He has been unwell (main symptom exhaustion) since Feb/March this year and this is his fourth inpatient hospital stay since April. He’s been in hospital for over 9 weeks now. Only 2 weeks ago finally they explained what they thought was going on - that he likely has a tumour and small bowel cancer (likely as biopsies have been inconclusive) and a week ago they made a recommendation and plan for surgery (with associated risks of course, explained to us in detail and that we understood) which was suppose to take place 2 days ago, except one surgeon who had been away on holiday came back and decided it perhaps needed more thought (even though there was no new information, Dad’s health/medical status was unchanged and the risks were the same as 4 days prior!).
It seems no one wants to take responsibility for making a decision or even a recommendation any more. Chemo is not an option because they don’t give ‘blind chemo’ - small bowel cancer is what they suspect but they have been unable to prove it, plus he is likely not well enough for it and it would be palliative chemo. The alternative of Dad not having surgery is that he lives the rest of his days as best he can, however because he is reliant on TPN via PICC for his nutrition, we have been told that getting this organised in a community setting will likely take many weeks, which he doesn’t have!!!
So every option on the table seems to have poor outcomes. “Damned if we do, damned if we don’t” as my poor Dad put it.
To top it off, I am pregnant with my first child (and Dad’s first grandchild) due in mid-March, my mother has Fronto-temporal dementia (she is 67) and lives in a care home and my brother isn’t really involved with either of them as his own life is more important.
Trying to process what is going on with Dad and what the future looks like is hard enough without having any clear way forward as well. Any advice or suggestions anyone can give me (us) I would appreciate.
Thank you in advance, Alison.
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that about your dad.
A cancer diagnosis can indeed bring a lot of stress, confusion and questions but talking with people who are on the same journey can help a lot.
I see that you have posted on our Small bowel cancer group and this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
As I was the person with the cancer my experience of supporting someone is very limited, although my wife has been amazing over my 20 years. You may also find our Careers Only and Friends and Family group a good place where you can connect with others support family through their cancer journey but more importantly the carers care for each other.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
All the very best ((hugs))
