Having had a bit of a break from writing, mostly because I’ve been writing reports during the time I’d usually blog, I’ve not actually told anyone that I went to the hospital yesterday.
I went because they have now analysed the muscle they took out of my leg – the biopsy. Which means they might know or not know whats wrong with me any better or what prognosis there is…
It is very difficult to know how you should feel about this when you’re 30 years old and mostly in your life all you’ve know is that you have a non-specific muscle disease. Part of me was quite excited – what could they tell me? What could they offer to help improve life? Could they know anything new?
At this point, I would hope for a drum roll… as the doctor scrolled through the MRI scan images, noting various muscles, bones and… my bladder.
So, first off, no, the biopsy showed nothing. Which means there is no change.
Secondly, its unlikely the girls are affected by my genes – phew.
Third, they’re checking the DNA for other things now…
Which kinda leaves me almost where I was before, except with a little more certainty over the girls.
But otherwise – I don’t know how I feel – am I happy? Annoyed? Sad?
This is it – I don’t know how I feel. It’s almost empty. I kinda wish they had told me something earth shattering… would have maybe given me something to complain about… because instead, I’m whinging about nothing.
I’m sat here still waiting.
And its beginning to really frustrate me, piss me off and get annoying.
I don’t particularly want to have the biopsy. I live quite happily in my life and get on with it – I’m doing it because MBW (bless her) wants some answers for the girls. I think I’ve mentioned I’m petrified about needles and pain.
But its being delayed and I suspect that although very good, the surgeon doesn’t quite get that in my head I’m managed to psych myself up for this at the times specified.
I recognise its his choice to juggle his surgical list about. I recognise that he might be having a long-running morning.
However, it would be really nice if he could recognise that I’ve made a number of arrangements, I’ve managed to convince myself that I can do this – if he stuck to the timetable submitted last night.
Instead, I just feel really crap and I am beginning to consider if any of this is actually going to be worth it – mostly because they’re allowing me to sit here and stew.
I feel bloody sick and fairly close to chucking the towel in and going.
Although playing with the blood pressure charts is becoming fun. I might have to seek some solace in that game.
By the time this goes live, I’ll actually be in the middle of one of the worst procedures ever. I can handle MRI scans. I can handle hours of prodding, poking and being made to move about as if I were a sack of spuds.
But I don’t like needles. I don’t like needle EMGs. I don’t like biopsies.
At 10:45, I will be going in for a needle EMG. I’m, needless to say, not looking forward to it.
On Wednesday I have a muscle biopsy. Again, this is not reaching the top 10 in this years fun things to do.
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In the tube. Out one lift, head for the next – flat to down hill stretches, perfect for the speed. You know when you can hit that perfect stretch – the turn of effortless speed combined with a smooth corner, accelerate a little and ride out.
Its a perfect race track, given the right conditions.
So you get on the road and there is a tractor up front. Another tractor in front of that one. A truck is overtaking them and in front of him is a little Korean made Kia towing an Abbey weigh-a-ton caravan. On coming is a queue of Fiestas and Corsas – everything you don’t want to see.
You get those moments on the tube too. Where you can’t get past anyone – it is going to hurt, the fact that you know you are a million metres per second below the optimum speed you could be doing but instead you are forced to sit. Slow. Stop.
It almost hurts. You are literally trapped and the only thing to know is you will have to go through this.
I have now got a date of the needle EMG. The biopsy. 3 days in help inside a London Hospital which is going to crawl. And hurt. It is going to be hard. It will be like following the tractor towing that caravan. I’m not keen on needles or pain at the best of times and this is my worst nightmare.
The hardest bit is that I know that I’m heading towards that queue. I know its there. It will now play on my mind constantly.
I’m going to have to think of a really nice stretch of terrain to get me through it.