Wednesday 4 April 2007

Day 28 and talking to the moon

This is Day 28 of cycle 1 and tomorrow I'll start Cycle 2 when the fun all begins again. Unfortunately, my diary has made day 1 of cycle 2 a bit heavy as before I get started on the Revlimid /Dexamethasone package in the afternoon I have my Zometa ( bone support drug) at 9am followed by my IGG infusions. Though this isn't disastrous- in my case I usually feel a bit flu like after the zometa- just means I rattle and squelch for a wee while with all the drugs going in on one day. In terms of how I've felt this week ( the drug free week)- I had a low couple of days when I finished the last lot of steroids but have gradually picked up and feel much better now. I guess that's how its all meant to work out- that by the time I start the next cycle I've recovered from the one before. Certainly needed the break.

If any of you have followed my diabetes and blood sugar results at my other website I need to make sure you know that the diabetes folks want me to keep my blood sugars slightly higher than normal- aiming for a 7 or 8. I think the thinking behind this is that given my blood sugars roller coaster and go very high with the Dex they don't want them to plummet at the other extreme and put me at risk of a hypo. So- a slightly higher than normal safety margin built in.

One of the things I'm becoming increasingly aware of is that I'm less concerned about my survival- how long will I be here? What will it be like etc? and more concerned that my family will be OK. This doesn't mean that I don't want to stay around as long as I can- I DO!! But just that I'm quietly and happily resigned just to make the best use of the time I'm able to have- whatever that may be. Probably my TMTMTM ( Theres more to me than myeloma) principle kicking in again and don't want to waste time fighting it all ( you may still -I hope- find yourself reading this blog next year!). Much more concerned that Elspeth and the kids are all OK. In that respect I came across a wee present for Elspeth ( those of you who are not romantics be warned- romantic alert coming up).

I've been a Sade fan since day one when I first heard her and she was unfashionable in the 80s. Hidden away on Lovers Rock ( its great treating music as more than musak- you listen to the words as you're meant to) is a beautiful wee song called the Sweetest Gift- about speaking to the Moon. In my Dex induced sleepless nights I've done a lot of speaking to the moon and the Sweetest Gift captures beautifully the wish that the people you care for are looked after. One of the nice things about being around is still being able to look after folks who look after you. Have a listen to it if you can. But be warned- you will need a pack of hankies.

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