Hi Mavis.

It’s great to hear from you. I hope everything is as well as it can be with you. I’m not on here very often myself now either.

My PPs are determined to keep slowly rising so I guess another trip to Greece is in order whilst I still can.

Every day is a gift.

Andy XX

Hi Susie.

There still a lot of discussion going on about the benefits of Zometa at the moment. Some claims have been made that it has an anti myeloma effect but that hasn’t been verified.

I’d been on Zometa for just over two years before I had to stop it due to ONJ. At last years info day I asked if I would be able to restart Zometa when my ONJ…[Read more]

Hi Sue.

I would recommend the counselling.

It’s a massive blow to be told you have cancer and then be plied with lots of pill which basically poison us. I went through a hard time after being diagnosed and it took time for me to get back to some sort of normalcy.

Quality of life for me is the main thing and as he is in remission there should be…[Read more]

Hi susie

4 yrs ago pp 45

Dec slowly creeping up from 10, started treatment post operation at pp 18, now after 4.5 cycles down to 9.

Good luck with everything.

Mike

Sorry
Don’t know what went wrong!!

Hope you get the gist!!

Mike

Hi susie

Relapse, now velcade, that’s me!!

My pp’ started to increase a little 8 months ago, just single figures, but then I got neck and back pain and scan showed a broken neck vertebra which needed stabilising surgery. Had that, few week to recover then started twice hi Susie
i started on twice weekly velcade in jam after 4 years remission.…[Read more]

Hi Chrissy

I don’t reply very often, but I do look!!

Myeloma is very scary when you first get it, and remains so, but I do think it is viewed as a treatable and controllable (but not curable as yet ) chronic illness.

Do not panick about the timescale, it does seem forever, but it’s ok.
However start shouting loud if you get increasing pain…[Read more]

Hi all.

Had a wonderful time in Kefalonia the weather was very kind though the wind did get up for a couple of days. Now recharging my batteries for our next trip. We’re of to Belgium in a few weeks for a long weekend so I’ll probably have a few Belgian beers Tony whilst we’re there.

Every day is a gift.

Andy xx

Hiya Susie.

No one knows is the answer to your question. However the chance of getting to remission with Velcade, in my view, and being drug free again is worth going down the drug route. Obviously that’s only my point of view. There is always the argument of quality over quantity of life that must weighed up.

I can’t really recall many problems…[Read more]

Hi all.

Thanks for all your good wishes.

I’m actually soaking up the vitamin D as I write this beside the pool in sunny Kefalonia. It’s lovely and warm but not too hot. A beer or two also help keep the temperature just right.

Thanks for that compliment Annlynn. It’s very humbling to know I can inspire someone but also very satisfying that I’m…[Read more]

Hi Susie.

I’m doing ok though it looks like my treatment is starting to fail.

I’m actually sat in the sun on the Greek island of Kefalonia writing this post. It’s our first trip abroad since my little run in with pneumonia.

As regard to the blue badge I think every council has different qualifying criteria so your local council maybe the place…[Read more]

Hi Susie,

If you have the higher rate mobility award on DLA and I suppose PIP you automatically qualify for a blue badge.

Every day is a gift.

Andy xx

Hi Hillbum,

we’ve been using nowicantravel for a few years and have had no trouble with them. We do it over the phone as most insurance websites aren’t geared up to looking at individual circumstances. We just got our insurance through them for a week in Greece that covers all my Myeloma and my wifes diabetes for £58.

When we first started…[Read more]

Hiya all,

Well here I am as promised posting on my Dex induced sleep deprived night! Though I maybe jumping the gun a bit as it’s not even midnight yet.

Anyway a little update – Last week I was feeling a little under the weather Hmmm more under the weather than normal I guess I should say. Anyway I had a cold and a cough but that’s no big deal…[Read more]

Hi Peter,

if I have ANY problems or worries I call the day unit, or at night the open access number, and let them know I will be shortly paying them a visit as I did last Friday. They encourage us to do that. Luckily I only live 10 – 15 minutes away so it’s no hardship for us.

I hope everything gets sorted out on Tuesday for you Peter.

Every…[Read more]

Hi,

My advice is simple AVOID anyone with any sort of infection it’s not worth the risk. For your information infections are the biggest cause of death amongst myeloma patients.

Every day is a gift.

Andy