Hello
So sorry you have all had such a sad and difficult time – and indeed still are. Even though you sound to be coping bravely you must be worried sick yourself whilst trying to be reassuring and positive for your dad. I´m glad you came here to talk as there are lovely people here who understand how much of a help it is to get things off your…[Read more]

Welcome home but take it easy. I hope you can get some serious R & R now

Gillxx

You have done Michael proud Roz. Now it is your turn to enjoy the fruits of your labour and enjoy it

Gillxx

I know this is very sloppy but it is also very old. I like to think that Gurney wrote it in her latter years

Dorothy Frances Gurney (1858 – 1932)

The kiss of the sun for pardon, The song of the birds for mirth, One is nearer…[Read more]

Dear Gaye

I have only been popping in and out of this site recently as other things seem to have taken over but I have just caught your post and your decision.

I know that Stephen will make that same decision at some stage and that my instinct will be to beg him to change his mind. I will not do that as I know that would be from my selfish…[Read more]

Hi All,

Sorry we have not been here in a while?things have been a tad busy. Thank you all for your kind and encouraging words! David has now completed his 4th cycle of Velcade and by the look of it will be doing an other 4 before preparing for SCT?

The last couple of weeks have been difficult for David. His pain levels in his back have…[Read more]

Helen,
PS. So glad to hear your going into sct at 0 – fantastic starting point for you I feel quite excited that you must surely have a super long running remission.
Fingers and toes crossed.
Carol xxx

Thanks Helen – at least I´m forwarned then not te expect too much at first.
Take care
Carol xx

Hi Helen

In that case we are doing things in a slightly different order as I have had my sct (which by the way has left me now with 0 yes zero paraprotien level!) and am now just finishing my 3rd cycle of Revlimid.

They seem to be so well practiced in this procedure now that I am sure everything will go smoothly and know are in good hands so…[Read more]

Hi Helen
Thanks for the update about stiff joints and sickness etc. Sounds like you at a similar point of treatment to me – I have just finished my third month of Revlimid.
Glad to hear that things might be settling down over the next few months and I might be able to get a bit more active.
Have a good weekend
Love Carol xx

Hi Gina
Glad to hear things are a little more positive. You sound such a lovely caring daughter – your mum must feel so lucky to have you but please do look after yourself too won´t you? My carer is my husband who spent the first 9 months up to transplant worrying himself sick and hardly every having a break from thinking how he could make…[Read more]

Hi and welcome!
So pleased you are having a good long run. I managed for just over five years and to be honest if it had not been for my job becoming incredibly pressurised and our elderly mum becoming very difficult and demanding I suspect I would have continued well for quite some time. I should have put my foot down and looked after myself a…[Read more]

Hello Gaye

Although I don´t know you may I say a personal "Thank You" for sharing your decision. I think many of us will understand very well your thinking process – for me I know that there will come a time when it will seem more natural to go rather than stay.

I wish you peace and loving support throughout the coming days and I am sure…[Read more]

Hi
So sorry your mum is so poorly and you are all under such a strain. I was in a similar position to your mum last year and have to admit I felt not only low but a real burden on my long suffering husband. As soon as the antibiotics etc. kicked and I started to feel a bit more positive I saw the relief on his face and realised that this is…[Read more]

The very best of luck with your lates round of "torture" Do keep us all posted Gill xxx

Realy sorry to hear that your dad died but pleased to hear it was peaceful. It is all we can wish or pray for for at our end. Gillxxx

Hi Helen
Glad to hear your feeling a bit better slowly and congratulations on the 5 mile walk – you must feel as if your getting somewhere now.
Do you know what causes the stiffness in joints etc. – mine is so bad I walk like a penquin if I have been sat down for longer than 10 mins! Even my finger joints are stiff and painful.
I think Tom…[Read more]

Hi -whinge away! sorry your having such a poor time of it. I am nearly at the end of month three of this latest round and am on 25g and feeling pretty fed up. Regarding the sweating no I don´t have that but do have rashes and sheer exhaustion – I am now only managing 4 hours before I have to lie down again for a few hours rest and trust me I`m…[Read more]

Hi Laura

Sorry you have joined us – I`m sure you must be so worried about your Dad. I didn`t have thalidomid but other chemos give similar side effects and they gave me some smashing tablets that really helped with the sickness – please do ask for them. As mentioned already I too found that taking the chemo at night helped a lot.

Take care…[Read more]

Sarah I have no idea what to say You have a great many people that you have never met, will never meet but ,like me are shedding tears for you.

Stay in touch if you can Gillxx