[VickiParticipant]

Well done Jackie and Geoff

Great news, feels so good doesn't it! How's Geoff doing in himself? Are you ok too?

We are at EJU to tomorrow for 2 monthly appointment…..always get nervous so keep fingers crossed for us 🙂

Well done you guys 🙂

Vicki and. Colin x

[VickiParticipant]

Hi there,

So sorry to hear you are having to go through more tests and stress. Hopefully though you can get some positive respite from it all for a while.

Best of luck

Vicki and Colin x

[VickiParticipant]

Hi there,

It is very difficult that's for sure. You feel how you feel. We would all wish our partners never had this condition, shocking, invasive and ruins the normal lives we all had. Who wouldn't crave that. We still haven't got over the shock and Colin was diagnosed in October 2011!. However it's something we can't change!. I would suggest you do have some time with your friends but also find time to do things earlier evening etc. we tend to go out with friends for lunch on the weekends or early evening then if Colin gets tired its not a problem, he doesn't miss out and we can enjoy stuff together. Maybe it's just finding a new normal 🙂

Best of luck with your husbands treatment and hope you had find that happy medium 🙂

Vicki and Colin x

[VickiParticipant]

Sue

This must have been a real trial to say the least, for you and hubby. Thankfully the hospital team seem to be on the ball. Always best to be vigilant and what out for those signs……look after yourself too as its a tough rough for the supporter too.

Best of luck to you both 🙂

Vicki and Colin x

[VickiParticipant]

Hi Andy and all,

Glad you and steph had a great holiday Andy….when we went to kefalonia it was in the July and the worst weather in 30 years! Too cold to be on sunned without duvet! And boy did it rain. Still you had a great time so that's all that matters. Those pesky pps not the rise, that's a bugger and not on the plan! Hope the back is feeling a bit better and fingers crossed for the next phase of treatment.

You're right, life is a gift! We all need to value it 🙂

Keep well all

Vicki and Colin xx

[VickiParticipant]

Hi there,

Have you thought of pushing your dad/ medical team to see a psychologist? My partner went through a real phase of anxiety before sct, fear and even afterwards gets bouts of worry and anxiety. It was well worth it for him and she was a great asset, whilst he was in hospital too. Worth getting the support in before your dads depression gets worse……even though you never know it could be boredom if he has been used to being up and about

Best of luck

Vicki and Colin xx

[VickiParticipant]

Hi David

My partner Colin was 55 when diagnosed and had 7 cycles of rcd then a transplant in October 2012. He is on the med but gets very tired still. We were told they wouldn't do sct for over 70s but as the others have said it must partly depend on individual cases and their fitness. As jean said her frank was nearly 70 and he's done it!

Welcome and grit your teeth and go for it. Best of luck 🙂

Vicki and Colin x

[VickiParticipant]

Hi steph

My Colin had hiccups bad too, we used to try everything….warm water and sugar, holding breath, etc….the best we could come up with was blowing into a paper bag. He really was distressing for him so we do understand how your dads feeling. Also when taking the tablets maybe he should try to reduce how much air he is taking in…..

Vicki and Colin xx

[VickiParticipant]

Hi lolly

That gcsfs cause a lot of back and other pain so that's probably a good sign for the harvest of cells. No pain no gain ha ha 🙂 best of luck with the harvest. Colin had hardly any pain and it took him three goes to get the cells and only just got the 2 million

Good luck with yours

Vicki and colin

[VickiParticipant]

Hi Phil

Colin elected to come off mm trial when he was randomised. He was fed up with asking loads of tablets and the other thing was that he also had very low blood counts of the revlimid. He is on two month assessment at the hospital and still does the water samples etc. he felt good about coming off :-). Hope the remission keeps going 🙂

Vicki and Colin xx

[VickiParticipant]

Hi eve

Just catching up and sorry to hear slim has been in hospital. The hospital sounds chaotic, and blimey comes to something when you have to take him up to bed! The neutrophils sounded very low so glad to hear there has been a improvement, can't help with the potassium but just wanted to give some support 🙂

Hope slim is feeling better and you not too knackered 🙂

Vicki and Colin xx

[VickiParticipant]

Hi steph,

It's not an easy situation to be in that's for sure……but tell your dad to keep his chin up! We've been there! Colin has been in remission since his sct in November 2012 but we've certainly had our share of infections and hospital visits! It does seem like a long journey that for sure, and as a supporter it's hard because you can feel so helpless…..one day at a time is the only way

Best of luck with it, your dad will soon be home 🙂

Vicki and Colin xx

[VickiParticipant]

Hi there

The pp numbers are a marker to measure how the condition is performing, 3 seems very low and an increase to 8 still seems low. I assume your dad hasn't had a transplant due to his age so they are going with medicines. It's hard to say what the numbers mean as they mean different things to different people. Is there any way someone could go to the appointments with your dad? It's so hard to take it all in and it helps if there's someone there to translate the wealth of information!

Sorry that's not much help but want to give a bit of support. I must be so hard being so far away 🙁

Vicki and Colin x

[VickiParticipant]

Hi David

Sorry to hear you are being messed about! That's not good for the confidence of your health…..however you are a perky, cheery chappie, so positive so dish up a dose of that for yourself, as hard as that it

Positive thoughts are with you

Vicki and Colin xx

[VickiParticipant]

Hey jules,

It's never over til it's over. Keep your mum involved, keep talking, be cheery, it's b hard but you can do it. Your mum will keep going if she keeps thinking there is something to go on for!! :0)

Good luck

Vicki and Colin xx

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