Hello everyone, newbie here but have read through lots of threads
Apologies for the long story, but am posting in case anyone can share some insight, or experience, or words of wisdom.
My husband was diagnosed in October 24 with a 10cm tumour, completely unable to eat or drink and had spread to nearby node, cT3N1M0. The plan was 4 FLOT, surgery, 4 FLOT. Spent December in hospital due to being really weak and following issues during surgery to insert a jej to feed him.
He tried but was unable to complete CPET before chemo due to weakness, having barely eaten for weeks, but no issues were raised about his heart/lung function then.
Chemo started in January 25, severe diarrhoea put him back in hospital for a week, and 5FU was reduced slightly for the remaining 3 cycles with GCSF introduced. Cycle 4 floored him and subsequently spent weeks in bed with leg, knee, ankle pain - no known cause. This has been on-off since chemo finished - some days he can get up and come downstairs, most days he either can't or just won't, some days he just loses control of all his bodily functions. Post-chemo PET scan showed the tumour had shrunk, and he can now eat/swallow, which is very good news as the Nutricia feed through his jej makes him feel sick.
Because of the leg pain, he was unable to exercise or get fitter. His post-chemo CPET was 'shockingly poor' and we have now been told he is too high risk for surgery, given the results of both CPETs, so potentially looking at chemo or immunotherapy instead. We are still waiting to hear from the oncologist about next steps as it is now 3 months since cycle 4. My husband would prefer to risk surgery, but that is not an option.
He is no longer working (whole other story...) due to the looming surgery and post-op recovery which now isn't happening, and he currently isn't well enough to start another job, so has nothing to get up for.
I've been juggling caring for him, his meds and injections, driving to and from the hospital for appointments and daily lengthy visits when he's admitted, and still working full time - but I'm shattered now, as I am still recovering from my own cancer diagnosis and major surgery last year. Luckily I am pretty resilient and positive, but he will not do anything for himself or to help, never has.
So.... if anyone has been in a similar position of being unable to have surgery I'd be grateful for the heads up on what ongoing chemo or immunotherapy looks like, how often it is needed, positive stories, expectations, chances of being able to work etc.
Seeing how he was after the minor jej operation, I can't imagine how he would have coped with Ivor Lewis surgery - so perhaps the non-surgical route is a better option for him.
Thank you for taking the time to read all of that - big hug to everyone going through this.
