Revenge of the PEG

Well it’s been an interesting 24hrs. Needed lots of morphine last night and finally settled around 5am. The pain is a dull roar now and only excruciating when I catch the tube.

This morning I was told the bad news that they wanted to keep me until Thursday. As you can imagine I was not best pleased. The reason is because they couldn’t get someone to come and train me on care of the PEG till thurs morning. The dietician was lovely and very apologetic. She told me that it’s standard practice on haematology for at least a 48hr admission post PEG in case there are any complications. She also said it’s quite invasive and very painful. Surprisingly she said it causes more pain in smaller people.

The next thing a nurse came and told me I could go home after all and that Danika had arranged for someone to come to my house at 9am tomorrow. Despite the early start, this pleased me. The next thing to happen was that Danika came back and said she’d found a nurse to give me some training who would come to me at 4pm today. I’m still waiting but hoping that she shows up soon and I can be in a place of much more comfort. The staff here are lovely but there’s no place like home.

When I was taken into theatre yesterday, I had two lovely anaesthetists. The consultant who saw me last time and another registrar. They tried to cannulate me twice. They are both really experienced women but as they didn’t succeed. This meant they had to use my Hickman Line for the anaesthetic. They don’t like doing it because of the risk of infection and also the speed of uptake of the drugs. I didn’t know anything about it. I didn’t get that nice drifting feeling or anything. One minute I was awake and then nothing till I came round.

Have just had training from a lovely endoscopy nurse. I’ve been told loudly and clearly I have a surgical wound and it is gonna hurt. She loosened the plate slightly as the swelling was making it too tight as you can see.

I’m not allowed to get the wound wet for 2 weeks. After that I can bathe and shower as normal apart from keeping my Hickman out of the water. What they have done is put in the PEG which sits inside my stomach and then inside the PEG tube they have put a Jejunum tube extension which means the feed goes directly into my small bowel. This should mean less nausea and vomiting. Fingers crossed. I also have to have it for at least 3 months but maybe 2 years. Heavens above, I hope not.

So yet another experience to add to my rich array of travelling with cancer and it’s complications. I wonder what’s next on the horizon?