i'm trying to post some photos and failing miserably:-(

Hi Teresa,
Tomorrow! I will try and put new pic on, have to use mother ship computer as I don't know how to do it on very convenient iPad. Hope you are well.
Love Helen

Hi again Judd, in the patient services link on this page, in the bottom left corner is the section on current Myeloma trials, which talks about what is available to patients. There are a few people who have done this trial, I am on myeloma xi trial so haven't experienced this one myself
Take care
Helen

Dear Judd
What a terrible experience! This disease creeps up on people so silently and with little to show until things are going horribly wrong.
Welcome?? to the site. There are many here who will be able to hold your virtual hand and offer help and advice if you need it. Read the back posts and learn as much as possible about the disease and…[Read more]

Hi Eve

I suppose if Slim is still having bloods and platelets it makes sense to keep it in rather than cannulating every time. I hope it doesnt take 4 hours to come out. Mine took about 45 mins to an hour to come out. It is not as horrible as having it put in and such a relief to get it out.

Wendy

Hi Eve,

mine was taken out about a week after I came out of hospital. They would have taken it out on the last day of my stay but there was no doctor available to do it. It was only put in on the day of my admission for the transplant. I think my hospital like them in for as little time as possible because of risk of infection.

Wendy

Hi Helen

Your new cut sounds fabulous and has inspired me to do something with mine as I havent had mine cut for about 12 months (and that was a crew cut in readiness for my transplant!). My hair previously dead straight and fine has grown back thick with ruffles, waves and curls, it really is quite mad looking and I dont know what to do with…[Read more]

Hi All

We seem to have moved away from the 3 litres a day post on to holidays,
a much better topic in my view! I agree with Dai, going on holidays especially whilst on treatment can be tricky and difficult. Its all about confidence building and Tom, I think you're right too, little and often to start with.

The first time I went away for the…[Read more]

Ha ha Eve! You'll have to get your clippers at him in a few months then. >:-(
While i was away my hair was ok then seemed to suddenly grow lots.! I was looking like a poodle last week, the fine curls were just too grey and unmanageable, so a bit of bleach and toner yesterday, and a short choppy cut and here I am, a blonde:-) its strange to see,…[Read more]

Dear Angie
This is the very hardest part of loving someone isn't it? As Tom has said, you who watch have to try to keep things together. I shall be thinking about you, hope your mum improves as the day wears on.
Love Helen

Well, I've been to the hairdresser again. First proper cut in a year, almost to the day. All poodle like curls consigned to the salon floor and very short 'do' again. Quite liberating. Only difference this time is that it's blonde:-) I've never been a blonde before so that's a bit of a novelty to get used to.
Still got horrible dry skin and lots…[Read more]

Hi Vicki
SCT is straightforward for some and difficult for others, mine was a long hard road and I thought that I'd never feel better. But 10 months later I'm ok and I'd do it again if I thought it would buy more time. I did get very fed up with all the fussing and tended to growl at anyone who was only trying to help, or was worried about me.…[Read more]

Hello Paul
As Carol says, how are you getting on, you seem to have had a tough time recently.
Love Helen

Hi Eve
I don't know much about this and perhaps the best person to speak to is the nurse specialist at Kings, but I think it is not uncommon for a few people to take a long time for their new cells to engraft and consistantly produce the full range of normal blood cells. Are Slims platelets and neutrophils going up and then down a bit? He needs…[Read more]

Dear Siobhan
I talked to your mum mostly in the early hours of the night, I'd just had my transplant and felt very dreadful and down. She was in a lot of pain I think but gave me that cosy feeling of not being alone, not being a burden. You are a lucky woman to have grown up in a home with such an altruistic, generous and kind mother. While I am…[Read more]

I am so sorry to hear about Bridget, she was such a support to me in the dark hours
Helen

Hi Ian

I am really sorry to hear that your mini allo has failed, I cant understand how this happened given your blood tests were so good and that you had achieved 100% donor chimerism. You must be pretty pissed off. It goes to show that not enough is known yet about this procedure and whether it is worth the risk.

Anyway I hope the Velcade…[Read more]

Hi girls
Just thought I'd add my 10 pence worth here. I've been on revlimid for some time and my sense of taste is poor now. Lots of things taste wrong and a few even burn my mouth, alcohol feels like it has chile in it and all citrus except orange are painful to taste. Lamb has a weird taste and spiced food is also uncomfortable after a couple…[Read more]

Hi Wendy
Well done for the run, not something I'm likely to ever do so I take my hat off to you. And a brilliant total for the charity
Love Helen

Hi Keith and all
I too am just on an aspirin a day with the revlimid, though I did take the heparin injections with me to NZ for the long haul flight, just as a belt and braces approach which seemed to do the trick. Revlimid makes me tired too and everything still tastes funny, but it's working so not complaining:-)
I hope you get on ok with…[Read more]