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.
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.
Its been some time since I mentioned about the re-diagnosis business but this is mostly due to a combination of festive holidays and trying to track my notes down from Cardiff.
However, yesterday we had an appointment for Scratch, who has been a late walker and therefore a concern to us. So we met with a genetics doctor from GOSH (Great Ormond Street Hospital) who, after some fun with the family tree, began to look at Scratch, Nuzzle too as they are twins, Monkey as she has some hypermobility – and then looked at me (like a museum relic).
Then she explained about some bits going on in terms of diagnosis techniques that have changed over the years, that actually I should be seen by Queens Square in London but also know that things are less invasive than they were 10 or 20 years ago. The info would be of benefit now not just to myself but to Scratch too, as it can help any possible DNA testing for them. Yes, she said all of this about me.
She suggested starting with a blood test for CK markers on Scratch, and then then gave me a blood test note for DNA storage.
So, I am now resigned to the fact I’m heading for another biopsy but mostly because this will benefit my children now. Probably a needle EMG too, knowing my luck. The only immediate consulation about the impending jabbing was that they offered to take my blood on the childrens ward. They have the freeze spray there. And cool plasters.