[DebsParticipant]

Good luck Chris and Lena!

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

Take care
Debs x

[DebsParticipant]

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

[DebsParticipant]

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 people are!)

I still have the neuropathy in my feet and it is a little worse since I stopped taking oromorph. I'm just on gabapentin and nortriptylene….my PCT won't allow me to have pregablin despite us taking it further.

I'll try to drop you an email later but wanted to let you know that I'm thinking of you!

Debs x

[DebsParticipant]

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 with MMUK they can help you with some stuff, but if you do decide to do it, I can pass over all the stuff we create and do….our theme is Glitz and Glamour and if you did that, we could probably give you all of our design work, posters etc if you liked it. I don't see the point of recreating the wheel and lots of people have helped me so far.

Small word of warning…it is quite a big task!!

Take care
Debs x

[DebsParticipant]

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 mum but couldn't do anything else. I'm a bit better now I'm taking paracetamol but will call the hospital if I'm still bad tomorrow- at least the kids will be back at school!
Debs x

[DebsParticipant]

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

[DebsParticipant]

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 I like the idea of just one tablet that totally wipes out the PN.
Debs x

[DebsParticipant]

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 you feel any better, the right drugs can make you almost forget about it. I started on gabapentin and now have that with nortryptalin and morphine and it works a treat. they may change me to pregablin but I hope if they do, it means I'm on that and nothing else!
Give me a shout if you want to know anything more about meds for it. But don't be too proud to take things…you shouldn't suffer with it.

Take care
Debs

P.S popping your raffle prize in the post tomorrow ….well done!

[DebsParticipant]

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

[DebsParticipant]

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 instructions from my husband, family and friends to rest all this week before I make myself ill!!!

To those of you about to go through the SCT, I hope this gives you great hope…it was only 3.5 months ago that I was sat on the bed having my cells back!

Anyway, thank you if you came along or made a donation – it helped make the day a major success

Take care
Debs x

[DebsParticipant]

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

[DebsParticipant]

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

Hope that works for you!
Debs x

[DebsParticipant]

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 hospital visits!! Also speak to MacMillan as they are great about working out what benefits you can get…the Maggie centre in Oxford should be fantastic for you! They were helpful with me and they aren't my nearest one (though they are only 25 minutes away)
Take care and keep smiling!
Debs x

[DebsParticipant]

Hi Dai,
I don't seem to be having any side effects from the revlimid so far – maybe because it is without the dex and cyclo? It is supposedly proven to prolong life and extend remission though, so as long as it doesn't deteriorate my quality of life, I'm happy to go with it and see what happens?!
Hmmm, Pen-y-Ghent…maybe not (did the Yorkshire 3 Peaks for MMUK last year!)…..but then again, I may do the China Wall as I'm hoping to visit my sister in Beijing next Easter!! lol!!
Debs x

[DebsParticipant]

Hi Tina,
Glad to hear you had a lovely time, even if it was hard at times. But good on you for taking up a new sport…next time try not to break a toe hey?!
See you soon
Debs x

[Author]

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