I’ve been reading and re-reading articles and branches and links from those articles and the links from those articles etc and I’d thought, wrongly, that I had all the information I wanted/needed.
im at the stage in the process where I’ve go no symptoms from the Squamous cancer cells in my neck lymph node, except maybe some tiredness, I’ve had various meet the team sessions with the lovely staff at the hospital and have the “experience” of the immobilisation mask on Tuesday direct after this long long long Bank holiday weekend.
I’m somehow ok with the radiotherapy and all the soreness and ulcers and gluey saliva and pain and the follow on constipation from the pain killers, and the laxities to counter the constipation, and the ways to counter the dehydration and tiredness of the laxative - and on and on and on etc… and the fact that those issues and more might not appear for the first two weeks or so of the 6 weeks of radiotherapy but could last for 4-8 weeks after the radiotherapy.
I also thought that I was in a similar frame of mind and acceptance for all the chemotherapy side effects… but yesterday I found a whole cul-de-sac of information web pages which all collaborate a previously well-guarded secret that chemo-brain can be a permanently “self” induced mental disability for the rest of my life.
Yes, there are some places which say the chemo-brain sometimes only lasts a few weeks after the treatment then everyone back to normal.
I was previously somehow ok with signing my consent to all the temporary aches, pains, discomforts and humiliations but signing up for a permanent mental disability is well outside what I previously thought anyone in this situation would have to wrap their head around- while there’s still the brainpower left to wrap any reasoning around anything. I wasn’t Einstein to begin with, but my work is all tied into innovation, spreadsheets, discussion, future planning, and multi-tasking. It’s just typical that I find this unmentioned (verbally) shocking show-stopper just going into a long bank holiday with probably none of the hospital team to talk to before mask fitting on Tuesday.
then again, what would they say ? “Some people, some times, on some occasions, occasionally, in some cases” I wouldn’t be any further forward , in no way reassured. And what’s the alternative, radiotherapy on its own with less effectiveness, don’t bother with any treatment at all - no side effects, no feeding tube, no pain, just a few years of tiredness, or possibly a rapid change at some point but at least I keep being me for a few years longer.
The poison selected for me is Carboplatin. Starting on the same day at radiotherapy day one on the 26th of this month.
I thought I’d got past the “yes / no” decision for the treatment to start but since yesterday - every “ok” , every “I can cope with that” and every “yea, if I must” is now floating around in midair, circling like vultures. Not helped by the reading fact that some cancers may release brain digging chemicals already, even before treatment begins, clouding reasoning already.
I feel they (the doctors and oncologists and support team really made an effort to keep this “permanent “ bombshell as some kind of top secret , never to be mentioned factor.
And none of the “how to live with chemo brain” give any sort of practical reassurance just lots of “how to live with being more thick than you used to be” with tips about smart phone alarms, sticky notes and avoid multi-tasking - if I was retired I wouldn’t mind probably slipping into “forgetful granddad” mode , not that I’m a grandad yet but I’ve got 10 years to go before retirement and shelf stacking doesn’t really appeal - and the thought that I might end up not really knowing that I shouldn’t accept just being a shelf stacker because I can’t remember doing anything that was ever more useful than that.
I’m going to see if there’s someone to talk to in the team when I’ve finished my mask fitting on Tuesday.,
y I found a whole cul-de-sac of information web pages which all collaborate a previously well-guarded secret that chemo-brain can be a permanently “self” induced mental disability for the rest of my life.
I feel they (the doctors and oncologists and support team really made an effort to keep this “permanent “ bombshell as some kind of top secret , never to be mentioned factor.
You need to discuss your feelings with the team and sorry you have all Easter to ruminate on it
Chemo brain is no secret. It's a well known phenomenon. I suspect you haven't had it mentioned because we generally don't get it as we don't get much chemo. I don't think there is much danger of you becoming a forgetful grandad.
There are loads of us here amply illustrating that we have retained our marbles.
I agree with Ray. Get the mask done at least.
If you have no treatment you don't get a few years. Oropharyngeal cancer is aggressive and it kills you pretty nastily and permanently
Google is a pretty useful tool but only if you know where to look and understand what you're looking at.
Don't throw the chance to live away.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
The radiotherapy is the main treatment. If you are going to stress badly about cognitive dysfunction you won't get through the radiotherapy. It's hard enough as it is.
Treatment of any kind is always our decision. Nobody will force you. You've talked to a few people here who are OK though.
Good luck. Let us know how you get on.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
