Hi there,
Just caught up with this post. We do hope all goes well for you and there are lots of positive stories on here…..that guy with the long remiss ions, wow 🙂
If you are able to go through with the second sct that will be great as it buys the time for the researchers to provide more far reaching treatments. They are building on the basic ones all the time. I hope the hiccups subside, my Colin really suffered with those, tried everything, holding breadth (not too long!), breathing into a paper bag, boo (the shock idea). They only worked to a small degree:-)
Best of luck
Vicki and colinx
Hi heather,
Welcome. My partner Colin was diagnosed in October 2011, it was like a miserable bolt out of the blue! And like you we were shocked to the core. However he has had several months of revlimid, cyclophosmahide and dexamethasone resulting in a stem cell transplant this last October 2012. He has been out of hospital nearly 6 weeks and all I doing quite well. I won't pretend if was easy for either of us, me the supporter and Colin the patient. That said we have got to where we are and it's doable! As eve said there is life after diagnosis, but just follow the rules, and listen to what the medics say! Best of luck 🙁
Hope you had a great time eve and slim 🙂
Vicki and Colin x
Keith,
Just a quick note to say we hope your treatment is starting to pay dividends. You've gone through the mill, but some of those latest numbers have shown an improvement haven't they? We hope so for you, so come on, gird your loins and make 2013 a gud un! 🙂
Vicki and Colin x
Hi Dai and Janet, and you onwards and upwards Tom,
Firstly happy new year to you all 🙂
Good luck with this treatment Dai, you deserve it, especially after your battles with amongst other things, the c-diff!. You will do it!
Vicki and Colin x
Hi all,
Yep lets all celebrate big and little things…..we've come to the conclusion any excuse to celebrate, and make the most of everything! Colin is still happy to be home, even though I nag him(not much :-)), to slow down! Helen it's great to hear good news stories, they sure helped, and still help us now. It's good to be part of others happy milestones 🙂
Vicki and Colin x
Hi Megan, frank,jean and Tom,
Firstly Megan so pleased to hear that phils neutrophils are on the way up. It's such a good feeling when that happens isn't it!, for you and Phil both. The medical teams are so thorough with watching the infections. Colin and I were both extremely worried about that but we could see that the hospitals have an absolute lorry load of antibiotics and different pills and potions to help the patient…..which is good. You made me laugh about the drip stand…..I've got visions of this thing being moved in and out of the room and just ignored because Phil is determined its going! 🙂
It's good news to hear they are starting to talk about home time…..it's great and so frustrating if its not on the day you expect, however that's the time when it's a mixed bag of absolute elation mixed with scared because you guys are 'on your own!). I remember that very well!. Of course your not really going it alone, but it just feels like it as there are no medical teams sat at home just in case :-), however it's a huge huge emotional happy time when they do come home (see dais previous posts, he described it so well!).and don't worry about posting so much, it's helpful to you and all of us who have gone through this process!
Jean, hope frank gets his date soon with those multi million number of cells!.
Happy new year to you all, stay well
Vicki and Colin x
Hi Dai and Janet,
Glad you had an uneventful time, less poor little alfie! We hope he feels better soon and was able to still enjoy santas visit!. We spent christmas eve at the hospital.. Colin got a virus, now on tamiflu and antibiotics!. Thankfully his bloods were well up before to cope…..but now they are down to the basics! So fingers crossed.
Good luck to you with your next phase of treatment as Tom would say, onwards and upwards 🙂 🙂
Vicki and Colin x
Hi Megan Jane
We did think about you over Christmas. It must be so hard dealing with it at a festive time when others are jollying it up! Still as others have said, the more days that go by, the closer it is to getting Phil home. It really is such and individual journey. Colin did not have much sickness but he had the tummy upset. His was more to do with terrific pain in his arms, which apparently is settling. You must look after yourself too Megan. I am reaping the benefit now having been absolutely shattered, ending up with a stinking cold and cough (not as long as Helens cough I hope). I was due this due to exhaustion and worry.
I know what you mean about worrying about the medics, but it's hard when your loved one is Ill and you want them better. It really is a roller coaster…..Colin ended up at hospital on Christmas eve with a cough and cold,. We wer there for 6 hours! Now he is on tamiflu and antibiotics! just when we thought the story was concluding, and his bloods have gone right down due to fighting this latest bout!.
Phil is in safe hands Megan and like others have said, he needs you to keep well so that he doesn't have to worry about you, and that you have bags of energy to look after him when he comes home 🙂
Vicki and Colin x
David
Very best of luck….no need for coffins. Will just be a blip. You are an inspiration to us with your cheery spirit, so no relapses allowed here 🙂
Have a great Christmas and new year!
Vicki and Colin x
Hi Megan and Phil,
Just tuning in to see how things are going and wishing you both well. Don't underestimate how hard it is for you too Megan. I was and am exactly the same as you…..worrying whilst your there, and when you are away as you can't see what it going on, are they doing it right?, are they looking after him etc etc :-(, I feel like that now and Colin has been out of hospital a month! Colin was actually only sick a couple of times, which he hates at the best of times, but we were told they are very good these days at dealing with the side effects!
Very best wishes to you both. we hope 2013 will be a good one for all of us!
Vicki and Colin x
Megan,
So pleased Phil got his own room, I was telling Colin about the shared situation this morning. I know I would've had meltdown as I'd have been convinced Colin would have caught something off someone else! You just want the best for Phil and I'm pretty sure I'd just be keeping a close eye on what's going on! (bet they were glad to see the back of me when Colin came home…..I was a mrs 1000 questions!. Who cares it's better than worrying!
We found that when colins immune system started to drop it was slow at first and then it went down in a heap!. Theres only one way then….up Colin slept loads when I was there, so the iPad came in handy to do Christmas shopping (weird that was as I didnt feel like it at all!
Look after yourself too Megan, it's really hard for us on the sidelines too, I found it mental torment at times.
Vicki and Colin….and best of luck xx
Hi steve,
Welcome :-), to the group no one would prefer to be in! My partner Colin was diagnosed at 55, having had no symptoms except a bad back, which he's had on and off for years so it seemed no different. Bottom line was he was diagnosed with mm October 2011 and went through induction treatment and had his SCT October 2012, so we are in the getting a bit better stage.
We can't really answer either of your questions but just wanted to let you know there are always options and just wanted to give you some encouragement. I have heard and read that some professors are suggesting that SCT is not necessarily the best approach and what it puts the Patient through is not always worth it as you can get the same results with medication, without any SCT.
So good luck, this forum has been help to Colin and definitely me as his supporter!
Happy Christmas x
Well done Andy,
A very merry Christmas to you and steph 🙂
Vicki and Colin x
Ps Colin in bed with what seems like the start of a cold. Pound to a penny we'll be up to the hospital tomorrow….bet ya! Still 🙂
Hey Megan,
I remember that sweetcorn smell, and was always very polite to say to Colin I could hardly smell it (little White lie as it would waft in and out!), for a number of days I could smell it long before I even got to the door to his room!
Reading your posts certainly takes us both back to a very trying time. I can remember crying when Colin told me he'd got his cells back!. I never saw the machine but I know he had 16 bags!
It's a slow process, and a sometimes challenging one for you and Phil both…..immune system goes down and then the up and then Phil home. A great feeling:-). Colin is still marvelling at being home even though I nag him to slow up 🙂
Thinking of you both 🙂
Vicki and Colin x
Ho ho ho Dai and Janet,
Home for Christmas:-) and we hope top gun Janet did not get a speeding ticket lol!
You guys have a peaceful and healthy christmas and new year 🙂
Vicki and Colin x
