Is there life outside of hospital appointments?

So another week and another lot of appointments. At present I have 4 in the diary. That may change. 

I’ve finished the antibiotics but my guts have not calmed down. It could be the GvHD is playing up. It could be an infection, or it could be the antibiotics are still causing problems. 

More annoyingly my PEG is still oozing pus and if I press around the area it makes more push drain. I don’t smell too good either. Yuck! Sorry if that’s too much info. 

Last week was busy but productive. I had a good #MDSWorldAwarenessDay. Myself and Claudia Richards and Ally represented MDS UK Patient Support Group and between us spoke to 11 different radio stations. After that I was whisked off to have a chat with a Pharma company who want to get patients more involved in how they develop and grow. I think medics, patients and Pharma companies should all work together as that would always give the best outcome for the patient. Gone are the days where the doctor is God and patients are just passive recipients with no power. Let’s hope something comes of it. 

I’ve been feeling more tired the last couple of weeks and have fallen asleep on the sofa a few times. I’m also pale and breathless. I really hope this isn’t the start of another dip. One of the hardest things about living like this is that it’s similar to how Damocles must’ve felt when he went every where with a sword perched over his head, never knowing when it would drop and strike it’s fateful blow. 

I don’t want to have to be over cautious. I wish I didn’t need to see so many drs. I know I’m going to need to contact my lovely CNS and say about the pus still leaking from my PEG. I guess she will say I need to come in and be seen. I’d really like it not to be the case. I know they are only doing their job. I just get so fed up with the intrusion into my life. 

I’ve got lots I want to do at home. I have loads of sorting out that is calling me. I also have a desire to spend a couple of days in bed watching crap TV. I wonder if I manage to do anything in between the 4 hospital appointments. Oh well let’s see what the week brings. As I always tell people you can’t start a new life but each day is a new day.