Day 13 Unlearning (part 2)

Ringing in the changes…..

The ghost writer returns, I’m quite liking these opportune days of being able to write to you. Firstly, let me just let you know:

• Simon is very tired today, and so has asked me to write today’s blog
• He hasn’t started using that bell…… yet …….

I cannot begin to discuss what is it like to be at home without commenting on our departure from Basingstoke. The team in C2 ward have been beyond wonderful, they are everything that encompasses the NHS. The care for both of us during our stay has been nothing short of excellent. Their concern that we had everything we needed and that Simon was sure he was well enough to leave was amazing. We didn’t feel we were rushed out of the door. Thank you doesn’t seem enough. There were hugs and best wishes from everyone on the ward. It was emotional as they have seen us safely through the past few weeks.

Simon left the hospital with a small pharmacy and information on everything we needed and a lunchbox type bag with all things stoma.

The drive back home seemed to go on forever, making sure Simon was warm enough, comfortable enough, did he want to stop, hungry, thirsty……. I know how to make a journey enjoyable and my endless questions soon made him fall asleep. We did find some entertainment however on the way home, whilst listening to BBC radio 2 all three of us were able to contribute to the music, during Jim Reeves song “He’ll have to go” the line “Put your sweet lips a little closer to your….” was finished with a “parp, parp, parp” from a certain stoma!

We were expecting our first night to be a relaxing endless sleep but this seems to elude us both. For Simon it was colic type pain as his re-plumbed digestive system beds in coupled with an an ability to get comfortable, and for me more concern that Simon wasn’t comfortable and so it was a vicious circle of insomnia.

One of the things you take for granted with being in hospital is the regularity and nutritional value of the meals, every meal arrived on time, and provided Simon with the nutrition he needed. We took for granted how breaking this cycle of regularity would affect Simon and with that ‘Little Simon’ (aka his stoma). The change in mealtimes was bought about by the travelling and a later evening meal this started a chain reaction which has today affected Little Simon, who is not wanting to play….

Dehydration is something we have to be very careful of, and whilst I can drink water with ease, water has now become the devil with Little Simon. If he drinks too much water Little Simon turns into a water feature and in part that has happened today…..

So today is all about the poo but not Pooh ….. and trying to get things right. Getting our heads around a high salt, high sugar diet is going to take some getting used to, it is all a bit alien, as is Simon only managing small portions of food, but like everything else we will conquer this.

One big positive about being home is getting Simon out for short walks, today it is freezing cold, it actually took him longer to get ready than the walk itself, the bracing Dartmoor air put a smile on his face today! And yes it is as cold as it looks.

Onwards and upwards Mr C