[Anonymous]

Hi all

ai got let out on day 13 from when stem cells were given back to me. Though it was great to get out early, gosh I still feel crap.

I got out last Wednesday, and have the following. Constantly feeling cold, even when the house is very warm, generally feel weak, horrible taste in back of throat, water has only just stopped tasting of salt, tea still taste crap, want to sleep a lot, bla bla bla.

How long will I feel cold and shivery for? That is my main gripe, I can put up with the rest.

I never new just how bad teh Melthalin would make me fell, jesus, that stuff is strong, my throat has only just stopped hurting.

Thanks.

Terry

[tomParticipant]

Hi Terry

Well they wanted rid of you or your counts shot up 13 days thats great going (I was 16) now then as for feeling crap, I still feel like that some days.
As for the feeling cold? since my SCT I have felt the cold more than ever before and I had mine done in 2009 :-/ I was always one to be out and about in a T Shirt but now av got a big jumper on and some times I wear a thermal vest under my jumper and am only 56 lol.

I was feeling crap for about 10/12 weeks:-/ but after that time I woke up knowing some thing was wrong and it was because I felt 100% better 😀 and have never looked back since 😎

Good Luck in your getting better before you get fit regime:-D

Tom "Onwards and Upwrds"

[HelenParticipant]

Hi Terry
I was out by day14 and felt dreadful for weeks. I did as much as I could, slept, cooked, slept, went out, slept, saw people, slept, ate a bit, slept, got infection after infection, slept you can see the recurring theme here :-S

I'm now 7 months post SCT, still have some residual problems BUT for the last 10 days I'm more like myself again. Now I know I've taken longer than most to get here but I'm now improving a lot. Doing the garden, walking a lot and staying awake for about 13 hours a day, so I feel as though I've finally turned the corner, though I still need much more sleep than I did before.

I'm on revlimid maintenance so have always got a strange loss of taste and altered sensation in my tongue and round my mouth and my mouth remains very dry and borderline sore but in the scheme of things this is nothing to compare with how I felt a few months ago.
As Tom says, you just wake up one morning and you are aware that there is something different…….. You got better!:-D So here's hoping you do too8-)
Love Helen

[PerkymiteParticipant]

Tom & Helen have basically covered it but I would like to add a bit about feeling cold. I had my SCT nearly 14 months ago and I still feel the cold, in fact, it brings me down quicker than anything else. As soon as I start feeling a chill, and that could be on a warm day, I pile on the cloths and I would recommend you do the same.

Glad you are progressing so well.

Kindest regards – Vasbyte.

David

[DaiCroParticipant]

Hi Terry,

This is the bit that we don't fully explain in the guide books. We usually offer a few homilies about taking it easy and letting it wash over you… grin and bear it, hunker down, go with the flow, etcetera, etcetera.:-|

You will get the advice and encouragements…' hold on for a little while longer', 'hang on in there', 'its worth it in the long run'… you get the message.;-)

Many of us find that we are left with one or two long-term weak spots… from feeling cold and loss of appetite to low fatigue thresholds and sleep problems and of course a few bonuses… better, stronger, curlier hair, improved senses, especially smell and taste – in my case my eyesight improved three-fold… that is my prescription went back to that of 1988 – brilliant but wasteful in terms of the cost of new glasses.:-D/ 🙁

[i][b]But all in all its a pretty sh*t ti[/i]me.[/b]

There are 7 days in a week, 24 hours in a day, 60 minutes in every hour (or 3,600 seconds)… the UK, Europe, the World, the Universe and so on. Your inability to jump up and join in, coupled with little appetite, diminished taste and a general feeling of ennui… well, its not much fun.:-P

But you are here… alive and prodding your leg out… getting better and stronger and more alive with each passing minute.. and hopefully the time spent recovering… no, being renewed… will be matched 10, perhaps 20 fold in a few months time.8-)

It will make it all worth while.. but in the meantime you will have to wrap up, cool down, be patient and tolerant of those who look after you… and accept that that is all you can do… for as long as it takes.:-)

Dai.

[Anonymous]

Hi Di ETAL

Thanks for the messages.

Just sat in the living room, sun blazing through the window, and bloody shivering, lol.

I've ordered a couple of thermol vests, will that stop me from feeling so so cold?

