[VickiParticipant]

Hi Ann

Welcome to the forum, yes it's unbelievable! My partner Colin 56 was diagnosed in October 2011. In that year he did ski-Nig in the January, weeks golfing holiday in march (had shingles). May we went to Mexico for 2 weeks (kayaking, volleyball, tennis etc), July walking holiday to Cornwall…..back pain started early August and then September blood test reveal the dreadful,truth! Like does take a different turn but be positive and you will get through it.

Colin had an sct in November 2012 and is making a slow,but sure recovery 🙂

Vicki and Colin x

[VickiParticipant]

Hey Helen,

Focussing on all the ups…plateauing and only a few plasma cells…..that's got to be good. This could be a blip after all. You know what parking at work, a bloody nightmare….can't you get a medical bay space? Especially if you are in a lot of pain and walking a long way is an issue? No imminent change of treatment….that's good for now eh 🙂

Jean, how are you and frank doing 🙂

Vicki and Colin x

[VickiParticipant]

Terry

I've just posted on your other thread. As the others have said…..give up if you feel you can and want to. I would say don't give up something to do nothing. If the classic cars are your idea of enjoyment go for it, keep focussed and absorbed. I'm a firm believer that someone having a purpose helps!!

Go for it

Vicki and Colin x

[VickiParticipant]

Hi terry,

I am 46 and my partner Colin 56. When Colin was diagnosed we thought our world had come to an end…..scared, worried, like a rabbit in the headlights. Is life a bit different, yes, we can't book a holiday at the drop of a hat like we used to, packing a bag and going away for the weekend at a moments thought. Nope, but I can say to you as a partner of someone with mm every day is a pleasure because we are together :-), no need for anything else :-). Yes it a bugger when we have to trip off to hospital, worry about why this pain, that tiredness etc but we are in it together for the long haul. I'm sure your wife/partner thinks the same.

I worry a lot sometimes and worry about the dreaded life expectancy….I know you have young children, but I've tried to remember my mums advice. None of us are promised to tomorrow, there just the dimension of myeloma I know!, but why shouldn't the drugs work and why shouldn't they find better ones and why shouldn't you be the one to see your children go to uni!!. No need to man up, keep talking and feel the love and support your wife want to give you, as you are the one she wants, not a jet set lifestyle….speaking from personal thought 🙂

Chin up and sorry to go on a bit, we had this same conversation, Colin said the very same things to me, why do I bother……no chance of me going anywhere he's the love of my life and I am going nowhere, I'm as stubborn as he is and we are going to beat this mm, so come on terry too 🙂

Vicki and Colin x

[VickiParticipant]

Andy

Thanks for your kind words, and I think I sing off the same hymn sheet as steph, anything out of the ordinary and it's 20 questions!!! You are doing a great job….maybe as Helen has said you just need beer and sunshine to sort this mm! Have a great time in Greece, relax and who knows pps down again…..maybe mm is giving up the battle because you've fought so hard 🙂

Enjoy your beers once the cyclophos wears off !

Vicki and colin xx

[VickiParticipant]

Good luck David, we sincerely hope this works for you, quickly and that you bin this mm into touch again….then you can enjoy the nice weather, your garden and enjoy the things you like to do.

Keep your chin up,

Vicki and Colin x

[VickiParticipant]

Hello Charlie and Mary

I would echo what everyone else has said, plenty of Dettox to continue to wipe over surfaces, handles, watchful of food dates and none of the likely problem foods, no prawns etc, eggs hard boiled. We were lucky in as much as Colin could eat reasonably well after wards but I made sure food was well cooked, probably too much. Like everyone else, hand sanitisers ga.lore, everyone knew no contact of colds etc. we took each situation as it came, if we were unsure we didn't go and Friends and family didn't come to us if there were sniffles.

Colin was so relieved to be home and kept looking out of the window…but as Tom says it is scary as the nurse and doctor aren't at home…wishing you so much luck. It is a slow slow recovery and Charlie should be careful not to overdo it!

