Hi
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Had an appointment today for follow up after radiotherapy. The gorgeous consultant (and ladies he is a really handsome man) was very happy with how radiotherapy has gone. But very concerned about how my mobility is deteriorating and how quickly. He asked what tests I'd had done and looked at results. Said I needed an MRI on my back to see what the nerves are doing. Tried to organise one today but no slots. Do has decided to admit me. Home at moment waiting for a call that a bed is free. Likely to be tonight or tomorrow morning. In the meantime he is stuffing me with steroids (bye bye sleep).
I am quite happy to go in. Will hopefully get a whole raft of tests and see a neurologist while I'm there. Okly downside is it is not my local hospital but where I had op and radiotherapy. 75 mile round trip. But I can live with that if they can get to bottom of issues and help improve my current situation.
So sending hubby to pack bag soon on readiness. Better write everything down.....
Sending you big hugs - let'#s hope the provision improves after the weekend!
I know that services such as SLT, OT and physio don't generally work during the weekends, but you'd think in a place specifically meant for intensive rehab that they'd have a shift system so that therapy doesn't stop!
Fingers and everything else crossed that they can help you become independent enough to get home as soon as possible.
AnnJac I have just been catching up with this, haven’t been around this week.
I feel so sad for you, it really is unbelievable. I hate thinking of you holed up in that place especially with the weather we have had this week, have you been able to get outside at all?
Thinking of you
Hi Anne,
Sorry I misunderstood.
it does seem that you are going to have to look at private help to get what you need.
I do hope the psychologist comes soon and you are able to talk to them. I can only imagine the fear you are going through.
The water therapy others have talked about sounds really good idea.
Nearly the end of weekend, hopefully staff will start to appear tomorrow and you can work on getting out of there. If you feel up to it try to get them to help you shower; might help you feel a tiny bit more comfortable.
thinking of you and still holding your hand
hugs
yvonne xxxx
How is it going ? Thinking of you xxx Hope things are a bit better xxx
It's tough going Snowys Mum. The physios and OT are finally spending a bit more time with me. Saw the doc today as well. His thoughts are that in a weeks time we should hopefully be able to put a date forward for my release.
Everything is tough - I haven't yet come to terms with now being wheelchair bound and that makes everything else very difficult. But I am doing my best but am struggling.
I need to learn how to pull up undies and trousers after going to toilet. The hardest thing in the world when you can't stand. Been searching you tube videos ....
Any tips anyone?
Practise lifting a hip at a time while sitting up, AnnJac, basically sideways pelvic tilts. That will be an exercise you can do any time while sitting up. It’s not easy and will involve your trunk muscles quite a bit, not sure how strong they are now? But it will hopefully help.....
modifying clothing, using Velcro fastenings can help too as then you might not have to get clothes all the way up underneath you? Hard to explain really....
hugs xxx
Moomy
list of suggestions and links https://www.dlf.org.uk/factsheets/clothing
An American solution sold in the UK https://gb-livingspinal.glopalstore.com/daily-living/pants-up-easy-wall-installed/?gclid=EAIaIQobChMI7qHPm7jq5AIVB7LtCh1TDgPQEAQYASABEgINhfD_BwE
original website video for the above https://www.pantsupeasy.com/
I imagine that you could apply for help to buy these or claim the VAT back?
It's so hard to imagine how you must feel. There must be some hope with the way medicine is progressing that in the future they will be able to help you again..like the man recently who regained his vision... but realistically that's going to be years away still:(( xxx
Sorry can’t offer you any tips , but others have. I can only admire your courage and tenacity, and wish you out of there as soon as possible. Big hugs xxx
Onwards and flatwards (don't do hills) and keep walking if you can!
Sending hugs ... very difficult times for you. I thought that OT would have practical solutions for most things. You’ve had some good input on here.
Xx
“ The only constant thing in life is change “
Hi Anne,
thats good that the physios and OT are getting into action.
I can only imagine how hard it is to come to terms with being wheelchair bound. Hope the psychologist is still seeing you and you are getting some of the mental support you need. Also, that they still plan to carry this on when you go home.
good you have an idea when you can go home although i realise that may be a mixed blessing until you have the bungalow.
Glad others have given some suggestions for the pulling up undies etc, hope something there helps you.
thinking of you
hugs
yvonne xxxx
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