As a result of my new Diagnosis of incurable Myositis, worsening functional disability, 24/7 at home care and in essence now becoming a quadrapedic receiving palliative care, my Hematologist felt it might be time to bring me into hospital for a “service review”
However, I’m beginning to think going to the hospital is a bad idea.
Why On Earth Would Hospital Care Be A Bad Idea?
I get 24 hour one on one care here at home, which I won’t get in hospital. I’m at a strong risk of infection while in the hospital, and COVID is currently rampant.
My husband has Semantic Dementia and can’t get 24-hour care, but can if I’m at home. He was in a state at 2am. this morning, and it would have been a disaster if my carer and I weren’t here.
I think I could do all my medical reviews/ treatment as an outpatient with maybe one procedure overnight if required.
A date still hasn’t been booked for me, which tells me my specialists are overbooked but also struggling to find anything new to try other than palliative care. They have been honest and upfront about this.
My worst-case scenario is six months to twelve months, but you never know it could be ten years.
They also want to bring in my old clinical immunologist, who you may remember I stopped seeing three years ago as he was so rude and not supportive of my I creased Prednisone dose.
I really don’t want to see him ever again, and I’m pretty sure the feeling is mutual.
Anyway, I’d value your prayers and thoughts as I work through difficult decisions and what’s best for both Peter and I to ensure the best quality of life while being sensible medically.
I’ll keep you posted.
Thank you all so much for your amazing love and support.
Love and blessings, Sam xx
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My Medical Musings 
Sam, you’re carrying so much with such grace. Trusting yourself and advocating for what feels right is so important. Holding space for you and Peter as you navigate all of this. Thinking of you both.
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