Dear Gina,
I am sorry I am not familiar with you Mums problems and hope she can begin to feel well soon. She obviously has many health concerns and it goes without saying that you must be worried about her.
This weather hot and humid is not good for anyone with a heart problem, and the sooner it cools down a little the better for those who…[Read more]

Hi Lorraine
Thanks for the help – glad to hear that things will get easier. Hope you are feeling well now. (Our good news hasn´t sunk in quite yet – just hope it lasts)

Best wishes

Love Carol xxxx

Thanks Helen

I seem to be tolerating it a bit better this week – thanks for the info.
Best wishes
Carolxx

Blyth power stacks in the background, ,but the only beach you an walk a dog or in our case 3!
Will have to ask Catherine for an introduction. Hope you get the lovely Scottish Dr Susan? for your cannula, she is an expert, other one UGH UGH, blood everywhere.
Before we met her a few weeks ago, Peter was going to sneak into the day unit and…[Read more]

Hi Helen,
We spent Tuesday at the Freeman and the RVI Peter had his workup for SCT yesterday at the Freeman. And it will be on the 15th(I Take it the Newcastle you refer to is on Tyne not under Lyme!)
Before that he is in the RVI for his Kyphoplasty (12th)
He was told that the protocol has changed a little since his 1st SCT but again he was…[Read more]

Hi David
The advice Peter got from the kidney specialist he was under before his MM diagnosis was any fluid was better than non.
A little while ago I watched one of those Doctors on the TV Michaell Mosley. think it was a one show item
The item was about the drink x amount of water a day theory. He divided a group of people and tested them…[Read more]

Hi Eve and whoever else is out there in cyberspace.
Its rather sad that it has taken a dreadful disease to bring us all together, but without it, we would be blissfully unaware that there is always someone out there who can chivvy us along when we are down, sympathise when things are not going as you would like them to, or just lend an ear for…[Read more]

Hi Helen,
He is fine thank you and looking forward to getting the next bit of this journey over and done with.
I know how it is with food that has been prepared with love and then rejected.
Once your mum has some anti sickness medication she will be able to eat. but suggest your dad asks her what she wants… then serves it on a tea plate.…[Read more]

Sarah
I am so sorry, what can I say ? you are absolutely correct life is so bludy unfair. I am lost for words but wish you the strength to deal with whatever trials the coming days hold for you and your family.
The important thing is Gordon is going to be surrounded by love and in familar surroundings. Praying for a miracle for you
Love Min

Hi Helen
When my husband was on Revlamid he had the shakes and poor appetite and s and d.
She needs to tell the trial staff of these things and they can give her medication for the s and d and perhaps reduce the dose of the Rev for a while. Whilst these things are know side effects that does not mean you have to SUFFER them there is medication…[Read more]

I am so jealous Dai, waiting with baited breath to hear how much of a difference it has made and if it is um
Pleasurable?
I have seen the advert on TV and when Peters legs were poorly with either kidney failure or more recently DVTs and pulmonary embolisms I considered it, then thought it was just a marketing ploy. But if you give it your seal…[Read more]

Brilliant news Bridget,
Drug holidays Bliss, being able to see your ankles Bliss, choclolate Bliss. Never mind the weight, it will go when its ready. If not it has some useful properties.
I wish I could get some weight on Peter, in readiness for the next hurdle I feel he will fade away due to lack of weight.
Got to get baking now!
Love Min

Hi Sarah
I hope and pray that there is a continued improvement however small for Gordon and that you find some peace for yourself. Difficult I know and much as we tell ourselves not to get wound up it is impossible.
I feel for you, and the heartache your going through at the moment. Little steps improvement wise make such a difference to the…[Read more]

Hi Helen
I had my SCT in February then we had to wait 100 recovery days at which point they started me on Revlimid again. I am now in month three at 25mg and although tired and in some pain etc. not too bad considering what it is doing for me. As you will see above in my reply to Colin my paraprotien is at 0 at present – we just can´t quite…[Read more]

Hi Colin
Just heard that my paraprotien is at 0 !! Can´t quite believe it and am hoping it´s not a "fluke". Glad the dex takes away the back pain – I have had that before the SCT (it made me think I had superhuman powers and was cleaning kitchens etc at 3 am in the morning) but not since – perhaps I could do with some now to perk me up!
It r…[Read more]

Thanks Tom, Pleased that you also feel like keep on "giving it a go". Sometimes I can feel my family´s disapproval when I try to do the things I did pre transplant – but the more I try the more I seem to be achieving – rather like you. My daughter says I do things now that lots of 56 year old´s have never done so why don´t I just try being a bi…[Read more]

Hi Eve, So sorry that you have been disheartened but glad you are going to see the trial nurse. Perhaps your consultant will be able to be more clear when you have next weeks bloods as the chemo does have what my consultant calls a long "shelf life" and keeps working well after we stop taking it.
There seem to be quite a few different types of…[Read more]

Hi Helen, Thanks for your reply and hope that my reply to MikeB also encourages you. I won´t say that the sct was all fun but not as bad as I had heard. One hint that I wish I had known about beforehand. Lots of people of finding that if they suck ice lollies or anything like that ALL THE TIME whilst they are giving you the high dose chemo (I…[Read more]

Thanks Mike – I hope this encourages you – just had the news that my paraprotien is at 0 !!!!!!! Can´t quite get to grips with it yet. Also odd days I seem to ge getting a bit more energy – just been for a short (a very short) little horse ride – I am now off to bed to recover but it is amazing that I can manage to do it and I am so grateful and…[Read more]