[alexiswParticipant]

Hello Nadine. Like everyone here sorry you've had to join but as I have found very quickly you feel you are amongst some supportive friends who understand! No one chats much in our clinic waiting room that's for sure. John my husband was diagnosed in 2007 when he hit his 60th. He was very fit and was lined up for a SCT. He was convinced it would kill him but it didn't although it took longer to get to harvesting the vital stem cells as it wasn't as easy as anticipated with two separate efforts separated by a stint on Velcade. He was in remission for at least a year after that although he had problems with persistent anaemia.

As others have said it was no picnic but he would tell you it wasn't as bad as he expected. He found things like having tummy problems rather upsetting but the staff were great. Food was pretty awful and having favourite nibbles helped as did having a little laptop with a 3G modem (the tv didn't work in his room). Very gentle exercise is good too. He was out in three weeks at the end of May 2008 and by August we went on holiday to France but he tired easily. You mentioned travel insurance – we found Freedom Insurance very helpful (their details are elsewhere on this site). They know all about myeloma and assess you individually. They even insured us to go to the Caribbean for a belated Silver Wedding trip which was delayed by Johns recovery that year, although because that was classified as 'America' it was expensive (but it was worth it).

It would be good if you could persuade your Mum to let you go with her to consultations. I went with John a lot in the early days as John didn't take in everything and I'd scribble furiously when the doc was talking. I also went armed with a list of questions for the transplant team. Just keep up the communication with your Mum as well – talking does help lots.

Hope this helps you and good luck over the coming weeks.

Alexisxx

[alexiswParticipant]

Thanks to all of you. It's been really helpful for us both to hear of all your experiences. John read your comment about goldfish Carol and he knew exactly you meant although not quite so intense. He's had memory loss too but we can't entirely blame the treatment for that as he had a quad bypass 8 years ago and that definitely definitely made an impact! He's always been a bit forgetful too!

After his wobble on Friday when he slept/rested much of the time he picked up on Saturday and Sunday then returned to his clients' office on Monday albeit for half a day as he had to go to the hospital for an MRI. He had a bad infection in his hip in July and we're waiting to find out how well the tissue deep inside looks to be recovering.

Work has been a source of strength for him even when he's felt ghastly. He runs his own business and no work means no money! He really enjoys what he does (documentation & proposals for broadcast manufacturers) and it gives him the motivation to battle on. Although there were times before his SCT 3 years ago when he thought he couldn't carry on even living he felt so grim from all the drugs he'd been given. He pulled through although he's now on his 2nd relapse which was so disappointing.

Thanks again and best wishes to you all with your battles!

Alexis

[alexiswParticipant]

Thanks Eve and Tom. I told John I'd 'signed up' and he said he'd be a bit too shy to post anything but was really touched (& surprised) to see some messages appear so quickly. Will investigate 'Who the heck are you' later!

Alexis

[alexiswParticipant]

Hello there. So sorry to hear of your diagnosis. I have some idea of how you're feeling as I can still recall the shock when John was diagnosed. We'd never heard of Myeloma and even the consultant was shocked as he thought my husband had something else.

Like you I'm new to posting on the Forum but from the rapid raft of responses you've had I think you'll find a lot of new friends and lots of support very quickly. It's a fabulous repository of experience and information.

Good luck over the coming weeks.

Alexis

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