As ever, in memory of Ellie. Everyone is welcome to chit chat, share experiences or recipes, whatever you need
The registrar sounds very unprofessional. When I was a NHS patient, I only saw the senior registrar once as it was not a bad news day but the main consultant still saw me briefly at the end to make sure I understand everything. After that I only saw the consultant as it was constant bad news! I think you can ask the CNS to put on your clinical note that you want to see your consultant only? But with NHS registrar tends to see the routine patients.
I'm in the US so the system is very different but my situation was a bit more bizarre.
My oncologist was not able to make sense of the hospital notes from my recent hospital stay. He argued with me that they cannot send me home on TPN because that's not a long term solution and insisted that they must have given me another option.
Well they didn't. He starts asking me why they couldn't do this or that. Why is he asking me? Last time I checked I am the patient and he is the doctor. I get he isn't a surgeon but why ask me?
I finally told him they gave me a choice between the TPN and hospice. Then he blew off hospice completely. As if he thought it was ridiculous. So is it? The hospital thought it was appropriate.
He finally agreed to do chemo although he kept saying it wasn't adequate nutrition for chemo. And I was left feeling like it was my fault though it clearly isn't. I don't control any of this.
I am so confused now. The hospital and surgeon had me convinced it was hopeless or nearly hopeless. But the oncologist thinks that's ridiculous and that surgery should have resolved the current crisis.
I can't ask about prognosis or expectations because they don't seem to agree on what's going on. So surgery defers to oncology and oncology defers to surgery and no one is really seeing ME.
So the good news is I managed to get chemo which I thought I wouldn't get. But I don't know if it will improve my quality of life or if I will just be uncomfortable for no benefit.
I am going to seek a third opinion from a university medical center. Since we are basically a 100% private pay system, I can go elsewhere without approval. But wait times can be very long... months. I'm hoping to seem urgent enough that I can shorten that. We'll see.
For now at least I am getting chemo and I'm trying to believe that will help.
I cannot believe I am still ranting 2 days later. So much for my prized calm demeanor!
Good morning and hello new week. Hope you all have had a pleasant weekend and not too many challenges facing each and every one of us over the next few days. Sunny and windy here at present, but the tale telling clouds are moving in slowly. Bloods tomorrow and all being well Hospital on Friday. Looking forward to see Nathan Carter in Aberdeen in 2 weeks. Should be a good night. My Son, DiL, granddaughter and I are going for a bite to eat before the show. My granddaughter is a huge fan of his. Gosh when I was 6 years old I used to go and see Punch and Judy, not bopping away at a concert. It’s great that children now are getting introduced to the appropriate fun and enjoyment of live music and entertainment from a young age.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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