[VickiParticipant]

Hi Paul,

Sorry to welcome you to this site, but I can tell you it has been a godsend. My partner Colin was diagnosed in October 2011 and it was a bold out of the blue. Like you Colin, and me as his partner were scared stiff, of the medication, the process, the transplant and the outcome overall. Overtime we sort of got used to our life changing to accommodate hospital visits, drugs and the good and bad days. It's not easy but getting your head around making the most of the good days is an absolute!

With regard to the sct my partner colin was very scared and so was I. We engaged with a clinical psychologist to help Colin, and me! And it did help an awful lot. The transplant is a very individual thing in terms of how much upset tummy, sickness, recovery time etc but the one thing we did find was how skilled and knowledgeable the medical teams were and how closely someone was monitored and just how much they had to combat the viruses or sickness etc. we wouldn't say it was easy but doable. Colin had his I end of October 2012 -early November. He is recovering well 🙂

The myeloma team nurses and staff are also invaluable to ring when either Colin had a query of I was worried, and still do ring, was an amazing support. Us that and us on this forum to help you through!

Good luck 🙂

Vicki and Colin x

[VickiParticipant]

Megan and Phil

That's great for you both…..take toms advice, slowly slowly and keep an eye on temperatures…..I'm still doing it and getting on Colin's nerves :-). It's right about over doing it as Colin knows when he's done too much, but don't let Phil get there if you can help it!

It does feel great to have them home doesn't it! You enjoy your time together, no drip stand, no blood pressure testing and obs!. Marmite on toast though……either love it or hate it! 🙂

Good luck both

Vicki and Colin x 🙂

[VickiParticipant]

Well done val, keep going onwards and upwards as Tom would say!

Vicki and Colin x

[VickiParticipant]

Hi Charlie,

Agree with all the other posts, why not try asking for a physiotherapist consultant to give advice as well re general exercise. Colin has been recommended something like tai chi or qui gong I think it's called. Walking bound to be good, little and often (like food ha ha!). Definitely avoid the swimming pools and saunas, too many germs.

Hope your treatment is going better given the rough start you had

Vicki and Colin x

[VickiParticipant]

Hi Lesley,

Welcome :-(. My partner Colin was diagnosed in October 2011 and although Colin never said he was scared, I can tell you we both were. Having done Internet searches, wrong thing to do and didn't know about this site then, we were scared, frightened and it felt like our world had collapsed. New terminology, new life, new worries, medication, hospital after hospital visit!

Sounds grim, and at times it has been but we've got through it together culminating in Colin having a transplant and improving well. As Tom says it is doable. Hard to begin with but you do adapt.

This site and the myeloma medical team are a godsend, use them, they and the online forum friends have been more help than I can describe. 🙂 crack on, you can do it!

Vicki and Colin x

[VickiParticipant]

Keith

You sound like you are having a tough time……keep your chin up, you can do it. This mm thing must be beaten and you are jst the man for the job. Easy for me to say when you are feeling so rubbish 🙂

All the best

Vicki and Colin x

[VickiParticipant]

Megan and Phil

0.5 hooray hooray hooray.

It's a b when you think they can come home and then don't isn't it!. That said better to take your time, and not have the false start we had. Temperature spike when he got home on day one and straight back it!

So hope tomorrow is the day……take it easy and both enjoy 🙂

Good luck

Vicki and Colin x

[VickiParticipant]

Hi Lisa,

Sorry to hear your hubby had a rough ride through his treatment…..Colin had lots of infections too, we were at the hospital nearly every month and on most occasions he stayed in for ranging between 3 days and a week. We were on first name terms with the staff and the volunteers!

I wondered why they weren't going to do an sct for your hubby, there wasn't a doubt for Colin. Was it because he has pneumonia? Also do you think hubby might be feeling down coming of the meds and not having sct? Colin found the help of the clinical psychologist very helpful and he'd been anti that prior to but they were great, perhaps hubby might benefit?

Hope he feels better soon!
Vicki and Colin x

[VickiParticipant]

Peter

Just wanted to wish you good luck with your forthcoming sct…..keep us posted! Colin had a couple of blips, as you know but touchwood his bloods have come right back up and is doing well.

All the best

Vicki and Colin x

[VickiParticipant]

Sarah Jane,

Agree with the others and I've learnt something too. Had no idea about the diary. Good luck with your continued treatment

Vicki and Colin x

[VickiParticipant]

Hi Daniel,

Like you when my partner Colin was diagnosed in October 2011 I thought the world had come to an end, still do sometimes. And reading lots on the Internet can be depressing and misleading. I was worried about how long and what ifs. Try not to and always have someone you can talk to about your dad and you and your worries.

It is hard to deal with and you are very young so it is important that you and your sisters help your dad together! Hey also remember that that treatments available now, and on going are going great guns! It does not mean the end, alright it's a tough chapter but you and your dad can do it!
Ask any questions you like help any way we can!

Vicki and Colin x

[VickiParticipant]

Wendy

I so hope it's a blip. You have done so well, so far! Sorry I can't help with the advice re relapse but just letting you know we are thinking of you…..keep going with that triathlon!

Vicki and Colin x

[VickiParticipant]

Hi Peggy

Not sure who Smeegle is but who cares if you are on the way home! 🙂

Sorry you've had a rough ride of it….Colin still has some flash backs and even hates going to the hospital for his blood tests at the moment! Stil you take it steady and slow, all being well you will be up and about in no time!

Vicki and Colin x

[VickiParticipant]

Hi deb

Sorry to hear of your diagnosis. My partner Colin was diagnosed in October 2011 and it was an absolute shock for both of us in different ways! Like other coiln went on the myeloma 11 trial and after about 7 or 8 cycles he went for a stem cell harvest for transplant….a couple of blips along the way but had the transplant in oct,nov 2012. Thankfully he is recovering well. I remember when Colin received the leaflets on treatment and it read like a horror story, however once we got going it sort of became easier…. I hope you have family and friends to support you and your direct family as that's so important.

It is possible to get through this, and this forum and the medical teams attached to it or a great source of help and reassurance. Ask any questions you like and we'll help where we can 🙂

Vicki and Colinx

By the way do try and celebrate your birthday…..this mm thing must not rule us, we rule it! 🙂

[VickiParticipant]

Hi Megan

Your ears must have been burning today…..we were talking about you and Phil and the ups and downs of sct! The neutrophils are at least on the way up…..and fresh air, wow. Colin felt really weird when he came out of hospital so it's good that Phil has got a little taste of the fresh air early!

The food, gosh Colin remembers that well….that was our only complaint with the nhs, rubbish food! Even I got fed up of the sandwiches offered to me, shouldn't be ungrateful but it was the same choice very day! So I see where Phil is coming from! I do hope Phil is allowed home soon, but it's such a bitter sweet pill…..not home too early or you end up going back the same day like Colin and I did!

The neutrophils do go up and down, our sct nurse told us this. Colin's went down last Wednesday to 0.2! I nearly had a melt down…..all the other bloods are ok, so just letting you know it is a bit of a roller coaster, but a pleasant one because your loved one is at home :-). Hope you are looking after yourself too Megan 🙂

Vicki and Colin x

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