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…[Read more]

Ali and mum,

So, so,so pleased for you all. I know it's take it easy and a bit at a time, but let's hope this is, to quote Tom, onwards and upwards. It's good to hear that your mum is eating s bit and sore mouth held at bay. It was so kind of you to think of us Ali, with the mouth wash, despite all that has gone on in the last few weeks (thanks…[Read more]

Hi Mavis

Thanks for this. He seems to have perked up a bit over the last few days, and especially the last couple. It's hard not to think that every pain is myeloma isn't it! I wonder if that fear will ever go away! We are awaiting a hospital visit Monday to see what happens next. The original SCT was due this week but due to stem cell harvest…[Read more]

Hi Ali

Just wondering if d day happened and your mums home? Hope so as that's when the real recovery begins. Fingers crossed and all the best

Vicki and Colin x

Hi Tina,

Colin has been off treatment for about 8weeks waiting for SCT. He has been very tired at times (I put a post on about fatigue is this normal). I thought that he would have bounced back quicker but like the others have said your body takes a battering with this blunt instrument called chemo. Colins' tiredness has gone in peaks and…[Read more]

Hi Ali,

Your mums doing a stormer, well done. The time seems to have flown by, but not for you guys. I know what you mean about worrying about things 'happening' at night or out of hours. They always seem to lol! Never mind.

I hope your mum is still on the up and it's amazing that she might be out thursday. Go on her, she's a real star. It…[Read more]

Hi bill,

Welcome to the forum…..you say you are 41, there seems to be a higher incidence of young people getting this condition! My partner Colin is not as young as you but he's gone through the myeloma 11 trial and is awaiting his SCT dates. I won't say it has been easy in any shape or form, but the medical teams are well clued up on the…[Read more]

Hi Charlie,

Glad to hear things are going ok. Forgot to say,Colin had loads of hiccups when he was taking dex. Tried all sorts. Wished we spotted the option with taking yoghurt! Glad you are coping ok. Any questions please ask…..we are still awaiting colins new SCT dates!

Keep on going 🙂

Vicki and Colin x

Hi all,

Thanks very much for your encouraging posts! And Helen…..happy first anniversary!

It's really good to hear from you guys that have been there. I did not realise that the fatigue would carry on, but then I suppose the blunt instrument of chemotherapy takes a bit of getting over. It has been quite a busy week as it was my mums…[Read more]

Hi Ali,

Wow big surprise if your mum comes out Tuesday or Wednesday, but if they think she up to it…..recovery always best at home. When Colin had an infection once his neutrophils were 0.4 and he was still allowed to stay at home. We were just careful with cooking food well, washing salads or giving the salad a miss, no soft cheeses…[Read more]

Good luck Wendy

Hope all goes well so that you can progress with your holiday plans….

Vicki

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…[Read more]

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

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

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]