December 14/12/18 – The moment of truth

Frontotemporal dementia gene mutation

13th December 2018 a day I will always remember.

As I woke up I realised I had lived this day over and over in my head for months and months. What will the result be? Do I have a gut feeling? Will I be celebrating this evening? Can I save my family from a lot of pain? If it’s bad, how will I deal with it? Question after unsettling question zapped through my mind. At the same time I felt resigned to the fact, that if its bad there is little I can do about it. I had just reached the point where the pain of not knowing was as bad too. I just needed to know. 

What I should mention here though is that everyone is different and has a different journey in relation to genetic conditions. There is no right or wrong answer to the knowing or not knowing question, there only is what is right for you in terms of finding out or not knowing.I could only make a decision with what was right for me and my circumstances and for me I could not live with the not knowing. 

As I got up that morning, I promptly hit my head hard on the sideboard bending down to pick something up. This day was already not going well and now I had a big bruise on my head. I had only my cousin who was coming with me and a couple of my closest friends that I was getting the results that day. The people closest to me who had been by my side, propping me up when I needed it and on many occasions been my rocks and making me smile through the tough days. 

I set off from home and the second challenge of the day was that the car broke down on the way to the station. I took it to the garage only to find my bank cards were declined. I then went to the bank who promptly informed me they had stopped all my cards to prevent fraud and that they could not activate them without photo ID. My 2 year old had posted my photo ID into a gap in the floor a few weeks earlier so I had nothing with me. My day was not going well.

With 30 mins to go before my train was due to leave for my appointment I was in the bank trying to reason with the staff and explain the urgency of my current situation. I felt like I was standing on a balance beam trying not to fall in a force 10 gale. Suddenly an older lady who could clearly see I was not in the best of moods came up and offered to drive me home to get some ID. I was speechless and grateful. It never ceases to amaze me how in the worst moments of ones life the kindness of a random total stranger can change everything. 

Anyway with my car in the garage, ID duly collected and cards finally reactivated and with 20 minutes to go before my train I dragged my emotional and very windswept self into the nearest coffee place I could find. All the while panicking and trying not to miss my train. You know you look bad when the staff take one look at you and say “sit down, whatever it is will wait I will bring you a coffee and a croissant and I won’t charge you.” This was the kindness of strangers part two.

My cousin, who I am lucky enough to have known all my life is also one of my best friends. He met me at the station and one look between us was enough for my tears to start. “Pull yourself together Hannah, these were the words echoing in my head. I sat on the train desperately fighting the urge to run away or to just pretend this whole thing wasn’t happening. I had waited for what seemed like ever for this result and now I just wanted to escape. It felt similar to when I was pregnant and you have zero control over whether the beautiful baby you are expecting is a boy or girl. I had zero control over what the result was to be. On the one hand my gut would say don’t worry you’ll be ok and on the other I knew deep down the result was not going to be what I wanted. 

With my best effort to keep my head up we arrived at UCL, a place in London I am now becoming familiar with and for this particular visit some dutch courage was needed. We went into the UCL cafe bar. I sat at the table with a rather large gin based cocktail in front of me. I looked at the delicious food arriving at other diners tables and could only wonder what my fate would be. Would I be celebrating later with a fair few more of these cocktails or perhaps commiserating by eating a fair few ice cream sundaes that had just arrived at an adjacent table. My mind was racing.

The time had come we were sat in the waiting room. I relived pretty much every appointment I have had before, the sights, smells, I even remembered all the conversations and the staff – suddenly it all seemed uneasily familiar.

One of my biggest fears is that I would know my result by the expression on the doctors face before he had even looked at me properly. I had dreamed of this everyday for 9 months, the result, my reaction, what it would mean, how would I receive the news, how would I tell everyone. Racing, racing, through all the different scenarios, the pressure was relentless.

“Hannah Mackay”…..a nurse said…… it was like the room emptied and suddenly everyone else was just a blur, the corridor had become like a fairground experiences, moving lights, distorted elongated reflections in the mirror and wobbly, discordant noises – the waiting room suddenly became distorted and I felt faint. I walked into the small and I have to be honest rather pokey room as the door opened I just looked at the floor and sat down on a rather precarious looking seat, which was held together with masking tape. I remember those fateful words before I even finished sitting down “well you know why you’re here and I can tell you it’s not good news” 

That was it then. No further explanation needed, 18 months of wondering, worrying, and agonising over whether to have the test or not, the not knowing pain of not knowing had come to an end in one sentence.

Tears rolled down my cheeks and I tried desperately to keep it together. To be honest I have no idea what happened for the next 10 minutes what was said I just can’t remember. However after a few minutes I realised I wasn’t crying wholly due to the result, which was obviously not what I hoped for and devastating for me and for my family. I was crying with relief that the not knowing was over now. I suddenly felt in control of my life again. It was a fleeting feeling at that time and pretty much as soon as I thought “Okay I’ve go this” the relief was replaced with a feeling of desperate panic and claustrophobia. I looked at my cousin and said “I need to get out of here” as I ran through the waiting room and back through all the people that before had felt ever so familiar. 

Outside the hospital there was air, I could breathe. Wrapped up and protected by my cousin from the rest of the world. People looking at me outside UCL could only guess what news I had just been given. At this point the tears turned into deep sobbing and the words “you will be up and down for the next few weeks and months” repeated in my head like like a very unwelcome alarm clock. 

We headed home on the train with a can of super market gin and tonic in my hands to steady my shattered nerves. To top off my day as the train pulled out of London Bridge my phone flashed up with the link below from a friend.

This performance happened 5 minutes before we reached the station and we’d just missed it. “Typical” I thought to myself that pretty much sums up my luck. However hidden in it was a message that has stuck with me ever since. We all need somebody to lean on.

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