It must have been Sunday 12th when Deb was to go to a cancer carer & sufferer support group picnic. That was the day that I was just home from ED, having been poked, prodded, tested & treated for -- best diagnosis -- inflamed lining of the brain. Deb did not get to the picnic.
Instead, yesterday, she met the group coordinator for coffee. And chat.
The meeting was good value. Deb found it... reassuring? ... to hear about other people whose partners were dying or had died of brain cancer. To hear about the wide variety of how it can happen, of how people deal with it.
The coordinator's husband -- as I understand it -- was younger than me. They had children still living at home. His tumour was placed so that it affected his perception. For example he could look at his hand and not know that it was his hand.
He took himself to the doctor and had to convince the doctor that something serious was wrong. (The doctor probably blamed a virus...)
In comparison, my own lack of symptoms is trivial. And -- after I collapsed -- I had no trouble convincing anyone that my condition was serious.
Both he and I found that the first stage of treatment -- chemoradiotherapy -- was the absolute pits. Though I don't know if his side-effects brought him to ED.
Then he began the one week of chemo, three weeks' of nothing, treatment. That's my next stage, to start in a month or so. For the husband, this stage lasted until a tumour regrew and he died.
Towards the end the husband tried all sorts of alternative treatments. Nothing extreme just, outside regular medicine. Nothing worked. Deb & I agreed, we're not going to grasp at those straws.
I guess there must have been other stories. Other stories of dying and death. All variations on the theme -- better paths and worse -- to the common end.
Deb found it reassuring. She was glad to have had the chance to talk with another woman who has been there, done that. And to talk about others who have also been there, done that.
Me? I still feel no urge to compare notes with other brain cancer sufferers. My only question would be, How did it feel, right at the end? And by the time they can answer that... they are dead and can't answer.
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Today I had an appointment with Dr P my GP. I needed new referrals to two of my medical "team", for the next stage of treatment. I also updated Dr P on my current situation (just finished chemoradiotherapy) and status (cheerful).
Dr P is the GP who tested my heart, blood, urine and declared me to be extremely healthy... Just before I was found to have terminal cancer. Ah well, can't win 'em all :-)
I mentioned "inflamed dura mater". Dr P did *not* say, Probably a virus. (Sorry, Deb.) In fact she later muttered, Meninges -- protective layers around the brain -- of which the dura mater is one. A doctor who listens! Thank you :-)
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For the next few weeks I expect to be "recovering", feeling less tired all the time. Perhaps avoiding Emergency Departments for a while. If nothing much happens -- there should be less posts to this blog. (Or the posts will be more rambling & less relevant.)
If posts are rather infrequent -- take that as a good sign...
I will be seeing Dr H at Genesis next week, a final post-radiation check. (Am I still alive?) Then Dr T in mid-December. (What treatment is next?) With a few days away, in between. Oh, and a brain scan then a meeting with the brain surgeon, to admire his handiwork.
Apart from that... expect very little. And if it's all no news then it should mean that all is... good news.
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And now I'm back on holiday planning, with my three years + one month + a few days horizon. Which will bring us to late 2020. I am including a short holiday in WA, a holiday further from home but still in WA, a week or so in Victoria, a visit to the north island of Japan.
Today I eliminated the possibility of a cruise to Japan. Deb had said that flying high is a risk for people with brain cancer. But a cruise looks even worse. Ugh! the jolly bonhomie :-( Will we walk the forests of Hokkaido? In my planning -- yes. Deb, however, doubts that we should even go to Japan... But for now -- it is still in the plan. And... it is just a plan.
Planning for three-plus years. With plans to be adjusted as the situation changes... Plus a few other things to be attempted. Mostly being organised from the PC. Some have been waiting for years...
It's all good fun :-)
==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur
Agamedes Consulting / Problems ? Solved
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"Give a man an inch and he'll think he's a ruler" … Agent 86
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Now much more than a clever name for a holiday journal:
You gotta have plans
ReplyDeleteCheers Col