This topic contains 21 replies, has 11 voices, and was last updated by 
nickinoo 14 years ago.
Hi all,
Finally joined the new site! Its really nice to put faces to names isn't it?
Sam has been in the City Hospital since monday now, had the chemo on tuesday and stem cells back yesterday.
He is feeling utterly exhausted and a little sick but that is about it for now. Is he likely to feel much worse before he feels better though?
Nicki x
Hi Nicki, I am pleased that Sam is coping so well at the moment. I am right behind him, I go in for SCT on Monday 22 Nov, so will be following your posts with great interest.
My understanding of the process is that he probably will feel a lot worse over the next 3 to 5 days. But we must bear in mind that it affects everybody differently. Some have no problems at all, lucky them:-P
Kindest regards
David
Hi Nicki,
The idea of 'worse' is relative. Sam's system has just been given a massive jolt through chemo… or perhaps jolt isn't quite apposite, perhaps scour is better. His system has been scoured by the mephalan and he has had some really good stuff washed out with the bad, good stuff like his immune system and suchlike. He will have to survive on the bare minimum of good stuff until the stem cells bind to his frame and start relining the system.
Thinking about it the jolt theory isn't so far off the mark, his batteries have been drained and his stem cells have to get positive and recharge his batteries… until then he will feel drained, perhaps a touch of sore mouth, usually a few days of welsh full back (dai rear) and a general lack of appetite for food… and everything else for that matter [b]but[/b] not (unless he is unfortunate enough to get an infection) illness as you might imagine it (or at least not for me and most others that I've swopped stories with).
I wasn't ill as such, more like a bad dose of flu without the usual symptoms – so, total lack of energy, ennui, the runs and waiting, waiting, waiting… for that marvellous moment when he gets his first reading back (mine was 0.1) – a reading that says its working and a few days from home and the road to recovery.
Don't worry, just be there for him and don't expect much by the way of exuberance and sparkling wit for 10 days or so. 🙂
Dai. (8 months post SCT).
Hi Nicki
Glad you have managed to join us on the new site, yep its great to put faces to names, totally agree with you there.
I dont know much about Sct as my mum cant have one, but good look and I hope Sam starts to feel better soon, and you make sure you take care of yourself too. We always forget about ourselves. Keep us posted on his progress.
with love michelle x x
Hi Nicki so glad to hear Sam is doing well please pass on my best wishes What a lovely photo of the two of you . Hopefully Sam wont have too many roblems , lack of appetite and and energy are fairly standard just make sure he doesnt overdo it when he gets home love Bridgetx
Hi Nicki
Stephen had his SCT in the summer of 2009. He was quite well through it all apart from the constant loo visits but very tired.
He managed to avoid the sore mouth bit by frequent teath cleaning with corsodyl toothepaste as well as using the corsodyl mouth wash supplied by the hospital.
A member on here has warned that yous sholdn't use the toothepaste forever but it seemed to do the trick while Stephen was in hospital.
It is lovely to see everybody's faces. I will have to wait until I get back to England before I can put mine on. You will all probably wish I had kept in the dark !!
Hi Nicki and Sam
Well its all been said re the SCT, mine went well was in hospital for 16 days and 5 of those was very very tired (flu like is a good term for it)
Oh not forgeting the Runs, gosh did that make the Nurses Laugh, I threw away more pairs of underpants than i do for my grandkids lol
Both of you Keep strong and have Sam rest (even when he says he's OK make him rest)
Now its Onwards and Upwards 🙂
Tom xx
Evening all,
Thanks for all of your supportive replies.
What a few days it has been, Sam felt steadily worse over the last few days as predicted but the main problem has been the pain in the right arm, shoulder and neck, they have done an ultrasound for clots which was fine and also an xray which was also fine so now, even though he is showing no signs of it, they are giving him anti viral medication in case it is shingles.
Has anyone else had pains in their arms and if so what did it turn out to be?
He is still quite tired as expected and has felt sick sicky for most of his stay, but he has still managed to eat most of his meals, he has only been sick once, yesterday whilst waiting for his xray, poor sod.
He has only had one dose of diahorrea and hasn't experienced a sore mouth or bottom at all which is good. He has lost all of his hair now bar a few tufts.
Emotionally I do worry as he is so low.
So am i. Yesterday was a bad day for him (the day he was sick) he decided with my encouragement on a visitor free day on sunday – he is torn as he wants visitors to ease the boredom, but being so popular there is loads and loads of people wanting to visit, and it is making him feel a little exhausted, so I was really looking forward to visiting yesterday. He was at x ray when I arrived and came back very pale and ill, he had a shower and i helped him into bed, but he was away with the fairies really, and so grumpy (so not like Sam!) after snapping at me several times I asked him if I should go and he didn't directly say yes but I could tell he wanted me to so I left.
