[VickiParticipant]

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

[foxy555Participant]

Oh Vicki

Really thought by your posts that Colin would be home this week-end, but as you say, this Myeloma is a blooming roller coaster, everyone's symptons/recovery modes – so different. Then again you say more positives than negatives, so really wishing Colin the best!!!

All ok here, Pete has a stinking cough and a really bad cough, but glad it is here now and not in a few weeks time.

He will hopefully get his date for SCT on Tuesday, but not relying on it, so many issues may be involved (from what I have learnt from you on Colin's journey and indeed alot of people on this site). Anyway, fingers crossed!

Take care, thinking of you!!!

Love Ann and Pete

xx

[VickiParticipant]

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

[HelenParticipant]

Hi Vikki
I didn't have much gcsf after SCT 2-3 doses I think but I can't remember and my diary is packed somewhere while our bedroom gets decorated! Anyway, I was on lots of morphine for weeks so the pain was usually under extremely good control (I'm a nurse, I don't do pain 😛 ) However, prior to my Stem cell harvest, my first posting on this site was after that lot of gcsf – i was in such terrible pain for a lot longer than I or anyone else had expected, and as I kept popping the painkillers I wondered when I'd ever feel better. I felt as though I had been kicked by a horse and my ribs felt as though they wanted to jump out of my chest, it was a very weird feeling, not at all pleasant! 🙁 I do hope Colin improves over the weekend, make him take pain relief. Look after yourself as well -now is your chance -when you know he's safely parked:-) give the credit card a bit of grief:-)
Love Helen

[tomParticipant]

Hi Vicki and Colin

Well Honest it is going the correct way and to be fair its one not to rush.

I didn't have Injections post SCT but I do remember them prior to SCT and yep it was Bloody awful, the pain was in my ribs,back and arms and my pain lasted about two and a half days, I was told it was theCells getting pushed out into the blood stream but am sure they could have joined an ordinary Queue and caused no distress 🙂

Its been said I said it and am saying it again its working and home is soon going to be upon you Both.

Stay Strong and Well

Love Tom "Onwards and Upwards" xx

[VickiParticipant]

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

[HelenParticipant]

Hi Vikki
Sounds like he's doing ok, I couldn't walk anywhere when I was in hospital, so going up and down stairs is good. I spent 2 weeks going from bed to loo, and back only!:-( No sitting in a chair, no tv, no reading ,knitting, or magazines. I used my phone and iPad a bit. It took me all my time to shower every day and drink enough to keep the nurses off my case. I lay on my bed snoozing and telling myself I just had to let it go its course and I would be OK eventually. The first walking I did was the day I went home and the blessed Tim had to almost carry me. Though I was determined to hang on to my dignity, a wheelchair probably should have been my first option. Chin up
Love Helen

[tomParticipant]

Good Morning Vicki and Colin

Yes It Looks like you are on the HOMEWARD BOUND Colin 😎
Its Good to Blubb its a release and it works :-D, am sure the pains will soon be sorted.

Love Tom "Onwards and Upwards" xxx

Ps am on here at this time of the morning because the three grandkids we are looking after are Up and At em Lol.

[DaiCroParticipant]

Hi Vicky & Colin,

I think it might be a case of the medics being a little too generous with the GCSF. They wanted to get his bloods flowing and his platelets growing, so GCSF was thought the best way. 😎

Now it seems that all is well with Colin's bloods but the after effects of the injections are hanging on… and you all have to wait for the GCSF to work its way out of Colin's system. That shouldn't take long now that the bloods are flowing and growing… except for the pain that is… but as I said, that could be simply a case of overdose… but for the medics, I imagine they wanted to be safe rather than sorry… and they more than likely want his bed… if that is the case then they got that one wrong.:-D

Home very soon I imagine… and then he can walk, doze, sleep, watch TV, read etc., to his heart's content… just remember David's and my advice… a moratorium on visitor's and a healthy diet… just for the first few weeks… perhaps until his first full bloods test, which will tell you where he is regarding:

1. Neutrophils
2. Platelets
3 HGB

If those three look healthy enough, with the right amount of growth, then perhaps you can both start to relax a little… for the next 6 months or so.8-) 🙂

Watch him like a hawk when he starts suggesting adventures… he will feel ready but as sure as eggs is eggs he will suffer for it. His bloods might be Okay, he might be mentally up for it… but his whole system has had a kickstart after being completely shut down… and his body will be weakened from such a long time doing nothing.:-P

My best wishes for a speedy recovery and my very best regards to you both.:-)

Dai.

