Dai,
I find it quite interesting that you have seen a variety of Dr's from the time you 1st decided that you needed something done about a potential DVT, but not one of them has sufficient clout or nouse or ahem superiority, to insist that the scan is done NOW . Peter had proceedure cant remember what it was, may have been an xray which showed…[Read more]

Hello Craig
I would like to see more regular testing to prevent some patients embarking and continuing on drug therapies that are not working but they are being continued just in case!
the present culture of one size fits all is obviously not the way. there are too many types of MM for everyone respond to the drugs that nice tell us we are…[Read more]

Dear Sarah

Those we love don?t go away, They walk beside us every day, Unseen, unheard, but always near, Still loved, still missed and very dear.

My heartfelt sympathy for this very sad time, for you and your family
Love Min xx

Krikey Keith,
That was quick, I thought I was going to be popping in to see you in FRH. Does this mean if you become ill, you will now go to Stockton? not Freeman?
Whatever I hope its pretty uneventful, though inevitably you will be feeling proper poorly at some point.
Let us know how your doing if you can get your head up off the pillow…[Read more]

Hi Laura,
You must feel abandoned not hearing from us, sorry I missed your post.
As a few days have passed since you posted I imagine your Dad has passed the first hurdle with his medication and the dex effect has settled down a bit.
It takes a while when you 1st start Thalidomide to reach a comfortable level and as your Dad responds to All…[Read more]

Morning Ivan,
As a wife of an mm sufferer I can tell you how it feels to be on the other side of this mm problem. It may help put it into some perspective
Initially [u]Irrational[/u] shock, Fear, horror. Anger. The fear was of being left alone, horror that I had little or no knowledge of MM or indeed cancer. Anger that no one had found a…[Read more]

Welcome aboard Lesley,
I hope you will find yourself popping in from time to time, your post went almost unnoticed, but let me take the opportunity to welcome you to the best place on the webb for mm sufferers in the UK.
Hopefully we can lend an ear to you from time to time or listen while you have a rant.. Dex makes you do that, even when you…[Read more]

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]

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]

Hear Hear
Min