[VickiParticipant]

Hi Mari,

Thanks for your reply, and we hope you had a good relaxing holiday. It was a bit of a blow when colins harvest did not happen, and I was especially concerned and wanted to round up the entire medical profession to see what they could do! We are much calmer now and in the waiting game to see if they will fund the extra injections. Colin has adapted well to having the line in and generally speaking is not too bad except a little tired at night. We are going to hospital tomorrow for final health checks, the only thing missing are the stem cells! We hope Stephens SCT goes well, keep us posted.

With regard to colins hair I expect he'll want me to do a close shave, if he can trust me with the hair clippers! It's been a nice few days with my mums special birthday and it's been good that Colin has been well to contribute to all of it. You could almost be tricked into forgetting this mm!:-)

Take care

Vicki and Colin x

[foxy555Participant]

Hi Vicki and Colin

How are you both? Any more news on what is happening with Colins progression to SCT and the drug funding?? How is he generally and how are you coping? How nice that you both enjoyed your mom's birthday.

Do you have to automatically come off CDT prior to SCT? Would Colin have to go back on it if the SCT is further delayed??? What is the line in Colin doing at the moment???

No news here really, Pete is just finishing another month of CDT, goes to see consultant on Tuesday for monthly review. He is ok, still has pain in his back and chest – at times – and his ankles and legs are still swelling up most nights!!! He did have the all clear about both of these problems, but still worrying!!

As Pete says, the pain never goes away, always there!!!! He has also had an unexpected letter from the Ongoligist for an appointment next week, we don't know what this is all about, hopefully another zap of radiotherapy to ease the discomfort. As Pete has said, why can't they just zap the blooming thing completely!!! Did Colin have radiotherapy just the once?

Pete just wants to be able to do normal things again!!! Golf especially, but just simple things like DIY would be nice and having a decent night's sleep – lying flat in the bed!!! Also would like his taste buds back, but said not an issue, as he said my food used to taste awful anyway!!!! Has'nt lost his sense of humour anyway, which is a good thing!

It is such an individual illness as everyone on this site says, and OMG, is it ever, so many different ailments,conditions and symptons.

I must admit I get so confused reading the posts, but then again, I suppose until you have gone through the complete journey you don't fully understand.

Ok, let you go Vicki, take care and please keep in touch

Love to you both

Ann and Pete

xx

[VickiParticipant]

Hi ann and Peter,

No news on the funding, we think that it is very unlikely. We will know what the next plan is when we go to the hospital on Monday 20th. We aren't sure what this appointment in for though a the pa wasn't sure when we asked! We are assuming it's to tell us when the next harvest dates are…..hopefully.

Colin has been off treatment for about 8 weeks now (I think they stop it when it's getting near to SCT/treatment plateau ing. Overall Colin has had a few spells when he has felt really really tired, but this week, touchwood seems to have bounded back and been full of beans……even talking about doing so DIY (painting and decorating)' but I think that's a bit ambitious. However he usually has his way…..ha ha, and I am trying to stop treating him like an invalid.(which he is not and is really quite active). I don't think/hope he will be delayed too much longer. Ali's mum had to wait from April to august I think.

Not sure about the small doses of radiotherapy. Colin had one big blast at the start. Colins main concern is posture with his back. Amazingly he has lost about 4 inches in height!. He finds that very upsetting. I do wonder whether part of it is posture, bearing in mind his original back condition which brought about this diagnosis has yet to be solved.

Colin did not have any swelling problems but I am sure that was a side effect that I read about. It must be a right pain for Peter not to be able to get a good nights sleep, that helps all of us. Colins Taste buds are still funny, he used to low chilli and is now right off it. He was well into cake, but has now moved onto cereals, and he isn't even on treatment!

I know what you mean, this condition is very individual….but everyone's experiences o the forum helps. I hope that your appointment goes well o. Tuesday, keep us posted. I had wondered what you were up to. I won't say don't worry, because I do too, its just how much varies!

Have a great weekend, 🙂

Vicki and Colin x

[tomParticipant]

Hi Vicki and Colin

Its a shame you have no news on the funding but having a date for the 20th is good then you can ask why?

I was treatment free for about 3 months prior to my transplant starting, and yes i was worried that having No treatment was bad for me but am pleased all went as they told me 🙂 (am just a doubting Thomas 😉 )

Vicki, Colin I had my Transplant in 2009 and still feel tired and really washed out some days I just try and adjust to those weary days.

Have a great week end

Love and hugs
Tom "Onwards and Upward" xxxx

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