Hi Gill
Welcome to the merry band of MMrs. Sorry you find yourself here and can understand entirely how shell shocked you must be. B
You about to step onto a roller coaster and might feel like throwing yourself off from time to time but bare with us/ it. We may not have all the answers but someone on here will be at the same stage as you are or…[Read more]

I think anyone on Velcade dex/Revlamind and dex deserves some sympathy and understanding. Compared to Thalid they are good but the downsides are worse. I have watched Peter try to overcome the side effects of V&d and R & D and he was struggling constantly with side effects.
He went back on Thalidomide the other night… after a big break whilst…[Read more]

Hello Dai,
Peters time on velcade was reasonably good, except for the time it gave him pulmonary embolisms. He managed to go to work while on it, (Revlamind made him very ill) But on his visits to the day unit depending on his bloods and his responses to questions he frequently saw the Dr.
I am sure if you ask next time you are in they will…[Read more]

Pregabalin, I remember Peter shaking with that stuff, it was awful turned him into a slavering inert geriatric. It took a long time to get his mix sorted but on a weekly basis there was something new to try.
Pain is awful to bare, my little sojourn in the pain stage was my sciatica and that was bad enough but at least I knew it would go away in…[Read more]

Today I had a day of pampering at the hairdressers and got some more of my long hair shorn and Peter had a day of housework, followed by some sunbathing. Progress at last.
Last monday was the day he came out of hospital, so one week on and he has got his small dumb bells out to improve his arms strength. He used the hoover& put the washing…[Read more]

Hi Angelina
Im so pleased Johns short visit home was successful, I pray that he will be well enough in short time to get home permanently, shame the diahhorea came back, I expect it was the excitement of going home that did it, and no doubt he had been awake all night anticipating going home to cause him to sleep when he got there.
Poor lamb.…[Read more]

Aw Kay
I feel for you, the loss of hair is a monumental event. i remember shaving Peters head in February last year and crying as I did it, after his 1st dose of melphalan, for harvest it was just growing back in May when he had his 1st sct so more shaving needed.
Last Sunday he was in hospital and I had to take in the shaver and do it again.…[Read more]

Hi Bridget,
How are you doing on the new painkillers? Better I hope.
The man gets stronger each day but right now he is worn out with watching the mens finals. while I have been acquiring a tan in the garden.
Today was a breakthru as he made lunch for me!!!!! Only a sandwich and crisps but beautifully served and cut. I know he can do it when…[Read more]

So if you don't ask you don't get, these consultants need to read more Jo. Its not good when the patient is keeping the consultant u to date with current events.
Love MIn

David I am so jealous,
I want to cruise down the Rhine. Or anywhere else come to that matter. But i think our traveling days are over.
You enjoy life to the full whenever the opportunity presents itself. Whisper about it when you come back or I will be green with envy. Lucky lucky man
Min

Oh Gill,
I know just how you feel, its a week now out of hospital with Neutropenic sepsis,sort of the equivalent of an SCT without the stem cells if you know what I mean…… he is becoming a fad. I want I want I want just like a 3yr old and when he gets it he doesn't want it. I am worn out with trying to please and now deciding just to give…[Read more]

Ah sleep, where for art thou. Not in my bleeding house anyway.
Peter can sleep on a sixpence at the drop of a hat, but staying asleep without a visit to the loo now thats another thing. When he is well he walks the dogs at an ungodly hour usually 5 or 6 am poor dogs miss there lie in. He then comes back to bed and has the next 4 hours or so.…[Read more]

Hello Eve
Right now I am exhausted… don't think I have been this tired in a long time. Peter is still very weakened, ( bare in mind I am married to a house husband who loves the hoover and iron!
The most he can do is get out of bed mid morning and take all the medication he needs and watch the war. GRRR on sky.
I think I am both…[Read more]

Hi Belles,
I have read of one person who had this but I think it was in the USA, whoever it was and Im sorry I cant remember I do recall they were very high profile within the usa, maybe they were something to do with the International myeloma foundation, I feel they may have spoken in the house of representatives about it. Sorry ant remember…[Read more]

Thank You Roz.
We had a flying visit to the day ward today for bloods and the results are finally going his way. Neutrophils are 1.5 at last after 2 weeks of 00.2 ..He is feeling fine ( ish) compared to the past 2 weeks when all he wanted to do was sleep and stay in bed)
The plan is 4-5 weeks for a recovery period followed by further melphalan…[Read more]

13>0 13>0 over and understood. Now close your eyes and visualise… some people actualy believe that stuff and whatever it takes…. Good Luck to you.
I am sitting here listening to the Tennis while Peter is watching it having missed all last weeks games and sharipova or whoever she is is making a hell of a racket (pun) while the little…[Read more]

Please don't apologise Gill I know how hard it is when they are released from hospital and how frail from SCT. How is Steven? has he picked up? I don't suppose he can sit out in the sun either unless you use factor 30. Best wishes to you both

Brought Peter home at lunchtime having spent 5 days in Hospital with neutropinic sepsis..something…[Read more]

Peter is on the mend and very much better.He is weak as a kitten but lovley and rosy compared to the grey yellow he has been.
Thank you everyone for your kind thoughts and good wishes,tommorow a decision will be made as to wether he is fit to come home. Hopefully we will learn what happens next too.
Love Min

Hi Kieth pleased to hear your ok, have a lovely holiday/break. Forget all about hospitals and needles for a while. Peter is in the Freeman right now in the ENT ward… they have never nursed a cancer patient so when I went in tonight to shave his pi bald head they were shocked. Ward 33 where you will be is a lovely place and really nice staff…[Read more]