I think there’s a lot to update, however it will be slow going for me for a while. I wan write ok-ish, but I wasn’t really re-read what I an writing well, and I definitely can’t read properly, even close. I know that’s difficult for people to comprehend, but deal with it. I have enough to dead with without endless questions about why I can see but not read, and why I mix my letters up. I know you are only interested, but please try and think of things from my perspective.
Yesterday on the way back from Peter Mac in patient transport, there was another family going to Deer Park. They got talking to us. Thankfully it was a short trip for is to. The first question from husband was “So you’re at Peter Mac, it was on the news the other day they’ve found a cure for cancer through stem sell research”. My reply was along the lines of “unfortunately not, all cancers are different blah blah”, not much point trying to educate too much. Then came a bit of an interaction about what was “wrong” with each of us, me with incurable cancer and the lady with dialysis three times a week and all kinds of other diabetes related problems. Both were morbidly obese.
They were both the whiny types, asking if I was happy with the treatment I was receiving (for fee!!) clearly not happy with theirs from St Vincents, also for free, but lets not go there. I met another of them at chemo yesterday as well, some people just don’t realise how lucky we are in Australia, or choose to wallow in their own self pity.
I am getting somewhere with this story, I promise! The lady, who by now I was only half listening to, as I was sure she was going to say something that would make my eyes roll internally, then decided to tell me “what I’ve got is far worse than what you have because I am suffocating all the time”. She mentioned a couple of other tings that made what she has worse than what I have, but I wasn’t really listening. Yes that’s horrible what she has, really awful, but how is dying slowly an painfully of any disease worse than dying slowly and painfully of another? She then talked about euthanasia briefly and not being able to go on overseas holidays anymore. She asked me about my holidays, and I said I couldn’t go on them anymore either. They raised their eyebrows at that.
It’s an experience best overlooked. I have mostly only met amazing and inspiring people on my time in chemo and being ferries around in patient transport. The downers are an anomaly. People do keep telling me how positive I am, but I can’t see any other way of doing this. It’s not anything conscious for me to “be positive” and frankly it drives me mental when people tell me to do so.
I am currently being slowly weaned off one of the steroids I’ve been on for some time (way too long medically!). Its hard work physically and mentally, as I’m being put in a medical downer. It’s no fun, but it will pass and things will get better. It’s just a slow process, and I fell like I’m tired all of the time. For that reason I really need to look after myself, and that realistically means I have to slightly ignore others wishes, now answer every incoming phone call, and be generally a bit crap at getting back to people in general. The same goes for my family, who are bearing the brunt of communications. Its tiring for everyone.