Dai,
That was a lovely post, I imagined it all as it conjured up a lovely image of you and Janet :-). Colin said it all seemed very strange and even now……yep we are still at home!, colin will look at the birds, wander around the house and basically value it all as a new beginning.
Ali, is there a web cam at home…..how did you know I stuck said thermometer in whilst he was asleep!
Tom you are right,at the moment I am feeling very watchful and looking for any issues, I'm still struggling to relax and stil worried but am sure each day that goes by more confidence will be found in both our cases. We haven't ventured out yet as it's been too wet but we are hoping to get a walk in to the end of the cul de sac, or at least when we see the SCT nurse on Thursday. And yes Helen we will need to be both wrapped up as it's getting colder, weird for both of us being at home together
Jacqui thanks for your good wishes, what stage are you guys at?
Best to all,
Vicki and yep colins asleep, it's that time of day 🙂
Andy
That's not the news you wanted and struggling hrough that bxxx weather!. It's amazing how 7m people and there isn't a match. But it just goes to show that it is a risky business and they need all the factors to be right…..no consolation I know. I'm a great believer in medical advancement and reckon in the next few months more donors will come along and…….new treatment coming on line. I told Colin your news and he said a few naughty words for you 🙂
Andy your pps are coming down even though it's been a struggle, keep going and I'm sure something good will come soon. Oh and you and steph deserve a nice meal and some wine whilst your waiting xxxx
Vicki and Colin x
Hey Tom! Lol, can't believe youve got that pain too 🙁
Well we are home :-), have been since 330pm, had supper, col asleep and me not relaxed waiting for the next issue!. Steroids seem to have worked a fair bit.. Colin has been very emotional since being home and weve both had a few tears!. He said it felt strange to be hear? Did you guys feel like that too?
I so hope al goes well, and we remain in our home allowing Colin to recuperate! And get back to wellness!. Those steroids not only batter the pain but his blood results have rocketed. His neutrophils were 4.7 or something, which it can't have gone up that far from like 0.7!, so in the absence of anything to worry about at the hospital I'll now worry about the steroids! :-/
Best to all
Vicki and Colin, who is asleep and I must resist tAking his temperature a 100 times!
Andy
Just spotted this post! What great results. See I put it down to that holiday in Greece, the minor blip was cos you came back to blighty and it had to get used to the cols weather again! Sorry about the potassium, Colin hated those tablets too. He couldn't keep them down, but unlike Dai he has a weak stomach! Oh and a bit of good news, we are home. We've been home since 330pm…..but I can't relax and everything he looks hot I feel a temperature check coming on!
Good luck with the professor!
Vicki and Colin x (yep he is asleep again!)
Stewart and vanessa,
Hello, sorry to hear your diagnosis. My partner Colin was diagnosed October 2011 and had his SCT beginning 29/10/12. He was discharged Tuesday but he had a little infection blip so we had to go back in Tuesday night. He's probably coming home to tomorrow.
He was on the myeloma 11 trial, having cycles of cyclophosmahide, dexamthazone, and revlimid. He responded well to that and hence where we are. For the supporter (me). I did not know whether I was coming or going, distraught, pretending to be in control, angry, upset, needing to be in control to make it right, helpless etc such a range of emotions!
I would urge Vanessa to join this forum, or at very least make sure she has a few people to talk to about her worries, concerns, frustrations etc. It was hard talking to Colin sometimes as I didn't want to let him be worried about me, or even feel guilty about being Ill (he said he felt guilty once!). Happy to help whereever I can. Life is different but it doesn't mean it can't be quality 🙂 best of luck on your journey
Vicki and Colin x
Andy
Thanks, have they found a donor match for you then? I remember reading an entry on the myeloma beacon site from a man who had donor transplant. Yes I think it's rough but he seemed so much better and making bit improvements. Also like the own cell transplant I observed how experienced and knowledgable all the staff are…..not much consolation but they've seen and done it all so are very sure what to do in the very strange world of transplant. Hope you had some good news anyway.
This polymyalgia thing, he did not have it before SCT and I reckon it came on after. It seems to be a rheumatic thing of the muscles…. Ourselves when I googled it I picked to read worse case scenario and that unnerved me. However I suppose what was worse than the myeloma thing!. They said that if the steroids made an immediate difference then it's more than likely to definitely be polymyalgia. And sure even today colins arms are much better and he can do more. Just another thing to get used to and as long as it's not life threatening that's all that matters.
Oh and finally, if all goes well he can come home tomorrow :-), hopefully for longer than 1 hour 30 mins!
Take care all
Vicki and Colin x
Dai you are so funny! That made me laugh.
