Hi chris,
Just wanted to tune in to say hi to you and Lena and hope you are feeling a bit better. Pleased to hear that you are eating a bit because it's so difficult with that mouth and throat isn't it!. Colin is sleeping at the moment. He has a bit of a temperature so trying to sleep it off . Keep going and hope you are making headway.
Vicki and Colin x
Tina,
That's an absolute pleasure. I feel humbled by all you guys! I'm sat here with Colin in hospital. He's on the bad weekend before the neutrophils start to recover. He has a bit of a temperature so sleeping at minute. I'm sorry there's not much advice I can give you…..will probably be looking to you for advice when Colin comes home:-). But it's so important to support people and we just wanted to let you know we are thinking of you!
Vicki and a sleeping Colin x
Hi Debbie,
Colin drove most of the time through his treatment, but like the others it varied depending on whether he felt okish or not. In terms of holidays we did not bother with any when he was diagnosed, mainly because we were too scared because he was in and out of hospital like a yo yo!. We did go to friends in cornwall for 2 days when treatment ended and we felt quite chuffed with that!
Best of luck to you, your dad and getting this condition under control x
Vicki and Colin x
All,
Thanks so much for the encouragement, both for Colin the major player, and me the minor part 🙂
Colin was ghastly yesterday, but today to my amazement he sounded a bit better and actually phoned me from hospital this morning for a bit of a chat!. I understand what you mean about those special people, well they all are, but there are one or two that are extra special, who give more confidence, faith and yes cheery encouragement. SCT nurse just been in, said all normal, and get the weekend over Colin should start to pick up a bit :-). Food a problem due to bad mouth but thanks to Tom and his experience trying not to worry as much as long as fluids ok!
Chris and all, well have a very very big cyber Internet party when this is done! 🙂
Colin sleeping again now and I'm trying to chill out! Phil and Jan, did you enjoy your holiday?
Best to all 🙂
Vicki and Colin x
Hi chris,
Glad you are able to be eating a bit more x. And also glad that you are managing to tolerate montezumas!. Slowly but surely on the blood counts. They say they start going up and then boom they are off. Keep enjoying Tesco's finest, at least you are eating, which is more than Colin!
Colins mouth is really bad at the moment, so it's just fluids. Although today he was awake a bit more as well. Only very minor montezumas at the moment!
Take care, keep going and best wishes to Lena too 🙂
Vicki and Colin x
Hi all,
Helen thanks for your advice, sorry you've still got the cough, blimey it's been going on. The wet weather in Cornwall won't help but hey we don't go to Cornwall for the weather, just the beautiful,scenery etc. We love it there. It seems like a long way away at the minute! I meant to bring coke in today Helen but was in a rush and forgot. Hope you get some better weather on the next holiday!
Ali, I know what you mean, last night I walked out of here with a heavy heart, and walking in today felt the same. It's really hard. Colin does look awful and he's got a drip in now for fluid. I hate it when he winces, getting things swallowed, and to be honest it's not much anyway. Although I think he likes the pineapple in juice, some jelly and custard. Colin also seems to get on ok with soft cereals and a very small amount of toast.
Mari, I'm so glad to hear that Steven is on the mend. Even having some beer. I can't wait to see Colin have something normal to eat or drink. That must surely meant were on the way then! That's for the information on the food. I am happy to try anything but they are very particular here on what I can bring in.
Eve, as regards mixing up who comes in to see Colin. He doesn't want to see anyone else :-). I think he doesn't want people to see him when he is so rough….even family. So it is just me. It is pressurised but as long as I can try to relax when I am here then it's not too bad…. However that's easier said than done as I am watching his every move and he looks so awful!. But it is good to hear yours and all other stories about how things can improve and a normal life comes back to some degree. We've forgotten what that's like
Still, good luck to all, whether you're improving, still getting some checks done, or well into what hopefully is lifelong remission! Hopefully things will look brighter tomorrow and thanks all for the support. It really is helping 🙂
Vicki x
Hey Tom,
What a charming picture you paint! :-). I am sure that fills you with glee chris!. Sorry you've got the montezumas, however I seem to recall from dais post he had it for 2 days only, fingers crossed!
