Hi Charlie
Just wanted to say hi and glad to hear from you. Just to give you a bit of encouragement, Colin has had his SCT and whilst it wasnt easy, it seems to be paying dividends at the moment.
Keep your chin up and keep going:-)
Vicki and Colin x
Oh no this is turning into match of the day :-)……
Offside rule!, footballers, what can we say. Come on the arsenal 🙂
Jean, gosh I hope Frank doesn't have to wait til February. Like you we wanted it over, but when it came we were petrified :-(. Still not counting our chickens but Colin seems to be progressing well so fingers crossed. One thing to watch for Jean is getting over tired and stressed yourself. In hindsight it has been the most shattering nerve wracking experience of my life. It's caught up with me and im trying hard to get some normality for me back but it's harder than I thought. I reckon it's all about pacing yourself….here we go back to football. It's a game of two halves 🙂 before and after SCT 🙂
Happy Christmas to you all
Vicki and Colin x
Hi Peter,
Hope your back pain has settled! Funny you should say about chemo easing bone pain. A back specialist we spoke to said that there were many cases where back pain stopped after receiving chemotherapy!, bit extreme but if you get this extra benefit from your treatment that would be great!
Hope your Taste for red wine is returning. Colin has managed some wine since coming out of hospital, so slow but sure recovery.hope you are enjoying your time between harvest and SCT….when is your SCT. You may have said but we might have missed it 🙂
Happy Christmas
Vicki and Colin x
Hi ann and pete, Jean and Frank,
So glad to hear from you guys and really hope that things are going well for you both!. It really does bring back some short term memories for Colin and his injections. The gcsf injections didn't cause Colin too much pain at all, hence why we had so many goes at getting the cells out!
Hope that pete and Frank are not feeling too rough after the chemo. Colins hair started to fall out three weeks or so after he had had the chemo, which he tells me he felt really fed up when it was coming out in clumps, but felt much better once he had got it shaved off. In fact he has said that he's really used to having no hair now!. However they need to get a good supply of hats 🙂
Colin got a programme of dates from the hospital starting with the check up, then harvest dates and the SCT date. I reckon it was 2 to 3 weeks from harvest cells to going in for SCT. The waiting was the worst but once it got going there was no going back and we sort of went with the flow. From experience Jean and ann, keep your chins up too 🙂
By the way, not been on at the forum much this last week or so…..Colin doing fine. Unfortunately his elderly father has been diagnosed with terminal cancer….hard time at the moment :-(, never rains but pours!. That said if we can be of any support to you guys please ask, it's still very fresh in our minds.
Hope you are doing well chris 🙂 hope you are lining yourself up for a happy happy Christmas 🙂
Vicki and Colin x
Hi Dai,
Just checking in and hoping that the new regime will work wonders for you :-). Go on you can do it….you deserve the success as you are so supportive of the rest of us!
Vicki and Colin x
Hi Charlotte,
I agree with the others, if you have any concerns, ask for a pet scan if that's what's required. They can only say no, and if they do ask them to explain in full why one is not necessary! I am sure everything is ok but to reassure yourself it's worth it. Also with regard to blood tests I reckon they are pretty good at picking things up in minute detail.
Best of luck 🙂
Vicki
Hi Jean,
Re avoiding infection before SCT, yes that's true because they won't do it if there is infection…..not in Gloucestershire anyway. I asked the SCT nurse about what if I got a cold etc. She said if Colin caught a cold they would probably still do it, but they wouldn't do SCT if he had ear infection or sore throat infection. A friend of my parents has mm too and he had an ear infection and they would not do his and cancelled him for 6 weeks for it to clear!