I can't tell you how upset I felt last night, it is a fairly long journey to get there, I was exhausted (still am!) and felt so rejected and worried, I do not blame Sam for this at all, he was in an awful state, but still couldn't help feeling a little rejected and cross. I felt so lonely.
Anyways, tonight was a better visit, he is still in a lot of pain with his arm but managed to sleep well and hasn't been sick again.
I just can't wait to get him home now, the first week flew but I am ready to have him home bugging me, winding up the dogs and making a mess again now.
He had his chemo last tuesday and stem cells back last wednesday and his consultant predicted he would be in for about 2 weeks all being well.
I adore my lovely husband and am so proud of him (yuk how slushy! Lol!)
Sorry this is a bit of a ramble!
Take care all.
Nicki xx
Hi Nicki both of you must be exhausted and no wonder you both feel down but it wont be long before Sam is on the up again and you can get some normality back .Do you have a close friend or family to spend some time with while Sam is in hospital , it would be god for you to have someone give you some tlc Sorry I cant be any help about the painful arms I havent heard of anything like that before ,hopefully the doctors will find the cause very soon Take care Nicki and please give my best wishes to Sam Remember it wont be long before he is home love Bridget x
Hi Nicki,
The Sam you know is still there, all this snapping and snarling is just a by-product of feeling so down and helpless, combined with his not really wanting you to see him like this.
Janet caught a cold just after my stem cells were returned and so I didn't get to see her (or anyone else for that matter) for twelve days. I missed her dreadfully; her company, her practicalities and most of all that feeling, that frisson of thingamajig that I feel every time she comes into sight (we can be together all day and she can go to the toilet and I still get it when she comes back into the room). She came in to the ward reception and left bags of essentials and goodies on four occasions but I didn't get to see her (but she felt closer on the phone, which is stupid but real nonetheless).
Thing is, in hindsight, I am glad that she didn't have to see me at my worst. I coped with it, I had no choice, but I am glad that she didn't have to look at the phizzog I was looking at during the two or three worst days.
Janet was like you Nicki and all you carers out there – you have to see us when we are bad, ill, sick, sticky – you have to deal with our mood swings and our doubts and drizzles but you also share in our little triumphs, see us recover, grow stronger and hopefully reach a plateau of normality; where we are the person we used to be, or near as dammit.
For me, those few days mid-SCT were the worst I felt in terms of physical well being and I am glad that Janet didn't have to 'share' them. For those that do, you in particular Nicki, please try and understand that we are not ourselves at that time, we are merely the shadow of ourselves, waiting for some light to lead us out into the other world – a world less 'real' and more 'normal' where we can feel human and look forward and outward, not inward and backwards.
Sam will soon be Sam again, it is enough at the moment that you can say 'I'm here, I always have been and I always will be'… and I promise you that, for now, will be enough.
Dai.
That is a wonderful posting Dai. I wish I had such an ability with words and sentiments as yours. Well done.
John
Nicki, what a wonderful posting, I feel so much for you and wish that I could someway reach out to console you at this moment. My wife, Mo, is not computer literate but I will ask her to read your post and Dai?s when she comes home. The pair of you have explained the situation I face next week and the effects on everybody involved so well. Thanks
However, perhaps the attached photograph Dai sent me of himself when he was going through his SCT might help.
Kindest regards
David
Hi Nicki and everyone else.
I had pains in my shoulder after coming home from SCT. I had physio which had little effect.
The pain gradually went away, but I feel a general weakness in the affected arm still after 14 months.
I put it down to lying awkwardly in bed in hospital. I had a drip, etc in the affected arm and wondered if I held the arm awkwardly because of that.
Grumpiness – I had all that grumpy stuff happening at one time, too. I am now back to normal (only a bit grumpy) and the rest of my life is "normal" again. Home life is brilliant as always and sometimes it (the SCT) seems like a bad dream. I have flown a plane since my SCT, got a new job, had the house extended, caught a 20+LB carp, started a new band, bought a new car and sold the old one, bought a new guitar and amplifier, taken the family to Glastonbury on hoiday and grown tomatoes and chillies. I also learned to cook and have started writing a book.
That wasn't just stuff about me…I wanted to let you know that life can be normal again after this illness has been treated and I hope your husband feels better soon.
Good luck on Monday David.
John
Hi John wow I feel exhausted after reading your post !!!Seriously it does show us all that life is for living I was wondering what do you feel most proud of doing ? Take care love Bridget
Hi Bridget. What am I most proud of? I am very proud of my 8 year old daughter. She was born before I knew I had MM of course, but if she is all I leave to the world (one day), I will have done a decent job.
J
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