[VickiParticipant]

Hi Andy and steph,

Well really pleased for you to hear that there are some options, old and new. That's really great. It's good to have a boost so that you can keep the really positive attitude going. This forum is an absolutely godsend for those who have the condition , and those that watch this going on!

Best of luck with your next phase of treatment

Vicki and Colin x

[VickiParticipant]

Hi Ali,

Like the others tuning in to see how you are all doing. I hope your mum is not feeling too rough, and never mind about having a bad hair day, and not being able to wear any nice head dresses, it's only temporary and like you say this will all be a big blip in 12 months,.

Thinking of you

Vicki and Colin x

[VickiParticipant]

Hi,

Well done paul, that seems to have gone quick, but maybe not for you! I hope you continue to recover well, enjoy mull, and get yourself in tip top shape for the next stage.

Vicki and Colin

[VickiParticipant]

Hi Wendy,

Keep those light chains down, you were an inspiration running that 10k, and your holiday to Asia to look forward to!. Just because the light chain tests costs a lot should have no bearing on if you need it…..you should have it.

Best of luck

Vicki x

[VickiParticipant]

Hi Ali,

Just tuning in to wish you and your mum well. Hope the odd food combinations have become more appetising, and the menu more normal! I wondered how your mum has been feeling today, and whether her bloods are on the down stage before the wonderful return upwards, maybe early days yet? I hope the mouthwashes do the trick, they've not mentioned using those in gloucestershire (what's it called ?).

Keep your chins up…..I'm exhausted after the cycling, running 10k, doing the triathlon and winning the equestrian!

Vicki and Colin x

[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

[VickiParticipant]

Hi Ali,

That's for taking the time to give us some encouragement!, given that you have so much on at the moment.

Glad to hear your mum is doing ok so far, and hope that she doesn't feel so sick. If she can eat a bit that's all the battle to keep her strength up,,,,,hopefully she will enjoy lollies in the hot weather in the future, not just due to the SCT. Hope she keeps her chin up, it must be so hard to watch, sensing though you are a close family and you will do it!

Best of luck

Vicki and Colin x

[VickiParticipant]

Hi Dai,

Some good news, the hospital phoned yesterday to say that they are trying to fund the gcsf booster injection thingy. Won't know until the next week to ten days, but at least they are trying. It's like the Olympics here…..we got ourselves in the frMe of mind ready for the final (SCT) and then the date of the race changed!,. Will have to get back in the zone when we know our revised dates!

Regards and happy olympics to all

Vicki and Colin x

[VickiParticipant]

Hi Alison,

All ok with us, just waiting for revised dates and whether the booster injection for gcsf will be available, sorry your mum is feeling sick, that's the one thing that colins dreading. Glad to hear she has been able to eat a bit though. I suppose now she is on the treadmill called the SCT things will go up and down like a yo yo…..but at least she has started the process. It's daunting but once she has reached the rock bottom stage it can only be on the up. We have been following penny lawson and she was allowed out to fresh air these last couple of days. If your mum is sporty at least she can watch the Olympics LOL!
We do hope your mum keeps strong…. This is the last hard stage before being 'normal' again, whatever that is!

Take care all, did your mum suck ice lollies…..we were told that helps the mouth?

Vicki and Colin x

[VickiParticipant]

Hi ann and peter,

Really glad that petered is feeling good at the moment. O I know what you mean, Colin is good at the moment too and you can almost get caught out and forget this mm thing!, until a temperature crops up, or time for tablets……

We have heard from the hospital and they are looking to try to get funding for the drug injection that boosts the gcsf injections, won't know anything until end of next week, or early the following one. We are going to hospital Thursday for the final checks, the only thing missing is the stem cells!. The 14th august is a non starter now so we will wait for revised dates. Every time he says he is tired I ask him, is it normal tired, or mm tired, as I always worry it is flaring up again.

Still this is a marathon not a sprint, keeping the Olympics theme!

Have a great weekend

Vicki and Colin x

[VickiParticipant]

Hi Paul

How's it going?

Vicki and Colin

[VickiParticipant]

Hi Alison

Hope your mum is doing well. Have been thinking about it all week. I hope she will get through it with minimum problems. In a funny sort of way we want colins to come forward and then we don't. Keep us posted if you can.

Good luck 🙂 🙂

Vicki and Colin x

[VickiParticipant]

Hi Charlie

Glad you chose the trial and best of luck with it. Remember keep positive. I am sure that none of our friends on here who are sufferers do not want it and neither do we as the partners. It is definitely a whole new lifestyle and learning to get a grip of it! No easy and won't be,but go for stand keep your chin up

Vicki and Colin x

[VickiParticipant]

Glad to hear things are on the up Eve, enjoy the holiday!

Vicki and Colin x

[VickiParticipant]

Dai,

It does appear to be a bit of a post code lottery! Colins first attempt at harvest, like Chris' failed. He has not been offered,nor was it even mentioned about the option of the prefelixor (sorry spelling!).in fact when I mentioned in to our consultant during the conversation about the harvest she told us it was not available in the south west and that if harvest failed we'd cross that bridge when we came to it……and we are still waiting to hear what plan b is. We are told they have a meeting on the Wednesday to decide but as yet we have heard nothing.

I am getting a bit worried as Colin has been off treatment for at least 6 weeks now and we are no further forward. In fact we had to go Cheltenham yesterday to get his line flushed because we have been given the wrong fluid, and to cap it all his temp went up on the way to 37.8 and it was nip and tuck about whether they would let him home! They did bit with some rattling lungs, and he says he feels under the weather today. At the moment we are still in limbo, and I really hope it does not come down to where we live! The nurses and doctors work so hard, but there is only a finite amount of funding, it seems!

Vicki and Colin x

[Author]

Posts