Hi there.
Just couldn't help but come in on the alcohol question 🙂
My consultant said when I was on revlimid that I could have a couple of drinks but that I probably wouldn't want to!! Boy was she right…couldn't even face champagne! Then when the revlimid stopped working (my pp had come down from over 50 to 28), I went onto revlimid….I…[Read more]

Hi Kirsty

Welcome! Not that you want to be here. There are lots of us here to support you….I don't come on too often as I'm just post transplant and need a bit of a break occasionally whilst in remission.

I was 34 when I was diagnosed with smouldering myeloma, and then started treatment in 2010, just over a year after initial diagnosis. I…[Read more]

Glad to hear that you're getting better…and enjoying the shorter look! I have to say, I was v positive until I went rollerskating with my 7 year old on Friday and one of her friends told her to 'give your dad a drink'…..hmmm, Nick was nowhere to be seen which just meant that he thought I was a bloke! Now, do I take it seriously?!

Thanks so…[Read more]

Ah thanks Helen. I'm sorry that I haven't been on here more but what with the kids, redoing the bedroom and trying to organise the ball, life's been so hectic….and perhaps there has been a small part of me trying not to let myself become too bogged down with having myeloma. Selfish I know.

My hair is staying short for a while….hopefully…[Read more]

Hi Bridget

I'm sorry to have read this….and sorry I haven't been on here for so long to have seen what you are going through. You are always such a strength to everyone, and such an inspiration….it is not fair that you are having to go through this.

I will keep hoping and praying that they come up with a new option for you, or like…[Read more]

Good luck Chris and Lena!

Sounds like you've got an exciting time ahead of you 🙂

Take care
Debs x

Hi Amelie

Sorry to hear about John needing a second SCT but sure it will all be fine!

Just a thought, but what about those Callipo ice pots that are full of lots of little flavoured ice balls? Think it's callipo or calypso or something???? Might be a bit more pleasant?

Debs x

HI Kay,

I am so sorry that you're having to think about all of this so soon after transplant. I feel terrible that I haven't emailed you recently. I hope that your results on Monday went ok …have you been put on Revlimid…I'm on that and so far things are ok (although I may ask to come off it as I seem to get permanently ill….not how most…[Read more]

Hi Nicola,

I'm sorry to hear about your dad being in so much pain and feeling so down about it. But it sounds like you're doing an amazing job in helping him to stay positive.

I haven't been on here much recently as I haven't been too well, and now I am busy….trying to organise my first charity ball!! I'm no expert on it and if you speak…[Read more]

Thanks everyone. Had a terrible night and morning. My poor 5 & 7 year olds had to get up, dressed and make their own breakfast! They then played until their dad phoned from conference at midday, found out I was ill and came home to look after us all. Thank god we brought them up to be independent and thank god I married nick!! Felt like such a bad…[Read more]

Gina
I am so sorry to hear about your mum – I've been following your posts. I will be thinking of you and your family lots and hope that you have many many lovely memories of her. Cry, be strong… Whatever works for you. And we're all here for you.
Debs xx

Hi guys
Just a note to say I was prescribed pregablin or lyrica but my GP wouldn't prescribe it as our local PCT has blacklisted it!! We are in the process of appealing it but as you can imagine it is a long process. I'm doing fairly well on gapapentin and nortriptylin and even trying to get rid of the oromorph which I've become dependent on. But…[Read more]

Hi Wendy
I had my last dose of velcade in June and whilst I'd already got the PN at the time (the reason why I stopped) I have to say that it got much worse afterwards…..it seems a long time after for it to develop but I don't know whether or not that is possible. I know how horrid it is to have it…it feels v dehabilitating but if it makes…[Read more]

Hi Keith,
No mine was an auto too, but Gareth Morgan was the one who said he thought it was GVHD….apparently you can get it a bit with auto's too?

Debs x

Hi everyone

I just wanted to say thank you to those of you who supported this event. I met a couple of you at the sale which was really lovely! The day was heaving which was amazing.

Anyway, I wanted to let you know that we have made at least £1700 from the event – it made all the hard work well worth it…..now I am under strict…[Read more]

Hi David and Welcome

Great to have you on here…I always think it is really good when we have the 'good news' stories on the site….I did ask for a discussion category for this but it hasn't happened sadly.

Glad to hear that you are doing well post SCT and I hope that your remission is long lasting

Take care
Debs x

Sorry Sarah,
Got that totally wrong!
It is http://debsjourneywithmyeloma.wordpress.com/

Hope that works for you!
Debs x

Hi Sarah,
Yes you are normally able to get a blue badge….answer the questions thinking about his WORST days…..it has been a godsend for me, especially when I was on velcade and post SCT when every few steps makes a difference. It also saves you quite a lot on parking as it is free in a lot of places – makes up for all the petrol spent on…[Read more]