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.
Andy, that is seriously good news. Isn't it amazing how just knowing more can be a boost? I shall raise a quiet glass to you and yours tonight. We are all going to die sometime, and frankly I'd rather slope off a bit early and spare me and mine all that dribbling and stuff than hang on past my welcome.
ReplyDeleteHey Andy, old bean, it's beginning to look a bit better now. Which is nice :-)
ReplyDeleteHowever, there was no need to turn this into a political post: I am referring to the pensions issue [big grin]
No treatment is the best treatment, that is encouraging too, no?
quote: "so I may as well die a month after I retire" That's what they call Galgenhumor in the Fatherland ;-)
To then have regular checks sounds the ticket.
Do the £900 for the PET-CT scan have to come out of your pocket? £900! Crikey, you can get a decent second hand Leica lens for that.
You are sure right about us being fortunate about advances having been made in medical science.
Absolute sod about the cancelled Leica trip though :-(
Definitely drop your GP a line. Is he on Twitter?
w.
________________________
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Andy, excellent news. Too late to rebook that flight to Germany?
ReplyDeleteTake care.
I think I'll raise a glass too (hick)
Too late for Hessenpark this year, but trying to organise a trip to Scotland for the end of next week. Depends upon dates for this new scan. I really need to sit on that beach in Kintyre watching the sea otter
ReplyDelete"Choose life", as Ewan says...
"Choose life", as Ewan says...
ReplyDeleteQuite so.
Andy, I am convinced you ARE going to make an extremely good recovery. Put another way, I have(am) drinking youir health to great extent. Trust me! I am a photographer, not a doctor, so I know what I am talking about. What's more, unlike so many doctors, I have trod this path several times and survived. Doctors can only quote what they observe (if they are looking). I, on the other hand have and am living the experience of "near death" so I know what I am talking about.
ReplyDeleteBeen interrupted several times while trying to type this. Takeen 3hrs and counting!! Will pack it in now and off to bed. Let me assure Andy that any tough times ahead can and will be overcome. The way I explained it to my oncologist was that my only problem was how to enjoy myself. His problem was/is; if he finds anything wrong, he has to deal with it, not me. So thereby it becomes his problem. It made the serious bugger laugh anyway.
Incidently, the day of the last One Challenge in Krakow, I was due for a bit of an "investigation" with the 'onco'. I told him I had a more important meeting in Poland and explained it to him. He actually agreed that I made the right decision. It was a decision to "live". I commend it to you.
As promised I will tell you the full story(s) but will PM you as I don't think the world is interested my meanderings. I'm off to bed now. Catch you tomorrow.
Having just returned very late last night from Hessenpark (many thanks to Robert for being so good with lifts over the weekend and for bringing me back to London from Hesse) I am so very glad to read of the vastly better news. Everyone at the meeting sent their very best wishes!
ReplyDeleteHello Andy
ReplyDeleteI have only just heard you are not well and would like to send you my best wishes.If you feel like reading try Lance Armstrongs book "Its not about the bike". Lance recovered from cancer and went on to win 7 Tour de France bike races. We only met once a couple of years ago at the Forum Xmas lunch so my name may not ring any bells,don`t worry about that just concentrate on getting well.
Take care
Kind regards
Brian Phythian (BrianP on the forum )