Oh Gill,
How awful to have that put on you too…I hope so much that they've got it wrong and that you don't have to deal with anything more than what you're already coping with.
Love
Debs x

Hi Dai
Funny you say that oramorph doesn't work at all, as when my neuropathy first got bad, it really worked! In fact it turned my life round for the week before my SCT. But ever since, it hasn't seemed to work in the same way. It does work a little, I think, and I tend to take it to help at bedtime – not sure whether it just helps me sleep…[Read more]

Bridget,

Hope you're doing ok and that the pain is coming under some sort of control – when is your radiotherapy? Make sure you let them help you if that doesn't help. Pain is horrid and if they're offering alternatives you should take them….I'm going to try to get hold of our local macmillan re my neuropathy after your…[Read more]

Dear Min,
I really don't know what to say except that your post has brought a tear to my eyes and I am just so so sorry about Peter.
With all my thoughts and lots of love
Debs x

Thanks everyone for your responses….I've been 3 months off the velcade so have this horrid feeling this could be a permanent gift of getting a short term remission 🙁

I will definitely try to get referred to Macmillan for pain support…I'm hoping for something less 'druggy' as the gabapentin isn't doing much and nor is the…[Read more]

Hi,

I don't know if you ever "know" how to act. My husband is 37 and was diagnosed at 30. It was caught by accident and was fairly good the past few years. This year has been SO different! He has been quite ill and we've actually started talking about death. I try and do the good and the bad. I'll tell him how things will get better and they…[Read more]

Hi Paul.
Welcome. I'm sure it was tough to hear your news. But the others are right this is a great place to get advice, support, friendship and vent. My husband is 37 and was diagnosed at 30. I have just started a Support Group in Burton because of how wonderful Myeloma UK has been. I wanted to give back some help. It does get easier after some…[Read more]

Hi Russell,

So sorry that you've had to come and join us on here but hopefully IF you get the official MM diagnosis, you can come to lean on all of us for help and support. I was 34 when I was diagnosed 2 years ago with smouldering myeloma. I then started treatment in 2010 and had my transplant just over a month ago.
It is tough going and you…[Read more]

Oh lovely Bridget,
I'm so sorry to hear that your instincts were right…..life is so unfair and you so don't deserve this.But as always, you are handling it with an inspirational grace and humour and that is a lesson to all of us.
Good luck with your appt next week – I hope they get a great concoction that beats the b*****d!!!
Lots of…[Read more]

Hi Keith,
I think I've missed something with you (haven't really been on here since my SCT in July!) but I'm glad to hear that you're home where you belong. Hope that you can stay there and stay well…..that sea air should help no end!
All the best
Debs x

Hi All,

Sorry we have not been here in a while?things have been a tad busy. Thank you all for your kind and encouraging words! David has now completed his 4th cycle of Velcade and by the look of it will be doing an other 4 before preparing for SCT?

The last couple of weeks have been difficult for David. His pain levels in his back have…[Read more]

Sarah,
I am so so sorry to hear that Gordon has passed away. Wishing you much strength in the coming days, weeks and months.
Thinking of you
Debs x

Hi Helen,
Haven't been on here for ages, but spotted you're due to go in tomorrow for your SCT and wanted to wish you all the best. I came out just over a week ago from mine (Day 25 at present!).
I was recommended the icecubes but was too embarrassed to ask for them as my consultant was dismissive. I got lots of ulcers in my throat which were…[Read more]

Hi Sarah

I was so saddened when i read your post..my heart goes out to you and your family at this sad time.

with much love michelle x x

Thanks Keith!
Like you, I've lost a little weight since the steroids stopped and have this feeling that I may lose a fair bit more in hospital….they brought my dinner in earlier….quiche that was half uncooked and oven chips, again half uncooked (I don't like them at the best of times!). And while I asked for jelly, I got some sort of trifle.…[Read more]

Hey Lorraine,
What was the mouthwash called? Need to ask for it NOW!!!
Thanks
Debs x

Hi John,

I was in your position when I was diagnosed in July 2009. I gave in to the treatment option in November 2010 but I have to say, I wonder if I gave in too soon. It has been quite hard so if you don't have to do it, don't push for it. They will do it when they think they need to.

I'm currently in hospital having my SCT….hoping to…[Read more]

Oh it's definitely not just you guys! Loads of us (esp women it seems) have put on weight….I've put on nearly 2 stone and gone up one and a half dress sizes. Very depressing. But a little of it has dropped off since I came off the steroids in anticipation of my SCT on Monday. And I hope the rest will come off with the SCT itself….surely 2…[Read more]