[VickiParticipant]

Great blog Tom, and yes this treat,net doesn't come cheap!

Keep going it will be worth it!

Vicki and Colin x

[VickiParticipant]

Hi trish

The waiting is so hard isn't it! Hope the results are as good as they can be. Plenty of reassurance and then knock the mm thing into touch x

Vicki and Colin x

[VickiParticipant]

Maureen

I hope Ian is home soon, it's so hard isn't it. The other half is just that! Physio will be good and with perseverance , not always easy, things will come good 🙂

Vicki and Colin x

[VickiParticipant]

Dear all

Thank you so much for your kind words and support. It's been a funny old week really, and we still can't get our heads around it! Being normal is a lot harder than we thought! The extra good news was that there was a possibility I might have been made redundant (Vicki) and had to compete for my job…..heard yesterday that I got it :-). So good news all round.

We have been so encouraged when fellow sufferers have had good news, it really spurs us on, so hoping others will get the same encouragement. For those having another battle….keep battling and for those in the same position as us….keep going and long may this mm thing stay away 🙂

Best to all

Vicki and Colin 🙂

[VickiParticipant]

Hi David

Sorry to hear your mm is on the move….on a positive point as Keith said, it's not a huge leap. Hope the MRI scan doesn't reveal anything untoward, keep strong and as Tom says, on wards and upwards xxx

Vicki and Colin x

[VickiParticipant]

Hi frank and jean

The chemo that Colin had lasted about 35 minutes! Before the high dose chemo he had lots of other meds/ fluids. I was there when he had the chemo….I was amazed that a little bag for such a short time, could do so much damage! In a good way! There is no doubt it's scary, in different ways for both you and frank but when the end results come it feels so so good, and for that we are all thankful.

When does frank have his line in? When will he be in for the replacement cells. Keep up posted and please if we can help with anything let us know!

Vicki and Colin xxx

[VickiParticipant]

Hey Ann and Pete,

How did I miss the start of your sct! Ann, keep us posted…..keep your chin up and tell Pete he will soon be swinging that golf club again. It is a hard road but boy it's worth it!

Take care and if there is anything we can help with let us know

Vicki and Colin xx

[VickiParticipant]

Hi all,

Thanks so much for your support. It's so good to know there are people out there who understand. Tom your a show off with the drink, I have one glass and start to swim, two don't go there and three are hangovers are us!

Ali, sorry to hear your mum has had a rough time, I often think of you all as she was our benchmark. I don't know what the next stage is and no one has mentioned immunisations….well see. Hope your mum is feeling better 🙂

Hey chris and Lena, great to hear from you and glad you are doing well, wondered what had happened and was about to put a call out!

Babs, thanks for the detailed response and thanks to you all for your advice :-). Keep everything crossed for us tomorrow 🙂

Vicki' and Colin xxxx

[VickiParticipant]

Jean and frank,

Firstly what a lovely picture, is that a grandchild there :-). So lovely. Time to put the Vicki head on and get someone to be a bit organised……question when and where's the bed. It's giving frank too much time to think and you too…..we have a friend of the family who was due to have sct same time as Colin but due to one thing and another , cold, infection etc he hasn't had it yet and it's playing havoc with their minds…..but there seems to be health reasons. Why has there not been a bed for frank. As frank is fit I don't think the looming 70th will make any difference but the time delay or worry and doubt will.

Keep at it and in the meantime, enjoy your grandchild?
Vicki and Colin

Ps Ali how's your mum doing? Colin has appointment at hospital next week 20th to get bmb results and he's had the paperwork through to consider the randomisation options, he doesn't know which one he's got but he's dreading taking revlimid or the other one again due to the side effects. How's your mum doing on it?

[VickiParticipant]

Hi Dai,

Well what a mixed bag…..these light chains, never know where you are with them but at least they've gone down a bit even though they were higher than you'd first thought….does that make sense?

What a great win Wales had against France…….France for the wooden spoon, is that possible. Next is myeloma beaten into touch and a treatable curable condition…..roll on 🙂

Vicki and Colin x

[VickiParticipant]

Helen,

When I read your post I could've screamed, bugger! You can't be…..could it be a blip! Damn this mm, but you can put it back into its box. It's a blow but you can do it. Enjoy your Barcelona trip, relax and one positive……no cough! 🙂

Vicki and Colin x

[VickiParticipant]

Well done pat, I can relate to achieving the small little milestones as that what Colin says. But they're not small they are whacking great achievements, keep going 🙂 good on ya x

[VickiParticipant]

Tom,

When We read this…..hooray hooray hooray hooray. That's so so brilliant. You and young bride up the club now I bet. 🙂 now what's in that vodka. Must be something special. What a brilliant result and you deserve it after all the support you give the rest of us 🙂

Onwards and even more upwards :-)))

Vicki and Colin x

[VickiParticipant]

Hope you guys never need them 🙂

At lest you have them in the bag though 🙁

Vicki and Colin x

[VickiParticipant]

Hi jean and frank,

Try not to think of the pps! The consultant never mentioned what Colin's was before we went for sct so we had no idea! Megan is right about the cleansing, we couldn't get our heads around the fact that they were putting old infected cells back in. When we saw the stem cells nurse she explained to us. Firstly there is the induction treatment that starts hitting it, then the big dose of chemo. In addition though the mm cells are stored at something like minus 180 degrees and apparently they don't like low temperatures so that kills them off as well. So if there is any residue when it does back in the high dose chemo should battle that down.

I hope that helps…..the waiting is definitely the worst, if felt like an age when we were waiting, and after the failed attempts at harvest! It doesn't get any better though, Colin had his bmb on 24th jan and our appointment is 20th feb. to get the results. It's all I can do not to ring up. I was cared before and scared after now:-/ . I do wonder how its possible to get back to some normal.

However I do hope you get a bed soon to stop the negative doubts creeping in, I know we did! However I still believe this sct is a lifeline. Chins up, take care

Vicki and Colin x

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