Last time I felt as shocked as I did last Monday, was when I was first diagnosed with breast cancer. Even as you think you are preparing yourself for difficult news, nonetheless it's never quite enough. And the thing for me is, I was still hoping that something conservative as a treatment option could make a difference to my back and my walking. You know maybe if a kept up with the Pilates classes,if those exercises the physio gave me could work and that I would actually do them four times a day,perhaps a wee steroid injection? Or even a telling off to lose more weight and get to the gym even was a possibility in my back pocket.
What the neurosurgeon did actually say after a brief examination and looking at my scan was, that surgery could help to take away the calicified prolapse that was pressing on my spinal cord at T11/12 but it carried a 50% risk of spinal damage which would leave me paralysed and without bowel or bladder function. Well "f*** that" was my first thought. So can I have physio or a steroid injection instead? No they won't help was the reply. What are my other options? What happens if I do nothing I asked; armed with my realistic medicine key questions.
Nothing else would change things I was told and as I had been getting worse, that was likely to continue. No idea how long or fast but surgery will only prevent further damage, not undo any harm already done. There is a window of opportunity, if such odds could be seen as any kind of opportunity.
I looked everywhere but I was presented with no silver lining. Not so much a rock and hard place as trapped in rocks as far as the eye could see. There was no push to have surgery and to be honest a real kindness in the consultation but clearly a desire for me to understand the reality. A Pilates class on a Tuesday night wasn't going to fix this I finally had to accept. Thankfully my husband had come with me as I'm sure afterwards I would have doubted such a message.
I was hit with shock that knocked me over like an unexpected wave. We left the clinic in a fog of fear with a promise to be seen anytime so we could ask more questions.
Since then I have twisted and turned in my thinking, crazy to have surgery, or crazy not to consider it? Should I stop working or keep going? Should I get a stick or will it be a wheelchair I will need? Am I safe to go out, should I get advice on exercises I can do to keep me strong? And on and on and on....
I've been getting advice from other trusted people too , so slowly my fear has settled a bit and I'm trying to find out as much as I can, look at a second opinion and basically question rather than just take the offer of a fairly devastating and one dimensional approach. I helped to write the self management strategy in Scotland and my role is in part to empower others to do what they can to enable their wellbeing and ensure they are listened to. That's the world I represent and as I love to live my life with irony I'm also, having just been diagnosed with a spinal issue, working with the Neurological programme at the Alliance to raise the voice of the Neurological community. This level of lived experience I would prefer to have avoided but as ever I will use it to deepen my understanding and influence change where I can, whilst trying to find my way through this and live my life.
Meantime I've bought a fancy stick to help when I'm out and about as I've been feeling a bit vulnerable in crowds and busy stations. I plan to channel my inner Mary Fleming ( aka my Mum) who used her stick to get attention and as a license to get away with anything to be honest. So yes, watch this space!
