Keepsake

 

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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Show Me How Big Your Brave Is

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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Packing

Last year when I moved, I was so rushed that I was still throwing shit into boxes, onto a tarp, and into the back of my horse float, while my tenants were moving their stuff in.  Kitchen utensils mixed well with clothes, bathroom things, and stationary.

Most of that stuff is still downstairs, still in boxes.

Obviously I had planned to have a big clean out and sort it all and move back into my house (or another house) with shit totally together, physical, emotional, spiritual and financial, but clearly it hasn’t worked out that way. Part of me wants to ditch everything and start again, the other part knows that’s stupid and wasteful and I’m sure there’s some things I’ll need when I get back to reality.

I need to do so many things, instead I just sit and look at the beach.

Not to mention fucking Christmas.

Craig has started being mildly painful again, I think he senses me moving on, becoming self-sufficient and making big decisions for myself and Bailey without his input and is like ‘oh fuck’. I know I shouldn’t engage with him. But a big part of me still wants that eventual happy ending. Especially for Bailey.

It is what it is and all that.

I have to go back for now, but that doesn’t have to be permanent. The plan is, stick it out for 12 months, then see what I can work out. I want to be near the ocean, and have some space. I want to work for myself (so I’m starting a new business) and I want to do everything I can for my health. And I still want horses. Stupidly. The worthwhile things are always hard.

I guess I just wanted to give you guys a little update, but this is good for ordering things in my head too.

In health news, I’m doing ok. I’ve suddenly started having migraines, which scared the absolute crap out of me, but I went for all the relevant scans and there’s nothing new. In the last few months my body has become increasingly reactive to food, which I’ve really been struggling with so I’m thinking that this is just another reaction. Right now I seem to have reactions to wheat, dairy, meat, soy, tablets (!), liquid supplements, summer/ tropical fruits, corn, and I’m sure there’s more. I can eat bananas and feel ok. And fish. Some types.

So I’ve given in and started on meal replacements. I don’t agree with it and I never wanted Bailey to see me doing stupid diets, but I can’t keep vomiting, having cramps, carrying excess weight while being low in absolutely everything that’s testable. So far, it’s a lot better. It’s expensive, tastes awful, but worth it.

The water is so blue today. I’m going to miss this so much. Is it stupid to grieve for places that will still be here? Maybe. This house is going, and it feels like the last link to the small amount of happy childhood I had before life started to implode.

When I close my eyes here, I’m four again, at the beach. I don’t know what cancer or divorce or alcohol or sexual abuse is. My mother has come down a couple of times, and I think she is trying to forge some kind of new relationship with me separate from the truce we’ve established since I had Bailey.

She’s still hyper-critical, but I’m beginning to see that’s more about her than about me.

And I think I’m a better parent than her, arrogant I know. So does she, I can tell when she watches me with Bailey, that hint of wistfulness at what she’s missed and can never get back. It’s true what people say, they grow so quickly, and you get one shot. One.

You can’t fix a childhood, that’s something that I’ve really truly learnt this year. But you can choose to forgive, be a cycle breaker, work with the good stuff. Bailey’s childhood isn’t perfect, not by a long shot, but he’s loved and wanted, and he knows that I didn’t choose to get sick and make things difficult. And that I would never choose to leave him. The thought wouldn’t even cross his mind.

So I’m stopping beating myself over the head for things out of my control, and starting to trust that he’ll be ok with me, regardless. He might even learn some important lessons.

Ash x

‘

 

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But the greatest of these is love

There’ve been times, especially this year, when I thought I might not make it through. The truth is, I haven’t always wanted to be in this world. That’s hard to acknowledge, but it is what it is. Losing myself like that scared me badly, but it was also the catalyst for crawling my way back, stumbling over every rough spot, finding that flicker of light.

It isn’t a graceful journey, but it’s beautiful.

I don’t have much left really, I’ve spent all my money – what was supposed to be a cheap break-year that I could recoup from turned out to be a massive financial drain. Appointments, specialists, independent testing, alternative therapies. I made my choices. I’m in ‘partial remission’ which was unexpected for my situation at this point, so I think I made a good judgement call. I’ll probably have to sell my car and get something cheaper, I leased out my good horse to minimise costs without ripping my heart out, Craig will have to wait to sign the house over because I can’t cover it.

I have my son, I have my sanity, I have my friends and family.

Faith, Hope and Love.

Life just seems like such a trip sometimes. I’m 28 and I haven’t done anything. I’m 28 and I’ve done so much. I’ve done everything backward to other people I know, and that’s fine. I had a baby after being told not to hold out too much hope for children. I was diagnosed with cancer six months later, two months after buying my first house. Now my son is 6, and it’s just us, as I pick myself up yet again, go back to school – chemo brain and all – and try and make a life for us.

It’s amazing how I always get another chance.

I’ll probably always regret the way some things have ended up. I’ve lost people I care about due to my own inability to relate to their normal while mine has been so left-centre. When I’m hurting and scared, and people with good intentions try and push me towards something I don’t have room for, I tend to react explosively. But I’m learning.  The most meaningful relationship I had bar the one with my son disintegrated quite spectacularly, and that still hurts intensely when I let it, but I’m also edging towards a sense of acceptance.

