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Posts Tagged ‘cancer’

When I crash, it’s like this leaching hole of nothingness, and then frantic manic activity while I try to claw my way out. It’s cigarettes and beer and sedatives and sex. It’s sneaky and insidious and before I know it, I don’t want to get out of bed, the horses’ shoes are falling off and I don’t know what we’re going to have for dinner again. So much of this is internal, and well-hidden, but it’s seeping out, and people are actually noticing. I can’t hide behind ‘treatment’, or ‘just tired’ anymore, and I don’t want to be like this. No-one believes I’m mentally ill, just traumatised, but when does one melt into the other? Where is this blurred line?

Recovery is yoga, vegetarianism and writing. It’s light and warmth, friends and work. Quiet productivity. I just, I can’t keep this cycle going. I can’t get out of it either. It hurts. I got through cancer and separation and abuse and judgement, but this is fucking my life up. It doesn’t feel fair. Like I’ve said before, there’s no balance, there’s no ‘go through hell now and then things will level out’ trade-off.

I know I could do well at life, on my terms, if I could get out of this. When I’m well, I’m dynamic, I get shit done, I’m bright. When I’m not ok, I systematically destroy that, like knocking down sandcastles at the beach. I fought SO HARD for what we have. I took on someone I love when I wanted to just give in, and say ‘you know what? Have the house. Fucking burn it down’. I fought myself and I fought him. I sold things and took out loans and I neglected myself so my son wouldn’t have to see any more pain.

On the surface, it was worth it.

Dig a little deeper, maybe not.

I love this. When I get what I want, I never want it again.

Ash x

ps – if you like me – #cometothepartycourtneylove I have a significant birthday coming up and I can live in hope ūüėČ

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Last night, I had the strangest dream (I sailed away to China, on a little rowboat to find ya). No, I dreamt I was dead, really dead, and I could see everything and know what happened, but then there was God, and I realised I’ve been wrong all these years, and oh fuck there is a God, and what happens now?

Even asleep, I knew I wouldn’t have done much differently anyway. Actually, a god-like figure in my life probably would have just given me someone else to fight with, to pull back from, to blame for my own shortcomings.

Anyway, I could also see everyone I love, and some I don’t, and what was going to happen in each persons life and how inevitable it all is. It was devastating watching people throw themselves on fires of drugs and dysfunction and burning nothingness, having no idea.

Hmm.

So, this morning, I got up, went to work. Didn’t feel like doing too much, so came home and felt shitty. Last week I blitzed the place, washed the horses, worked everyone, premade feeds, scrubbed waters. I have a feral pony here, supposed to be in work, I’m probably doing a quarter of what I should be.

This is recovery. This is coping.

Turns out it’s not all physical. My brain throws out the weirdest shit some days and I get these thoughts that go around and round, oh God, is there a way I can be made to do mainstream treatment, what if my car blows up, I have no money, blah blah blah. I got so used to living with anxiety for actual reasons that now my brain looks for them. Things are actually good! And getting better, and I’m so grateful.

Ash xx

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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 ūüôā

Ash xx

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‘Who knows, and does it matter?’ I scratched a pattern on the sheet. ‘I don’t think I need to define it. I’ve been there. Straight. I’m straight. But then I’m not.’

She yawned, luxuriously, not bothering to cover herself as she stretched. ‘Maybe it doesn’t matter. I just think that I deserve to know. Is this real?’

‘It’s as real as anything else.’

*******

All of my relationships have been with men. Nice, not so nice, tall, blonde, funny, smart, but all of them men. Writers and labourers and dealers and doctors. So would you assume I’m ‘straight’? Does it matter?

All of that, relationships and rules and limits, seems so far away now, almost alien. 

It took me so long to drop the labels. I wish they didn’t exist. Sexuality, to me, is gorgeous and intrinsic and can be so, I don’t know, fluid? It’s so hard to put what I’m trying to say into writing. I wish no-one had to ‘come out’, and we would just love who we love and that’s it. Isn’t it odd to have all these expectations and boxes and contracts. I understand the level of relief some people must feel when their sexuality has a name and is accepted. I’ve just always felt sort of…straight-jacketed, I guess… by labels, but it seems like society is so uncomfortable and overly invested in people not having one, and I’m insecure enough to let that bother me still.

Some experiences just are what they are, whether it’s a lasting enduring love, a passing attraction, or one intense night with someone. I don’t want to over-think and label everything. It truly doesn’t matter, and life is swirly and confusing and connections with people are special.¬†

I still can’t touch what I’m saying. I’ve slept with people I’ve loved and disliked and felt ambivalence towards. I change. It changes. Needs and wants change. Can your sexuality change? I don’t know. Do people have a true base sexuality that fits into one of five (? that I can think of) categories and are the layers on top a nature vs nurture type deal? Why does it matter? People do care who you sleep with. No one ‘comes out’ as straight.¬†

Freedom in all ways can be so intoxicating, and sometimes it seems like there’s no rules left.¬†

So beautiful.

x

 

 

 

 

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I’m struggling, badly.

