No.74. Simple pleasures.

Chris is off to see the speech therapist today and then after to our GP to have another INR blood test done for his op on Friday.

He went to see the dietician yesterday, we were bombarded with info and some of it was hard for Chris in particular to take in. After we told her about the problems Chris has with eating and choking she suggested using the PEG to supplement his diet. One option was the drip feed overnight. I could see that Chris wasn`t very happy about that, but when it was explained that he could still eat during the day, but that he wouldn`t have to eat so much at a time and could just eat what he fancied, he could see the sense in it. She said for example, that a 500ml bag would be put up overnight. You can`t put pureed food down the PEG as the tube is quite thin, so you have to use the liquid feeds that will be prescribed.

A nurse is going to come from the company who supplies the drip feeder and she will show us how everything works and then we will get advice on how to actually use it. The dietician is going to get this all arranged for when we come back from our holiday in Somerset. We didn`t want to have to worry about all of that until then. It was all a little confusing, I`m sure this will all fall into place eventually, yet another step on this unwanted journey.

The dietician asked Chris if he had anymore questions, I could see he was mulling over something and then he said `I`ve had my last pasty then? ` which was funny and sad at the same time. She said the inside would be OK, but wouldn`t recommend the pastry. Chris`s reply was `Oh.....'. On the way home I asked Chris if he wanted me to get him a small pasty, maybe his last one and I stopped off at the village shop and picked one up for him. I carefully cut off the crusts and cut the pasty up in very small pieces. Chris ate every bit of that pasty, he even nibbled the crust bit, by bit, it took him ages, but I could see that he enjoyed every mouthful. We all felt a little sad that Chris may have had his last pasty. That's quite a big deal to a Cornishman.

This disease takes away the big things of course, but it also steals the simple pleasures in life too. It is so very cruel.