[SharonGParticipant]

Hi All
Gaye I am glad they have sorted out a plan for your radiotherapy, it seems to have taken them a long time though. Glad you got your 2nd course of Pomalidomide delivered!
Jo this was the patient guide to spinal cord compression that I looked up on the NICE guidelines but you can just search the guidelines yourself if you want, http://www.nice.org.uk/nicemedia/live/12085/42587/42587.pdf
Hope it helps!
Sue will speak to you soon as I am now back home!
Love to all and thank you all so much for your support
Sharon x

[SharonGParticipant]

Yeah they have finally let me up again! The physio came round yesterday and after checking with the drs i was given the all clear to get up! Hopefully will be able to go home tomorrow when they have given me my last dose of radiotherapy.
Pam, you amaze me as you so have been through the mill with this disease and yet you still manage to look on the positive side of things.
Jo, as soon as i get home and am not reliant on this hopeless hospital computer i will put up the information i found on the NICE guidelines about spinal cord compression
Love Sharon x

[SharonGParticipant]

Hi Bridget
I soooo know how you feel! I am also back on 40mgs dex and don't feel i had quite recovered from last months blast i received! I should have been trying on my bridesmaid dress this weekend…….. I will look awful by the time the wedding arrives in june! They should have asked my daughter instead!
Have as much as a moan about this blasted dex as you like, we all have a good idea how you feel. But if the pain gets too much do get it checked out,
thinking of you
love Sharon x

[SharonGParticipant]

Thank you all for your positive thoughts and wishes
I have to admit that the only reason I knew to quote the NICE guidelines was that i had been to see another Dr the day before about my pain and she told me too! I wouldn't have known to otherwise, but i did quite easily find it on the nice guidelines website!
I am back on the dreaded dex! So i am having the munches again- i was only just getting over them from being on them last month, I'll be the size of a house at this rate!
Sue unfortunately i am in the QE again! Its a pain as it makes it so difficult for my family, but i have requested that if i am going to require velcade that i have it at new x. I will text you later
love to you all
Sharon x

[SharonGParticipant]

Hi all
well its looking more likely that I will be joining you all soon on this velcade experience as i now have had 2 different consultants suggest i may need systemic treatment after my radiotherapy :-S .
It is interesting to hear about having it subcutaneous as this could reduce the need to go into hospital quite so much, as I've managed to give myself clexane and GCSF injections subcut at home why not velcade?!
I'm sure one to discuss with the Drs when i get there!
Good to hear mostly positive experiences about velcade
love Sharon x

[SharonGParticipant]

Hi Bridget
well I'm sure I'm going to that hot place that bad people go to!!!!!lol! I wouldn't wish what I'm going through at the moment on anybody else!
I have to have another 5 sessions of radiotherapy and i have no idea how long they are planning on keeping me on bed rest for, i am hoping only until i have finished the radiotherapy!
Hope you are beginning to feel some benefits from your radiotherapy
Love Sharon x

[SharonGParticipant]

Hi Sandie

I had my last biopsy at the hospital where they did by sct not my local hospital and they did offer me some sedation which as I'd never been offered it at my local hospital and had coped fine, so I thought I wouldn't need it!! I will next time! Also at my local hospital a nurse always helps the Dr and is there for you too, it was just me and the Dr at the QE! Although I always have a close relative with me ( usually my husband or my mum) I don't like them to stop with me while they do it as I know its not a nice procedure. I know next time I will tell them what I want!
Hope things are going ok with your mum

Love Sharon

[SharonGParticipant]

Hi Sandie

How brave of your Mum to under go such an evasive procedure at 85, I have to say if I'd reached that age I think a few choice swear words would have told them where to go!!!!!
It is good to hear that the Dr's did listen to you and were sensitive to your Mum's needs at least. Like Bridget I have had varying experiences of BMB's, with my last one being the most painful ( I don't think the Dr cared in the slightest!).
I hope your Mum responds well to any treatment she may have
Love Sharon x

[SharonGParticipant]

Hi Bridget

Thank you for mentioning DLA, but I do already get it! My GP was very good after my allo, I've just had the renewal form and had hoped not to renew it before all this! Oh well, I feel more justified for renewing it now.
I love your shoe story, I also have a passion for shoes! I am expected to wear some heels when I am bridesmaid (or matron of honour!) for my brother in June- I do hope my walking is better by then!
Take care

Love Sharon x

[SharonGParticipant]

Hi Bridget

Unfortunately I am still not able to drive! Its a nightmare! I am having to rely on my parents and husband to ferry me about. Either that or I have taken to walking everywhere I can, but that means my swollen leg is not getting better!!!! I can't drive unless the numbness goes or I buy an automatic car!! As I bought an new car last October thats quite frustrating! Anyway, think I've ranted enough! On the positive side I have managed to reduce my regular dose of zomorph a bit!
Hope you are all well

Onwards and upwards!

Love Sharon x

[SharonGParticipant]

Hi Bridget

Glad to hear that you have finished your radiotherapy. I hope it starts to help with the pain soon.
I have started to reduce my morphine down now, but still have no improvement in the numbness in my leg 🙁 I am really hoping its not permanent.
Good luck with the revlimid and hope the dex isn't too bad!

Love Sharon x

[SharonGParticipant]

I'm afraid the trips to the hospital at the beginning are a nightmare! It does get better, but at the beginning you still feel like you are spending more time at the hospital than at home and I had a few admissions at the beginning for GvHD!

It does get better Shirley though, by last October I was on holiday with my family and you would not have thought there was anything wrong with me, although still on the cyclosporin.
Sadly things have gone very pear shaped since december for me as the myeloma has come back in the shape of a large plasmacytoma at the bottom of my spine causing me all sorts of problems. Not really what I hoped for only 10 months post allo, I can't deny I was hoping for 10 years from my transplant! But the fight continues
I continue to wish you all the best and I hope you don't have too many problems along the way.
Love Sharon x

[SharonGParticipant]

Hi Bridget
I think ultimately I am glad I stopped in, it would have put so much pressure on my family taking me to each appointment (Its an hour each way!). And then getting home and my 7 year old may understand Mom is poorly- but only to a certain degree! I also needed my pain sorting out as I was in incredible pain when I was admitted, I couldn't sit down! I still am struggling to walk as the tumour is pressing on the nerves down my leg and I have very little sensation in the leg which also means I can't drive at the moment! I can't describe how frustrated I am at the moment! I am so hoping that this radiotherapy will sort it all out- the sooner the better! Have an appointment on Wednesday to see whats next though now.
Wishing you luck, and I'm definately still snoozing at the moment!
Love Sharon x

[SharonGParticipant]

Hi Bridget
I am pleased to hear that you are starting your radiotherapy. I also had 5 sessions and not over the weekend (even though I was still in hospital!). Please don't worry about it compared to most of the other treatments it seems a breeze! I am just waiting for it to kick in yet- I think thats the hard part!
Love Sharon x

[SharonGParticipant]

Shirley thats fantastic news, I'm so glad you are doing well.

Watch out for the dreaded GvHD though as I ended back in hoospital with it a week after my initial discharge! (Sorry I don't want to put a downer on things for you, but be aware!) I developed a rash on my neck and a high temperature.

Keep up the good work
Love Sharon x

PS Bridget's hats are lovely!

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