Hi David
Your five star accommodation sounds just like the one Peter would have had if they had not sent him home after 3 days!!!! to do his isolation. It was a lovely room with en suite tv, even a games console in the drawer. Plus his own fridge.
The day has arrived and all the waiting is over. bit like waiting to get married !!!!! It will…[Read more]

Roz,
Im so sorry for all that you and Michael have and are going through. It makes me angry to hear of them not keeping you informed. In this day and age its a perfectly normal expectation.
I cant see any reason why the consultant cant ring you, or you ring him. Its not the ideal situation but its better than sitting waiting and worrying.
a…[Read more]

You know what John, while I was doing some research and ordering one for Christmas,on the internet. He went out and bought one himself. It is darn clever fires bullets and sounds like a real tank. (look up heng long tiger tank) Now I have another one coming so will have to play with him… read into that what you wish!
ON a serious note this is…[Read more]

Wow Bridget
Your team are certainly on the button, Its great to hear your news, What would the surgical remedy be? did they tell you.
I dont know what damage you have, but I do know how with 5 vertibra crushed Peter is in constant pain.
It went away for a while after his 1st kyphoplasty but the pain returned 6months later. did not know then…[Read more]

Roz
Just a thought, have you both considered getting a second opinion? A few of the people on here have had experience of Dr's who are not up to the job! That is not to take anything away from the excelent ones we now have but Dai's treatment in Wales is a prime example of one.Peters problems with his kidney Dr another.
One wonders if a second…[Read more]

Hi Roz
Im so pleased your back I was getting worried about you and Michael:-S
Lots can happen between now and Christmas, and they usually let people come home for a few days over christmas from hospital, so keep your fingers crossed and I will cross my toes for you;-)
We will be staying at home for the holiday as peter has Velcade on xmas eve…[Read more]

Hi Jackie,
My husband was diagnosed in Aug last year. At that time he had dreadfull pain, could not climb the stairs, lie in bed, or do much of anything due to the pain.
It may take a little while fo them to find the drug that works best on his pain. Peter for instance found that oramorph gave him indigestion. He has the same pain medication as…[Read more]

Hee Hee John
Before mm Peter knew how to do as he was told but since then he has become dextankerous… Dex has a lot to ansa for. But today he is feeling really good found a new bottle of stuff called Ferogobin b12 its for iron production and he started taking those q10 something or other tablets for his cramps and for the 1st time in over a…[Read more]

Hi Elizabeth,
Peter had Baloon kyphplasty done on 3 of his lower vertebra in December last year, He had immediate relief from the pain, and gained about an inch in height. He went from taking mega doses of morphine to taking 2 paracetamol. There are several reasons for them not being able to give you back height
1 The length of time from…[Read more]

Welcome Norman
Good to have you on board,and sorry that you find yourself here, no one who posts here wants to be part of it, but I can assure you, you will find the answers to your questions on here. If not on the help screens, dont know if the are here yet off the old site. Most definatly from the myeloma infoline which is manned by a very able…[Read more]

Im very pleased we have all arrived safely, now put your thinking caps on for others who we may have left behind. I thinks its time for a party, red wine cucumbers etc. Or as its nearly Christmas, crackers? Seven weeks to go folks.
This time last year was our lowest point, and therefore I for one am looking forward to Christmas this year, even…[Read more]

The Silent Treatment
A man and his wife were having some problems at home and were giving each
Other the silent treatment. Suddenly, the man realized that the next day,
He would need his wife to wake him at 5:00 AM for an early morning business flight..
Not wanting to be the first to break the silence (and LOSE), he wrote on a piece of…[Read more]

Roz
I think I would want to know if he has done anything of this nature before;
I would also want to know if he was the one who did the first operation, why it went so badly wrong, and if he is the one who is going to attempt to do it again what assurances he can give that the second op will be more successful than the one before. Is he for…[Read more]

As a bystander I don't get to know what dexitude feels like , But I do know Peter had just gone back on it, His 1st day the velcade did not turn up until 4pm and the dex had to be taken with food when we got home at 5.30pm. As you all know it should be taken early morning to wear off by bed time. Imagine what he was like the next morning having…[Read more]

Maybe a catch all title that is not mm related but which binds us all together wether we are accompanying a loved one through there journey with mm, suffering in silence alone without loved ones or just needing the support of others who understand where we are in life. Maybe it could be a just the ability to knock on the door of the new site…[Read more]

HI DAVID
Peter gets this rash and thinks its off the elastic in his socks, or the nylon content of his socks or the washing powder used to wash his sock! Whatever it is he has a cream from the Dr for it and it works. I Even bought him socks with comfort tops (no elastic) to see if it stops.. It didn't. Changed the washing powder bought 100%cotton…[Read more]

Nice to see you to see you nice.
Go get Gill now web team

Nice to see that they will be feeling uncomfortable.. If they are to be made redundant it will be Nice to see them wrigglng uncomfortably at decisions made by some faceless beaurocrat! Give them a taste of what its like to have life changing decisions over which they will have no control. Mmm what goes around comes around!
Min

Hi David
Peter had all of them on the same day except for urine collection. He never had one of those even though he had light chain mm.
What a shame you have to drag yourself there for several days in a row. But best of luck with them all.
Min