Living with cancer; 17 years on, I'm still alive
Before I was told I had lymphoma, I think if you had asked me how I would react to such a diagnosis, I would have told you “with tears, panic and an overwhelming feeling of self-pity”.
However, when I was given the news, 17 years ago in November, I surprised myself.
Because I was calm, almost relieved – and very, very optimistic.
I had only gone to see a dermatologist at the urging of a friend, because what I believed to be chronic psoriasis was getting worse.
Had my friend, Michael, not urged me, prodded me, annoyed me into going to the doctor, I would not be alive now.
It was on the second visit that I got the news.
I had something called Cutaneous T-Cell Lymphoma (CTCL).
Lymphoma. I knew that word.
“Cancer,” the doctor said, just in case I was in any way confused.
“Our aim is to treat you so that, with a bit of luck, you will die with this disease, not of it,” she added.
And that’s how it’s been ever since. I’m living with it.
There is no point pretending that it’s an easy journey. There are times when it has been absolutely bloody awful.
I have seen many people, friends and relatives, die from cancers of various kinds over these past 17 years and wondered why I am lucky enough to be alive.
Certainly, the extraordinary treatment I have received in our oft-maligned health service has played its part. You might doubt it, but the odd prayer may have helped too.
Mock if you like. But it works for me.
Medically, it has been a series of treatments, luck, minor miracles and major interventions.
Photopheresis was first. That’s where your blood is taken out, irradiated and put back in. All of that happened in Belfast’s City Hospital because, at the time it wasn’t done in the south. So it required a fortnightly trip north.
For a while, it worked. But, like many treatments, its effectiveness eventually diminished.
Next came Full Body Electron Beam treatment. This was also done in Belfast and while it was easy enough at the start, the last few treatments hurt like hell.
Chemotherapy followed and that held things at bay for a while.
Christmas 2007 was a misery as the disease started to badly affect my hands and feet. My hands and feet were covered in sores, bandaged and almost impossible to use. Walking was painful and typing or writing were all but impossible.
Treatment followed treatment. A drug called Targretin was introduced, then it was Zolinza – these names are burned into my memory.
A tumour developed on my foot and treatment after treatment failed not just to get rid of it, but to stop it growing. It took a mixture of drugs to see it off. It was pot luck, in a way. They threw everything at it. And something worked.
A trip to London followed and for the first time a bone marrow transplant was mentioned. The whole notion was frightening. I knew I was sick. But sick enough for such a treatment?
There were two other major developments in my life which occurred at the same time all of this was going on.
Just six months after my diagnosis, Connie, then my partner now my wife, suffered a major brain haemorrhage which she was not expected to survive. Major surgery followed and she did, indeed, recover.
And to prove just how much she recovered, Connie gave birth to our daughter Charlotte seven years later, in April 2006.
So now there were three of us to consider.
My haematologist suggested I have the transplant in St James’s Hospital in Dublin. My siblings all volunteered as donors, sadly none provided a match.
But in early 2008 I was told that it was on. I was to have the transplant in May.
And I did. The donor was, I believe, German. I am not permitted to know his or her identity.
It seems like an age ago.
I can’t pretend that my life now is the same as a healthy 62-year-old’s.
My lymphoma is at bay. Apparently, it’s still there somewhere, lurking.
I have a small difficulty with my eyes, a tiny problem of dryness caused by graft-versus-host disease.
I had diabetes, caused entirely by drugs. Now it’s gone. More good luck.
And I have chronic obstructive pulmonary disease (COPD).
They tell me that a Bone Marrow Transplant can trigger latent respiratory problems. Well, so can smoking. And that’s what I’m blaming for my COPD. Decades of paying out good money to damage my health. I haven’t smoked for 12 years or so, but there were too many cigarettes over my lifetime.
So I can’t play football in the park with Charlotte, can’t climb a mountain with her, can’t go on long walks.
I have adjusted my life. That’s what you do when you have illness. You adapt (above).
You try not to do things you can’t do, so as not to disappoint yourself.
You appreciate what you have and stop complaining about what you don’t have.
But mostly, what you do is appreciate everything. Books. Films. Nature. People. You find yourself noticing good things, good people, good news.
And I thank God that, 17 years on, that I am alive.
Connie and I are extraordinarily lucky to be alive and to have a beautiful daughter so many years after both of us were diagnosed with life-threatening illnesses.
Living with cancer?
It might not necessarily be easy.
But, personally, I think it’s absolutely bloody wonderful.