[tomParticipant]

Hey Andy
Sorry its not Hot where you are the sun is out with a vengance here and I am off to the pub in half an hour or so, you and I will be having a well earned rest and a pint.

Tom "Onwards and upwards" 😎

[VickiParticipant]

Hi Andy, Tom, and Peter and ann

Peter, ann, sorry I missed your post. Hope you guys are doing well and Peter is progressing well with his treatment. We have been through the mill this last week, but now we are calmly waiting to hear about those other injections…..

Andy, we cannot believe that you had FOG!, you can see for miles down here , sorry to rub it in :-). Tom, we had visions of you trying to walk back from your club with your legs crossed….quite a challenge. Like you we have had glorious weather and tried to chill out. We went to friends for lunch and then visitors later, so it has been a nice relaxing time. Sometimes it feels strange to be relaxed and actually doing normal life. We sometimes forget what normal is.

Well,enjoy the rest of the weekend and sunshine, well except if you are Andy and he will probably have snow next LOL 🙂

Vicki and Colin x

[VickiParticipant]

Hi all,

No news on whether we've got the prelixafor yet! Hope that no news is good news!. The cyclo-prime has worked for something……..Monday saw colins hair start to come out in clumps. Col was upset (he expected this later during SCT and not after cyclo-prime),just goes to show he does not listen to me because I told him Stephens hair came out and so did Ali's mums ! ( he reckons I did not mention it ha ha!).

Anyway hair did not last long…..up to the barbers today and number 1 cut all over. Colins tolerating it and I think it looks quite good. Might need to get a decent hat, as its quite cold here tonight!

Vicki and Colin x

[VickiParticipant]

Hi all,

Some 'good news', the funding for prelixafor has been approved today :-), no dates yet in terms of when and how but at least it's a step in the right direction. The only dampener for Colin was that they were suggesting another dose of cyclophosmahide to go with it……which made him feel really rough and low. They are not sure yet though.

It's been a strange time really, two false starts and then waiting for this. Colin says it feels a bit like and anti climax and he feels lacking in the energy to be positive and dealing with the next stage. Did anyone else feel like that?, I am trying to keep him positive and upbeat but that's not always easy……especially given the hoops of the last couple of weeks, and the shock of now having a very close number 1 cut,it takes a bit of getting used to for him :-).

It does feel a bit of anticlimax. I hope it went ok for biker chris and his second try with plerixafor, no posts on his thread to update?

Hope you guys are all well 🙂

Vicki and colin

[jmsmythParticipant]

Hi Vikki and Colin so glad to hear that Colin is getting plexifor (!!) I am following your journey closely as Frank is a couple of months behind Colin. Do keep us posted every step (if you are up to it) it is so helpful to read of other peoples experiences

Love, best wishes and all the luck in the world
Love Jean x

[AliParticipant]

HI Vicki and Colin

Well, firstly congratulations on the funding! That seems like a victory in itself:-)

Its no wonder Colin feels abit low (and you) we have said before about the rollercoaster ride this MM journey is. Highs and lows all the time and we are just not used to it are we?

I have no doubt though that when the time comes for the next round Colin will be prepared and will have found some more strength. He has to, simple as that!

The hair loss will be a downer for him too ( my Mum had a close number 1, with hindsight it would have been better if it was even closer as the hair was very prickly and poked through her scarves, suppose its different for a man though).

Anyway, take care – both of you.

Love Ali xx

[tomParticipant]

Hi Vicki and colin

Well done on getting the funding but its a shame it has to be fought for >:-(

The other dose of cyclophosmahide if it is needed then its a case of OK throw it at me I and everyone else that gets near me will suffer for a few days :-S so let them all Be warned 😎

Tell Colin to stay Posative as its the only way to fight this bloomin MM am afraid, going Back to the Funding for this it must have cost as much trying and having TWO false starts, yes I did feel down and depresed during my treatment so tell Colin and yourself its Normal 😀 it passes but I did have a chat with a councilor at first and that worked wonders for me 😎

And as for the hair well I am bald on top so it never worried me at all I liked it all shaved off but my young bride dint 🙁 other wise i would still be a Kojack 😀

Good Luck for the next round 😀

Elaine and I are off to Mablethorpe today to see John Banks raise Money for MM UK John has had MM for about 12 years :::
John Banks
TODAY IS THE BIG DAY AT THE CLOCK CHIPPY. EVERYTHING HALF PRICE AND ALL TAKINGS TO CHARITY + FREE PRIZE DRAW WITH SOME FANTASTIC PRIZES. ELVIS WILL BE IN THE BUILDING ALL DAY TO ENTERTAIN YOU. DON'T MISS THIS FANTASTIC DAY

So I am off for Chips and Peas 😀

Love
Tom "Onwards and Upwards" xxx

[HelenParticipant]

Hi Vicki
Well, it was never going to be an easy ride and I suppose someone has to test the system to its limits, and clearly it is Colin's turn at the minute!:-/
I do hope you get a date soon and things begin to move, it's so unnerving having all this uncertainty, you can't plan anything, it's very depressing too.:-P
So keep your spirits up watch the Great North Run on Sunday, and look out for my little girl ( well she's big now!) she is doing the run for " beating blood cancers" with leukaemia, lymphoma and myeloma research ( no places were left for mmuk) I'm very proud of her she's already reached her target sponsorship and she hates running!
Have as good a weekend as possible.
Love Helen

