[tinkerbellParticipant]

Gaye,
I am so glad that you have got this new drug which I'm sure will work wonderfully for you. Fingers crossed that the drugs arrive and you get to start next week. This is a step in the right direction for us all so thank you for advancing the fight against this disease. Will be thinking about you.
Pamela xx

[tinkerbellParticipant]

Hi Bridgit,
So glad that you are getting radiotherapy and so quickly it really is good to get on with it. I had RT three times last year and found that the pain responded quickly on all occassions. Like Sharon I had one episode as an inpatient which was easier as I spent all day resting and had no one to run after. I've found with RT that you need to rest as the travelling to and from appointments on top of the treatment does make you tired so look after yourself and take any help offered. Wishing you all the best with the treatment and fingers crossed you get fast relief.
Pamela xx

[tinkerbellParticipant]

This has been a year of mixed emotions for me regarding treatment full of highs and lows but with help from others on this board you pick yourself up, dust yourself off and realise that you are not on your own. Christmas is a time of hope full of the anticipation of new life, joy and peace. I trust that everyone will be able to spend time with those who matter most to them and that we will all be there for each other for many years to come.
Pamela x

[tinkerbellParticipant]

Glad to see that you're sense of humour hasn't been affected Bridget! If you heard my singing voice you'd know that I wouldn't be very enertaining. Glad to report that both femurs are now successfully nailed and I've managed to get up on my feet and hopefully will be going home tomorrow after being disappointed as had hoped to get discharged today. Lying in bed at the minute watching TV and waiting for someone to bring my dinner, been to see the OT to sort out aids to help while I recover and hopefully no more snow tonight so that getting out of here tomorrow isn't hampered. Hope you are all well and getting ready to enjoy your festivities. Pamelax

[tinkerbellParticipant]

Oh Bridget what a bummer but Revlamid seems to be a great drug that the majority of people have a response to and in my experience radiotherapy does sort the pain out relatively quickly. You are probably feeling much better now you've had a few days of IV antibiotics and a good rest with people looking after you and taking it easy in hospital. Fingers crossed about funding for Revlamid but this doesn't appear to be the same the problem now as is even a year ago. Hope you stay well and take care over Christmas and get radiotherapy really soon. Best wishes Pamela xx

[tinkerbellParticipant]

Thanks for bringing something to make us all laugh. Do Frank good to hear you laugh Jean!

[tinkerbellParticipant]

Thanks for the responses, my husband has followed the link that you posted Mini and enjoyed reading it's content I'm going to wait until tomorrow as on arrival at hospital they decided to nail both femurs. There is a risk of the right one fracturing and they felt that it was best to get it all done now but I think the risk of infection tracking from one leg to the other is too high so they do them separately. Anyway left leg done on Thursday and can manage to hobble around on crutches so hopefully the recovery for the other one will go just as well and I'll be home for Christmas Eve. I have three lovely sets of sutures down the outside of my leg and there is discomfort now in my knee and along the bone especially at night. Had morphine infusion for two days following the procedure as well as IV paracetomol and although uncomfortable it was certainly bearable I think I had more discomfort following my two C sections. Will keep you up to date on how it feels to have both legs nailed.

Pamela x

[tinkerbellParticipant]

Oh Gaye,
Sorry that your feeling a bit down. I've had pain my leg although I've managed to achieve another remission and am happy to be going to use thalidomide as a maintenance drug and have started an array of vitamins to prevent the the PN getting worse. I've been having pain in my hips and legs though and was rather shocked last week to be told that my left femur is at high risk of fracturing and needs nailed. I'm now on crutches and waiting for a bed to have my operation so quite annoyed that I'm now feeling well just annoyed that I'm not going to be able to drive for the next seven weeks plus. On the positive I went to see Peter Kaye on Friday night and had a fabulous time and haven't laughed so much for a long time which is good for the soul.

Is there anything specific getting you down? Hope it's not the snow.
Pamela x

[tinkerbellParticipant]

After what has turned out to be one of the days that this disease kicks you in the teeth when you thought it was actually starting to get better you've made me laugh out loud Gaye – Thank you x

[tinkerbellParticipant]

Congratulations – Erin was on my short list when Beth was born a really lovely name. Hope you get to see her really soon and both baby and mum are well.x

[tinkerbellParticipant]

Hi Nettie,

No I don't think that you are cracking up. I have the same problem with ice and I feel sick if someone mistakenly brings me a drink with ice in it. I have even felt sick when others have ice in there drinks and it's just from sucking it when I had the melphalan. Hope the snow clears up soon.
Pamela x

[tinkerbellParticipant]

Well done Mr Lappin glad that all those cells are behaving themselves must be the vodka maybe I should try that. Tomorrow is hospital day for me and my numbers had fallen last month so I'm hoping that the trend has continued. Zometa tomorrow and then a long wait to get the big bag of tablets for the next month. I got my flu jab last Monday and went to Rome with my sister to sort the wedding and promptly got a stinking infection but just dosed myself with antibiotics and paracetomol and enjoyed the wee break. Don't know what will be happening when I get to the end of this I'm really thinking about asking for maintenance thalidomide instead of having a second SCT so quickly. Have a lovely spooky weekend and don't be scaring to many trick or treaters with those crocks and socks!
pamela xx

[tinkerbellParticipant]

Yeh Tom thank deserves a stiff vodka to celebrate for Elaine. Good luck for you tomorrow will be thinking about you.
Tinkerbell is my favourite disney princess so nothing posh about my username. I took our baby for a haircut today and he slipped his lead and escaped from the groomers. I spent an eventful 10 minutes chasing the wee bugger up the street to retrieve him only with a slice of ham from the local sandwich shop. Two hours later he was washed, nails clipped and trimmed and looking like a new wee man. They are such good fun but such a lot of work.
Pamela xx

[tinkerbellParticipant]

You are hilarious Tom!!! Loving the picture of your baby boy xx

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