Ah Dai
Why cant all mm men be like you.
Know your ill and do something about it, not sit and wait for tea and sympathy and more problems that come about as a result of ignoring a temperature.
It is so much harder to treat an illness that has been ignored than nipping it in the bud, as peter has found out to his cost.
I think you need to have…[Read more]

Gill
Its quite a relief to find I am not the only one who has to get a wayward hubby in check.
I thought I was alone in being married to a martyr who would rather be ill than admit he needs help.
I dont take any pleasure in 'grassing' him up but at least they know not to look at me when they ask him a question!
He is very sorry pixie now for…[Read more]

HiGill thanks for making me smile this morning , the image of you pulling that sock out was funny I have been thinking about how reluctant we are to go in to hospital and I agree with Stephen , time at home is precious and the thought of hospital food , beds etc is not a happy one I t was the hospice that wanted me to come in to look at my pain…[Read more]

Hi Dai all I can add to this post is that I have just found my lost keys —–in the fridge!!!Enough said! love Bridget x

Hi Tom you have been missed but I am so impressed you are doing your kitchen . Elaine must be pleased to see the light at the end of the tunnel too ! It drove me nuts trying to find anything whilst my kitchen was being done but I love it now Onwards upwrds and sideways if necessary ! love Bridget x

Oh Min you must want to shake him till his teeth rattle !! I am sure he knows you are looking out for him but I bet its a case of trying to remain in control when he feels out of his depth . I hope you can talk some sense into him when he is feeling a little better To be honest your post has made me feel a little guilty I am not very good at…[Read more]

Hi Susannah it really does seem unfair that Michael can only have Bendamustine as part of a trial . I have been tol it is one possibility for my next treatment , no trial , I am under UCH London. This postcode lottery for medication makes me so angry and the extra stress it brings we could all do without . I hope Michael is feeling a little better…[Read more]

Hi Susanah,
Bendamustine is a drug that is 40years old and out of license so should be cheap. Bout $500 per complete series.
here is a little bit of background american unfortunatly but interesting nontheless by its content.
I think there is a reluctance to use it because it isnt 'cool' and 'novel'
Who cares what if it works and does the…[Read more]

Hope you enjoyed Beamish Ted, its like a journey back in time, I was there last half term with my grandchildren who are a little to young to apreciate it but it brought back so many memories of childhood.
There now no problem remembering 50 years ago the fact that the decor in my Grannys house was exactly like one in Beamish
But cant remember…[Read more]

What a day, I have had.
I got to the hospital to find him having his 3rd bag of whole blood and no Idea that I had got him in there.
Then I remembered I had forgotten to pack his slippers doh.
I listened to the story of his admission, and a short while later he got dreadful rigors shaking uncontrollably. While the nurse went off to call the Dr…[Read more]

Hi All The Bendamustine is given two weeks on two weeks off, but he takes Thalidomide everyday, he has only had 1 cycle 2 has been stopped until his bloods recover with no medical intervention, once they recover he starts cycle 2. His consultant has told us if he has platelets the trial stops.

It seems to be Velcade and Revlimid all over again…[Read more]

Hi Min Your post reads like a breath of fresh air to me, it made me smile, you sound just like me and Michael. He hates hospital he talks about nothing else but going home before we even get there, and its always my fault when they keep him! Its got to the point now where he says Ill wait a while longer to see if my temp goes down. I love him to…[Read more]

Well Well, wish he was!
Yesterday Peter went for a bag of that clotting stuff and a chat with Dr. He came home and told me that he had to go in on Saturday for two bags of whole blood.
From the time he got home, he was feeling cold. took his temperature and it was a little raised. some time later I took the dogs out and came back to find the…[Read more]

Hi Sally I am glad to hear your dad has begun treatment , fingers crossed he will begin to feel a bit better soon . He will probably still be tired when he is on treatment but he will learn to pace himself . Great that you have been in contact with social services and I am sure they will be a great help The Macmillan nurses are brilliant and very…[Read more]

Hi Russell
My advise would be. Worry when you have something to worry about.
Maybe you have a smouldering kind of MM that has been found early and you can get on with your life for quite some time.
If you have to wait for the results from your bone marrow I imagine you are being treated at a smaller hospital as most of the big ones have…[Read more]

High Susanah
How dare they put Michael at risk because of a trial. If he needs platelets or neutraphils he needs them Full stop.
At what point will they intervene?
I believe the Dr's oath is First do no harm. I think you would do well to remind them of it.
Just as a matter of interest is it a condition of the trial that he has his…[Read more]

Hi
Sorry to hear of Stevens problems here is hoping the radio therapy gets him back on his feet. I can understand how worried you are by the lump too and I am sure they will calm your mind on Tuesday. Good Luck to you both
Peters second transplant is becoming very unpleasant compared to his 1st. In our case we are actually hope full that this…[Read more]

Why is it that 4am is an hour that keeps you awake. i can usualy get to sleep no problem at al but waking at 4am means I am just washed out for the rest of the day whilst my imagination goes into overdrive.
I think we need a 4am posting board so we can swop our demons and put them to bed.
Does everyone have middle of the night insomnia?
Min

Hi Bridget hope you are keeping well. Just back from the hospital Michael still cant have the Bendamustine as his platelets and neutraphils are
still very low, he cannot have anything to help him , platelets or GCSF injections as this is a condition of the trial. The worrying thing is how long do they wait, and what next. So we now have to wait…[Read more]