[DaiCroParticipant]

Hi jean,

I have been following the thread and one point in particular… the untimely and shocking death of our good friend Paul. 🙁

Paul's death was truly shocking … he was young, fit and seemingly doing very well in his recovery following his SCT. Because of his relative youth and fitness perhaps we thought him invulnerable to infection… but he had MM, the same as the rest of us. 😐

Paul had been out for a 5 mile walk in the morning before he fell ill. His Neutrofils must have been pretty low before the infection took hold and despite his seeming strength and fitness and the amount and strength of the antibiotics given to him… he was unable to fight off the infection and death followed.

I have wondered if he was doing too much. He was doing so well, feeling so good, recovering quickly… let's think about it.

We have our SCT's, we spend several weeks re-learning to eat, walk and move about the house. Then we start to feel better… in so many ways… and we start feeling secure in our state of being… that we are finally disease free… for now and perhaps, hopefully, with a following wind, for many years. Consults and bloods are encouraging and we grow more confident in our bodies and our abilities to lead a 'normal' life… but it has been said so often here… the rate of recovery following a SCT can cause false optimism. Some people return to work… far too early. Others take on journey's or activities that take too much out of them.

A common factor in people with MM is the rate of recovery, not just from the major points of MM like our SCT's but from every day activities… like small jobs around the house or trips to the shops. That is why some of us encourage others to take their time in recovery… and when they feel ready to rejoin the world… take another couple of months to prepare for it. 😉

I feel like such a killjoy when I tell people about to take on their SCT's that it can take up to 12 months to fully recover. That doesn't mean living like a Nun or a Monk… being a recluse from the world and its activities… but that it is well worth the extra time in recovery, taking it easy, building up strength and stamina so that they can fully enjoy the remission that follows… without the hiccoughs of knock-backs and infections associated with overdoing things while still in recovery. 😛

A SCT is a major event… your immune system is deliberately destroyed… then you are given your own Stem Cells back which have to stick to your bone marrow and start growing. Like a computer your system is literally shut down and rebooted… but unlike a computer, which has a hard drive to give instant recovery to files and applications, your system has to start rebuilding its files and applications byte by byte, taking weeks and months to fully recover.

Paul was desperately unlucky… and there seems to be no rhyme or reason why some have remissions that last years and others who nay manage a few months. But to give yourself the best chance it is advisable to take recovery from the SCT very slowly with minimum risk.

I am sure that Frank will take on the SCT with the necessary precautions and the just as necessary positive outlook for a full recovery and the years of life to follow. 😎

Take it easy… but take it. 🙂

Dai.

[ozzyParticipant]

Hiya Jean
I had my harvest early November 2010 but didn't have my transplant until 8th January 2011 so you might make that footie match after all.
With the sct I stayed in isolation until 29Th Jan and was then went home. I know that I had a clean diet for another month and Gayle banned all visitors until my blood recovered. Every morning she anti bact all door handles, the taps even the kettle handle! I know when I was able to go out we dodged people like they had the plague and I remember asking the consultant could I have fish and chips and he told us to take my own plate not their paper and ask them to cook a fresh fish while Gayle waited.It was hard but I did remain infection free.Good luck for the sct you will be looked after well they watch for everything.
Regards Paul xxx

[jmsmythParticipant]

Hi Dai and Paul

Dai thank you for your post – you spoke very eloquently about Paul. I know we have lost very good friends to the this awful disease but I think it hit hard because as you say he was doing so well and was so young and just something that I never expected. I will make sure that Frank takes recovery very slowly and just pray that all goes well. How have you been Dai? I hope that things start looking up for you

Paul my sons tell me that I am OCD. From Frank was diagnosed everything was wiped with disinfectant wipes- even our bed is sprayed with Dettol spray. I am a sad person as I take the stuff with me on the plane and to a hotel. Everything is wiped. Don't know if I could do the fish and chip thing 🙂 I am taking my 'detol kit' into the hospital – just to give it an extra clean. I know I am a sad person 😛 Franks flight has been cancelled and our other son will be going for Steven. We were having a party for Steven (30) but that was cancelled as well as our guests for Christmas dinner. I would not relax and am sure that I would make people uncomfortable watching for a sniffle. How have you been since the SCT. Are things good for you?

Thanks again to both of you
Take care
Jean xx

[VickiParticipant]

Hi Jean,

Re avoiding infection before SCT, yes that's true because they won't do it if there is infection…..not in Gloucestershire anyway. I asked the SCT nurse about what if I got a cold etc. She said if Colin caught a cold they would probably still do it, but they wouldn't do SCT if he had ear infection or sore throat infection. A friend of my parents has mm too and he had an ear infection and they would not do his and cancelled him for 6 weeks for it to clear!

