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More Bad News


Ellie

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Hi, how is everyone?


Latest is that nothing showed up in Brian's shoulder after his last scan, which was good news. He went for radiotherapy on Monday and we are hoping that will start to work within the next week. All the pain is coming from his spine and spreading around under his shoulders, down his arms and into one leg. The consultant said it's nerve pain, as a result of the tumours pressing on his spine but are finding it difficult to treat. Fentanyl patches increased to 200mg and he was having 12-15 Oxynorm a day, which still didn't stop the pain and which was considered excessive, so on Wednesday he was admitted to the local hospice. They want to try different drugs and need to monitor everything to see what is working etc. It was awful seeing him in there - I know he's been for the day care and I know he's only in for a week or 10 days, but you can't help having bad thoughts about the place when you go in there. The staff are absolutely wonderful, though, so I know he will be well looked after. They started him on steroids yesterday and he had no pain all afternoon, so that was a good result. I don't think he can be on those permanently though, so not sure what will happen next.

At least the hospice is only 5 minutes away from our house, so I can pop in and out as much as I want to. That's something to be thankful for!


How is everyone else doing? Thinking about you all as always. I worry about you, Juliana - hope you're ok. How is Blue getting on, Clare? Hope all ok with Nicki & Ted.


Love to everyone

Ellie

xx

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Hi Ellie


sorry to hear Brian ha also been having a tough time. So what are they trying in the hospice? And what are the steroids for?


I won't hijack your thread and will update my thread, so you will see the time we have been having also!


CLair

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Hi Clair


Hospice trying to get Brian's pain under control by trying different drugs. The steroids can help with pain and he has had a few almost pain-free afternoons since starting them, which is great! Pain hasn't gone altogether and is especially bad first thing in the mornings, probably because he's lying down and pressing on his spine. Don't know what else they are planning to do, except they mentioned increasing his patches again (already on 200mg).


I have contacted PCUK to ask for advice on what pain relief there is available and any other options available. I know there is the nerve block but think that may be a last resort, especially with the possible side effects. I will have to get hold of the consultant at the hospice and ask what they are planning to try.


Let me know how Blue is getting on.


Love

Ellie

xx

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