Hi Helen

Belgium was brilliant. The weather was great, the beer was great, and the natives were friendly.  I’ve been going regularly since 2002 initially it was with my running club mates. We’d do a race the first day we were there and then spend the rest of the time rehydrating lol. Must of been around a dozen times now. No more trips planned…[Read more]

Hey, congratulations you two. What took you so long Colin?
Best of luck.

Wey hey! Bit of a surprise. Good on you for doing it. If Colin can get to the Church then he can have the energy to ensure he enjoys a lot more time with you.

What about the honeymoon?

Hi Liz.

I was tried with DTpace in 2012. After five days in hospital hooked up to all the infusions and the constant beeping I was later given a BMB which showed that most of my bone marrow had been wiped out though not the myeloma so I didn’t get a second cycle. It seems DTpace is like marmite it either works well or doesn’t work at all. There…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myeloma was still hanging around! So that was the…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myelobeen ma was still hanging around! So that was…[Read more]

Fatigue comes from the Dexy. It is one of those things that cannot be helped. Unfortunatetly that is the way it is. The thing is both of you need to reassess what can be done and what can’t and then readjust your lives accordingly. Life will never be the same again, it takes time to adjust to the change. Expecting things to be how they were will…[Read more]

Hi Vicki,

Very sorry to hear your latest news. As I said before, it’s not over until the fat lady sings, strange things have happened in the past and can again. Be prepared for the following emotions from Colin:

denial, anger, hope/ wishes for the future, depression and acceptence.

He must believe there is hope. Having read your many posts in…[Read more]

Hiya Vinni, looks like you had a great birthday bash, your mates look as though they enjoyed themselves as well. Hope the weekend took your mind off things!
Well done on raising £400 that’s really good, you’ve got some very generous family and mates.
See you soon
Tony F

Hi Helen

So pleased to hear your results are ok to enable you to continue with your treatment and enjoy your holiday home.

Our kitchen is almost complete, but getting up early for the tradespeople and being on constant alert to answer their queries has taken me a few months to recover my energy levels. We did think about extending the back of…[Read more]

Hi Vicky,

I am so sad to read about Colin’s lack of response to his treatment. It’s the news that we all worry about receiving during our myeloma struggles. You must be so exhausted and stressed with the range of emotions you are both experiencing at the moment. Hold onto your hope that Colin will be able to fight off the spikes in his…[Read more]

Congratulations on your 50th and well done you for raising the money for myeloma.
I hope you cope well on this journey, and as you say the forum is off some help to us all in different ways . Regards Etta

Hi Brian, following my SCT I was on antibiotics for three months. Then I was stopped. I opted not to go on maintenance drugs and was completely free of drugs for about 26/27 months.
just to cheer you up a bit has your consultant told you that after SCT you will have to have your baby injections again! I never thought about that but the chemo prior…[Read more]

Hi Carol and Maureen,

I was just so pleased I had to let it be known. Really it’s about not giving up. My original diagnosis was just weeks after moving out here. My original plans were blown out the water and it was a case of finding something that I could do to ensure that I have as normal a life as possible, hence the start of retraining for a…[Read more]

Really sad to hear about your predicament. Just remember it’s not over until the fat lady sings. Who knows what’s around the corner. Is there no chance of a donor or does he have any Stemcells left that they can implant? Sorry if I sound a bit thick but sometimes solutions come from asking dumb questions.

If they are certain that nothing can be…[Read more]

Vicki, I am so so sorry to read your post, as Helen said I think that we all dread hearing what you have both been told. I truly hope that you can get Colin home to familiar surroundings. My thoughts and prayers to you both.
Regards
Tony F

Hiya Maureen, I was really pleased for Lawrie, he really wanted to do something for Myeloma, he did well.
How are you guys doing? I don’t get onto the forum too much seem to be very busy, we restarted a support group in Leicester at the beginning of the year, it seems to be taking up lots of our time.
As for me, I had my SCT just under 30 months…[Read more]

Hi Vicki.

Sorry to read about Colin’s woes. When I have my regular stays in hospital at the beginning of every year, it seems that way anyway, with high temperatures and high infection markers, CRP I think, they almost never discover the cause. You can also have infections without a high temperature – something I learnt recently.

As you may know…[Read more]

Hi all.

I can relate to the tiredness sometimes I struggle to get out of the bed. My best part of the day for doing things is before 2pm after that I just can’t be bothered! Sometimes have a nap in front of the TV at teatime but fortunately I’ve never needed to have a proper sleep in bed or a duvet day yet.

Every day is a gift.

Andy xx