[GeoffBrowneParticipant]

Hi Christin,

Just briefly to add to tinkerbell's post, I too am from N Ireland, although I have been living in the Isle of Man for the last 14 years. I know what you mean about feeling isolated! However, this website is a great source of information and support. In particular, I have gained a lot of encouragement from people who have been through the treatment and are enjoying lengthy periods of remission. Keep focusing on the positive!

Like your dad, I have been in the fortunate position of having a really supportive wife and daughter. I don't know if this is the sort of thing that might appeal to you but last year my daughter took part in a sponsored sky-dive for Myeloma UK in Oxfordshire. It was a really great day and a wonderful opportunity for me to meet up with a lot of my friends to watch Claire have a lot of fun while raising money for a cause dear to all our hearts. If that's the sort of thing that might help you to deal with the challenges and anxieties that myeloma has placed in your path, you'll find more details on fund-raising opportunities on this website. Whatever you do, however, I know your dad will gain great deal of support from having such a caring daughter.

Best wishes to you all,

Geoff

[GeoffBrowneParticipant]

Hi Angie,

Another voice saying "it's the dex!". However, after a while you do get to know what to expect and everyone can then plan accordingly. For me, days 1 and 2 after the dex were when I was particularly low. But it's also good to know that the dex lows do pass and you can then look forward to several good days. Oh yes, and while you're on the dex it tends to keep you awake a lot!

Don't be too daunted by the stem cell transplant. There are lots of us out here who have been through it and who get back doing most of the things they used to do just 2-3 months after getting home. No guarantees, of course, but it helps to focus on the positive.

[GeoffBrowneParticipant]

Hi Bella,

I presume this is Bangor in North Wales rather than Bangor in Northern Ireland? I live in the Isle of Man and am having my treatment at the Royal Liverpool Hospital. They have been very good there so I would have no hesitation in recommending them. I'd like to think there might be somewhere nearer for you, however. Maybe Wrexham or Chester?

Best of luck with the job application if you do decide to go ahead.

Geoff

[GeoffBrowneParticipant]

Hi Derek,

Yes, I have had the same thing. I wasn't convinced at first that it was actually peripheral neuropathy and wondered if my leg numbness was caused by the same back pain that took me to my GP in the first place (leading to the eventual diagnosis of MM). However, I have had various scans and x-rays done and now accept that the leg and foot numbness is down to Thalidomide and chemo. Certainly the symptoms were at their worst while I was in hospital in March this year for my stem cell transplant, and I definitely recognise your description of annoying restlessness when trying to get to sleep.

It's much more manageable now, perhaps because of the amitriptylene and Zamadol prescribed by my GP. I have no problems sleeping any more and that in turn means less tossing and turning in bed and therefore less back pain.

The main issue I have now is simply standing still. After 5 or 10 minutes on my feet, the leg numbness starts to get really bothersome. Walking is much better – I can manage 45 minutes or so at quite a brisk pace.

I have read here that PN [b]can[/b] go away eventually but it can take around two years to do so (although it might not go away at all). I don't think it can be treated but it can certainly be masked with medication, so maybe a suggestion along those lines to your GBP or haematologist would be helpful.

Best wishes for a good recovery and as much "normality" as you can get back to.

Geoff

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