[VickiParticipant]

Hi Jane

Sorry you were having a downer, hope you are feeling better a bit now! The waiting before treatment starts is nerve wracking and frustrating, wanting to get on with it, but being scared Colin for himself, and me for both of us! How to cope, what will happen etc…..but you do cope because you have too! It's the lifeline to make things better. That said though its hard and forum friends are great support. The myeloma nurse and team are wonderful. I couldn't believe how accessible they are and kind and understanding to all involved.

When it was time for Colin to lose his hair I was getting more and more stressed about it, typically he said nothing. I think it's hard for anyone but seems worse for a woman! A little anyway 🙂 our friend suffered a different cancer lost her hair of course but found some great wigs and ended up replicating one of the styles when her own hair came back! Colin looked absolutely fine without his hair and now it's grown back LOTS he's grumbling because its very curly (you were right eve!)

You will do it Jane, with a good support network around you 🙂

Vicki and Colin x

[VickiParticipant]

Well done ozzy that's great news. Keep in going and enjoy your short break!

Vicki and Colin x

[VickiParticipant]

Hi Ann and Pete

How you both doing. It's really difficult Ann, I remember it so well. The only way is up now! Colin seemed to do well on jelly for a while and then a bit of ice cream, but overall he was like Pete. Once it starts to clear though it goes quite quickly. Someone recommended Jaffa cakes and I took those in, they worked for a while too

Take care

Vicki and Colin x

[VickiParticipant]

Hi all

Jean, good luck for this next week and keep us posted. When Colin had his sct they went out of their way to tell us that the consultant would be on at weekends! I can vouch for it, I saw him…..he didn't smile much but he seemed to know what he was doing ! Frank will soon be out again and watching Man U to his hearts content.

Take care all, and no illness anyone!

Vicki and Colin x

[VickiParticipant]

Trish and Peter

Good luck with this next course of treatment, hope its a very smooth ride for you all!

Vicki and Colin x

[VickiParticipant]

Hi Phil

The randomisation was a bit weird, we had a chat with the trial team and they seemed to be gauging our thoughts before doing the randomisation. In the end we came to the conclusion that Colin didn't want to take it, who knows if that's the right decision or not, but only time will tell.

Good luck with yours though, by the way I get the impression it's normal for bloods to jump up and down a bit 🙂

Vicki and Colin x

[VickiParticipant]

Hi Jane

Sorry to hear your news 🙁 , my partner Colin was diagnosed in October 2011 after having what we thought was a bad back ha ha! He had an sct in November 2012, after having 7 cycles of rcd (revlimid, cyclophos and dex). We were really scared to begin with and wondered how the heck we got here! It's amazing how many people have to though, we went from never heard of it to this person and that having it!

It is a rough ride sometimes and Colin had quite a few infections but the medical teams are so skilled and knowledgeable they can soon put it right 🙂

Good luck to you and if we can help please ask 🙂

Vicki and Colin x

[VickiParticipant]

Oh jean and frank,

What! That's pretty bad isn't it! People are only human but it doesn't help with all the stress and you having to wait so long anyway! Best of luck for Monday! I am sure you will be keeping a close eye jean!

Vicki and Colin xx

Ps hope you enjoyed Barcelona Helen and you are feeling ok despite the scores being a little on the increase 🙁 , refuse to use relapse, hate that word !

🙂

[VickiParticipant]

Hi Pete and Ann

Sorry to hear of peters swallowing problems. I remember that so well when Colin was in. It was horrible as there is nothing that can be done, other than wait for it to get better. Remember pineapple juice is supposed to be good to help soreness and ease the blistering?

Hope you are ok too Ann x

Vicki and Colin x:-)

[VickiParticipant]

Hi Vicki, from another one, trish and Peter,

Sorry this is a definite relapse. What a blow, however everyone seems so positive about this velcade that its got to be a winner. I hope that the response is a speedy one and then you can enjoy many more happy nights of curry and wine 🙂

Onwards and upwards as Tom would say!

Vicki and Colin x

[VickiParticipant]

Hi nicki

Sorry to hear you are having a tough time, and that word relapse, I hate it! I can understand how you can develop some emotional, mental health issues in dealing with this condition, as supporter or sufferer! It is so challenging and the fatigue of being a supporter and the worry of caring for the person you love can have some significant impacts. Even though Colin is now in remission, although cock a hoop with the results, mentally it'll take me a lot longer I think to relax a bit! Glad to hear that you and Sam are having therapy….they're worth their weight in gold 🙂

Thinking of you both

Vicki and Colin x

[VickiParticipant]

Hi Ann and Pete,

We are ok…..Colin's hair needs cutting! Hey you guys we remember that sweetcorn smell. It's weird. It is a really tough time but well worth it, although asking coiln afterwards he said never again! Colin did struggle with food, partly due to mouth and mainly due to Rubbish hospital food,mat their own admittance. Good luck with the isolation, but once the count gets down, the only way is up :-). Soon be out playing golf again Pete!

Glad to hear that biker chris is doing well….and how's the hair doing?

Jean and frank, keep your chins up and rooting for you all. There's no two ways about it….this mm is a bxxxx but the sct is one of the big battering rams to sort it! Hope you get the call soon, the waiting is a nightmare, and when frank gets used to the line in, it's an inconvenience! Fingers crossed for you all.

Keep us posted as support is so important, we both really appreciated it, and especially me as Colin was too ill to care initially but it was nice to read everything out when he came home 🙂

All the best all

Vicki and Colin x

[VickiParticipant]

How's it going Ann and Pete?

Vicki and colin

[VickiParticipant]

Hi Dai,

Sorry to hear of the waiting, we too have to wait and now expect it. We are gobsmacked if we are even within half and hour of appointment. That said Colin has elected for no maintenance treatment, due to wanting quality of life so our next appointment is in two months time!

You made me laugh about Janet's baking, that was hilarious and hope you enjoyed it and it compensated the dex effect 🙂

Hope next time you get the treatment and hope you don't have to wait too long for it!

Best wishes

Vicki and Colin xxx

[VickiParticipant]

Jean

I hope the Hickman line went ok…. The hospital was really good. When Colin was in isolation they let me stay through from one visiting time to another. It was usually 3 to 430 and then again at 6 til 8. I just stayed there all the time, quiet in the corner, and they'd probably say asking lots of questions, :-). I gave the nurses some sweets etc throughout the 3 weeks and that helped, but to be honest they were so good and understand the horrendous pressure throughout that 3 weeks, (or 2 in franks case!).

Keep us posted and so much good luck….the waiting must have been awful….I know we waited too 🙂

Vicki and Colin xx

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