Chris,
Wonderful news, so glad you've got home, even enjoying a roast and a beer. That's great going :-). It must be great to enjoy just being at home. After all this the simple things seems so important don't they. I can't wait for Colin to be home…..hopefully sometime this week.
The neutrophil score is now the real score, not boosted by gcsf, they stopped those. He is now just 0.41 which they class as neutropenic. So we are told if al goes well might be home later this week. That's when the real recovery starts, like you 🙂
Best of luck to you and Lena, keep us posted x
Vicki and Colin x
Ali,
That's absolutely wonderful news, good on you all, especially mum for doing all the hard work! So pleased to hear things are slowly and surely improving. Including the hair…..is a new style in order? Very best wishes to you all. This will be a good Christmas for you all…..best present ever, mum on the mend 🙂
Vicki
Ps Colin might hopefully be coming home sometime this week 🙂
Hi chris,
Just tuning in, I really hope you are on your way home, if not already there! It will be so great for you, and hope that you can really enjoy the time catching up with home and being I familiar surroundings!
Colins bloods are good and he is seemingly a little better with the pain, although drugged up.
Good luck and keep up posted on the recovery.
Katie,
My Colin who has just had his SCT, and hopefully home some time this next week, is the worst person to keep occupied. He gets bored so easily! When he came in for SCT we took in iPad, kindle, mini DVD player, mobile phone. To be honest after about the first day when he used the DVD player he's just used his mobile and had the telly on in the background. He either felt too rough or too tired to be bothered with any of it!. He's not home yet so not sure how to keep him occupied, other than walking a bit and building up strength. Best wishes to your dad and hope all goes well x
Hi Helen and Tom,
Thanks for the reassurance. I think I had a minor wobble yesterday, and had a blubb outside as i was convinced mm had reared it's head. I think being shattered and trying to keep everything going took a chunk out of me!. The good update for me is that I feel a lot more reassured from you guys and apparently the consultant is adamant that the pain is due to gcsf, he's having lots of pain killers (in fact he talks a load of rubbish at times due to the drugs!). He has had a walk down stairs today, in the day room for a bit, now shattered and asleep, snoring on the bed!.
The goods news is that he isn't on a drip now, drinking well and all his bloods, whatever that means are doing very well!. Back to just getting these pains in the arms sorted and off the drugs and he can come home then! So I just need to keep calm, try to relax and recoup some energy cos I'm kxxxxd!
Love to all 🙂
Vicki
Babs,
Welcome, and congratulations of your SCT success. My partner Colin has just had his SCT, in fact i am sat in hospital with him now! It is great for me and colon. Tom read success stories so keep them coming. It's great to hear success stories. I had a real wobble here at the hospital this afternoon and blubbed to two nurses as I am so worried this SCT thing won't have worked. However it gets tiring doesn't it! And all the little worries become big ones when you're sat thinking!
Colin had a bad back too, had one vertebrae wedge, and the rest as they say is history….wish you well and like eve says, travel and do whatever makes you happy, especially seeing your daughter as that's precious time and you can go to a great part of the world too!
Vicki x
Hi ann and Peter,
Good luck with the appointment on Tuesday, SCT looming fingers crossed!. Sorry about the cough and cold there is a lot of it about!.
Well all I am worried! :-(. Bloods (neutrophils 1.4 ish), he needs some platelets I'm told but that was Colin telling me and he's a bit drugged up!. Generally he is eating better and drinking loads better so happy with that. I am very worried about the pain he is getting in both upper arms. He is drugged up, and finding it difficult to lift his arms above waist level. They stopped giving the gcsfs Tuesday night, don't know what strength but they certainly zipped colins bloods up but since the gcsfs were commenced the pain started Tuesday and hes been in agony. Does gcsf pain last that long. It comes out this afternoon Colin mentioning that he has an xray earlier this week to check out due to pain. I haven't seem the consultant but it seems they are saying it's due to gcsf……I hope that's true because he has had nothing like this pain before….anybody else experienced this type of pain after SCT?
Vicki
Chris,
That is wonderful news, so so pleased for you!. I'm glad that you have recovered so well, but remember as everyone has warned you must take it easy and not get over doing it!. I bet Lena and the family are thrilled to bits….:-). You won the race! Colin is definitely going to be in over the weekend. His neutrophils are fine, I think he needs some platelets and stuff but generally the tummy troubles and the rest are ok. The only issue is he has these terrible pains in the top of both arms, so much so it's hard for him to lift them. Still another story.
You enjoy your home coming chris, so pleased for you and Lena 🙂
Keep us posted on your recovery!
Vicki and Colin x
Hi chris and Lena,
I love the home DIY shows too! That's what I watch when colins asleep as he is now. Sorry your blood has got stuck but I bet by now it's on the move. Colin has had the opposite, bloods shot up like a rocket and the gcsfs have made him feel in agony and he is drugged up to the eyeballs and won't be allowed home this weekend til thats sorted. Chris you have done so well and will soon be home don't worry. Realise how hard it it to be stuck in a room! Make the most of it as I reckon when you are better Lena can find a list of jobs for you to do 🙂
Best wishes
Vicki and Colin who is now snoring (morphine induced!
