[VickiParticipant]

Hi Tom,

Wishing you all the luck in the world, hope you are feeling a bit better

Vicki and Colin x

[VickiParticipant]

Helen,

That's never tedious:-) I often wonder whether its better to have medical knowledge or not….you now what's going on, but is that good or bad? Hope you are doing ok….

Hi Anthony, I am always wondering how my partner Colin's myeloma started, was it before he had shingles or after? He had shingles in January 2011 and was diagnosed with mm October 2011 like you after severe back pain, not tougher by pain killers. Trouble with me is that I am always looking for a solution, and get frustrated as I like to make things better, and can't in this case. Well except for keeping the house going, and doing good food and being good company (well I think so anyway!). You're right Anthony, a great forum and lots of support. Keep your chin up and keep going 🙂

Vicki and Colin x

[VickiParticipant]

Hey David that's great 🙂

You crack on and enjoy it, no skiing or sky diving but hey I could live without that!

You have a great one too Tom and young bride. After all you deserve a holiday with all the supporting you do on here! 🙂

Vicki and Colin

Ali, hope your mum and dad got off ok….:-) I hope getting better weather than we have had! Thanks for the email….what I don't get is that colin can't string a week together without suddenly feeling rough or really knackered! I do worry if this is normal. Example of week; Monday work 0645am to 5pm, Tuesday work the same, Wednesday 0645am til 3pm then absolutely knackered for about 3 days on and off? Is he just doing too much? Today he was up by 9am, we went visiting til1pm then to garden centre til 2 then he has been absolutely wiped out. Because we have nothing to measure it by we don't know if that's right or wrong then leading me to worry about mm! Sorry to hog David's good news thread 🙂

Vicki And Colin x

[VickiParticipant]

Hi jacqui and Geoff,

Hope all goes well…thinking of you. Remember the only way is down and then up up up when those neutrophils recover. Hope you were able to enjoy America some how jacqui despite the worry 🙂 tell Geoff to keep his chin up and say hi to Sian 🙂

Vicki and Colin x

[VickiParticipant]

Hi Alex

Thanks for this too. I have told Colin about this and hoping he will do of these exercises too. He has an MRI scan injure to see what's happening to his vertebrae t12 that was damaged by the mm so maybe after that when they decide what to do with his back he might get to do physio and these exercises!

Hope you are keeping well

Vicki and Colin x

[VickiParticipant]

Hi Helen

The knitting sounds well impressive. I can remember trying to knit when I was a kid and yep it looked more like a fishermans' net than anything else. Maybe the knittings not my strong point!, it must be quite relaxing to take your mind off all the troubles and tribulations that all this treatment brings, trouble with me is when I start something I want it finished straight away so get more stressed when doing it, rather than remembering it is supposed to be relaxing! Hope you are still feeling well ish, and it won't be long before Peru I bet ya. A friend from work went…..I would tell you what it was like but she doesn't know either as when she got there she ended up with a blood clot and spent most of her three weeks there in hospital and 6 months after on warfarin!

Ali, hope your mum and dad have a great time. It must be nerve wracking for you all. Colin and I haven't been anywhere, just when we start gaining confidence he has a down dip. Like over the weekend he was reasonable, did too long a day at work Tuesday and now like a wet rag today. It seems like he is either well up or well down. We don't seem to be able to string a few weeks together that is totally good and therefore we don't have confidence to go away. I feel quite anxious at the moment and seem very preoccupied with the future and what each pain, fatigue or issue Colin has as being mm or not. I try not to show it but its hard not to worry! That said we just live in hope that a cracking mm cure will come on line soon :-). Colin elected not to do maintenance treatment as he was fed up to the back teeth with tablets and making him feeling rotten. I think it's all about an individuals body and wonder whether the tablets help or not…..only my thought and no foundation! Mind you there are days when he feels rough now? How's things with you Ali?

Take care Both and keep knitting Helen, is there any money in it…..your new business maybe?

