Today was a very annoying day.
It started nicely with an unexpected text from my little sis Gail saying she would come to the hospital with me today and keep me company. That was a nice treat.
We got there in plenty of time to be seen in the Rheumatology Clinic at 11.30am. The receptionist told me that sadly the clinic had been cancelled and my appointment was now next week. He was sorry that no one had told me. It’s soooo frustrating. Mornings are not easy for me because of all the medication and because I feel most ropey. There was no point shooting the messenger so I just had to accept that I’d had a wasted journey.
As I thought I had an appointment I had left some meds in pharmacy to pick up, so I did that. I then went to haematology to have my 2 dressings changed. They were not happy about the oozing still coming from the PEG. The HOP doctor wanted another swab. He also wanted to refer to someone more senior. After another hour I was fed up with waiting and said they could ring me if they needed anything. Sometimes I feel like they forget that I might just have a life outside of all these hospital appointments.
I managed to get out in enough time to pick up my gorgeous niece and partner and with my little sis we all went off to see A Star is Born. It was great to do something ordinary and not medical in any way. It’s a beautifully poignant love story. I believe love conquers all, even cancer, GvHD, hospital appointments and long term
disabilities. I just need to hang in there.
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