Cancer, loneliness and freedom

The Barnet Eye kindly asked me to write a guest blog on cancer, ‘so that people with cancer know that they are not alone’; that is not alone having been diagnosed and treated, and perhaps survived into remission, with one of the most common diseases in the western world. ‘Most common’ and ‘lonely’: why do these words so often go together when talking about cancer? Why is there so much loneliness in the cancer community of which I am a fully signed up member.

I remember when I was sitting through yet another excruciating chemo session, bored and sickening, an elderly woman, who I assume was being kind, came over after her treatment and squeezed my 21 year old hand and said she was very sad to see young folk who were ill.What had I done to deserved it?, she pondered. I remember this incident clearly, just as I remember the day I first went to the doctor, the kindness of the doctors and nurses, the fear in my parents eyes, the chemotherapy and the day the doctor told me I was in remission. All of that I could have predicted, if I had thought about it, before I was ill. What I wouldn’t have predicted I don’t think, was how tough I would find surviving. For I found that life after cancer was not all that it was cracked up to be. It’s tough, surprisingly, to ‘win’; it is not a completely sweet victory to beat the big C.

Cancer is a diseased burdened with taboo, still today. I grew up in the north east of Scotland which is more conservative than these sunny climes, and there I met many people of the older generation who wouldn’t even say the ‘c word’. I knew conversations were happening about me in hushed tones and people were keen to ask ‘how I knew’, so that they might too spot the ‘deadly beast’ that grows inside so silently. The sad thing is that even with survival rates increasing, cancer still wrongly means ‘death’ when even the word is intoned. Doctors say that they would rather diagnose someone with heart disease, than cancer, even though the former many be more dangerous.

After six months of chemotherapy my advanced Hodgkin’s lymphoma went into remission, where it has remained for twelve years now. And of course, it goes without saying, that I am thankful. But I struggled and I wanted to find out why. And I think it might have something to do with the cancer narrative that we are supposed to go along with.

So us lot in the cancer community are forced, however kindly, into a storyline that goes a little like this. You must be strong, fight the disease, and then win. The story that we are supposed to fit into is this: shock of diagnosis, spreading the terrible news, facing gruesome treatment, into remission, happily ever after, hopefully with a new positive outlook on life which helps us to overcome great challenges, run marathons, change career and find beauty in each sunset. And then quickly go back to normal, so you can stop everyone around you feeling uncomfortable; having to speak in hushed tones is so very tiresome. We like the Lance Armstrong story (well we did until we found out he was a lying cheat), and like the idea, as Kelly Clarkson put it, that what doesn’t kill us makes us stronger.

But I didn’t feel that way. I was in remission, but I didn’t believe myself to be braver, or stronger or more susceptible to glorious sunsets. I felt angry that I had to face my own mortality, and sure I wanted to live, but I didn’t know what to do with it now that I had it. Cancer had changed me. I didn’t bounce back into my old self. Cancer had left an indelible mark. I faced that depression that so often comes when identity crumbles, and the loneliness when you don’t fit in; I no longer fitted in with my cancer free peers nor even into my old life story.

Why had this happened? Well, I remembered that old lady in the chemo suite because I believe that she exposed the whole problem with cancer. ‘What had I done to deserve it’? She won’t be reading this which is a shame because I want to her tell that I had done nothing to deserve it, and neither had she, me in my 21 years and her in her 80 odd years. Cancer is not a moral disease which strikes the naughty. Somewhere in our subconscious we have the idea that cancer is a punishment. It strikes the childless woman, or the one who supressed their emotions. Susan Sontag wrote about this is her book, ‘Illness as metaphor’ where she looked to literature and saw that no ones dies a romantic death of cancer. The imagery is of a disease that takes us over from the inside, a demonic pregnancy as St Jerome put it in one of the earliest recordings of cancer. It is something that we have to wage war against.

Let’s expose this as wrong. For cancer is simply when something in our DNA goes haywire leading to uncontrolled cell division. You could almost say that it is life on overdrive, and it does kill, but it is simply nature.

Taboo or otherwise, it is a disease like any other which takes us to the edge, and we are forced to admit our own mortality. And it is lonely by definition to hang around at the edge. First, this is okay. It has to be, right? Maybe we are the privileged few whose faces are rammed up to the ultimate question of life and death and we can work out our own answer. Cancer changed me, irreversibly. Physically, a little, but mostly because I had to face my own mortality, and this is the lonely bit: We must all die alone.

But we also have the key to breaking the taboo and loneliness of others with the disease. Let’s tell our story to them, and to anyone that will listen. Hold them up and let people have a good look. It will make us vulnerable but something in the telling of the story heals.  I am sure there is clever research somewhere that understands why this is. But if we tell our story of cancer, of fear, and maybe the funny stuff too (laughing and cancer, now that is a taboo), then we can not only find some healing for ourselves, but we free others. Free them from their fear of the disease, and perhaps free them to tell their stories too. And where there is freedom, then we can live more fully.