Tina give yourself a pat on the back. I thought Colin would never eat anything again. When he ate a small pot of fruit in syrup I nearly did a victory sprint round the hospital. I get the impression from the others that it's a long slow progress and they've really stressed that to us at the hospital so you do a slow but sure approach to it 🙂
Vicki and Colin
Chris
Just wanted to day the very best of luck to you, and hope that your recovery carries on in leaps and bounds. Those neutrophils up to 0.95 that's amazing. It must be that beer you've been drinking!
Do start and new thread so that Colin and I can keep up with your progress!. Colins neutrophils have come back up to 0.7 which was after a single boost of gsct. All the other bits in the blood seems to be doing ok. He's been diagnosed with something called polymayalgia which is some kind of rheumatic in the muscles. So he's on steroids now which have made a difference already. I am worried about it due to his just having had an SCT cos he didn't have this before!, however they seem unconcerned.
Enough of my ramblings, best of luck to you and lena and a lifelong remission
Vicki and Colin x
Hi ann,
Re the line and chemo. The line was fitted in a theatre at hospital so I wasn't allowed there but I was allowed to wait with Colin beforehand a bit and obviously the usual after. Colin was a bit sore and a bit worried about getting used to these dangly bits protruding from his upper chest/arm. But actually he did get used to it and it was a godsend for taking bloods etc when he was (sorry is still!) in. It just needed to be flushed weekly with heparin. Re the chemo Colin did not have his on the same day, but I wasn't allowed in with him for that so just hung around til finished.
Re the injections, that will be the gcsf injections I've gone on about, they are used to mobilise the stem cells I to the blood stream. They are done specifically to a time, on the first go, they were 6pm at night. The first time round we got the district nurse to do it, but as Colin had done his own Fragemn injection during treatment the next time he did it himself (they said I could do it form him but politely I declined!.
It is a bit nerve racking but it's all to the good, getting those little cells out. Sooooo good luck with your harvest. Are you going to Bristol for that? If so they are great, look out for the nurse Debbie, she is lovely and so is dr sohail. In fact they are all lovely there, if that's where you are going!
Keep us posted. It's amazing what you can put up with when going through it;-)
Vicki and I think Colin is coming out tomorro, hopefully for longer than one and a half hours
Hi all,
Chris, you are sounding quote chipper so hope things are on the up for you. I was amazed that you did a bit of driving! Well done, be careful not to over do 🙂
Well with regard to colin, next saga. They are now saying they think the pain he is getting in muscles is a condition called polymyalgia. Apparently his inflammation marker is way up, and consultant has said this is the likely cause. They are starting him on steroids today, which apparently if that's what it is start to react immediately. The mistake I made was googling this condition……we will leave it there! Apparently he could be on these steroids for quite some time, and ironically they can make you more prone to infection! How much more prone can you be than with myeloma! Anyway that's the next course of action.
To make matters worse his neutrophils have dropped back to 0.2, which they tell us is normal, and they are starting the gcsf again, which they did last night! To be honest we are both so flabbergasted with it all that we are just ploughing on like a couple of robots!. Also they apparently have not done an xray on arms and shoulders so I don't know what the xray was before so that still needs to be done. I was a bit feed up yesterday as it does seems they've let this pain this go on for a long time, especially when we both told them he had had v little to no pain with gcsf when mobilising. Anyway, this is another twist and turn…..as long as the myeloma is out of the way that's the first hurdle crossed.
Best wishes to all. I'm conscious I've not been much support to others these last few weeks, but it's just had to be focussed on Colin, and achieving the goal of being out of hospital for more than an hour and a half!
Vicki 🙂
Hi all,
Andy, good luck with your visit to the professor. Really hope you get some good news as you are due some! Tom, thanks for the cyber hugs! That's helped :-). Colin does still have the line in and they did mention that possibility. You are right about the hard work, it's an hour each way to the hospital and with the really heavy rain it's been tough, and for Colin I know he has tried to be positive but a big blow when we had to go back in so soon! Still hopefully they can get to the bottom of these pains in his arms,
Chris/Ali thanks for your posts, they are saying now that they think his arms are over sensitive, but i don't know to what?, I am seeing the SCT nurse or consultant today so that they can explain to me where we are with this…..it's an interesting point you make their chris about the blood pressure testing etc. Colins arms have been so sensitive they are now taking it on his leg! He was low yesterday but seems a bit brighter today, fingers crossed we can get to the bottom of this and move on!
Stay well all,
Vicki
Hi chris
Just wondering how you're doing now you're at home? Colin still not back home yet? Have you had anymore pain in your arms? Colins is still there?
Vicki
Hi all,
Andy, thanks for your support…..how are you doing? Hope they are giving your pps a battering.
Tom, you're right I reckon it is the nurses as they are pandering to his every whim!.
Temperature seems to be more normal, not sure of the cause yet, still waiting for some other bloods. He is pretty fed up, and the pain in his upper arms has not got any better!
Still let's hope today brings an improvement, and less rain but I don't think so. One out of two would be good!
Vicki
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.
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 🙂
