Hi

You have both certainly been through a lot over the past 14 years. I think it’s terrific news that your husband gained 14 years of remission from his transplant, but can totally understand your shock when the cancer has returned especially when you thought the cancer was curable. I would suggest you find a specialist myeloma consultant to…[Read more]

Had my SCT in Jan’14. Prepare yourself mentally, it is not easy and you will feel low especially if you have the nausea and diarrhea but in the grand scheme of things it won’t last long. Do everything the nurses tell you. I was told to change my toothbrush every week to reduce the risk of infection. I had to change my own bedding everyday, the…[Read more]

Hi there,

Rebecca speaks a lot of sense, people seem to concentrate so much on the inflicted to the detriment of the carer but the role of the carer is as important as the medics. Rebecca and Cashong’s point about tough love is important, my wife gave me s..t some days and at the time I hated her for it but thank her now. It is not easy when…[Read more]

Hi, I’m really sorry to hear that your husband’s kidney functions are out of range and as a result Zometa has been stopped. You always will be concerned when you have to stop taking a drug which provides bone strengthening benefits and possible anti myeloma properties, but it’s important your husband’s kidney functions are working within range.

I…[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 Jan

In addition to the useful information on this site, there’s also some interesting forum posts on The Myeloma Beacon website where individual myeloma patients have outlined their personal sct experiences.

Depending on your hospital’s policy on sct procedures, you might find some minor differences such as: * The high dose chemo of…[Read more]

Hi, That’s good news about your husband trying a different pain medication. Let’s hope it helps with making the pain more tolerable. There’s nothing worse than constant pain. Don’t forget to discuss the matter with your consultant, because your husband might need another MRI scan to ensure there is no further bone damage. I would also ask your…[Read more]

Hi Andy, I didn’t know you got vitamin D in beer, perhaps Euro beer is different from bitter!
Enjoy it mate, I’m not envious at all!
regards
Tony F

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,

It’s worth mentioning the pain to your consultant in order to ensure there is no further lesions or fractures. Perhaps pain medication is necessary for a period of time to help relieve the pain. However, it might just take a little while to improve especially after what your husband’s body has been through during the sct process.

After…[Read more]

Hi Andy

Hope you have a great, relaxing time. The sunshine will certainly boost your vitamin D levels. Hopefully your current treatment will still be able to contain your myeloma levels.

Jan

Hi dazz, I found the effects of the chemotherapy were cumulative. It is true that everyone reacts differently so hard to predict effects for you. I guess just being diagnosed with MM was a life changer for me; I had always been fit, well and active and adjustment to a new way of being has taken time. Be kind to yourself, ask lots of questions…[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 Maureen,

I’ll be thinking of Ian on the 17 May at his next consultant’s visit, because my next visit is the 16 May. You always tend to worry a little before these visits whilst you wait for your myeloma levels. Hopefully Ian’s light chain levels will remain stable for a long time yet.

In preparation for my sct, I visited my dentist for a…[Read more]

HI, as Jeff says contact Macmillan they will help you to complete the necessary paperwork. In my case Leicester CC received the completed form, phoned me and we did the payments over the phone. Cost was £10 for 3 years
Regards
Tony F

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]