Tuesday, 27 March 2007

Am I bloggered? Is this face really bloggered?

To those of you who know of Catherine Tate's catchphrases( and indeed the Prime Minister's after Comic Relief) you'll understand the pun. To the others it won't make any sense at all!! But it fits the mood this morning. Am I bloggered? Yes I am- I'm well and truly caught up in writing this wee diary and more of that in a minute. But first a quick catch up.

All under control though more difficult this time to keep my blood sugars down- I guess there is a cumulative effect of the Dexamethasone I have to take into account when settling on my insulin doses. But not a major problem. The main issue for me though is how good it is to be able to do some work again when still getting treatment and the hope I can keep this going. Working on an exciting initiative that I'll tell more of in later posts but a very positive day yesterday which I'm sure contributed to my only having two hours sleep last night- felt like a wee boy at Xmas time!! More work meetings today and if I can pretend to stay awake I'm looking forward to them.

In terms of being "bloggered"- I'm finding writing the diary quite useful for me and not just for sharing experiences with others- I can be that selfish! One of the difficulties we as a family have found with Myeloma is that you never quite know what is going to happen next or indeed when it is going to happen- there is an inbuilt " uncertainty" factor. This has a number of implications for family and friends and in particular I'm sure there is an element of myeloma support fatigue and people never quite know when to hit the emergency emotional button for us. My style as you know is to be as open as I can about what's happening but there is a fine line to be drawn between underplaying what's happening or indeed overplaying it. For example, we want our children to know everything but equally don't want it to diominate their lives- so sometimes we don't tell them I've ended up in hospital until its clear I'll be there more than a day or two. Nor do we want to have all our social things dominated by myeloma ( my TMTMTM principle). So the blog is proving to be more than just letting me be the showman in my blood- its also a good way of keeping folks in touch without making it a big issue.

Its also a good record for me and a means of introducing things that I'm doing during treatment which are important elements in my life. If the revlimid were very effective but I had to sleep in a darkened room and have no contact with the world - I wouldn't want that. If it lets me do normal things as much as possible - even if it were for a shorter survival time- I'd much prefer that and allow family and friends to not feel that every event needs the emergency button. Not just about clinical success but more importantly about how it helps quality of life. My wife and I feel a wee bit like the holders of the nuclear bomb key- both of us have to agree when to press the red emotional button!

I should also point out this blog has the facility at the end of each post for you, reader, to post a comment- feel free to do so if anything comes to mind from my ramblings.

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