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“Getting a cancer diagnosis is extremely stressful, and that brings a whole load of emotions, and lack of sleep certainly does not help. I think many of us have periods of insomnia. I experienced a long period of not sleeping. I could go off to sleep quite quickly, but after an hour I would find myself wide awake again, and would spend the rest of the night getting frustrated because I couldn't sleep."
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I'm good Gill thanks.
Finished my 2 cycles now so half way through part 1! Seeing the consultant on Monday but they have changed the frequency of jabs I get. I'm doing one of them every other weeks now. It's the one that kills the cancer cells in my bone marrow and as I know that my protein levels went down, I'm hoping that means there are fewer cancer cells so don't need it so frequently. It will be one less thing.
Have started taking anti-sickness meds as I was vomiting a couple of weeks ago but they're good and really help. Can cause constipation so I'll add those to the list!! Also, my HB have gone back to the normal range so have a bit more energy generally.
Still keeping the positive outlook, have seen a few more friends (outside of course), and trying to get out when I have the energy. Still having down days, especially Friday which is steroid come down day but I know it passes. Instead of mentally planning my funeral on a Friday, I've said I write my school reports! I thought the alternative mental focus would help...it did last week but who knows! Both equally gloomy at times!!
Also beginning to get my head round the stem cell transplant which will hopefully be happening later in summer sometime.
Hope all is going well for you xxx
Morning Gill-I’m sure you’ll would have had a brilliant badge and I’m sorry we can’t see it…
I’ve also been having a lot of problems with the site last night-constant error messages and I couldn’t read by posts here though I had notifications there were some. I see Brian is on the case, so will leave it in his capable hands!
Sarah xx
That's really good to know about all the positives Julie, and I hope the treatments keep working their magic
Aw lovey, it's sad to hear about your downers, but keep resting and getting fresh air in equal measures. Hey, the sky's a glorious blue right now so if you've got the same, look up and drink it in - it's just as healing as the meds.
When I used to do reports I found them stimulating - how best to find the positives in the dubious behaviour of some little darlings! I always managed to find them, thankfully.
We're ok here sweetheart, and thanks for asking. OH should be getting up soon and that's when I'll get cracking!
Take care my lovely, hugs and love xxx
Frustrating!
You would think that all hospitals and NHS Trusts operate under the same system. But sadly since our NHS has already been monetised everything is very fragmented and broken up!
I know this only too well from when we dealt with by younger Brother's brain cancer. The hospital that admitted him referred him to another hospital that had a specialist neurologist, there was a mix up sending the data. He got discharged to home. Had a seizure. Got blue lighted into another hospital, whose A&E dept then could NOT get a hold of his records from the other 2 hospitals. Luckily with everything my Dad had been trhough with his prostate cance & Lymphoma we as a family knew to keep our own diary and record of medical interventions, hence we were abe to advise the A&E consultant all about my brother's grave condition, which generated the best outcome that day.
All this has means that I have a google doc where I record EVERYTHING!
Every phone call
Every letter
Every conversation
This mornings job, take that document, us AI to create a single page factual summary
To then present this to my oncologist at my first appointment of seeing her later this morning. It will help her get up to speed quickly regards my REAL situation, rather than sifting through various letters and notes that do not actually record what was truly said to me at various stages of my journey over the last 6 months.
Rosedeec1bf9b best of luck with your SARs and I would got to the ICO sooner rather than later
As for me the team have issued the SARs download access again, fingers crossed it fully downloads THIS time [EDIT/UPDATE...it downloaded the ZIP folder contains of 3000 files !!
Onwards . . .
P.S. I actually slept from 1am till 7:45am all the way through last night . . . so feeling a little bit of a FRAUD being on this forum this morning LOL
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