value visits us, we have to navigate the moment when they leave, and those events at the airport are the worst. We are both thinking the same thing but trying to convince each other and ourselves that things will work out fine and that we will meet again. Memories come flooding back and emotions run high. We do not know how best to handle the moment. I have a sense that doing it quickly and keeping it simple is the smartest policy, but the tears still flow afterwards.
Next on the positive side are moments of sublime bliss. I expect these to become more common as things become more acute. I had a strong one a couple of Sundays ago while singing a beautiful piece of music with a wonderful and talented group of friends that I feel privileged to be a part of. As we moved towards a cadence, I was overwhelmed by a feeling that if God (or whoever) were to take me now, I would depart this world happily. Many tears followed, but I the sense of the prospect of a perfect legacy and closure remained. Such an experience probably does not need Mozart to be involved – a hug with a son or daughter or life partner might be enough.
Some of the hardest times so far have been implementing necessary preparations for possible early death. Around the time of my first biopsy, I tried to put financial affairs in as much order as I could and afterwards I used the steroid energy boost to do a more thorough job. I have had tough but necessary conversations with loved ones. This week I visited a funeral director together with my wife, which was one of the weirdest experiences I remember. All this stuff is a harsh reminder of reality, both in terms of what I face myself and also of the tough times ahead for those I love. We have to do it, and we will do a better job if we help each other, but that comforting thought does not make the experience any easier to endure.
Another positive consequence of my cancer has been the deepening of the relationship with my life partner. Each day we have an opportunity to be closer than we have ever been before, and the times we have together feel more and more precious. I cannot imagine the state I would be in by now without the benefit of a loving partnership, and perhaps I can offer something of lasting value to her as well. We are thrown into a situation where we can work as a team but must prepare for very different futures. So far that has brought out the best in each of us, and that is precious indeed.
On the negative side, I fear progressive disability. Each time there is a setback, I cannot resist projecting it forwards as a trend and imagining what that would entail. I am fully aware that some negative symptoms are temporary, a result of a bad day or of a particular treatment, and sometimes things can reasonably be expected to recover. But no matter how much I remind myself of this and try to accept the current reality, my thoughts drift to the prospect of further decline, and those thoughts make me sad and fearful and make it harder to be joyful and thankful. The last operation made my vision symptoms worse, and it is possible that things might stabilise at this level or even get better again. Somehow I can accept and adapt to things as they are, and that is a helpful attitude, but what if things became even worse, as of course they might?
Back to the positive side, it is much easier now to cherish every healthy day and its benefits. Yesterday I felt rough, but today I feel good again, and my morning coffee gave me untold pleasure as a consequence. I can cherish the happy weekends that we enjoyed in November and December, and hopefully there will be more to come. There is little danger now of taking any of this joy for granted and reducing that joy as an inevitable consequence. I bet you did not enjoy today’s coffee as much as I did!
Back to the negative, smaller failures that I don’t anticipate linger in my thoughts. I can accept that I cannot drive, and even that I may never be safe to drive again. But I have come to realise the same vision issue means that I have a tendency to misplace things and to find it harder to retrieve them afterwards. Things like that frustrate me terribly and stay in my thoughts. Today I succeeded in cutting my toenails, but it was not a good job and left more work for my wife in tidying up the nails that ended up on the floor that I could not recover. Not only have I lost a skill, but I have imposed yet more burden on my wife. That recurring thought is difficult to suppress.
I could continue these lists, and perhaps will do so next time. On the positive side, I can really appreciate renewed relationships. I can also find joy in radical simplification, especially when I know I am making the future easier for loved ones, and also when by stepping back and getting out of the way I can give opportunity to others who deserve it and will probably do a better job than I did. On the negative side, I can regret being sharp with others, and not appreciating the skill and attitude of medical professionals enough. It is also very saddening when I see the suffering of other patients, especially when anger creeps in and the suffering extends to their relationships with others.
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