I've never done this before - a quick, off-the-cuff blog to give you a brief update about my life. I think it's needed today though as in 24 hours and 40 minutes, I'll have the results of my genetic testing and I'm freaking the f*ck out.
It's all come as a bit of a shock. I know that sounds ridiculous given I asked for this, but the whole process has taken 15 months, and knowing it will all be over tomorrow is daunting. I promised I would write a blog about why I wanted to find out and I certainly will, just not now.
This journey has been such an emotional rollercoaster and the thing I've found most confusing is how my attitude has changed. Before I knew the date of my results, I was very pragmatic and kept telling myself 'knowledge is power, understanding my future will allow me to plan', but once I got the call my thought process changed. Rather than being sensible, all I'm thinking now is 'I'm going to die the same way as mum, this is what I'm going to become'. I'm reminded of it every single day, I go around to mum's house and spend time with this empty shell of a person who doesn't speak, can't move properly, doesn't know who I am, and doesn't feel the love that I give her. I know that sounds harsh but it's the truth, and that will be me if it's bad news tomorrow.
People always tell me 'well life isn't promised anyway, you could die from another unrelated cause so why spend time worrying about this gene?'. Whilst I know they are right, it's not the same. The word could is so important. Yes, I could get hit by a bus. Yes, I could get cancer. If that doesn't happen, I will get FTD. It's definitive, and it's different.
I know you're probably reading this thinking 'if you're that worried about it, why the hell are you finding out? You don't need to put yourself through this?' but I do. Regardless of the nerves I'm feeling, I still know it's what I need to do. If I don't find out, I'll have those negative thoughts for life. I really want to emphasise that I'm allowed to feel like this. Just because I asked for this and I'm in control of finding out, I am still allowed to feel anxious. I know I'm strong and I know I can handle whatever the result may be, but this will change my life and nerves are normal. If you're in a similar situation to me, please remember that nerves don't mean you're weak, it means you're human.
Anyway, I've got loads of other shit going on that I need to tell you about. Mainly on the lovely topic of 'care homes' which is one gigantic messy shit storm. I bet you can't wait to hear me rant about that. For now though, I'm focussing on tomorrow. I've called it D-Day, I know I can't compare my worries to the Normandy Landings but it's still a day of importance to me and I know whatever the results, it will be a day that commences change in my life. I've been honest throughout this whole thing so I will keep you updated and I'll post on my social media to tell you my results.
Thanks for all your support, blogging makes such a difference to my life. Jess x
Oh dear, dear Jess. How powerful is the final phrase of this post - "....blogging makes such a difference to my life" I feel so privileged to be on this journey with you, if only by reading your posts and responding. We may never meet (notice I wrote may ) but just know that I am virtually holding your hand. Your dear mum would want you to know as much as possible about what lies ahead, to make plans, to organize, muster forces. I want to tell her that she created the most amazing, wonderful, phenomenally brave daughter. There is so much love, so much stark realism in your posts. We're here when you're ready to let us know.
Funny,…
Thinking of you Jess you are so brave to do this and really hope tomorrow is good news xx
Hey Jess. I can't even come close to imagining how apprehensive and anxious you must be feeling right now. Sending all of my thoughts and love over to you. My lovely Mum had bvFTD and I lost her at just 69 years of age not so long ago. I donated Mum's brain tissue and spinal fluid to research and I was asked at the time if I wanted to know if I also was carrying the gene. I declined and stick with my decision now but I completely understand why you want to know. Thinking of you and your Mum. If ever you want to chat, just let me know xx