[VickiParticipant]

Hi all,

Sorry not posted for couple of days, but needed to get my head together to make sure that this pain thing is ok and it really is gcsf related. Well seems like I believe it now. Neutrophils, the real,score is 0.41(he's not had the gcsf for a week so they dropped down. No problem there, and apparently platelets and the like are doing good. He's off all the on another planet medication, and now just a bit of oral morphine if needed. He is walking about the ward a bit when safe to do, Eating a lot better and drinking a lot better too. 🙂

Not counting chickens but home sometime later this week if all stays the same 🙂

Vicki and Colin

Ps Helen, I hope the bedroom DIY is going well. Dai and Tom thanks for your good wishes and don't worry we have a plan when we get home to keep people's bugs at bay :-), you'd be proud of us 🙂

[meganjaneParticipant]

Hi Vicki and Colin,

I am glad to hear that Colin is on the mend and that the pain is under control, fingers crossed for an end of the week release from hospital.

Phil, my husband, is due to go in for his stem cell transplant mid December so I have been following your progress and Chris' as well trying to pick up as many tips as I can. Thank you both, Vicki and Chris, for posting and sharing your journey with us all.

Megan

[ronnie17Participant]

Hi Colin and Vicky
I am starting my SCT on 4th dec just wondering how you are doing now.
Nerves are kicking in a bit as I had a lot of side effect on the 4 cycles. If you would not mind would really appreciate an update from you. Good luck on ye recovery.

Regards Veronica x

[DizzylizParticipant]

Hi vicky & Colin,

I've been following your journey and am so pleased everything is going well, kev ( hubby) had his sct April 2011 and getting him home was the best and in time for Christmas, aside from keeping him bug free hope it goes well for you both.

Keep well love liz xx

[foxy555Participant]

Hi Tom

Sorry to bother you, but just a few questions as you have been through the process!!

Pete has got a date for 5th December, overnight stay in Musgrove Taunton for what we believe to be a blast of Chemotherapy and a line fitted??? Still not got our heads around all the terminology!! (You read all the posts, but when it happens to you, completely different).

He then has to go to Bristol on 17th December for the stem cells to be removed and harvested.

I know every case is different, but can you give any advice on how he will feel after the first appointment???

Getting nervous now!!!

Love Ann and Pete

xx

[VickiParticipant]

Well all, what a day it's been. Highs and lows!

Got a phone call this morning from Colin……guess what when can you pick me up Vicki, I can come home hooray hooray holiday :-). after all the checkouts from hospital we left for home and got home bout 345pm, with a romantic Colin being a little sick on the way….no problem can deal with that :-/

Then we get gone and I do the unpacking…..hesitate on the hospital bag being put away, so I don't, and just to be on the safe side leave some spare jim jams, toiletries and towel in the bag……just for the 100 days. Well colins return home lasted 1 HR 30 mins. Temperature of 38.6 and we hadn't seen a soul to catch anything from. We then had an horrendous journey to hospital. At one point I thought I was going to have to call an ambulance due to traffic jams everywhere due to a collision :-(. So the upshot back at hospital 630pm and I return 1115pm without Colin who is being given I/v antibiotics etc.can't we just do one thing straightforward ahhhhhhhhhhhh!

Ann/Pete, spotted your post. The harvest side of things although Colin had 3 goes, was not as bad as we thought. It was the gcsfs that made Colin feel awful, like the flu, tired, achy and nauseous. But the harvest itself was painless and theynare lovely at Bristol. He was quite apprehensive about having the line in, and it did take some getting used too. The rest you know.

Veronica, Colin was very very nervous too. As you can see we are not out of the woods yet. However I would say that the information you are given is pretty close; first week reasonable, second week feel pretty lousy with co ottomh,tummy troubles, trying to eat with a bad mouth, and the third ish week getting a bit better. It all sounds very harrowing but when you are faced with it, as supporter you get through it, and Colin felt too I'll the second week to care…..this sounds bad but the hospital staff, procedures and the care given is second to none and they reLly do know what they're doing. Pleased ask away and will do my best to help

Vicki, and Colin who clearly likes hospital food so much that he went back! Hysteria kicking in know so I'm off to bed.

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