I am totally with you with the Dettox etc. I took anti septic wipes in to make sure I could wipe over the suffices, anti spec tic wipes for colins hands etc. At home same regime with door handles and the antiseptic sprays for visitors. We have kept those to a minimum, I have not seen half my family for at least fortnight as they have colds and throat infections. At work I nearly had a nervous breakdown when someone came in to work saying they'd been sick the night before.my boss saw the look on my face and sent them to work in another office. I am always hand sanitising! You go for it better safe than sorry 🙂

After franks sct make sure he does take it easy…..as soon as they start feeling better (Colin!), good in one way, but they do far too much :-), shops, crowds, too many people with colds!. I hope you can get this over with before Christmas as the waiting leading up to it, we found awful :-). Frank will soon be back watching united!

Vicki and Colin x 🙂

[tomParticipant]

Hi Jean and Frank

Well football :-/ am sure some of the men are crazy 😀 never liked it never understood it BUT two out of our three Sons are pretty good in the local teams and are well fought after at the start of the season to go onto other teams ??????? :-S
And tell Frank I have a Footy shirt that was Mark Wilson's (played for Man U) and signed by the Man U players had it a few years am sure its worth a few bob, I lent it to our Football club that I drink in and its on the wall 😀

Keep strong and well

Love Tom "Onwards and Upwards" xxx

[jmsmythParticipant]

Hi Vicki

Thanks for your advice. At first I was a bit uncomfortable when people visited but not now. Frank is more important. I have the poor mans head turned. He went with sons to pub to watch United. He has the hand wash, wipes and I made him take first defence before he left the house and he has it with him. And I forgot the Manuka honey – which he hates :-/ one of the nurses told us it might be February before he has SCT. as you say the waiting is the worse thing and yet I am dreading it. I do hope Colin is going from strength to strength. I have a little notebook and I am noting the advice and tips that I get from the forum. I was just telling my DIL that I don't know how I would have got through this without the forum

Tom a man who,doesn't like football!!! They must have thrown away the mould when they made you 😛 franks treasure is a signed photograph of his hero Ryan Giggs. With having 4 sons I had no option but to get involved in football and must say I do enjoy it. When I think I have the off side rule sorted out in my head something happens on the field and I'm back to square one.

Keep laughing Tom and us 😀

Take care love Jean xx

[tomParticipant]

Hi Jean

Well I have been known to watch Footy at the Club we drink in 🙂
I got three £5 notes for friends of ours that had George Best on limited edtions from Ireland a few years ago, so I do a fair bit re football memorabilia Ha ha not bad for a man that dunt do footy Ha ha

Off side rule :::: When a player is nearer the goal before the ball is kicked ???? or something like that Lol.#

Love Tom "Onwards and upwards" xxx

[VickiParticipant]

Oh no this is turning into match of the day :-)……

Offside rule!, footballers, what can we say. Come on the arsenal 🙂

Jean, gosh I hope Frank doesn't have to wait til February. Like you we wanted it over, but when it came we were petrified :-(. Still not counting our chickens but Colin seems to be progressing well so fingers crossed. One thing to watch for Jean is getting over tired and stressed yourself. In hindsight it has been the most shattering nerve wracking experience of my life. It's caught up with me and im trying hard to get some normality for me back but it's harder than I thought. I reckon it's all about pacing yourself….here we go back to football. It's a game of two halves 🙂 before and after SCT 🙂

Happy Christmas to you all

Vicki and Colin x

[jmsmythParticipant]

Hi Vicki and Colin

Good to hear from you and glad that Colin is on the right road. What terrible news about Colin's dad. It's never good to hear news like that but at Christmas it just seems so poignant. I do hope you have a brilliant Christmas. I'm a bit worried (there is no satisfying me) this is the best Frank has felt in a long time. He went through the chemo – no sickness, injections started on Wednesday and he has had no soreness or pain and the nurse had said that pain and discomfort was a good thing. Maybe he will wake up to prow feeling bad!!! 😛

My son is taking me to the cinema on Tuesday to see the new Bond movie – cant remember the last time I was at the cinema

My very best to you both and hope Colin goes from strength to strength. Keep us posted

Love Jean x

[HelenParticipant]

Dear Jean
I've just read what Dai wrote on here a few days ago and can't add anything to that, I took 11 months to feel normal after my SCT, it is a terribly slow recovery sometimes. Now I'm able to do so much more but I did think I'd never get to this point. I felt really well for a couple of weeks after my harvest settled down too so it sounds like Frank has got over his induction chemo, so he might be really well over Christmas, just enjoy it as much as possible before the transplant starts.
Love Helen

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