[VickiParticipant]

Hi Craig and etta,

Hope all is going well and those cells are starting to improve! Hope the d &v are also reducing. I found Ali's posts about her mum really helpful, planning ahead and realising we are all in is together.

Look after yourself too Craig as etta will need tlc when she comes home, and it's not good if you are shattered too! , shame I never practise what I preach (good at theory though!).

Vicki and Colin

[VickiParticipant]

Hi Dai

Thanks for your good wishes. Hope those gcsfs are starting to work. I thought of you when we were at the hospital last Monday……one in the hope your virus was sorted, and secondly when they told us they would not fund those prelixfor? Injections….Colin had to have the toxic cyclo prime!. This was our first experience of postcode lottery!

Hope you are feeling in better form 🙂

Vicki and Colin

[VickiParticipant]

Tom,Ali,

Know what you mean….I worry if I think I am not worrying!, then start asking myself am I immune to this worry, got used to this mm thing? (never!). That said I can't imagine we'll ever be the same. Last night Colin was looking out of the window and there was a plane vapour trail. He asked whether I thought we'd ever go on holiday/on a plane again :-(. Answer……we will too right, failure is not an option! And Helen did it!.
🙂 🙂
See I can do the positive again!

Roll on Monday to start getting those cells out!

Vicki and flu-like Colin!

[VickiParticipant]

Hi Helen

Sorry to hear about your neighbour. Very sad. A similar thing happened to one of our friends 12 months ago and it has taken some time to get our heads around, certainly his wife!

On a happier note very pleased to hear you are back at work full time, even though boring and with wobbles…..that is progress?

This mm thing really does take some 'getting used to' from everyone's perspective!

Take care x

Ali,

Thanks form your advice….you are right. Everyone is different!. Colin says he feels quite under the weather tonight, and does look a bit peaky, so gone to bed already. Praps it's those stem cells!. Hope you have finished the ironing by now!

Vicki

[VickiParticipant]

Hi gill,

Hope that the radiotherapy has helped Stephens back. Colin had only one large dose of radio at the beginning. They warned us about burns and gave us some cream that I had to rub in every day. The burn has gone but like outdoors Paul there is a patch of brown skin about 3cm x 3cm. Seemed to do the trick so is well worth the scar….

Vicki 🙂

[VickiParticipant]

Thanks all,

Colin has just had day 2……and no pain yet! Come on you stem cells or my worry beads will be out soon!.

He seems a lot brighter, more perky, eating well and has been to work today. Glad you mentioned when the pain might come.me being me, wondered why it did not come about 10 seconds after the first injection LOL.

I had a couple of days leave from work so we spent a nice couple of days together……no decorating! Sorry if I sound like a worrier, I am! I wont say I'm not worried, and do worry about Colin worrying, as he does 'keep things in'. Still your support is greatly appreciated and whilst I do all the posting, he gets to hear them all

Hope you are all well 🙂

Vicki and Colin x

[VickiParticipant]

Hi Ali,

Great news, your mum seems to be doing great…..and glad to hear slow but sure progress. With of course a little bit of resting in between…. At least the weather is quite mild now, so hopefully there aren't too many about. I've got this image of you being surrounded by ironing and the kids up to their ears in jelly beans! Result for the kids if your mum doesn't like them!

Keep the progress going. Colin has had his second gcsf injection (started Wednesday night). He has not had any pain yet. When did your mums start…..worry bead going, no pain no stem cells? 🙁

Vicki and Colin x

[VickiParticipant]

Hi Megan and Phil

Sorry you had to join the club but welcome anyway. My partner Colin was diagnosed age 55, so older than Phil but the shocked was like a train hitting us!. Colin had back pain and a random blood test revealed the worst case scenario. We did not even know this mm thing existed, and frightened ourselves silly with all the other websites and the miserable information them!

That said life does change, however the positives are the medical teams are great and colin had 7 cycles on myeloma 11 trial and now waiting an SCT end September 2012, all being well. Hope all goes well for you guys….any questions if we can help we will 🙂

Vicki and Colin x

[VickiParticipant]

Hi ted,

Great news for you….keep that mm at bay.

Hi Kevin and ange, my partner Colin was diagnosed October 2011 and as I have said many times a complete bolt out of the blue. I still find it hard to come to terms with sometimes, and colins the one with mm!. That said the hospital staff at Glos royal have been great. There is no doubt that at the moment life is different but the treatment has caused an excellent response and we are awaiting a stem cell transplant near the end of september and then in time, returning to a new normal?, good luck to you both, with your treatment. If there are any questions we can help you with please ask. :-). 🙂

Vicki and Colin x

[VickiParticipant]

Hi Keith,

That all looks like good news to me, the bloods are down so the treatments working. I hope they can sort the sugars out. My uncle had type two diabetes (not myeloma related thank goodness) but he controlled his with diet. Hope this can work out for you too.

Vicki and Colin x

[VickiParticipant]

Hi Ali, Tom

Hey you are right Ali, in the end my uncle called in and somehow he managed to take over a bit and gave me a hand! I ended up being more of the labourer and tea maker, however still managed to get paint on my trousers, hands and oh on my ear!

Yes gcsfs start this evening, there aren't many times I hope for Colin to have pain but this is one of them!. Sorry to hear you had a soggy holiday but at least it was a break.

Colin much better yesterday 🙂

Take care all

Vicki and Colin x

[VickiParticipant]

Ali,

That sounds very positive progress for your mum. Glad to hear she has got out a bit. That must be very heartening for your mum as well as the rest of the family. Your mums sounds like a real trooper. You must all be very proud of her 🙂

Vicki and Colin

[VickiParticipant]

Hi Tom,

Thanks that's reassuring to know…..and glad your still on top form. I have shared these posts with Colin and he has felt more positive too. He has felt a bit better today, 🙂 despite the weather! And overall an improvement. I hope Colin has had the can't be assed moment, or maybe that's post SCT and then feeling good clicks into place :-).

Oh and looking after me?. Maybe I should remember that a bit more too! By the way I took colins mind of how poorly he was feeling by painting and decorating our new porch…..not my strong point but at least it gave him a laugh. I am the female version of mr bean does painting! 😉

Vicki

[VickiParticipant]

Thanks Eliz,

It has been quite a tough couple of days. Colin felt really poorly yesterday, sick, tired and I think really generally fed up of feeling I'll. Today he looked a bit better but has been very very emotional. I do wonder whether it was a reaction to Friday, or maybe the drugs. I hate to see him upset and feel really helpless that I can't do anything. Just trying to keep the food and drink going and being positive! We've been keeping an eye on his temperature……nothing yet 😉

Have a great bank holiday weekend and hope you are keeping well too 🙂

Vicki and a tired Colin x

[VickiParticipant]

Hi jacqui,

We live in the forest of Dean. My partner colin was diagnosed age 55. We go to GRH for appointments. Colin is on myeloma 11 trial. He had 7 cycles of cyclophosphamide, dexamethasone and revlimid. The dex made him feel emotial, a bit moody and he had real problems sleeping. He did not mention tingling or anything, he did feel very very tired. He is currently off treatment with a stem cell transplant planned for 24th September, 2012 (he was diagnosed in oct 2011. A complete shock, sometimes we/I can't believe it now.

Please ask away as if we can help we will. With regard to poor sleep Colin used to get up for a bit, read, have cereals and then come back to bed, sleeping reasonably well.

Good luck 🙂

Vicki and Colin x

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