What I have learned about remission

 

In February I wrote a blog post on the anniversary of my diagnosis of Non-Hodgkin’s Lymphoma (NHL), a cancer of the white blood cells.

Today is the fifth anniversary of the day I was told I was officially in remission from the disease. The popular myth about such news is that you go home and reach for that bottle of Champagne you have been keeping at the back of the fridge for emergency celebrations. Let me tell you, it was not like that for me.

Talking the other day with a friend who is currently undergoing treatment for a relapse of cancer, we spoke of the popular image of remission as ‘breasting the finishing tape’ at the end of a long race. Neither one of us found this helpful or accurate.

For me it was more like collapsing in a heap, or into a cave. Some of the most dark days I experienced in my journey with cancer (I am reluctant to use the word ‘battle’) came not after my original diagnosis but in the aftermath of being told I was better. I think it is fair to say that this is not commonly anticipated by one’s friends and loved ones.

Just as I shall not forget the uncomprehending looks of dismay on people’s faces when I told them I had cancer, neither shall I forget the same when I told them all I wanted to do now I was well was curl up under my duvet and cry.

I think I am one of the lucky ones, in that I was directed to a specialist post-cancer counselor, and that my family and friends were patient and kind to me as I tried to piece myself back together. The odd thing about remission is that the person who handles those fragments is not the same person who witnessed them being broken. I have heard stories of cancer patients who ‘just get on’ with their previous lives as though nothing has happened to them (and I wish them well). This was not a course I felt I could take. It is long and arduous work, secretive, non-linear and iterative. Every time I felt I had come to understand what I had been through I would find myself crying in the supermarket the next day.

I am very tentatively coming to terms with my experience of cancer, some five years after I got better. As I said in my previous post, friends have died since my remission, while others have been diagnosed, relapsed and still live with the disease. My getting better has protected nobody. I do wake up sometimes wondering if it will come back, of course. But I can also go for several weeks without even thinking about it, only to obsess about it (my counselor called this ‘spiralling’) for days on end, as if out of nowhere. 

I think -I think- I am less anxious about who knows and who does not know that I have been ill. Yes, it happened to me, I practice saying. I would rather it had not, but it did. My counselor labelled this ‘acceptance’, an abstract word I try each day to make into an action. I say thank you, and thank you, God. For the robin outside my window. For my son playing rugby. For my daughter going to university. For this coffee, and the voice in the other room which has just asked if she could have some, too.

Which reminds me, there is living to do, and a life to commit to, each day.