Hi just looking for a bit of advice, my uncle had a secondary brain tumour removed last year, they couldn’t find the primary cancer so was told he had cancer of unknown primary. The tumour was found to be an adenocarcinoma so most likely from gastro/lung/colorectal area. We were given a 9 month rough life expectancy.
He’s smashed it totally, lived on his own with my help and carers, visited hospice once a week, coped so well, but lately things have been going down hill, he’s in a lot of pain, he’s falling, being sick, struggling to swallow, sever stoop, had swollen leaky legs. Doctors and the hospice literally never took anything serious at all culminating in a really bad fall on the 17th of February.
He got hospitalised and we got told he had bad cellulitis and he would be fine, I knew there was more to it, they tried to get my uncle up to walk he physically couldn’t, a speech therapist phoned me I told her what was going on, she decided more tests were needed and his oncologist came and did some tests and decided to admit him to the cancer specialist hospital on Friday(28th) for a scan on his spine.
Today we were asked to attend as they had the results. My uncle has a tumour inside his spinal column they are sure it’s secondary and feel there’s more tumours as he’s not doing to good at all. I’ve been told he won’t get home they are trying to get him into a hospice. I’m so angry as I feel no one listened and he’s obviously been in horrendous pain, he has learning difficulties and gps were asking him his rating of pain and saying he doesn’t look in pain etc when he has no understanding of rating etc we were so mad as we could see something wasn’t right.
We can’t rely on William to reiterate to us what’s going on totally, so can anyone shed any light on what’s next for him, we have been told months at best no treatment just controlling symptoms. Has anyone been through similar diagnosis?
thanks in advance
Hi Lynrik, I’m so sorry to hear about your uncle, I don’t think I have the correct experience that you are looking for. A friend of mine that I used to visit had breast cancer that spread to her brain she had her last few months of care at home from a hospice team after being in a hospice to work out the correct pain medication for her, she had really good care. As you said the hospice weren’t listening though I couldn’t also let this post go unanswered for any longer. I hope that the results meeting that you went to was able to shed more light or let you express some of your feelings towards his care.
I noticed that you have joined the supporting someone with incurable cancer group and wondered if a copy and paste of your post there may bring some experience. I’m not sure if you are after help with improving your uncles care, or more info on end of life. I don’t know if you’ve tried the Macmillan support line ever, who’s professional staff might be able to listen to how your feeling at the moment and offer their advice. The line is open everyday 8am to 8pm on 0808 808 0000.
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