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Sunday, 14 August 2011


I feel as though I have neglected the blog this last week (again) so here is a quick catch up.

After the Velcade last week, the pain in my feet got progressively worse. I went to have my next dose on Thursday, but after a discussion with the Dr’s they decided it was safer skip this week again. I hope that the para-protein isn’t creeping back up during this time, but as the Dr said …  and I quote ‘What’s the point in having a transplant to make your life better if you can’t walk afterwards’. There is the risk of permanent nerve damage from the Velcade to the point where I wouldn’t be able to walk .. maybe a good job that I skipped another week. At the moment, during the day; the pain killers seem to manage the pain so I can walk around without any difficulty. The problem arises more during the night when I’m not taking any pain killers. I wake up a few hours after taking my last pills at night. The pain just wakes me up and I can’t get back to sleep. I normally try getting up for a few hours, watching a bit of TV and having a cup of tea and then attempting to go back to bed to see if I can manage another couple of hours. Last night I took some other painkillers (gabapentin) during the night to see if that could help. I’m not sure they really did anything though as I got about the same amount of sleep as I did without taking them.

The beginning of the week I did another photo shoot of some friends children, which Charito came to with me to help me set up. She want’s to learn more about the how I set up the photography equipment so that she can help me during the times I’m not feeling good.

I was suppose to haven another shoot with a model on Wednesday, but I cancelled that as I was in too much pain the night before with my feet and I wasn’t feeling up to it.

Thursday was my hospital appointment as mentioned and I also had to do a bit of driving, more than usual as we went to visit Charitos sister and drove home again on the Friday afternoon after doing a wedding shoot (more on that another time).

So I have been pretty exhausted and stressed more than usual this last week; however the last two days have been very relaxing as I haven’t done anything apart from watch the complete Season 1 of NCIS Los Angeles. Which I must say I thoroughly enjoyed.

This next week I think will be taken up with editing all of the images I have taken. I have a bit of a backlog at the moment and still need to finish of some that I did quite a while ago.

So my target for this week is to keep occupied with image editing and get back on track.

I’m back to Chester hospital on Thursday again, hopefully feet will be ok and I will get another shot of Velcade to keep me going until my transplant date.

Friday I have an appointment at Liverpool hospital so I should have some further information as to dates and the process etc. I should also be told date to give Nigel so that we can arrange to extract his bone marrow.

The big day is getting closer.

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  2. Hi Sean, I'm probably sounding stupid but is there any reflexology or any pain coping mechanisms that the hospital can offer you, or something you can look into to help? It must be awful to have to go through it daily. Take care.

  3. Sean,
    I just read this on the ACOR myeloma listserv about neuropathy and post-herpatic(shingles) pain. Not sure if it works but it may be worth a try since you are having such troubles with both.

    "In his remarkable book "Healing Spices", Dr. Bharat Aggarwal describes how
    capsaicin, an alkaloid concentrated in the interior seeds and membrane of
    chili, can be used to get relief from debilitating nerve pain caused by
    peripheral neuropathy or postherpetic neuralgia from shingles. He names one
    FDA approved capsaicin cream, Zostrix, and through Internet search I found
    another one, Qutenza. The creams are supposed to provide long-lasting relief
    for even extreme pain, to have no or little side effects, and to have no
    counter-indication for prolonged use."


  4. Thanks Denise - I'm going to try and get hold of some tomorrow. The Zostrix I think I can only get as a prescription in the UK, but Casicum I may be able to buy over the counter. I may wait until Thursday to see what my Doctor says though, just to be on the safe side :)

    Thanks for the research.

  5. I hope it helps Sean. Since that person sent that info. in, several other MM'ers have now written in to say they've used it and had very good results. Makes me wonder why doctors are not recommending it more!