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Archive for October, 2014

Oh Internet, how I love you. You have made it so easy for me to meet like minded people, make friends, discover a support group. I’ve also enjoyed an endless stream of cat photos, fails, and the quiet brilliance that is PostSecret. I’ve reconnected with friends and family, googled everything in existence, and have recently connected you to my Foxtel and Apple TV.

Let’s not get started on YouTube.

On the flipside, I feel like I’m letting this ruin my brain. I literally cannot focus long enough to read a chapter in an actual book, with pages and ink. I facebook while I’m working the horses, that’s if I get out there in the first place. By the time I’ve written this, I probably will have had five facebook conversations and checked my newsfeed countless times, lest I miss some self help article that I will never put into actual practice, or the daily musings of a boy I kissed on the last day of Yr 9, and never saw again.

The times when I’ve felt the most ‘whole’ have never been when I’ve been sitting in front of my laptop, various tabs open to social networking sites. They’ve been when I was 18 and ran every day even though I’d always hated it. When I was 15 and would ride exercise work on racehorses just trot trot trot for kilometres on end and they find their stride and you find yours and sometimes it starts to feel like magic. Dare I say it, one of the first times I smoked weed with an ex and we laid in his Dad’s recording room with carpet all up the walls and Fleetwood Mac on the record player and we felt every instrument.

Now I don’t even watch a fucking movie without my iPhone. I can’t follow a teen TV series’ storyline. It’s getting ridiculous. I’m nearly 30 and have wasted so many opportunities, spent so much time just killing boredom when I could have been learning or writing or being productive or I don’t know, having conversations and focusing on who I’m with or actually tasting what I’m absentmindedly cramming into my mouth.

I’m at the point where I’m actually going to start giving myself a schedule to tell me what I should actually be filling time with. This doesn’t fit in with my personality at all, but yeah. I’m sick of being so passive. I’m sick of saying I ‘don’t have time’ to finish my novel, ride my horse, paint my room, decorate my soul.

Can anyone relate?

Ashx

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So I’ve been trundling along, pretty well actually, with the odd ‘moment’ either way – deep sadness but then the most beautiful purely happy and content pieces of time too. I’ve been writing something, in little patches, and I generally have no confidence in anything I do, but this is good, I know it is.

I don’t even know who I’m writing to, if anyone reads here anymore. It’s been a long time. I love writing. But I’ve poured out so much pain here that for awhile I couldn’t even think about it, couldn’t come back. I’d try and feel that sucking feeling in my chest, so I just scribbled on bits of paper. A few times I used my finger and pretended to write the squirming feelings out on the wall, couch, car door, where ever I was. And you know what happened? I became present in my life, and proactive instead of reactive, always on the defence. I stopped giving a shit what my neighbours and the shop guy and the people who dropped me when I got sick and freaked out think of me, and I started focusing on what the people who love me think of me. And most of all, what I think of me.

Between homeschooling Bailey and leaving mainstream cancer treatment I copped so much criticism I simply had to stop caring. There was no other way.

The thing is, it worked. Bailey is well and happy – and kind of bratty right now, but so age appropriate and just boring normal that I could almost cry with gratitude after having to ask him for the ten billionth time to pick his crap up, use manners, be careful.

Cancer is complicated. The cynic in me feels like it’s just another industry, another way for people to make money. I baulk when I see pink ribbon products containing chemicals that have been linked to various cancers. It bothers me that ‘natural’ and ‘alternative’ remedies aren’t given the same funding and research as those owned by pharmacuetical companies. It didn’t inspire confidence, the reactions I got when I started asking questions. Questions like, where does the funding come from for this particular drug? When there are a few medications that are roughly as effective as each other, how do you decide which one to try first? Why is everything in your surgery sponsored by a drug company?

Look. I believe that most people are good. I think most Doctors want to help people. Of course they do. But I believe that the patients feelings should matter more. No one paid any attention when I questioned the range of symptoms I was having that weren’t in a any way consistent with my first diagnosis. No one has to take responsibility or be accountable for that. But when *I* actually want to do my own research, and be responsible for myself, it’s continuous phone calls, criticisms, borderline harassment and ‘duty of care’ talks.

My last lot of tests weren’t great. I’m upset. I know there’s going to be this ‘we told you so, the system is the way it is for a reason’ type attitudes. When in actual fact, I had been doing fantastically well, until it came to the point where financially I had to start choosing between my *alternative, hippy type medications and remedies* and you know, being able to eat and pay bills and take my child to his chosen sports classes and keep a roof over our heads. I sold my car, I made sacrifices, but how long can I do that for? Our ‘system’ is supposedly set up to protect people like me, who work hard for what they have and through no fault of their own end up in a rough patch. It’s why I paid fifty thousand dollars in tax in one year when I was just starting out and working hard to try to get ahead, so that if I should fall ill, our government would be able to cover my medical bills and give me enough to barely survive for any time I wouldn’t be able to work. As long as it’s the exact drug program you are prescribed that is. Too bad if it doesn’t actually work, and you want to live longer.

I mean, it’s like being punched in the chest, losing the ground beneath my feet. With every inch of my being I don’t want to end up in the mainstream treatment cycle of secondary infections and bruising and needle marks. Of hair loss and bleeding lips and 16 hour sleeps. Of course, nor do I want to sell the horses, my olllddd beat up but working car, or my house.

I don’t want my son to see me ill, ever again. I don’t want my friends and family to be upset. I don’t want to lose myself, all the pure clear ok-ness I developed coming out of so much pain and fear. I just, I can’t go back there.

So yeah. That’s where I’m at. If anyone reads this I’d love to know where you’re at too 🙂

Ash xx

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