Monday 4 May 2015

No.175. Diagnosis day. 5/5/14 (5)



May 5th 2014, diagnosis day.

Not long after the nerve function and electromyography tests Chris had another appointment come through. Something told us that being called in on a bank holiday Monday with a couple of days notice and with an 8am appointment didn't bode well. By now Chris knew that MND could be a possibility. I wanted him to be prepared just in case this was the diagnosis, if it wasn't then that would be brilliant.

We saw the consultant Dr Stewart bright and early at 8am on May 5th. He was very nice and he examined Chris and asked Chris lots of questions. In the end he said that after all the tests he would have to reach the conclusion that Chris had Motor Neurone Disease and that he was very sorry. There was no definitive test to diagnose MND, but after everything else is ruled out. MND is what you are left with. I had told him that I had looked it up online and I knew about the symptoms and more importantly the prognosis. I hadn't told Chris everything. Two to five years on average, that is what everyone gets told I think. Even though we thought we were prepared we still both cried, Chris especially when Dr Stewart said it was terminal and that there was no real treatment or cure. He mentioned Riluzole, which can extend life by about 3 months, but to date it seems to have had no effect on slowing things down at all . He told us that he would see Chris again in a couple of weeks to give time for the diagnosis to sink in and to explain what would happen next. Dr Stewart then took us to a side room where the receptionist brought us a cup of tea and left us alone to start this very long grieving process. 

It is not every day the one you love gets a death sentence. 

How could this be happening? Chris really had MND? Dear God, this couldn't be true.

We rang family while we were in there, breaking the news to them and after we went up to visit Chris's sister Denise and her husband and Chris's dad.

We needed to see the kids too, especially Chloe who was 350 miles away in Brighton and would have to deal with this news on her own. I had already booked to go and visit her by myself on the coach the following weekend a while ago, but now decided Chris was coming too and booked a second seat, so that we could see Chloe soon. She needed to see her dad and he her.

I guess we have all had many bad days in our lives, I know I have, but this day...this day was the worst day ever. How our life was to change, it would never be the same again.

Once MND enters your lives it never leaves......ever!!