We took ourselves off to Treliske, an hours trip, tackled wheelchairs and lifts and eventually found the endoscopy department, tackled the doors to the reception with help, only to be told that they had forgotten to book the anaesthetist!!! I couldn't believe it. It was obvious the nurse was angry, but that wasn't much consolation for Chris, especially as he had two choking episodes yesterday and we had both psyched ourselves up for it. They said they would reschedule it quickly, I hope so. I contacted Chris's MND nurse and she is going to help chase things up. We were not happy. A precious morning was wasted, although we did get to visit some of Chris's family who live near to Truro, which is always nice. He was starving by then too, so his sister obliged with some much needed grub for him when we got there. He had the first choking attack of the day there too. It is always scary, but I got a bit emotional, I think I'd been on the brink since leaving the hospital. At least when we arrived home the correct size wheel chair had arrived, it looks more like a normal wheelchair now, rather than a bariatric one!
I felt really emotionally drained later, especially after Chris had his second choking attack. I hadn't puréed his evening meal quite enough. I know now it needs to be like thick soup. He was very tired too. He hasn't said much, but I know he wanted this PEG done yesterday. He tried to keep smiling, but it had drained him too. I was just about holding it together and then I read that Tesco were donating a percentage of their income from their ice sales to MND. Now I wouldn't normally get tearful over anything Tesco does, but I broke down. All the money being raised, donations, family members doing Ice Bucket Challenges etc and then topped by yesterday's disappointment over Chris's PEG op, just tipped me over the edge. I also don't usually take too much notice of people who write negative stuff on the internet either, but yesterday, one idiot caught me at a bad moment and I gave the troll a good mouthful. One should never feed a troll, but it felt good at the time. A nice cuddle with my husband on the sofa with some alcohol made things a little better and today is another day.
Everything in life attracts the good and the bad, especially in human nature, but the bad fades into insignificance compared to the goodness that is out there, Family, old friends, new friends, they are what counts. The people who are there for you, who understand and even if they don't, they do their best to try.
Life sucks sometimes, like operations getting cocked up or with bigger things, like your loved one getting MND. Somethings can be rectified, some can't. People say we are brave, everyone with MND is brave, there are only two options, to give up, become full of self pity, or show this disease that it has a bloody fight on it's hands and I am going to be there fighting it with my husband all of the way. We may be down, but we are certainly not out.
