So you all know my husband hasn't been doing so well. Things seem to have gotten worse since we got him home just over a week ago.
1st night home is overnight feed pump failed. No replacement available locally so we had to wait until the morning to get it sorted. Then he started throwing up, had to get OOH doctor out to get an antiemetic injection. Our own gp visited the next day as it was touch and go as to whether my husband would get readmitted. Thankfully that didn't happen.
He had an alright couple of days after that the he went down hill rapidly. He is no longer able to take anything orally, even sips of water are making a reappearance. He's wretching and straining to be sick.
!!Don't read the next bit if you're eating!!!
On one such sickness occasion he dislodged 3 brazil nut size "bits". The had a sponge like consistency, no smell, were pail in colour, not mucousy, texture like a piece of sponge, but when squished in my fingers (I had gloves on) it went into a smooth consistency. Anyone come across this before?
Because of all the problems husband has been having re nutrition/sickness etc I've been in touch with his upper GI nurses and dieticians mentioned the sponge like substance to them and they said it happens, bits of the tumour break away as it dies off.
Has anyone heard of or experienced this before?. Just seems weird to me that the tumour would be breaking upwhen it's never happened he whole way through chemo.
We have a follow up appointment on Friday and we will be pushing for a stent to be fitted and we see what plan of action they have come up with. I have my trusty notebook full of questions and suggestions for them. I've already planted seeds regrading clinical trials, proton therapy and nivolumab. They said they would discuss things at his appointment.
All we want now is more time together, but we want that time to be quality.
We celebrated our 1st wedding anniversary last Sunday by having ice cream for breakfast in bed. Not how we hoped we would be celebrating, but it worked for us.