Sunday, 10 June 2007

Dexy's mid night runners

(Message for Fred- no news on the dog yet- test results due back this week- but fair to say whatever it is he is struggling a bit)

Dexy's mid night runners( the dexamethasone/steroids) up to their old tricks after my first lot ( 20 tablets at 2 mgs each so still a hefty dose). My blood sugars shot away up and all the classic signs of diabetes have reappeared- despite my upping my insulin. Also awake until about 3 and then broken sleep until about 7.30 but better than some nights when I can't sleep. Fortunately I am down to one pulse ( a 4 day period on the dex ) and in any case the study protocol states that cycle 5 and 6 goes down to one pulse so I'll shortly be back in line with the study protocol. Will get a new para[protein result tomorrow so should know how its doing. The team are all optimistic that I'll manage my 5th cycle ( I think I've told you I've never made the complete 5th cycle in any of my many treatments) and the are all working their medical socks off to ensure that happens. Fact is- I wouldn't be here without their efforts and as you know I was predicted by one medic that I wouldn't be here on my birthday which was 5 weeks ago). So despite the effects of the steroids I'm happy to bear that small cost for being here longer.

One of the difficult things for us myeloma patients is that we often look very well though those who have seen us through the treatment also know how ill we can look. But it must be difficult to get over to folks that we have an incurable cancer when we look so well and are still managing work of a sort. One of the good things to come out of the trial ( and I hope you see my blog reflects it) is that quality of life is as important as staying alive. As I've said before if the lenalidomide kept me alive but wouldn't let me leave the house and pinned me to the fireside with my slippers and pipe( metaphorically speaking!) I wouldn't want that. I would rather have less time but be able to use it better. So all of what might seem to you to be personal information is me simply letting you and the Celgene folks that make the drug know that I'm still able and happy to be climbing ladders( despite the plates and pins I now have) installing solar panels, building gates, installing new water tanks, doing work with UHI; going to the South of France by plane and train, and generally being around with my family. All this is in the context of knowing - as always the case with myeloma- its all so unpredictable and uncertain as to how I'll be in the next week or the next few months. For example, despite feeling quite well just now I have no problem with and really quite welcome my outreach contact with the Marie Curie Hospice knowing that the hospice is not needed just now but might be further down the line- whenever that is.

I was also asked yesterday if I'd become a more spiritual person- I think that will keep for another blog- have a think yourself! I have to let you know that we went to a caravan for a long weekend at Balir Atholl caravan park a wee while ago- the caravan number was "42" which we thought quite appropriate as it is of course the answer the computer gave in Hitch Hikers guide to the galaxy when asked what the meaning of life was. So now I know what its all about!

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