[VickiParticipant]

Hi all,

Just seen bikers chris good news….great news for him and hopefully us! Hope you enjoyed the fundraising day and the peas and chips Tom. You are so right and we just need to gird our loins again, pick ourselves up and get that energy going. Helen, will have a look at the great north run tomorrow. How is your chest infection? Colin feels rubbish today and he has slept for most of it, is that normal? He had the cyclo. 3 weeks ago? That said has been to work 3 days this week full time and we went Out! Last night. A colleague was retiring and it was the first time we'd been in a crowd since he was diagnosed last October. It was great to see him chatting and circulating catching up with colleagues. But well shattered today :-(. Number 1 cut getting shorter. I think it helped going to the do last night…..there were people with shorter hair than Colin there and they'd not had treatment.

So bouyed up by biker chris news. Hopefully well get the same x if all goes well entertaining some friends tomorrow.quite a social , could almost forget about mm, almost!

Vicki and Colin x

[DaiCroParticipant]

Hi Vicki & Colin.

Right… time to get real. It is hard to remain positive… bloody hard work… it is moral sapping to take on board the idea and then the reality of another dose of Cyclo, followed by the GCSF injections, the first day of harvest, the necessity of Plerixafor (if needed) and the stress of waiting for the results. But think of this… what is the alternative?

Do you enter the process with your head down, dragging yourself through each step with a heavy heart and the expectation of failure? Or do you look it straight in the eye and say I can do this… I can take whatever I have to face and dominate it… head up, shoulders straight and saying to yourself it is either one way or another and I demand… yes, I demand success! Look out into the universe and demand a successful procedure, don't back down, no half-hearted attempts… it's either Yea or Nay.. so why settle for anything else than Yea!

And if it is Nay? So be it… what's next, give me the options and let's go… Whatever It Takes!

The odds are even… but this time there is Plerixafor, waiting in the wings, ready to swing into action, to swing things in your favour.

Head up and go for it Colin, commit yourself fully into positive action, visualise those cells cleaving away from your bones and into your blood stream, enjoy every single ache, take joy in the poison that courses through your veins… its shit but its good shit because it means that everything is working as it should be.

Your call… make it count.8-)

Dai.

[tomParticipant]

And may I say a well said that Dai 😀 I for one have (nearly) always said throw it at me and stand back and let me Fight it head on. and if that fails find me something that will work I honestly think its head working that HELPS make you better with the pills.

Now you all stay strong and well and face it for all it is 😎

Love to you all

Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Dai/Tom

Battle cry heard loud and clear. How right you are. There is only one way to deal with this…..head up and look it straight in the eye….well except when colins backs a bit achey then it's hard to stand with shoulders back LOL. That said there are only two ways to go and the positive route is always the best :-).

Waiting to hear when the next rigmarole starts…..

Vicki and Colin 🙂

[tomParticipant]

Hi Vicki and Colin

When Colin's Back is not too good then that calls for a lean over and a shoulder charge 🙂 and am sure that will work just as well but it needs plenty of screaming to go with it ha ha.

You two enjoy the week 😎 it aint gonna be warm but it will soon be christmas ha ha

Love Tom "Onwards and upwards" xxx

[foxy555Participant]

Hi Vicki

Hope Colin's back is feeling better, so pleased to hear about the funding, any news on when everything gets back on track??

Pete went for his monthly consultation today, they are now concerned about his swelling ankles and legs because the ECG tests have shown a possible 'dip in his heart beat'. OMG, we were just about to book a nice City Break in Spain for mid-October, but with an appointment pending for a heart scan, abit dubious, plus the fact that we have learnt our lesson with the Insurance Company about ongoing treatment which they will not cover if anything happens.

Bit of a blow, we thought everything was progressing smoothly towards the SCT.(Mindful though of what happened to Colin, not always straight forward!!!)

This is still on schedule for November/December as all blood counts are good – but now we have the worry about the heart!!!!!

Sadly, like you and Colin and alot of other people on this site, one thing after another.

Best wishes to you an Colin and to all our other friends on this site.

Take care all

Ann and Pete

xx

[VickiParticipant]

Hi Tom and ann,

Tom, we did enjoy the weekend :-). We went to our friends early retirement do and wait for this stayed out til 10pm. I don't think we have done that too many times since colins diagnosis, except when we had to go to hospital cos colin felt Ill ! Had friends for lunch on Sunday, nice and sociable. Col a bit tired but able to do the lot 🙂

Ann, sorry to hear about your latest glitch, this is not an easy ride and always something to catch us out!. What are they going to do about it? It always seems to happen when you are booking a holiday! That said it could be precautionary as if they are like ours, very thorough and like to have all the boxes ticked.

In general, Colin has been feeling quite tired and generally a bit fed up…..but we have some new provisional dates but I am not going to put it in print this time :-). Try another approach, we'll tell you when we have 2 million plus stem cells!!!!!!

Hope all is well. Ali, how is your mum doing?

Vicki and Colin x

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