Hi all,
My 74y/o mother was diagnosed with head and neck cancer in 2022. She had a surgery to remove a portion of her tongue, we got the all clear... until it came back late last year. Well, in May, she went under to have a pretty large operation that would've removed 60-70% of her tongue and replaced it with a flap.
Once they got in there, they realised it had doubled in size in two weeks. The operation was no longer viable. We were referred for radiotherapy, which she couldn't tolerate due to pressure on her throat tumour stopping her breathing. To cut a long story short, chemo hasn't worked either.
We're in the palliative stages now, and she just sits on her bed, rocking back and forth and generally in pain. She can't speak well, she can't breathe properly. She hasn't slept in a week. She's only just gotten over pneumonia and she's unable to eat or drink as doctors feel it will cause more infections due to all she swallows going into the lungs rather than the stomach. She has a PEG tube for food and medications - that's it. She's confused all the time and tends gets up to wander then stumbles or falls asleep on her feet and falls over.
I live with her and her other daughter, and it's so hard to say but we're both so completely burnt out. We can't sleep because she doesn't. We've tried shift sleeping and it didn't work at all. We can't go out because she needs constant care. Her other daughter works in the daytime, so 90% of it falls to me. My mother doesn't administer her own meds, she doesn't do her own self care most of the time. It's so hard to see a woman who was so proud and strong turned into this shell of herself.
The palliative team discussed a hospice, where she'd of course be more comfortable. I looked into it a lot and it seems like it's what we all need. She'd be safer, we'd be able to sleep and actually have some semblance of a life, then be more able to enjoy what time we have left with her. But she's adamantly against it. She feels as if we're trying to get rid of her and put her into care. I don't think home carers would do much good, as we'd still be on high alert constantly even with them there. I believe she needs medical care with nurses that can ease her pain and discomfort.
Is there any advice on how to help her realise this is for the best? Neither of us can cope with this for much longer, but she seems to just assume that we should. It's starting to build a resentment which is the last thing I want. All advice is SO welcome. Thank you.
Hi sizuna
I am so sorry to read how awful your situation has become. My mother in law had hospice at home which worked very well. But the family couldn’t really take advantage as they were frightened they would be away when she died. It’s hard.
Would your mum visit the hospice for a day? They do take patients for a few days just to stabilise their pain relief then let them home.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening sizuna, so sorry to be reading this and that the treatment did not help, i remember when my mum had gallbladder cancer and it was inoperable and chemo was not an option, her consultant said there was nothing that could be done and going into a hospice was suggested, Like your mum, she did not want to go but between our family and the consultant we made her realise that she would get better treatment and 24-hour care with the best nurses who are specialised in this sort of thing. We made sure that she had plenty of visitors and home comforts they will make sure she has medicine that will help her cope with the pain and discomfort. It's not easy it's just getting over the initial thought of going into a hospice, Wishing you and your family all the best in persuading your mum, take care.
Chris x
Its sometimes not easy but its worth it !
