So here we are on New Year’s Eve, and while the rest of the world prepares to party, I’m sitting in a hospital reception waiting to see my consultant haematologist.
Following a few months of unusually low blood counts, and a bone marrow biopsy at the beginning of December, today is the day I get my test results.
The doctor shows me through, and introduces me to one of his nursing staff who is sitting in on our appointment. The significance doesn’t immediately strike me. Then the conversation opens with some good news, because we have a very positive diagnosis from the biopsy. I say good news, because that’s how my consultant portrayed it. After some earlier speculation on possible causes of my low blood counts, the biopsy has confirmed that I have an uncommon form of lymphoma called Hairy Cell Leukaemia. The good bit is that it’s been identified at a very early stage (almost by chance from routine blood testing due to an infection), and also that this particular form of leukaemia is very treatable with a high success rate and very lengthy remission periods. I’ll need chemotherapy of course, and the hospital will be in touch very soon to make those arrangements.
Consultation over, the specialist nurse then escorts me to a separate side room, with cosy chairs and a box of tissues on the table. Everything clicks! This part is in case I’m in need of any ‘tea and sympathy’. While she’s away printing off my information booklets and support leaflets, I’m busy on my smartphone starting to read up on my condition on the Hairy Cell Leukemia Research Foundation website. The nurse returns, and we spend some time discussing how I’m feeling about the news, along with plenty of practical advice on what happens next and what support is available for me.
Was the news a surprise to me? Not really – I had kind of formed this conclusion already in my own mind. If anything, it came as something of a relief that I could finally put a name to what was wrong with me, and start dealing with it. And a 96% treatment success combined with lengthy remission periods of perhaps 10 to 20 years was far better than the more aggressive forms that I had been imagining.
So armed with my leaflets, I leave the hospital and carry on to work. I had already committed to covering the Christmas shifts no-one else wanted, providing minimal cover in case the company network went down. As expected, it was an uneventful shift, and I kept myself occupied doing some pre-planned work. The quiet time by myself proved a useful opportunity for me to gather my thoughts and get my head round how the immediate future was going to shape up.
Then back home and the distressing task of telling the people I love. First to know would be my wife of course, and it was a particularly upsetting subject for me to talk about, despite knowing that because of her medical background she would be as pragmatic as I was on hearing the news. Almost as difficult to tell my son and daughter. Slightly easier to tell my close family when we met as arranged on New Year’s Day for a family Christmas get-together with my parents, my sister and her family. By January 2nd it was becoming a much easier conversation to have with people, which made informing my boss and my work colleagues much less emotional than I would have thought. Well, for me at least. I guess anyone hearing that news for the first time is going to be a little freaked out and lost for what to say. I certainly put an Elephant into the Room that day – Sorry Guys!
I gather my treatment is likely to be a 5-day course of either injections or intravenous infusion of a drug called Cladribine. Side effects are also the main risks associated with the treatment – fevers as the cancer cells are killed off, and very low resistance to any opportunistic infections. The instructions are quite simple. If you’re shivery, go to hospital. If you feel generally unwell, go to hospital. If your temperature reaches 38°C, go quickly to hospital. I’ve now got my emergency card in my wallet, explaining what’s wrong with me and what action might need to be taken in a hurry. I’ve also followed the recommendation and treated myself to a clinical thermometer, which I’ll be carrying everywhere for the foreseeable future.
So there we have it. A challenging start to 2014, and I’m sure as my treatment progresses there will be more for me to write about. It still seems a little surreal to see the words ‘cancer patient’ and think that the description now applies to me!