[sandydeliParticipant]

Hi Jan no urine sample it was just on my blood results. I’m not sure what the levels were I was’nt really listening as it was a shock and doc was saying how do I feel ? I said well I knew it would come back but not so soon 4 years since SCT. He was saying things like he was so sorry. My old doc was so much better said it how it was did everything himself this ones young and very nice but a bit wet if you know what I mean ?

[sandydeliParticipant]

Very sorry to hear this news, my thoughts with Dai's family x

[sandydeliParticipant]

My doctor told me as long as the pain goes away not to worry ?? Mind you that's easier said than done eh !!!

[sandydeliParticipant]

Hi Mandy yes I get bone pain when I go to bed its weirded as I'm fine during the day !!!! I take a couple of paracetamols but it's nothing like the pain I had before my SCT thank god !!!!
I'm 2 years post SCT only on bone strengthener every 2 months now I'm 57 and making the most of remission.
Take care Sandra.

[sandydeliParticipant]

Hi Wendy hope your nearly at the end of your horse tablets and feeling a lot better.
I liked your last blog so much feeling in it you and Jet have the knack of putting into words how I'm feeling xxx Sandra xxx

[sandydeliParticipant]

Tom I'm sure it is thier loss mate !!! Can't believe you didn't get on !!! When I watch it these days you've got to be foreign, disable or nuts !!!! 🙁
Do you not fancy the chase ????
Sandra x

[sandydeliParticipant]

Hello again Ann Jan has said just what I was thinking !!!!! I thought you would have been on cemo tablets now??? Then as she says you get a big dose just before your transplant, when I'm afraid your hair will start to come out 🙁 but the good news is it comes back curly 🙂
As for my pain I just take pain killers when it's really bad. It's true every case is different. I was worried sick about my transplant but it wasn't that bad a few days feeling and being sick and really bad runs for about 2 weeks but hey we can put up with that if it's going to make us feel better in the end !!!!
Any way you take care and and if you'v any more question's just ask away.
Sandra x

[sandydeliParticipant]

Hi Ann just been reading all your messages what a lot lol, so I thought I'd just say hello too 🙂
I was diagnosed 2 years gone March after nearly a year of rib back and hip pain going back and forward to doctors being fob'd off with muscle pain and in the end rhumatisim !!!!! Till in the end a blood result came back and the big shock MM witch like you I'd never heard of. Got told later a normal GP will come into contact with myeloma maybe once in their life time so it is hard to diagnose ????
Anyway started right away on thalidomide steroids and cemo tablets then after 5 months doc said my pp had come down enough to have my stem cell transplant. I had that in the October over at Newcastle as I live in the lake district it was a long way from home so didn't get many visitors but after the first week you can't be bothered with anyone really, once your ???? Can't remember the name starts going up you can go home witch is brill nothing like your own bed.
You feel crap for a few weeks tired and You'v to keep away from any infections as your immune system's none exsitent, after that the only problem I had was itchy spots .
Now I'm a year and a half in remission had a glitch last year with a broken hip but didn't know how I'd done it and it healed itself thank god didn't fancy a hip operation !!!! A month ago had a scare thinking MM was back as I had pain in my back and ribs but then a rash appear 'd and relised it was shingles not nice !!!!
At the moment I'm ok had my 57 birthday last week looking forward to going to Harrogate spring flower show on Saturday just take each day as it comes.
Gave up work as I couldn't do it any more and why kill myself as my life is going to be shorter ???? Luckily I get DLA so manage on that money.
Sorry I seam to be going on and on so I'll finish now and say bye for now.
Sandra.

[sandydeliParticipant]

Hi wow !!!!! so glad to hear some good news and give people hope 🙂
Good luck with your move.
Sandra.

[sandydeliParticipant]

Hi Ner sorry to hear about your mum sounded really bad !!! I was the same starting with rib pain, back, then finally my left hip and as your mum the doctor kept saying it was muscular !!!!! Anyway eventually after nearly a year a blood test came back and the bomb shell news myeloma !!!!
Started on cemo thalidomide and steroids and eventually my stem cell transplant Sep. 2011 and now I'm in remision but still get pains and tiered.
I'm 57 this year as my job was very physical I have not or wanted to go back to it. So thank god for DLA witch is pain in the bum every time you have to fill forms in.
I'm sorry I can't help you on your question about the 0 myeloma but I'm sure someone on here will, but if you need any help on other things I might be able to help.
Sandra 🙂

[sandydeliParticipant]

Hi Tom just saw this discuss'ion and just thought I'd put my two peneth in lol
It's two years yesterday that I was diagnosed big big shock !!!!! Anyway two years on after all the treatment sct ect I'm doing ok'ish !!!! But I'v not worked since I couldn't like you I had a six start on my feet all day cutting bacon I struggled for a whole year while the doctors couldn't discover what was wrong with me !!!!! Then I ended up on crutches as my hip killed me !!!!!
Anyway I applied for dls and was astounded that I got it first time !!!!! Had a very good man from age concern help fill it in thank god as it's so hard oh and you have to do the same thing every year !!!!! So keep the old one if you do ever get it !!!!
At first I felt really guilty getting this money but as all my friends point out I'v worked all my life I'm 57 this April payed into state pension that I probably will never get as They'v now put the age up to 67 for retirement so why should'nt I have a little money and it's not a lot believe me but enough to get by and have the odd trips away while I can because it will come back !!!!!!
So Tom you appeal get help filling the forms in exaggerate tell it as if it's your worst day you enjoy the rest of your life and that's not killing yourself at some job that will still go on long after You'v gone !!!!!!
Sorry to be so brutal but we've only got this one life so have what's left of it having fun and time with your family.
Take care Sandra.

[sandydeliParticipant]

Hi Lorry I see you say You'v had shingle pain for 6 months !!!!!! I'v just come down with shingles this week and the pain was horriable at first I thought it was my myeloma back but then realised it was a different pain more like a stabbing !!! Anyway now the rash has come out and I'm on anti viral tablets 5 times a day and pain killers feeling a little better.
I was wondering if any one else had got shingles since their SCT mine was Oct, 2011 I'm 57 this April.
Sorry cant help you on the cemo fog not had anything like that well at least I don't think so lol,
Sandra.

[sandydeliParticipant]

Hi Helen glad to hear your news I think I'm a year behind you and I'm feeling good !!! Think I'm under the same prof Mr. Jackson ??? And yes he is a charmer.
Hope your caugh disappear's soon and you have a great Xmas and new year xxx
All the best Sandra x

[sandydeliParticipant]

Hi Wendy sorry to hear You'v got pain, as you know I was getting pain in my hip when I saw you in the summer, and after X-ray cat scan then MRI under mr. Orr the orthapedic consultant they said I'd a fractured hip !!!!!! No wonder I was in pain ???
Anyway he said it was healing nicely and there was nothing to do oh apart from to start using my stick again witch I must admit helped.
I'm still getting pains in my back it comes and goes but prof.Jackson did say as long as it goes your ok !!!!
I'v got my infusion on Thursday and of course blood test so hopefully they will be ok again.
Please let me know how you get on and try not to worry Hun xxx
Sandra xxx

[sandydeliParticipant]

Hi Cathy it's nearly a year since my transplant, so my memories a bit vague but I remember being sick on the sixth day after transplant and feeling yuck for the next few days but after that I started to feel better. The only thing I could face to eat was a banana and rich tea biscuit's. Wet wipes for the toilet we'r a must and fizzy water to drink. I was let home after 16 days and that was the best medicean nothing like your own bed !!
I hope this is some help to you and your husband gets better soon.
Sandra.

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