I'm constantly waking up in the night needing a pee, mainly due to the water retention from being on a drip in hospital. I will be glad when that stops, then maybe I will be abel to have an undisterbed nights sleep.

I just hope I'm okay in a couple of months, as I could do with going back to work for the money, no other reason, lol.

Amazingly, I didn't lose my hair, though it is quite thin now, I have no bald patches, so hopefully, non will appear now.

I'm not used to doing so little, and its making me feel a bit useless. I just want some energy, and a bit more get up and go.

If I contact Mcmillan, will they be able to claim family tax credit on my behalf? Really haven't the energy to bother with it, and would dlove someone to take it on for me.

I never notice my blindness at home, but goodness me, I felt so so blind when in Bart's, very volnerable to.

Sometimes people would come into my room, and not bloody speak at all, even when I said hello, I found that encredibly frustrating and annoying.

I think it was mainly down to their lack of english, and they weere just used to doing non verbal communication.

Ah well, I'll take my moans elsewhere, lol.

Take care all.

Terry

[HelenParticipant]

Hi Terry
My get up and go got up and left about 5 years ago and is only just coming back lol!
I forgot to say that I have had a hot water bottle practically welded to my back until about 3 days ago and have worn socks and many jumpers constantly in bed I was so cold. And as David says when you get cold everything seems worse.
As for Macmillan …. No idea … Ask them, I've not tackled anything like that yet except ESA and that was only when work sent me the form.
Take care of yourself
Helen

[mhnevillParticipant]

Hi terry

I think it is marvellous that you felt able to text so soon with the additional problems you have had to deal with. It feels so terrible when folk seem to ignore you because of their defficiencies, not yours. They should know better.

Glad others were ablt to give you advice about the coldness. One thing I'd say is, if yopu start trembling take your temerature. I didn't realise, till I had a reaction to my first zometa infusion, tht shivering courl be a sign of a high temperature. How perverse are we!

I'm glad that Damart, a Bradford based firm making thermals, is getting a kick back from MM sales!!!!

Do be kind to your self. It is very very early days for you.

All best wishes.

Mavis

[tomParticipant]

Hi Terry

I also have been sat at a window when the sun has been throwing itself and its heat straight at me an had a "Snugglr Blanket" "other brands are aslo available lol) wrapped around me. yes i have (and still do) used a thermal vest in cold days (works a treat) as i cant see any point of feeling cold when you can buy borrow or nick( please dont do the latter lol) things that can keep you warm.

As for the Tax credits and claiming what you can? are you not eligable to get some one from the DHS to come to your home and fill the forms in due to you sight problem?? am sure it worth a try.

Am sorry you had some (not all) that turned a deaf ear to your cheery coments but am sure with having a word with the hospital it might just might alter it for another patient that was blind.

Take Care and dont dare take your "Moan" anywhere else Lol

Stay Strong

Tom "Onwards and Upwards"

[GillParticipant]

Hi Terry

My husband Stephen is the mm person here. I pull his leg constantly about feeling the cold. This South East London builder who wore T shirts all year round and moaned about everyone else wanting the heating on etc. now wears my Snuggie in the evening and cranks up the heating

I don't know why mm ers seem to feel the cold but it does seem to be a common side effect for many.

Stephen also felt aweful after SCT the doctor did tell him that he woul make him feel worse before he made him feel better and boy oh boy that was the truth

I wish you the very best of luck for a speedy recovery do keep in touch

Kind regards Gill x

[DaiCroParticipant]

Hi all,

Well we have all heard the term 'frozen to the marrow'… and what have we all got in common? A cancer of the plasma cells in that very marrow… I know that I have virtually no regenerating marrow in my right arm, my upper left arm and my left femur… + my ribcage, which apparently looks like a pin cushion, with holes made by extremely large, hat-like pins and my skull with 2 craters etcetera, etcetera.

Even if you have minimal bone damage your central heating system is running on a really low setting and after a SCT, where they practically shut the system down and wait for it to reboot, there is no way of artificially boosting it… you have to wait for regeneration and cell growth replacement… and that is why you feel the cold so much.:-P

Hot water bottles, thermal vests (but watch out for excessive sweating) and layers of easy to doff clothing… plus the patience inspired by the knowledge that every day you are getting stonger and better and filling up with bright new but still baby stem cells… they will need to fully mature (as I understand it 6 to 12 months)… but it will be worth it.:-D 😎 😉

Dai.

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