Hi Katra
I'm sorry to read how you've been feeling and I can understand why you'd want to see if anyone else has suffered something similar.
I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
I hope you are managing your condition okay.
My partner had cholangiocarcinoma and he didn't have indigestion but he didn't eat much either. He had 2 or 3 very small meals only each day and felt full very quickly. He said many things that he usually liked tasted different and he declined to eat them.
Because he ate so little I just gave him his favourite things. He ate one wheetbix with milk for breakfast, a sliced apple and a mandarin, tinned peaches at lunch time (a whole tin) and toast and marmite or marmalade for supper and often had more tinned peaches. He found the tinned peaches to be the most agreeable.
His body stopped being able to control his temperature and when he had temperature spikes he also had seizures or rigor episodes. The oncologist called them seizures and the hospice staff called them rigor episodes.
These episodes usually happened at night (although not always) and were only every preceded by a sudden high temperature - and the temperature spike happened with only about 30-60 seconds warning.
The hospice nurses advised him to take paracetamol regularly to control his temperature and avoid the rigor episodes. Of course he could not take tablets once an episode had started as he was unable to swallow.
He usually did not remember the episode afterwards so was not keen on taking the paracetamol as he did not see the need. I had to work hard to persuade him to take it.
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