First of all, I’d like to thank everyone that has commented here, or elsewhere, for their generous support over the last few weeks. It makes a big difference and I am very grateful.
Saw the haematologist last night – very nice man who clearly knows his stuff. He quietly took a full history, then had a poke around my neck and armpits.
Basically what I have is a chronic non-Hodgkins lymphoma, that isn’t going to kill me any time soon, even if I receive no treatment. Indeed, if it’s as he thinks it is, no treatment is the best treatment. However, if it’s at a very early stage, then radiotherapy would beneficial. I am probably in Stage 2, but potentially Stage 3. There are 4 stages.
Most people that develop this condition are in their 60s and the average life expectancy is around 8-10 years. Because I am on the extreme left hand end of the normal distribution curve, age-wise, these stats don’t necessarily apply to me, but I was advised last night that there’s no reason why I shouldn’t expect to live until the end of my normal working life. So that’ll be around 70 then, the way things are going. That’s not so bad; my pension is going to be worthless anyway, so I may as well die a month after I retire 🙂
The most likely scenario is that we leave it alone, but have regular checks on it. If it moves onto the next stage (if it’s not there already), then some chemo might be beneficial, but at the end of the day, it’s not something that’s curable and it’s just something that you have to live with until it kills you. Or something else does.
Next step is to have a PET-CT scan, which involves injecting £900 worth of radioactive glucose into your system. This bonds onto all the nasty bits and makes them glow in the dark under the scanner, and is the only way that they can really see what the extent of the disease is. We are so fortunate these days to have all this kit which allows diagnosis without surgery. I am hoping that this will be done early next week.
I told him that I had cancelled my annual trip to the Leica meet in Germany this weekend. “Why?”, he asked. Well, I was under the knife three weeks ago, and didn’t know what was in store for me. Shame though, I’ve been looking forward to that since last year. Always next year.
Finally (sorry about the long post), I am still not very happy about having been left high and dry by the previous hospital. I think I might drop my GP a line, just so that he knows and can consider whether to refer patients to them in the future. If I were in the US, I’d sue them for un-necessary worry.