Vicki and Colin x

[VickiParticipant]

Hi jacqui,

No he didn't, we weren't told what his pps were before transplant, we assumed they were still zero. We saw dr Frewin before transplant too and she didn't seem worried about time delays then. I would ring Sian because she can reasure or get this moving. Dr Frewin freighted the whits out of us the way she described the transplant, although probably right, was quite graphic and nearly caused Colin to back out….that said she is very proactive so maybe if she says its too long they'll move it forward.

It is such an emotional time, even now as you'll see I took Colin to hospital today as I was so worried about his fatigue. I do feel for you both, the wait is terrible. Poor Geoff. Let is know how you get on after speaking with Sian x 🙂

Vicki and Colin xx

[VickiParticipant]

Hi all

And firstly sorry to hog this post as this is where Andy's great news is absolute paramount….so to finish off I can't thank you all enough for putting some words down to reassure, it made a hell of a difference 🙂 Tom you are always supportive, eve you are frank and wise, Helen as a nurse and fellow sufferer I trust your views, and Ali you've been supportive throughout and so pleased to hear your mum is doing so well :-). Helen I hope and pray for you that the bmb reveals less than 5 percent and maybe just a blip? By this lunchtime I was too worried and took Colin to the hospital, all his bloods are fine….I and pleased about that and trying not to start worrying out non secretory! What you have all said makes sense and thank you from the bottom of my heart 🙂

Now back to Andy's great news, it must be the beer and sun in Greece, wouldn't it be great if an sct was on the cards, for a man who has battled like hell 🙂

Vicki

[VickiParticipant]

Hi Ali, Helen and all,

I was so pleased to read about Andy…it's great 🙂

Ali and Helen, I've been really worried this last week and can't say anything to Colin. Since he had that bad tummy just before Easter he hasn't been right. He went to work for 3 days on the trot after Easter and then last weekend he felt unwell and since then he has been a wet rag, no work at all and just about managing to walk around the house, and get some lunch. He's shattered by 7 o'clock and in bed…..would that be normal tiredness if he'd over done it? This is the longest period he has felt so tired after sct and I am petrified he has relapsed and can't say anything. He doesn't have any pain and is eating well….am I being paranoid? He has had some good days in the past but now seems to have less energy than before! We've got nothing to measure it by and don't know what normal. He had sct 3 November coming out of hospital 25 November?

Ali, glad to hear your mum is going ok and they are at last going on holiday…..does she still need snooze in the day? I remember eve mentioning the curly hair and Colin's has been the same and he hates it!!,

Helen, how are you doing? Are you still well, have you any treatment plan yet 🙁

Vicki

[VickiParticipant]

Hi jacqui,

No one seemed bothered at GRH about time delays….Colin had treatment til mid July I think and then didn't have transplant til November and no one mentioned time delay…..still if they think its too long couldn't you go to Bristol if they do it there?

Vicki

[VickiParticipant]

Hi Jo

Sorry you have been poorly, hope you are on the mend a bit now 🙂

Vicki and Colin x

[VickiParticipant]

Oh Tom,

Poor you…wondered where you were as you are the mainstay….bet you got this chest infection due to lack of vodka 🙂 too expensive eh? You look after yourself and let young bride pamper you a bit. Take care

Vicki and Colin x

[VickiParticipant]

Hi rob,

It's a long hard road, for your mum and the family, but don't give up…..search for every option as long as your mum is willing to go for it! Where there is life there is always hope. 🙂

Vicki and Colin x

[VickiParticipant]

Blinking eck Dai, you must be really cheesed off and that's an understatement and don't blame you!!!!

Gcsf was given to Colin a couple of times during his induction treatment when his neutrophils were a bit low. He never missed a treatment but might have been delayed a week. There is so much inconsistency between hospitals and given what's a stake is life you'd think they'd have more urgency! I would speak to the myeloma team on site as they were great when I called them during Colin's initial treatment 🙂

Fight for a good life!

Vicki and Colin x

[Author]

Posts