Hi Phil

It must have been so traumatic for you all. Living with Myeloma is enough on it's own, it must ave been a dreadful period. I found losing my Mum the most dreadful thing. How did your wife cope with all this?
I have started using a stress release CD which is quite helpful but I suppose we just have to accept it all and get on with…[Read more]

Hi Eve and everyone – I'm here! 🙂

Thanks so much for all your replies. It has been really helpful and as Tom says – stress is an individual thing. I just can't seem to think of it all logically at the moment – maybe in time. I found just screaming a little release and crying of course. I suppose there is a period of time during which you…[Read more]

Hi Jean

Maybe we shall try counselling as this is a hard thing to get through on your own. Or maybe singing like Tom does. I don't think my dogs would be too pleased if I screamed at them.

When you are on chemo, do you go out as usual amongst people and hope for the best, wear a mask or just stay indoors away from everyone? I have only…[Read more]

Thanks Tom

The singing sounds cool. What is really hard are the steroids and the strange moods. You just want the normal person back. Hopefully when we are through this it may be nearly normal again.

Upwards & Onwards Singing.
Love Charlie & Mary 🙂

Thanks Jean

I think if I went to counselling, I would cry all the way through it at the moment. A friend of mine swims and she says that helps. Maybe a massage would be good. Hope Frank's SCT goes well. Will you be near and able to visit? I think I shall try Reiki or reflexology. Anything that helps.

Love Mary >:-(

Hi Eve

Sorry, I didn't realise you were supposed to go onto another thread. I shall try that, I did wonder. Nightmare, maybe I shall get it right next time. Thanks. I don't think I am thinking straight at the moment.
Love Mary & Charlie

Hi Eve

Hope Velcade does not have side effects like the previous drugs. Charlie can't have Thalidomide now because of the clots/PE's and we have to decide whether to stay with the trials or have the treatment done on the Island (which would be much easier and less expensive).

Fingers crossed and everything else crosed that it all goes well…[Read more]

Hi Tom

Wish we were drug free now. Hope it happens soon. Can't wait.
We see what will happen tomorrow at Southampton, which direction they choose to take with Charlie next.

Upwards and onwards and a few glasses of wine! :-/

Love Mary

Hi Vicki & Colin

When Colin had the infections, did he have the emergency antibiotics? They told us, that if Charlie feels unwell just get him to the hospital. Is this what you did?

We see the consultant tomorrow at Southampton to decide which way to go next. He can't have the Thalidomide because of the clots.

Will let you know.…[Read more]

Hi Tom

We are fine at the moment as Charlie is not on any medication. We saw the consultant on the Island last week, he says he can treat us here but Southampton want to talk to Charlie to carry on with the trials, so we go there on Tuesday and decide what to do. Sounds like it will be Velcade now. Whatever that means.

It is hard trying to…[Read more]

Hi Vicki & Colin

It is so hard to be strong. I sometimes feel that I am crumbling. But – deep breath. Charlie is home from hospital at the moment. I worry more than when he was in. Keeping an eye on him all the time, making sure he does not do too much. Nightmare. I am not sure what he is and is not supposed to be doing. This is all so…[Read more]

I have just told Charlie what you said and we are looking forward to the good times, as you say, just got to get through the bad. Thankk goodness you are there – an inspiration. 😀
Love charlie & Mary

Thanks os much Tom.
Charlie is out of hospital now, I just hope he stays here for a while. We are so trying but it is so hard but Upwards & Onwards.
Just need to be like you.

Love Mary x

Hi Nicola

Did the treatment cause the atrial fibrillation or was it there before?
They say we are staying on trials but I do not want to do so if the drugs are going to have such a dreadful affect that he dies sooner. I really don't know what to think at the moment. Charlie has been off the drugs now for 2 weeks, since he has been in hospital…[Read more]

Hi Tom

Roll on remission!!!! Upwards & Onwards. :-/

Love Mary

Hi Mike

What is Velcade? They are thinking of that now. Isn't it all so confusing?

Love Mary

Hi Mike

They have now decided that it is an irregular heartbeat, not an embolism that has caused all this. Nightmare! The cardiologist is going to check this out, maybe in hospital but maybe as an outpatient. What do I do if it happens again at home? Will he be able to stay on the trials?

I am so confused.

Love Mary

Thanks Michele

They are now talking about Revamid instead of Thalidomide, apparently it was too uch Thalidomide – 150 and this has caused the PE's. It is all so confusing. Charlie has been off all the drugs for a week now and it is wonderful, he is back to normal. I know it is all going to start again, they are talking about either 3 or 5…[Read more]