The Summer of 2018 – decision time

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A lot of fun was had over the summer of 2018 with family and friends, the school holidays ended and as September started I knew the time had come to make a decision.

I started my appointments at the genetic testing clinic at UCL in London. Walking through the doors for the first time was unreal as was the question from the professor who asked “how I was feeling?” Always a difficult start for someone who is watching their Dad slowly succumb to frontotemporal dementia (FTD). Also deep down I knew I could be next and then my kids there after. Utterly overwhelming.

Anyway the poor professor having asked the question was in no way ready for the answer. All my thoughts, my emotions and the rationale behind my need to find out came running out of my mouth like a tsunami. It took me half an hour to stop talking, to his credit he did not interrupt me. When I finally paused for breath he said in a very calm, polite and professional way “I can see you have considered everything”.

My plea was, having made the decision and having been in limbo for at least a year, that I wanted to find out as quickly as possible. 

It is not really possible to describe the three months that followed committing to the test.

Without my knowing it consciously, with everything I was facing I had started a grieving process, even before I got the results, a lot happened. The trips to UCL for counselling became lonelier, as the results grew nearer.

Months and months of waiting for the conclusion of a simple blood test dominated everything. It was all over, I had done the test and as yet my own fate was not known.

It is important to anyone going through this genetic testing process to have their expectations managed I believe. The sessions prior to any test are not specific to the condition you are being tested for, which I think is probably something that could be improved. The sessions are more information sessions about the genetic testing process and the impact of the process itself. It was important to have something to help you through, but I would like to see some reference to the specific condition you are being tested for. It would help people to get through the days when their heads are spinning and life seems to be spiralling out of control. At that time mine certainly was.

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