I am totally with you with the Dettox etc. I took anti septic wipes in to make sure I could wipe over the suffices, anti spec tic wipes for colins hands etc. At home same regime with door handles and the antiseptic sprays for visitors. We have kept those to a minimum, I have not seen half my family for at least fortnight as they have colds and throat infections. At work I nearly had a nervous breakdown when someone came in to work saying they'd been sick the night before.my boss saw the look on my face and sent them to work in another office. I am always hand sanitising! You go for it better safe than sorry 🙂
After franks sct make sure he does take it easy…..as soon as they start feeling better (Colin!), good in one way, but they do far too much :-), shops, crowds, too many people with colds!. I hope you can get this over with before Christmas as the waiting leading up to it, we found awful :-). Frank will soon be back watching united!
Vicki and Colin x 🙂
Hi Emma,
Really sorry to hear about your mums current situation. I won't say keep,calm or try not to worry because I'd be the same. Although not sure what the issues are, I know that the medical teams always give you the worse case scenarios and will never say 100percent that everything will be ok because they did not do that when I was so worried about Colin.
I know won't be much help to you, but as your mums says, quality of life is so important, especially for someone who has been used to doing things all for herself.
Best of luck and we really hope things work out for you both 🙂
Vicki and Colin x
Hope today went well Keith 🙂
Vicki and Colin x
Hey chris,
Good to hear from you and glad that you and Lena are having some good times! Careful not to over do it now!
Colin is doing good too, touch wood. However now I am back at work he's got free licence to over do it and then is totally clapped out by the time I get home from work:-). still it's great to know the SCT is done, hope Lena is more relaxed than me though as I am still watching Colin like a hawk, which possibly is getting on his nerves :-). Will try harder to relax, which even a glas of wine won't do!
Ann and pete, how's it going? How are you both. Set up a thread. When is the SCT scheduled for after the harvest? Hope pete is feeling a bit better. It did wash Colin out, and beware his hair started to fall out 3 weeks after that chemo…..we thought he had got away with it……not!
Ask any questions if we can help. Col still at home but over doing it!,
Take care Lena and chris,
Vicki and colin x
Hey Peter,
Who is the show off then!, that's brilliant. Colin only managed just over 2 million in total so you are a star. Going off red wine……just think you will have a few bottles to catch up on when you get better post SCT. Remember don't over do it….I'm having a job restraining Colin (not literally) :-), now that he feels a bit better.
Start a thread so that we can keep up with your progress x
At least you get to enjoy Christmas and get yourself match fit!
Vicki and Colin
Hi Dai,
Good luck with this new set of treatments :-), come on beat it into touch like the c diff……you do tell a good story and Although it's not funny you make beating c diff entertaining 😉
I know nothing about this bendamustine, but all I know is that you've got to hang about for manège sake, and the rest of us because for me I get kept up to date on drugs progress from america and what that all means! Hey shame about the revlimid but I've no doubt something good will come up soon to beat it.
Know what you mean about the cannula as coli. Had real problems when they wanted to put one in when he was in hospital. Though he had blood taken twice now since SCT and they've got a vein twice, first time"
Good luck Dai and keep us posted x
Vicki and Colin x
Blimey Jean and Frank,
That's a bolt out of the blue eh!. Sorry about the united but if that's man it'd then no loss there LOL (sorry Frank!).
It is weird when the SCT cycle starts, I can remember saying to friends how nervous we both were and they said, but that's what you've been bravely working towards! And they are right, however it does seem so so daunting when the reality starts! Know what you mean about outdoors paul, I'm still worrying about that!
The gcsf injections were something that I stayed well away from!. I knew I couldn't have done it so it was either Colin or the district nurse. Colin got the district nurse to do the first lot and thereafter he did it himself. The hard bit for us was waiting for the cd34 count result at, I our Case Bristol, to see if harvest could start…..
Good luck both. As I said to Megan Jane, start a thread so that we can keep tabs and provide support to you both x;-)
Vicki and colins x
Yes ted, keep the fluid intake up!. Helen's description of the light chains was much more eloquent…….medical background see!
Good lick with your results ted and no need to beat the 31000 record!
Vicki and Colin x
Hey Megan,
Just noticed Phil has his cells harvested…..that is great and wishing you all the luck for the 17th. Start a thread up so that we can keep up and also give you both the support you will need 🙂
Vicki and Colin x
