@TopOfTheCliff
Happy Birthday! Hope you had a really lovely day.
@SierraSapphire
That's interesting what you said about the lack of granularity and computer modelling in your particular cancer (versus breast ca).
The radiologist said similar to me about mine when I saw her in my pre-radiotherapy appointment. I've got Her2+ hormone negative breast cancer which is about 5% of all BCa and is a very aggressive subtype that used to have very poor prognosis, but with the development of targeted therapies against her2, now has a much better prognosis.
She was saying that due to the lack of data with my situation being so new, they decided to stick to treating 5 areas over 15 sessions. I know most BC patients now - since Covid - only receive 5 sessions over fewer areas, so maybe it was opposed to that, she didn't specify. She also asked if they could use my data for 3 studies; I said yes.
They seem to be learning and discovering all the time at an unprecedented rate, but having subtypes different to what the vast majority have is sometimes frustrating I find. Everyone assumes breast cancer = oestrogen blocker. Maybe you have that too, having a rarer subtype of endometrial ca.
So sorry your oncologist was like that, how stressful and unfair. Mine isn't a warm person, but at least she gave me the treatment plan and I wasn't expected to make any decisions - even when I stopped chemo early it was a joint decision with her making the final decision (which was to stop early based on side effects I was finding intolerable).
@nappybrained @TopOfTheCliff
I'm always very surprised and shocked when I read on hear how medical doctors are also treated by the NHS as though they are completely ignorant. I have no medical training, so it's less shocking, more frustrating and depressing.
One cancer registrar commented to me when I asked a question, "Oh yes, you like to know what's going on" and I thought, well, yes obviously - it's my life, my body. They weren't rude just surprised. Which surprised me!
Getting reports and blood results is like getting blood out of a stone. In the end I had to email PALS and then after various email chains with different people, radiology kindly sent me loads of stuff. It's weird they don't realise some patients need to know. I am still trying to get some other results from last summer (2022).
I've lived in a few other countries, and the last one always handed patients everything automatically, even original stuff like huge x-rays, so not just the reports. I found that weird too, like the opposite extreme, but I actually really liked that. It makes viewing things in context easier, which is something the NHS often don't do (maybe their computer systems don't allow it - eg no access to other hospitals).
@RedRosesPinkLilies
So sorry to hear about the four infected wounds. Thank goodness your GP and nurse were so good; I hope things improve soon.
@Silkierabbit
I really enjoy reading your posts about your visit to Mauritius. I also love birds and the coast, so your holiday sounds truly idyllic to me. Do post more photos!
One of my favourite things is watching the birds (and squirrels) on our bird feeder and generally around the garden. We've got to know their habits and daily patterns - crows, sparrows, blue tits, chaffinches, pigeons, green parakeets, etc. It must be wonderful seeing the exotic birds in Mauritius!
Greetings to everyone else x
Hair
I found these people very helpful. I called them about new growth after chemo.
www.Cancerhaircare.co.uk
Phone: 01438 311322
Email: [email protected]