Hello Craig and Etta
Glad to hear Etta is getting on ok, hope the appointments come through quickly and the SCT goes smoothly
Helen

Hello Eve
I'll be thinking about you this week, hope it all goes smoothly.
Love Helen

Hello Gail
Welcome:-/ to the site, I'm sure a carer will come along soon to talk to you. I'm another sufferer and can only comment from my own experience. You don't say if your husband was ill before his diagnosis, but even if he was, 3 months is a very short time to get your head round the impact of developing life changing disease and how it…[Read more]

Hi Andy
What do you mean ' not commenting on hair or style' I think we should see what 'used' to be there, in fact all you chaps could do that! Or do you all fancy roles in eastenders:-)
Love Helen

Hi Teresa
So what colour was it before the sudden grey? I have a friend who did likewise and went from brunette to white at 35, surprising for us all, she too has stayed with it. I'm still undecided, it is temping to do nothing and leave it, but we'll see. I feel I want to go back to work, I wasn't ready to retire when I got ill and still think…[Read more]

Hi Andy
Strange how your pps aren't behaving, there's individuality for you, I was told that a plateau is sometimes what they look for before sct, so hopefully as you are feeling better and the Rev and dex get to work things will improve. Keep in touch.
Love Helen

Hello Mavis
Hope you are a bit better today and not getting breathless again, if you are and your ankles are still swollen it might be an idea to to speak to the 24/7 haematology ward about this as it could get worse, the dexamethasone and other drugs have powerful properties and you might need careful watching in case of cumulative effect.…[Read more]

Thank you very much Wendy, you wouldn't believe the amount stuff and time it takes to make it stick up like that!!
probably why my scalp is still so itchy, but hey got to give it a go, am back to work in 8 weeks and need to look convincing:-)
am now going to try to attach knitwear photo

Hello Teresa
New photo, very nice. How is Peter? And what will you do at the pub (other than drink:-) ) while you are away?
I don't know if chit chat is allowed or not! It says you can talk about anything – so i do, after all sometimes a normal sort of conversation is a welcome one when the going gets tough, sometimes too it is easier to…[Read more]

Hi Ann
I suggest you ring haematology ward and ask for a talk through for each medicine from one of the nurses or on call doctors. The doses can be started at different levels and then increased as time goes on in some places, so we might all have had different starting doses. For example I took 40 mg dex daily on days 1-4 and12-15 of 28 days…[Read more]

Dear Bridget
These infections are a constant nuisance and soooo draining, I'm hoping your next clinic visit goes ok and you get some quality time back soon. How are the family doing? Running round after you I hope? Keep your chin up lady.
Love Helen 🙂

Hi Tina and Dai
He said it all:-) I totally agree, it seems daunting at the moment but don't let it get you down, avoid the people who only give you sad eyes, do something nice, for yourself or your nearest and dearest every day, make it worthwhile. I have found the people here quite uplifting when I've felt 'off it', which has helped me deal…[Read more]

Ha ha Teresa , not likely, this jumper is the passport to the baby! Niece has said we all have to knit something before we're allowed to see it. She was joking but we all have taken her seriously and I and all my sisters are competing! 😀 I'll try and attach a photo but I can't do it on the iPad for some reason
Love Helen

Hello Bridget
I'm wondering how you are at the minute and if you feel like catching up. I've missed your posts.
Love Helen

Hi Andy
I do hope that Friday is positive for you, keep us posted.
Love Helen

Hello Jacqui
Good luck with the transplant, It's over 8 months since I had mine and I'm off to New Zealand next week – something I thought would never be possible a year ago.
Love Helen

Hi Teresa
It's good to hear that Peter is dictating the treatment plan, I'm all for autonomy, but it must be so so difficult for those of you who watch and wonder. I can't imagine how I'd feel, if the boot were on the other foot. I think the secret is to try not to worry and enjoy the time as much as possible, my husband is beginning to realise…[Read more]

Hi Tina
I swear by peppermint tea but it's not always enough, I need plenty of fibre with the tablets:-P and it's difficult when you don't always feel like eating.
Love Helen

Hi Pete
Good luck with all the tablets, there is lots on here about the tablets, spreadsheets, yoghurt to mix them with, and of course when you are wide awake at 3am because of the dexamethasone, there is often someone here to talk to. 🙂
Love
Helen

Dear Andy
Hope the revlimid works for you. I'm just finishing my 6th maintenance cycle of it and am still in remission with a good blood picture.:-D Love Helen