Hi all,
What twists and turns this myeloma, SCT lark brings! Here we are again. The last couple of days have been hell. Colins bloods have recovered very well it seems. Last neutrophil count 1.4!. That's great and as far as I know hasn't had platelets for a couple of days. The both ends issue that Ali mentioned has not been too bad. What's the problem? Colin has been in absolute agony following the gcsf injections. He did not get any pain when he did the mobilisation for harvest but boy has he made up for it this time. Since Tuesday night he has had absolute agony in either arm, small amount in hip and bit in neck. My mind was working overtime…..worry worry worry what could it be but we are assured it's the gcsf which he has now stopped having cos his bloods don't need it. The downside to get pain under control he is drugged up to the eyeballs. And then weekend home is an non starter 🙁
The plus point to end on, he has started to eat a little bit and find drinking a lot easier (cept for the phosphate tablets which he still can stomach! More positives than negatives….ironic he had good reaction to gcsf this time! 🙂 fingers crossed the pain can go soon. Chris I think you will win the race to go home!
Vicki and asleep again Colin x
Hi chris,
Just tuning in to you and Lena, hoping that things are going well for you. Colin has been pretty rough last 2.5 days but picking up a bit now, however struggling with food and drink!. Hope your tummy is starting to settle down after coming off the antibiotics. Wish Colin could eat a bit more,like you! Colins neutrophils are 0.45 we thought he said so there is a chance he might be home at weekend? Still need to get sickness and tummy issues under control. Not counting chickens though.
Who knows you might be home by now? Hope so for all your sakes. Take care and keep us posted,
Vicki and Colin (who is awake and sitting in the chair!) 🙂
Hi all,
Well the last 2.5 days have been absolutely awful, Colin seemed so I'll, sick, tummy troubles and looked absolutely awful. Even this morning he sounded so awful. There are problems with eating, drinking,stomach feeling awful, rash however, seen the consultant this afternoon…..neutrophils back up to 0.45 which they are very pleased with, platelets not sure and a bit low on phosphate, however overall they are v happy so far. And so am I!. Not out of the woods yet but a big step in the right direction 🙂 🙂 :-).
There is some talk about coming out by the weekend if they can get the sicky, tummy, eating, rasht issue under control. Not counting chickens but big boost for both today 🙂
Vicki and an awake and sitting in the chair awake Colin x
Hi all,
Thanks…. You're right it's a slow thing. No worries. Helen you must know colin, he is grumpy already! 🙂 and some of those meds, whatever they are he is talking garbage sometimes! Still they seem to be doing the trick! Hope you are feeling better Helen with that pesky cough.
Ann and Peter, hope you are both well and Peter is progressing towards SCT….roll on eh!
Tom Colin is out of bed at the moment, blimey first time that's happened in ages ! However he is now dozing in the chair ha ha. He is a rubbish host too, but the hospital good and I get a nice cup of tea and a sandwich if I want one (well tea is wet and warm but goodness knows what milk they use ha ha :-).
Still sitting tight, don't know what the neutrophils are at but do know there are bucket loads of antibiotics. Been a lovely autumn day here,so nice to view it out of hospital window lol!
Vicki
Chris,
That's wonderful. You keep going! Sounds from what you and the others have said you are well on the up!. Colin is looking like a bag of spanners and his hair has started to come out, for the second time!. They are ploughing anti bios in like a rate of knots! So glad you are on the up, pending release at the end of the week eh 🙂
Well done so far and best wishes, thinking of you both. Hope Colin soon the same, he's not had montezumas yet so we've got that to look forward to 🙁
Vicki, and Colin who is just about awake!
Hi both
We feel for you guys and wow feel very inadequate about what can be said that doesn't sound patronising. To be honest it's hard enough to cope with the diagnosis, without the disability that can come with it. You guys are absolutely wonderful about the way you are managing. The pps have come down in a big chunk haven't they. So that's a positive.I am confident that there will be a clever surgeon somewhere that can sort out the structural side of this….. They can do wonders and never give up faith that this can happen, as dark as the days can get :-). Sorry there's not more that I can say, but thinking of you:-)
Roll on that Melvin can get to SCT, where Colin is now.the medics can do wonderful things x
Vicki and Colin x
Hi Phil and family,
Sorry ibliza was shut……I thought it was a rave place?
Update on Colin, the rough weekend. Consultant tells us he will start to recover, likely Monday, roll on. He doesn't look great and I'm just waiting for that hair to start coming out. He has eaten a very small amount but I reckon he's a bit like his elderly dad…..makes it up a bit about what he has eaten! Still just sitting in out and roll on when colin can come home. At least I can rush about like a mad thing rather than trekking up and down to hospital. (50 mins each way and a b when the weather is bad!). still who cares as long as he is ok.
Take care all 🙂
Vicki and Colin (who is asleep again, good for recovery) 🙂