As for Colin they've got the sick feeling under control but the mouth is starting to play up so got this gel like mouthwash. He's still very tired but a bit better today, in fact stayed awake long enough for us to do a bit of the crossword!.has eaten a small amount. Might take your advice up on the coke chris?
A week today Colin had the chemo roll on til he can come home. Same for you chris 🙂
Vicki
Mavis,
Great news and wishing you a lifetime remission 🙂 🙂 🙂
Well done and best of luck. Hooray!
Vicki and Colin xx
Hi both
Have a great holiday, if ever there is one deserved, it's now! 🙂
Vicki and Colin x
Hi chris,
Hope you are feeling ok, and montezumas revenge, if arrived is not too bad. Bet Lena will be glad to have you home :-). Hope you're enjoying the west wing. Hope the antibiotics are doing their job, best of luck. Nearly there for the upwards trend now. Your post made me laugh about the loo roll. At least I've got a sense of humour…..not sure Colin appreciates my jokes though! 🙁
Vicki and Colin x
Hi Mari, Tom and chris,
Hey chris, that's so kind of you to respond, especially in 'your condition'.you made me laugh about men sleeping through…..are you sure you've not met Colin before :-). Glad you are feeling a bit better and on the up. They seem to have got colins sicky feeling under control at the moment. Neutrophils 1.4 I think today, and mouth starting to feel a bit iffy!
Mar, not good at helpful things! This was the most helpful post and really put me back on balance to read what you've said. I can't thank you enough!. And so glad to hear that steve is recovering so well….and cooking the lunch no less! 🙂
Tom, as for you, the voice of reason and common sense!
Just trying to work out with Colin about some nice things i can bring in that he might stand a chance of eating! Not great deal!
Still onwards and upwards!
Vicki and an awake Colin 🙂
Hi Peggy
My Colin had gcsf injections alone, for the first harvest attempt. That did not work for him. The next go he had cycloprime and gcsf…..that didnt work either. (he has always been stubborn!). His third attempt was gcsf and plerixafor, another injection that guarantees harvest. After all that he only got 2.07m which is enough for one transplant.
Best wishes to you…. The only benefit for Colin with cycloprime was that he got used to his hair disappearing (if you ever do get used to it!)
Still al the best and good luck 🙂
Vicki and Colin x
Hi chris,
Just a little note to say hi and hope things are going well for you. Hope you are enjoying your music. Sorry about the mouth, but the only way is up now as the song goes :-). It's good to compare notes although colins having a real rough ride. The preservative from the 16 bags of cells are making him feel very very sick!
Still glad to hear things going well for you. Tom seems very sure you are going to get the runs though! He is so cheerful isn't he! Lol.
Best wishes,
Vicki, colins asleep again!
Hi Tina,
Can't really give you any advice as we are in the thick of it, at the moment, however just wanted to give you a few words of encouragement. It must be so hard, but just focus on a day at a time. I find that less scary than thinking about months ahead. As all the others have said you will turn a corner!
Vicki 🙂
Hi all,
Thanks for the advice 🙂 I do feel better for catching up on sleep this weekend! I'm here at hospital. Well we do not do things the easy way! Apparently week 1 is supposed to be the easy week, and people usually a bit bored, bit tired etc. Well since Thursday Colin has been feeling like the pits……his has felt so nauseous they've now had to put a driver in to manage the nausea. Apparently he had 16 bags of cells returned, all with the preservative in, all of which have made him fell wretched. He and I are both dreding the next bit…..if this is supposed to be the ok bit. He had definitely lost weight already and he looks poorly, if that makes sense.
I feel a bit overwhelmed and upset by it all today….and really worried about the next bit. Sorry to moan 🙁
Hope all is well with you all.
Vicki
