Oddly, the biggest thing we have had to protect our children from us other people’s reactions, especially to the word cancer. Ours and older generations feel very emotional about it. We nearly all react negatively and fearfully to it. Kids don’t, or won’t if you lead the way.
For what it’s worth my advice is to stay factual, give as much…[Read more]

Hi
when my husband was diagnosed 2 years ago at 46 our children were 10 and 7. He was diagnosed in a rather dramatic fashion when he snapped his femur. Clearly we had to tell them something.
They had previously read the children’s book “Germs” featuring Marvellous Myrtle and her immune system so knew all about the soldiers of the immune system…[Read more]

Hi

In the same boat, but it’s the PP count not FLC that’s rising. We’re waiting for the 2nd test to see how quickly.
I’ve been absolutely gutted by this too. I keep imagining the worst while Philip just focuses on what he has to do next.
It’s a bitch. It’s unfair. But while we have hope we have to put our big girl pants on and get back on…[Read more]

Hi

I didn’t realise you were in Deal. My aunt and uncle live there. Our children are visiting for a few days in the summer and live going to play by the sea.

I’m sure with your experience so far you won’t be content to trust they do it right, but I hope they do.

Hi Queen Eve

Myeloma sucks doesn’t it!
We had the routine appt yesterday with the consultant – unfortunately it’s detectable again, so we’re waiting to see how quickly the numbers go up before deciding what to do. Before Velcade it went up quite quickly so we’re hoping that at least velcade is pushing back a wee bit so that it slows down.…[Read more]

Dear Eve,

Please can you clone yourself at least 2x, then send one clone round all the hospitals in the country teaching the doctors, whilst the other doubles up for you so you can rest from time to time.

I take my hat off and bow deeply to you, and hope that if and when necessary I shall be as good an advocate and carer for my husband as you…[Read more]

Hi Victoria

You and your family have just stepped through the looking glass. It’s not a place any of us want to be. (it’s my husband who has MM not me). Yes, it’s frightening and scary, but you can adjust to the new reality. It will take time, but give yourself permission to cry. It is a form of grieving.

One thing i read recently was…[Read more]

Different drugs, different doses. Just because you get more cyclo orally doesn’t make that a high dose and the melphalan a low dose. 300ml of vodka is a lot more potent than 300ml of beer!

I don’t think you can get an answer to your question. That’s the delight of MM. You can ask averages till your blue in the face, but historic data is just…[Read more]

Hi
My husband – who is the one with MM had a cold and it took him forever to get over it. I wonder whether it just takes longer these days.

Hi Terry

can you see if you can repost your post (great use of english there fiona!) without all the styling / font size instructions etc – it’s impossible to read – or is it just my computer failing to read it properly?

Hello Dusk

I am sorry to hear of your problems you’ve had along the way. And it’s such a shame any of the MMers hvae to suffer at all.

I would endorse what you have said. I find it very strange to have friends and colleagues tell me and my husband that we are amazing. We’re not, we’re just trying to live with some degree of honesty and…[Read more]

I suspect it’s the steroids but speak to your doctors. X

We have been fortunate to have had the benefit of Prof Morgan’s expertise first hand. We heard a while ago from our primary consultant that he is leaving, and at the time felt a bit winded by it and rather thought “how dare he leave us!!”.

If it were up to me I would nail Prof Morgan’s feet to the floor and take away his passport (!) but I…[Read more]

Hello

The complicated answer is yes and no. Yes, it works for some, no it doesn’t work for others. That’s one of the horrible things about MM. But on the whole it is a good drug. If your brother is worried that he has not been offered chemo with it, then perhaps a call to his consultant to find out his/her thinking would set his, and your,…[Read more]

Hi

Only you know your family, but I wouldn’t worry too much about being realistic. Perhaps they too know in their hearts that trips aren’t possible, but need to pretend they are to help themselves. I knew someone who was planning her next holiday from her hospice bed as that was her way of coping.
Good luck xx

I’m so sorry to hear your news. I am afraid I can’t answer your question, though from experience as a probate lawyer, bereaved families often tell me that the doctors’ estimates are often wrong, and people tend to go when they’re ready.
I would say take the time to be with her when she’s able to enjoy your company, you will both benefit. X

I’d love to have had a credit card sized information card to give to people who have asked about myeloma so I didn’t have to keep repeating myself.

Hi Flitterfly, i thought i would just check in to see how you are doing? I hope you’re managing and had a good Christmas together, and that things don’t look so bleak from here now. x