Devastating prognosis: What symptoms to expect if near the end?

Find another oncologist - one who cares. My husband landed in hospital for 4 weeks and had 3 emergency surgeries to deal with damage to his gastrointestinal system caused by radiotherapy. He had been intubated, rigged to more machines than I can count in ICU. His recovery is out of the hands of the oncologist but she put together a team of 7 doctors/surgeons/ansesthetists/radiologists to treat and look after my husband. And she has visited my husband every day of the last 4 weeks. Quickly find another oncologist- there will be one who cares.

Can you explain what happened with the radiotherapy? Did they somehow hit is colon or intestines?

@gamaryanne It is not entirely clear what happened. It was all so fast after we decided to have a gastric bypass to deal with a constriction of the duodenum caused by the tumour growing at the resected edge of the pancreas. The radiotherapy caused inflammation and I think that made the gastrointestinal system congested and swollen. A week after the bypass the appendix ruptured and surgeon went in to fix it. Then a week after the duodenum perforated and this is near where the radiotherapy was directed. Another surgery, making 3 in 2 weeks. He is in ICU now and has been for a week. In the meantime the cancer is ‘growing’ in the abdomen without chemo for 4 months. I’m am beyond fear and worry. One day at a time.

Have you considered getting another doctor? Also, even though he is not on hospice, they usually will be glad to answer some of your questions. Sending big hugs and lots of prayers!🙏🙏🙏

Oh my. This is a difficult situation indeed. I hope that you feel confident with the team that is caring for him and advising you. He has really had a tough month and you, too, as his caretaker. Please take care of yourself and find ways to get rest.

@gamaryanne Thank you. I have been fortunate - despite the driving, running around and living in hospitals I have not been ill much over the last 22 months - a couple of colds that lasted a day or two and a few short-lived vertigo attacks. Doctors were getting worried about my husband yesterday and it was devastating for me. But they extubated my husband and the man managed to breathe with a little help! His vitals remained stable and/or improved after extubation - I think the tube was causing him alot of stress. He then asked that I take him home immediately because he believed he as not going to get well. That broke me. This morning I went to the ICU expecting the worst and miraculously he turned a corner - vitals improved and stabilised and bowels moved. He is not out of danger but small wins. Cancer has grown in the peritoneum without chemo but that is not something we can do anything about at this time. If I could do it all again I would have skipped radiotherapy but it is the standard of care and it works for many people; it just did not work on my husband and caused him life-threatening issues.

I’m so sorry you’re going through this. My father was in a similar situation with stage IV pancreatic cancer, and I know how painful it is to feel like the doctors have stopped fighting for them. The changes you’re describing, like weakness in the hand and leg and high liver markers, can sometimes mean the cancer is progressing or that his body is starting to slow down. I would definitely try and see another oncologist if you are not happy with the current team. Another opinion could never hurt.

Toward the end, you might start noticing more fatigue, confusion, decreased appetite, changes in breathing, and longer periods of sleep. It isn’t always sudden, but it can happen quickly once the body begins to shut down.

My dad was only on hospice for 3 days, but he was on palliative care for months and they were truly fantastic. They helped him tremendously with pain management and even with his mental health through this incredibly difficult time. It was even cathartic for me.

I’m sending you positivity, strength, and peace during this time.

@jenkins, I thought you might appreciate these articles from Virtual Hospice:
- When the end is near: https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days.aspx

I wanted to check in and ask, how you are doing?