It will soon be a year since I received the conclusive diagnosis, after a biopsy, that I had cancer. Starting in the left tonsil and spreading to two lymph nodes, it was staged at T3 N2B. I had no symptoms. It came to light only because a sore throat had lingered after a cold, causing me to look down my throat with a mirror and notice that my left tonsil - the site of the primary tumour - was much larger than the right one.
I finished my radio- and chemotherapy treatment on 10 July, a date I shall likely never forget. For weeks after, I remained unable to speak, eat or swallow. I lost about 14 kilos - and I had not been overweight. All the details are in the previous entries on this blog.
Recovery is a long, slow process. I blogged regularly during my treatment and in the immediate aftermath. I found it very helpful in terms of dealing with what I was going through, and the reactions and support it elicited even more so (thanks again to all those who reacted and interacted). But then, after the PET scan on 10 October appeared to reveal "a complete response to treatment" I lost the sense of purpose that had made me blog. I think I did a couple of posts. Since 15 November I have been silent.
I still get my daily e-mail notifications of updates on the Macmillan throat cancer forum. I still read most of them, but usually this means a skim read. I rarely make a reply to post. I returned to work mid- October, trying (mostly failing) to keep to part-time. I battled with side-effects, such as highly sensitive teeth, a still sore throat and fatigue etc.. These have mostly worn off, except for the fatigue, which is mainly mental these days. My hearing is damaged, I still cannot eat Indian food, which was my favourite type, but that is just part of the price to pay for still being alive. Well worth it.
A couple of weeks ago, I ran my first half-marathon (Mo Farah ran it too, but yeah, he beat me...). This was a huge milestone for me (pardon the pun). It was the third time I had tried to run my local half-marathon. I had had to abandon the first attempt due to a hip stress fracture and again two years later because of cancer. So, pretty obvious why this felt like a very big deal to complete (with a decent enough time for an old git too) less than 9 months after finishing treatment.
I don't say this to get pats on the back. I say it to everyone out there who is undergoing or has recently finished treatment and who still can't swallow or speak or eat and who feels utterly exhausted and afraid. Keep going! Just keep going, one day at a time. Accept the pain, don't fight it. Slowly, very slowly, things will get better.
After completing the race, I have begun to feel, more consciously, like a survivor. Indeed, for a while now, I have started to have a kind of survivor's guilt. Dipping into the forum from time to time, I read again many stories like mine. The horror and the fear of the diagnosis, the pleas for insights and advice when dealing with all the pain, the anxiety and the awful side effects. And the heroic survivors out there who take the time, again and again and again, to give their advice and support to the sufferers. These people humble me. As for me, I feel like I have returned to the land of the living. I want to forget the anxiety and pain and be normal again. I am too selfish to do what these brave people do, who re-enter that house of pain and fear in order to help others, and that shames me. I think of one man in particular, who has been through this three times, whose hardship makes mine seem trivial, yet he is out there, supporting, advising, guiding. I really am humbled by his courage. (And really grateful to Macmillan, by the way, for hosting this excellent site.)
I think also of those who have gone. "Denzilpants", for example. Whose earthy humour, honesty (he warned me to watch out for post treatment depression) straight language and, well, no-bullshit advice still makes me smile and which I miss greatly on the forum: he died of a heart attack shortly after it looked like he had finally made it through.
And I think of the most wonderful blogger I met on this forum (or anywhere, actually): she was articulate, courageous, creative, utterly original and absolutely hilarious. She was a true joy to read and I was always, I mean always, uplifted and enlightened by what she posted. But she has been silent since just before Christmas and has not responded to my private messages. Whether she is too ill to blog, or whether, like I did, she has entered a phase where she needs to be silent, I simply don't know. I hope and pray it is the latter.
So what now? As I said, I am starting to feel like I have been reprieved. Like many others, this can lead to a greater enjoyment and appreciation of life. How could it not? You have had a brush with death and you have been let off the hook. Except, of course, you have not. It is too early to say that. In fact, you can never say it for sure. It is what we all want, of course. How could we not? But we just don't know, and we can't know, even if we are lucky enough for the stats to be more in our favour than against. Statistics are about probabilities, not certainties.
After completing the half-marathon, I thought my problem might be one of denial. By which I mean denial that cancer might return, denial even that it had really happened, and believing that I was fully back to normal and could forget about it. But then, a few days ago, I was in the National Science Museum with my son in London. We were having a grand old time, away in a different world, admiring the rockets and the impressive old steam engines that drove the textile mills in the North (in at least one case, incredibly, till as late as 1970). Then I was stopped in my tracks by an old black and white photo of a man being treated for throat cancer in the early 20th century.
A very large metal "egg" had been attached to his neck by a strong leather strap. The part of the "egg" touching his neck had an aperture in it, opened by a bicycle brake lever and cable operated by the doctor, and inside the egg was a lump of highly radioactive radium. So, a very early form of radiotherapy. What struck me though was the expression on the patient's face. He was a middle-aged man, balding, with an Edwardian moustache. Quite handsome. I thought I could detect, on the grainy old photograph, underlying the posed stoicism, a faint expression of anxiety and pain. And then it all came back to me. Here was a man, with a heavy metal lump strapped to his neck, being subjected to bursts of high radioactivity in the vague, experimental hope it would cure him. But he would have known how serious his disease was, and how poor his likely chances of survival were. Hence the expression. And yet, he and his family would have hoped.
My radiotherapy machine was not operated via a bicycle brake cable and the treatment was based on clinical trials, not hope and theory. My chances are very much better and the odds are in my favour. But they are still chances. There is no danger of forgetting, no real possibility of denial. I will never be able to forget. But in fact I don't even want to. It is a question of how to live now, in the light of, in the aftermath of this experience, this brush with death.
Do I believe I have been cured? Most of the time yes, because that is necessary in order to live now, in order to function. Will the thought that I may not be cured return? Yes, frequently. Am I nevertheless enjoying life? Yes, undoubtedly, and I am learning not to worry about the small stuff I used to worry about. But I know, because the knowledge will never leave me, that I live under the sword of Damocles. Not because, like Damocles, I have suddenly been given great responsibility and power, but because I am alive and that is where we all live, not just cancer patients: under a sword suspended over our heads. It's just that in my case, the horse hair holding the sword above my head is a bit thinner and weaker than it was. All the more reason to live now, fully and completely.
This does not mean being selfish, focussing on myself and ignoring my fellow-patients on the forum. I will continue to need them, and I hope I can sometimes give something back, even if not on the same scale as many others. This is not only out of a sense of duty but also because it is rewarding to give back, it is a part of life to do so and that should be savoured too. All parts of life must be savoured and respected. Even the fact that, come what may, I will die one day anyway.
But, er, not just yet please... Got some stuff to do first.
Right then, I must get on with it!
