[VickiParticipant]

Hi Helen and Wendy

You two are going through it aren't you! Wendy FYI Colin's light chains at diagnosis Was 35,000 and his bone marrow had 92% so it was well up there at the beginning! Remarkably he had no obvious kidney damage which they were gobsmacked at….

Helen, sorry to hear you are complicated 🙂 I didnt realise that the bone marrow was a mix and match type thing! This mm is a b isn't it. I so feel for you all, not meaning to sound patronising, and I feel sorry for myself as I can't wave a magic wand to make sure Colin is totally well! I

Hope you both start to get dividends from your treatments soon

Vicki and Colin x

[VickiParticipant]

Tom,

What a prat that man was but hey what does he or his lanky friend know…..scts do give long remission and why should you not be one of them, and oh yes…..we are all going to die sometime but for all of us lets hope not be any time soon. You and your 8million little cells will sail through this. You can do it, it's a long battle but one worth the fight.

Chins up and take no notice of mr one sandwich short of a picnic xx who clearly doesn't think very far ahead and is totally insensitive 🙂

Vicki and Colin x

[VickiParticipant]

Well done Tom, 8 million plus that's amazing.

Good luck with the next stage and keep us posted 🙂

Vicki and Colin x

[VickiParticipant]

Hi Richie

So sorry to hear of your mums diagnosis, my partner colin was diagnosed in October 2011 and has sct in November 2012. Now recovering slowly! It is all of real shock isn't it…..but please be strong. Medical treatment and the teams are coming on leaps and bounds in treating this condition.

We are a nice bunch on here so please ask away. As colins partner it has helped me as much as him 🙂

Vicki and Colin xx

[VickiParticipant]

Blinking heck Dai,

The first bit of that sounded like a horror story! However at least they have got some kind of plan and it has worked for you. Sorry you have had such a rough time thoug 🙁

I don't get this mm, although Colin is improving in strength and goes to work sometimes at work and some times at home he gets real peaks and troughs Dai. Yesterday he felt rough and he said he felt as low as he had been all the way through? I must admit I thought he would have been better than this by now generally? Then tomorrow he could be up and about like a spring chicken…..

Dai don't you give up you keep the rest of us going 🙂

Vicki and Colin xx

[VickiParticipant]

Well well well, quite literally 🙂 🙂

What a great result and couldn't happen to a nicer bloke, gives us all the encouragement Tom! 🙂 its just got to be the vodka, sure of it. Now where is that bottle 🙂 🙂

Wonderful xx

Vicki and Colin

[VickiParticipant]

Hi jacqui

As far as I remember he has to go down to zero before they start the gcsf injections…..how's Geoff doing , and how are you?

Vicki and colinxx

[VickiParticipant]

Hi Anthony

Just wanted to say good luck with your treatment….back surgery not something to look forward to but best tomget some scaffolding around that spine 🙂

Vicki and Colin x

[VickiParticipant]

Hi all

Given I am mrs 120 questions and event more what if this and that Helen has made me think. Like Mari I am so scared and even more scared of losing Colin I have not thought whether actually he wanted to know the questions I've asked or not and like David we have a game plan before we see the consultant and I never stick to it! Mainly because I am so psyched up by then it all comes out in a rush. Takes all ways and all people…..bloody mm:-( sorry for swear word

Vicki and Colin xx

[VickiParticipant]

Hi Mari and Steve,

So sorry to hear your troubles both…..it sounds awful and this is a useful insight into sct second time round. It must be so sorry for you both. I smiled when you mentioned the email about Steve and wine…..that's my barometer when I know Colin is ok. When he is feeling well ish he has wine, when he doesn't he doesn't if that makes sense, this fatigue is still with us but hopefully things are still ok but he does get very tired……first sct has been bad enough!

The gastric issue…..Colin has also had that pain and we called the hospital, went in once and Gp a second time, they gave his operamazol for gastric and this peptic liquid, which seems to have done the trick. I'm sorry to hear of Stevens health as the last time I remebr your posting Steven had cooked Sunday lunch and I alway use this as an encouragement in my head when Colin isn't do good.

I hope you both get a break away, but where else do we need to be when our uk weather is this good at the moment 🙂

With best wishes and hopes for a better time of it over the next few months 🙂

Vicki and Colin xx

[VickiParticipant]

Hi Annette,

I am very sorry to hear about your dad, there really is no one except the great man upstairs, who knows how long it would be. It's strange as people are fighters and there no rhyme nor reason why someone is with us so long. I can only imagine how difficult it is for you all

Our thoughts and prayers are with you….Mavis is right, the palliative care team and hospice do a wonderful thing 🙂 use this skill and care

Vicki and Colin x

[VickiParticipant]

Hi Dave,

Best if luck with your transplant. My Colin was diagnosed in October 2011 resulting in sct end October/early November 2012. He's now recovering, back at work in between full time and part time. It is a bit much for him I think but if he rested more bed be better I think.

The sct was really daunting, Colin for going through it and me for worrying about it….however it's doable. Sorry your diagnosis was a bit rocky, but according to our Gp they only see a couple of cases in a lifetime of practising, but that seems odd as there are more and more people with it! The high dose chemo will whack that last 5 % certainly! Good on you for going to the gym too!

Best of luck

Vicki and Colin x

[VickiParticipant]

Here here Mavis and all!

Dai is a star, who is a font of all knowledge. His words mean something and he's well clued up as they say :-). This condition will get a cure, and I am certain it's coming soon, I am hearing more and more that this condition can be controlled by tablets. My only thought is that it seems hard to detect. Our doctor said one or two patients in a lifetime of being a Gp…..how can that be, there are loads of people with it!

All of you with the condition deserve the biggest break, and we supporters will be at the front of the queue (well behind you guys) to cheer 🙂

Vicki (Colin too tired and in bed,)

[VickiParticipant]

Hi jacqui and Geoff,

Hope things are going ok…..thinking of you. It's a rough ride but it will get better. As jean said I spent every day at the hospital with Colin from 3pm to 8pm. Went to work from7am til 230pm. My work were great and I couldn't have been more supportive. When Colin came home the first day he was then back in for a week! However when he came home proper I was at home for one week, then back to work the following but like Tom left food nd drink stocks, arranging for occasional visits from family who were bug free.

The main thing was tiredness and a bit of anxiety at the enormity of it all. Be warned it is very very tiring doing work and home stuff and it does catch up with you…..I am whacked now but I can't stop worrying about what this pain or that is, why is Colin so tired etc, but it will get better 🙂

Tell Geoff to keep his chin up. Sian told us they have a very good record for scts at Cheltenham 🙂

Vicki and Colin xx

[VickiParticipant]

Hi Helen,

Glad you're feeling a little bit better, Cornwall is the best place in the world; back pack, coastal walk, Cornish pasty, glass of Chardonnay overlooking the sea…..what more can we want? Colin and I really must get away but he doesn't seem to be able to string a full week together being well! And when you're like that there's no place like your own bed. We will get there damn it!

Hope the knitting needles are still clicking!

Vicki and Colin x

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