Dera Maureen,
I'm so sorry about what you are both going through. It must be such a challenge to figure out what Ian might actually want for his birthday given his constraints. Perhaps for the MRSA to go away…..
I'm so glad Ian appears to be getting thoughtful care.
Can Ian play movies on a laptop or read stuff he likes? Music? Is he a…[Read more]

Dear Phoebe,
I can understand you not telling the family yet. Your husband may remain asyptomatic. I hope that your children will gain strength from how you've both dealt with adversity. It's a great privilege to be a parent – today I was able to speak with one of my sons on the phone. I've only seen him a few times in the last few years because…[Read more]

Dear Susannah,
Love and hugs to you from Eva.

Dear Phoebe,
What a incredible story….. And how kind of you to think of us and to remind us of meningitis. It's also astounding that your husband has been able to accept vast physical challenges in spite of his amputations. He truly is behaving in a way that's deeply inspirational.
I am glad that he had so many years before his illnesss got…[Read more]

Dear Maureen,
How often and for how long can you see Ian?
Have the rehab people gotten any expectations of the different ways in which Ian might become more mobile?
I wonder whether in time, someone could call at your place daily and assist with rehab.
Best,
Eva

Dear Sue,
Words are inadequate – we are thinking of your terrible loss.
Eva

Hi Dai,
So pleased results were kind of stable. The wait was really awful.
At my second last visit in hospital I was told things would be prepared beforehand so it would be faster – this was in Inverness – and yet, I also had to wait for three hours. The nurses were nice though and I was given a sandwich.
Because of my stage in the dex cycle, I…[Read more]

Dear Clair,
There are other drugs and even more concentrated treatments such as VD-Pace if things don't work out at first. Feel free to call Ellen the myeloma nurse on this website – she's excellent.

Very best to you and Dad,
Eva

Dear Maureen,
Best to you and Ian.
Since the myeloma treatment is oral at the moment and Ian is in hospital for rehab, it seems odd to me that some accommodation can't be reached with the insurance company. The person looking after rehab might not even be a myeloma doc. Sometimes it requires a 'team effort' to treat someone. I know that there…[Read more]

Dear Carryanne,
I've had to travel from Scotland to London for a new phase of my treatment. I'll be keeping a low profile as I'm using someone else's laptop. I'm certainly thinking of you,
Eva

Dear Emma,
Hi – this is Eva. Hope you don't mind me asking, but I couldn't fully understand what you meant by your mum 'not being able to accept overnight care from an agency.' I'm not suggesting she should be able to, I just want to be able to see things more clearly.

Theoretically, hospitals can ask someone to leave, but sometimes if the…[Read more]

Dear Carryanne,
First of all welcome to the site – and I'm sorry that you're ill. It's good though that you are receiving treatment.

The medication affects everyone differently so we can't predict exactly how you will react. Most people feel tired and need to rest a lot.

– The C in CDT is Cyclophosphamide and it can make you feel as if you…[Read more]

Dear Sal,
I'm really sorry to hear what you've gone through. It was thoughtful of you to let us know what happened. I hope you will be able to get to the stage where the memory of recent events can begin to recede and you can remember your father as he was throughout the years.
Eva

Der Maureen,
I'm so happy to hear that Ian is regaining some movement and that he can be treated. Hopefully you will both be able to feel a little more relaxed after the nightmare situation that you've been through.
Best,
Eva

Dear Dai,
So glad the bloods aren't bad. It's awful waiting, isn't it? I've just had a bizarre situation where I waited for about ten days expecting results and then I found out that a nurse at the local clinic did not send my bloods off to London even though I stressed how important it was. My husband and I got more and more nervous as the day…[Read more]

Hi Sharon,
I had tremors after a couple of cycles of CDT, but I thought that the shakes came from the steroids rather than the Thal. I guess I can't be sure, though a year ago when I was on Thal alone my I saw no evidence of trembling. When I'm on 100mg or more of Thalidomide a day, I feel dizzy and I tend to drop things. Also, an hour after I…[Read more]

Hi Tom,
Yes, anything that's like a 'flow' activity where we can lose ourselves for a while is very important in order to relax.
I read your other posting. Can your myeloma be tracked via bone marrow biopsy?
best,
Eva

Yes, me too. My voice went croaky. It's never really come back to normal but it's less hoarse when I'm not on steroids.
Eva

Dear Tom,
The beginning of a new stage treatment is such a milestone…. Waiting for it must be difficult. My treatment began on the same day as diagnosis, so I had no time to think about it.
UCH sounds really good. I like the fact they're taking care over every bit of the process. I'm impressed by your commitment to mindfulness. I hope you can…[Read more]

Dear Jenny,
I haven't had Revlimid, but I've had Thalidomide which is a drug that's got similarities with Revlimid. Also I've had dexamethasone and Cyclophosphamide at the same time. Unfortunately, the side effects that you describe sound very plausible, especially once you've reached the third cycle. I'm sorry that you're going through this.…[Read more]