[VickiParticipant]

Eve,

That's wonderful news and really encouraging for us who are on your coat tails! Best of all though it's great for you gys after all you've been through.

🙂

Enjoy whatever you have planned next

Vicki and Colin x

[VickiParticipant]

Hi Mary

Sorry to hear about stans collapse. That must have been very frightening for both of you! It seems a long time not to have more information…..push them for some !, Colin always tells me I'm too pushy, but knowledge and an understanding of what's going on, for both your sakes is really important.

You take care of yourself too. I know it's hard and you,like i have felt in the past, feel helpless. You give our best to stan and he will soon be back on the road towards SCT and a long long remission 🙂

Vicki and Colin x

[VickiParticipant]

Hi Nicola,

Just catching up with your posts. My parter Colin was diagnosed in October 2011. During his initial treatment, 7 cycles of cyclophosphamide, dex and revlimid, he got very very tired and could fall asleep at the drop of a hat. He had short bursts of energy and then al of a sudden would just disappear and he'd have to have a rest. On and off throughout the treatment and even now he is on a break awaiting SCT he still has real spells of tiredness, which we have worried about but is perfectly normal and expected by the medics. Colin got very low at times, and there were tears……but each new step and remaining positive got us to where we are now. Yes there are blips but overall a positive outlook really helped…..but it's hard to maintain it. A roller coaster sure, but the ride will be worth it!

Colin had a bence jones reading of 31000 when he started. It got down to 850, which apparently was wiped out by last lot of chemo, or will be when he has SCT and melphalan. His pps started at 17 and went down to 0. It has sure not been easy, with a lot of emotion and soul searching….but your dad will do it :-). Colin had one lesion, and now takes bone tablets each day. By the way to cope with the treatment we broke it down into chunks….doesn't seem QUITE so daunting 🙂

Vicki and Colin x

[VickiParticipant]

Hi all,

Tom, firstly your kind words make us feel humble….it's lovely to know there is such support x. We will have that shoulder charge in our minds eye at every turn! :-).

We have had a lovely day today….Colin has had really good energy, and has said he feels hungry which is great to hear.
He's looking pretty cool at the moment, another new hat today to go with the new short style! A lovely lunch in the Cotswolds, and a little trip around colins home village. It is so nice to get out and about and Colin to feel reasonably well with it. Chins are up, and shoulder charge at the ready LOL!

It's not easy, this is all new, but it's so important to keep positive…..and thanks to all you guys, and our two penneth we can keep each other going :-), maybe Toms vodka tonic might do the trick! (only a small one!). Enjoy the rest of the weekend all x

Vicki and Colin x 🙂

[VickiParticipant]

Hi ann and Jean,

Ann, re peters numb extremities and the swollen ankles. Can't help on the swollen ankles but i am sure I have read about a lot of people mentioning slight numbness……is that the peripheral neuropathy thing?, if so I think there is a leaflet on the site here somewhere. I think it is quite common but I did not hear Colin mention that.

Hope all goes well for you and Peter. And Jean hope franks treatment is going well and you guys can get on the sct route soon. There is such pressure on the nhs isn't there. I heard on the news it's going to getbworse! How cheerful is that! 🙁

Take care

Vicki and Colin x

[VickiParticipant]

Hi Pia,

Welcome to the forum! You will find so much information, care and support from friends on this site. No question too small. Best wishes to your mother in law, and success from the treatment. It's a hard, individual road but one worth taking xx

Vicki and Colin x

[VickiParticipant]

Hi Mari,

Just sending some best wishes and here's hoping you and Stephen are ok…..:-) love and hugs from this end!

Vicki and Colin x

[VickiParticipant]

Hi Andy and steph,

Hope the hols are going well, from the southern softies, with the central heating on :-), still not as warm as kefalonia!

Vicki and colin x

[VickiParticipant]

Hi and welcome to the forum,

You will find lots of information, friendly support and banter on here. It really does help. No question too small to be responded to,

Take care 🙂

Vicki and Colin x

[VickiParticipant]

Hi Ali and Tom 🙂

We are still here, and good to know you are thinking of us!. All well with the SCT nurse yesterday. Again very helpful and informative. Getting our heads around it again…..we almost know those consent forms off by heart! I am still not going to put those dates down, as I don't want to tempt fate, but god willing when those little cells start flowing out you guys will be the first to know :-).

To give you a clue, we are trying to pack a lot of things into this weekend, as maybe next weekend colin won't be as well.! Its a really small world, but a friend of a friend of my mums has been going through the same treatment as Colin and if all goes well for him, and Colin they will be in having their SCT at the same time!

Hope you guys have a good weekend planned, and Ali hoping your mum is making good progress. Taking toms advice, onwards and upwards. Colin and I need to find an outbreak of morale, get our chins up and face this damn thing, come hell or high water!
There's a lot to be thankful for 🙂

Vicki and Colin x

[VickiParticipant]

Emma

Just wanted to say hi and that you are a real star in dealing with this from such a very young age. Wishing you all the luck in the world with your treatment. Will have a look at your blog. My partner Colin was diagnosed age 55 is on myeloma 11 trial and waiting for an SCT.

Keep your chin up 🙂

Vicki and Colin x

[VickiParticipant]

Hi Mari,

Just been catching up on Stevens progress! It does seem like he is going through the mill, and it's amazing how the memory dulls the angst that was probably there the first time round! We really hope that Stephen will soon be on the up, and those neutrophils shoot right back up. It must be so hard to watch someone you love feeling so rubbish! You make sure you are looking after you too 😉

Hope the temperature has come down and the rash a bit better…those medical teams really know what they are doing 🙂

Take care

Vicki and Colin x

[VickiParticipant]

Hi all,

We've just been catching up with all the posts. Ali, first of all it's no problem to hear your updates……nothing is ever a moan. It's so good to know that there is life after SCT! With this weather anywhere would be great wouldn't it!

Andy, it's so great to hear that you and steph have got away…abroad as well. Very brave but so glad the weather and sunshine is doing you both good! I seem to recal you are in kefalonia!. We went there about 3 years ago,maybe a bit more, and the weather in the main was the worst they'd had in 30 years! We have some pictures of us on the sun loungers with duvets over us! (we rented a villa!). When the sun did shine though it was beautiful. All going well,touch wood. Off to see the SCT nurse tomorrow. Have a great time and raise a glass for us 🙂 hope you get to Greece jacksprat :-). It is lovely.

All the best

Vicki and Colin x

[VickiParticipant]

Hi Tina,

Well done on those cells 😉

Colin had one big dose of RT. He said it made him feel tired, a bit breathless and a bit sicky but not too bad. It was the tiredness more than anything and we had to put cream on the RT site to make sure the skin stayed soft. Other than a brown mark where the RT went in. No visible or ongoing issues.

Good luck to you

Vicki and Colin x

[VickiParticipant]

Sarah and Henry

That's wonderful news for you both"….long may it continue. Relax and enjoy 😉

Vicki and Colin x

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