It was great to have some space away from the hospital. I’m pleased to say that the awful pain at my PEG has subsided. I have to have an ultrasound on Thurs morning to check the collection has gone. Collection is the medical term for a build up of pus. Nice eh? It’s stings a bit but is no where near as bad as it was when I first came away. The antibiotics have obviously worked. The sleepless nights were worth it!
Sadly my GvHD flare has not settled. I’m still having horrible gut issues. My muscles and joints are awful. My skin is very frail and itchy. My mouth is full of sores. My eyes are really dry and my throat is sore. Apart from that I’m fine. Lol. 😃
I’ve had my two days of ECP at Guys Cancer Centre since being back. I’m seen in Kings next Tues and they will decide what the next steps are. Meantime I will continue to grit my teeth and get through this each day at a time.
I have a busy week this week. Mon and Tues has been much needed ECP. Weds I need to write up a funeral and design an order of service. I enjoy doing this because I think it’s so important to give people a personal send off amd do the best job you can. It’s the last thing you can do for someone and it should be done well. Thurs I have my scan and then have to get to High Wycombe for a meeting about medical education and what’s important from a patient perspective. On Fri I have the privilege of taking Tracey’s funeral and enabling her grieving family to carry out their last act of love for the woman that gave them so much.
Even when you are as sick as me, even when you have all these hospital appointments, it’s still possible to give to others and do what you can to make the world a slightly better place. That’s my encouragement to each of you. Do what you can, while you can. Like Gandhi said “you must be the change you want to see in the world” Have a good week and share the love and light wherever you can. Xx
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