Vicki and Colin x

[VickiParticipant]

Hi alpenator,

Sorry I am not sure what the terminology means but Helen's explanation looks pretty good to me. Sorry you have had to join this happy band….my partner Colin was diagnosed in October 2011. It has been a damn scary roller coaster ride, but the medical teams have done a grand job to get him through to sct in October/November 2012 and now he's in recovery 🙂

Good luck with your treatment and remember to ask lots of questions so that you know what the team are doing and why. It's your body you know 🙂

Vicki and Colin x

[VickiParticipant]

Blimey Helen,

I was just going to do an email to see how you were doing and If you had started treatment…..yep I can see that you have and that dex is doing its magic :-). I so hope we don't have to spend any time at hospital any time soon other than the 2 monthly check up! 🙂

Glad things are going reasonably well, and sorry for the other ups and downs. Hospitals vary so much from hospital to hospital. I'm sort of a lesser version of eve, ask as many questions but a little less potent (sorry eve in a nice way :-)) after Colin's sct he's still very tired a lot and had a burst of gastro acid resulting in these tummy pills again…..and me I've decided the shocks hitting me after it all as I feel very emotional and unsure of the future…scared and a bit like I want to grab this b disease by the scruff of the next and kick ax! Still can't be helped 🙂

Hope you are okish Helen….knitting eh? A new skill post myeloma or always been good at?

Ali, how did your mum get on, on the cruise? Hope she is well 🙂

Vicki and Colin xx

[VickiParticipant]

Mary and Charlie

Paraproteins undetectable is good! Means the treatment is working 🙂

Vicki and Colin x

[VickiParticipant]

Gosh what a shocker Wendy, doesn't bear thinking about too much, lets hope there's some stability and right results soon xx

Vicki and Colin x

[VickiParticipant]

Hi Pauline and Marc,

Sorry to hear of your troubles….my partner Colin was diagnosed in October 2011, going on the m11 trial with rcd, after 7cycles went to zero pp and few light chains. He had an sct in October/nov 12. We have had our ups and downs…..Just when we think its ok he goes into a spiral of being absolutely exhausted etc. however the encouragement for you and Marc is that they got him to sct 🙂 and beyond.

When he was diagnosed Colin had a bit of back pain that got worse and worse….other than that he wasn't ill. Looking back though he lost an awful lot of weight which we put down to back pain and therefore reduced appetite! How wrong we were! Shock disbelief, complete fear…all the ones you've had. I don't think we have got over that, just learnt to live with it every day and find something to be thankful for on this journey!

This can be a lonely old road for sufferer or supported BUT this forum is a godsend, so are the mm team nurse, so kind helpful and knowledgable. Between us all we can do it 🙂

Best of luck

Vicki and Colin xx

[VickiParticipant]

Ps I think Dai and Tom are superstars 🙂 too

[VickiParticipant]

Hi Andy and steph,

Glad to hear you are sunning yourselves in Greece….my money is on your pps being right down when you come back. It's the sun and the beer :-). But for now you guys have a great time 🙂

Hi Christine and chris….wishing you so much luck with chris.s treatment, there's alway a plan and always hope. You guys have really been though the mill and on the roller coaster!,

Best of luck Vicki and Colin xx

[VickiParticipant]

Hi jean and frank,

Hope all is well with you guys and franks progressing onwards and upwards 🙂

Colin more on the onwards and upwards and downwards and upwards. We thought he had turned the corner…..does stuff too much and then 3 days sleeping! He has got really bad acid heartburn at the moment and feels really tired, oh and a sore throat. Mm is a bugger, we just don't know where we are with it, even if he is in remission! 🙂

Looking forward to a sunny bankholiday LOL

Vicki and a sleepy VERY Colin x

[VickiParticipant]

Hey Mandy

Did not join this thread early enough! Just wanted to wish you well with your sct 🙂 you've done great, especially since you were so anxious! We so hope you have a smooth ride and can be up and about soon to enjoy being a nanny….and the social life 🙂

Vicki and Colin x

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