I hate writing these posts, but I hate not writing them more. I’m doing nothing with my life, I feel genuinely incapable of letting go of objects, people, and situations that I know are weighing me down. I’m fairly sure I’ve become symptomatic, some days.

I still have good days, a few in a row, and it’s them that keep me going and striving towards some kind of life. Ironically, my cancer count has continued to fall after stopping mainstream medication and there’s something that makes me think I won’t have cancer forever, that I will reach full remission. I can’t describe what that ‘something’ is but it just feels like something I know, like the sun will set tonight, a deep faith. I’m not religious, but if I was, I would¬†think¬†that God¬†is looking after me in this way, and that everything is going to be ok.

Being in the middle still sucks though. Some days I even consider sending Bailey to school, just to give myself a break, but when my brain fog clears I know we’d both be worse off. I’ve grown more and more disenchanted with our education system, and more distrustful of government systems in general – I think having so much go wrong medically, learning about treatments available elsewhere that are illegal here, seeing a close friend being treated incredibly poorly by the Education Department, having my privacy severely compromised more than once has all taken its toll. Being screwed financially over and over doesn’t help either.

It’s alienating, feeling at odds with society in general, but also strangely freeing. Not my circus, not my monkeys –¬†and all that.

I try not to write about Craig much anymore, but let’s just say he’s a letdown as a father and a human being. On the same day he told me that Bailey hasn’t been doing swimming lessons because of ‘too many bills’, he bragged about his new motorbike. It was Bailey’s birthday a couple of weekends ago and he was so slack. I have protected Bailey’s feelings more and more but unfortunately I can’t keep lying for and making excuses for him.

It’s a horrible lesson to learn that your parents aren’t who you want them to be, but unfortunately I think Bailey will have to start seeing Craig for how he is now, and that’s going to hurt both of us.

We’ll be ok though, we always are.

Ash x

 

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Sometimes, when I’m overwhelmed, I get in the shower, turn the water as hot as I can stand and sit at the bottom with my hands over my ears.¬† It feels like¬†I’m in another world, totally removed.

Lately it’s been a daily¬†occurrence, sitting, counting to ten, letting tears escape, rinse and repeat.

I’m starting to get used to the idea that I might not reach this ‘acceptance point’ and feel stable from then on, that it’s going to be up and down, good and not so good days mixed in with cancer counts and banana pancakes, reading eggs and nosebleeds, horses and long drives and friendship and bullshit.

This hurts, you know? It sounds so juvenile but at a base level, cancer has hurt my feelings. It’s not fair. I’m not the type of person who gets sick young. I¬†sleep with men I shouldn’t,¬†get addicted to television series, love avocado and can catch the trickiest horses.¬†¬†Bailey’s not the type of kid who has a sick single Mum. He’s homeschooled, wants to be a ninja,¬†loses his brain on sugar and likes Adventure Time.¬†I have no idea what these ‘types’ are, I just know we’re not it.

It’s ok.¬†I’m as¬†ok as I can be. There’s no point being otherwise. Last year when I realised I’d been misdiagnosed, mistreated, could have been cured I fell into a hole over it. When I had to write an ‘impact statement’ I felt like I would explode before I got it down on paper. How do you add up hours driving to specialists, whole weekends away from my infant son after radiation, relationship breakdowns, seeing my father cry, the¬†loss of a lifestyle I worked hard for? How could I even halfway articulate how it affects me to know that Bailey didn’t have to know anything about this? That if I’d been diagnosed correctly I could have been in full remission before his first birthday?

These things happen, and no-one is to blame, and that’s the truth. I’ll admit to feeling some closure after seeing¬†my first Doctor, who has no bedside manner, didn’t listen to my concerns, and downplayed independent testing I had done, avoid eye contact until I actually¬†said ‘Fuck You’.

He apologised and it sounded sincere. And I know he would have been asked not to.

*****

So now, I just get to be brave. I’m choosing less treatment in favour of a life where I can play ponies and have my son at home directing his own learning, where we can grow things and take day trips. Where there’s room for coffee, hugs, sex, novels, stargazing. Where I have to be brave enough to deal with the possibility that this won’t pay off, that I may look back and wish I’d done more mainstream treatment. Sometimes,¬†when you have a gut feeling, you have to be brave enough to go with it.

Ash x

 

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