I know it’s taking a lot longer than what people say, but I’ve had a lot to contend with in the meantime.

Most amazing is that I actually like bits of myself now. I can be strong and brave, funny and kind, when I have to be. When I’m having a good patch and handling life, I’m nice to be around and people like me. I have the best group of friends who try to understand me, make me nutritious meals, tell me to get more sleep and who have drenched my son in love as he’s struggled with increased awareness that this family isn’t like his friends’, because his mother is sick on a regular basis and there isn’t a permanent person to pick up the slack.

He went through this horrible acting out phase – above and beyond the usual six year old boy thing, and I was so shattered I couldn’t even write about it, but now he is even more beautiful than he was before.

Life is nothing like I thought it would be, and I’m so blessed.

Ashx

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Ending up where I started

is how this feels.

It’s warm (yes, I’m discussing the weather after being a bitch about that). I just had a major breakthrough health-wise. I kind of want to write something, swim in the ocean, lie in the sun, eat whole foods.

Pretty much how I felt almost a year ago, rocking up here with my kid and fur-kids. Totally spent, stripping off those outside layers. I have until January to salvage what’s left of this year, and then I have to go ‘home’.  Well, back to what I’ll have to make a home, because it’s really the only place we have available to us.

I’m fucking terrified, when I stop and think about it. I didn’t really think I’d ever go back.

Maybe it will seem like this year never happened, and I can just kinda slip back into my job, studying online, coffee with other mums. Maybe I’m too different now, and I just don’t know it yet. I know I have like, three friends up there who have stuck by me. I have no idea about the rest.

God, I’m so glad I was here to fall apart. I can’t imagine what it would have been like up the hill. Totally unbearable I’d guess.

Maybe that is what I’m scared of – I go back, take on a mortgage, take responsibility for myself and Bailey and build us a life together, and something awful happens. I came here needing rest and strength and ended up in the hardest year of my life. I’m gritting my teeth writing this, and feeling so weak, but I. can’t. handle. much. more.

And I have some massive decisions to make.

So now that I’ve hashed all that out, I guess the question to ask myself is, ‘what should I do now?’

Try and build some strength. Make the most of this treatment break, nourish my body, allow myself to feel while I have time and space.

Walk everyday, write everyday, drink water, detox and declutter.

Accept what is and make the best of it.

xx

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My Kind of Scene

My brain has been so weird lately.

I’ve been spending a lot of time thinking about what I’d like to do next, and nothing is fitting. I kind of have to go ‘home’, up the hill, because Craig is willing to sign it over to me and I can only get a loan as a single parent with health issues for that particular property, as a way to have a solid home base for Bailey. And we have to be living there.

Trying to make a life plan that includes allowances for illness, but enough money for us to have a decent lifestyle, with me not able to work all the time…this is challenging stuff.

I fantasize about arts degrees or fostering children or writing or being a drug dealer or being well enough to do something physical outside. I get accepted into the perfect (fun, creative writing and journalism) degree without the relevant pre-requisites on the strength of a personal essay but then realise I don’t have the brain space to follow it through.

I think about what I’d do if I knew for sure I had 5 years, 10 years, 40 years.

And then I think, fuck it, it will sort itself out.

So I start thinking about other things. I walked through the supermarket the other day, on autopilot, and all of a sudden it felt like the most alien experience. I actually looked at people and wished I could connect with them. and a part of me wanted to interrupt their conversations about weather, money, their partners annoying habits. I want to ask them if they believe in God, when was the last time they cried, do they believe in love or think that it’s a chemical reaction, are they doing what they want with life.

I don’t know.

Like I said, weird brain. I don’t give a shit about what you’re having for dinner, how you wish these cold nights would ease up, which political party you support. I want to know something real.

*****

And, an update.

Everything is still ok here, I’ve been sick – not dramatic sick but just mediocre, feeling generally shitty and exhausted kind of sick. I’ve been wanting to sleep 16 hours a day – anyone who knows me would know my usual stance on sleep, I’ve always struggled to get six hours. I feel like my mind and body have finally said ‘enough’. And that’s not a bad thing.

I haven’t been here, I’ve had this headache just on one side for like…weeks…and screen time seems to make it worse. I should be dropping some medications this weekend so I’m hoping that eases it, because I really would like to get more into blogging, and aim for something like 3 posts a week :). While I’m having a good day I’m going to go and check out all of your blogs – I always miss you guys when I have a break.

The weather has warmed up, so we’ve been getting in some beach time 🙂

Crappy iPhone photos, but you get the idea.

Ash x

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Missing, one soulmate.

I’m kidding.

Mostly.

I’ve been feeling like I might kind of like meet someone, at some point.

I know I’ve said I ‘don’t agree’ with blended families (wow, bitter and hurt and scared much?) but, I dunno, it seems mean to force myself to go through life alone, just because it’s not the way I wanted it.

Kinda reeks of throwing toys out of the pram, right?

I’m a little lonely. I know now that I don’t need a partner, but I’d like one.

Someone funny with sparkly eyes and a nice smile, who is kind to my son without trying to parent him. Who can string a sentence together.

Up until a few months ago, I dated a lot. And I made a heap of new friends (yes, really) and rekindled old relationships. I fucked up a lot, also. I know I’m too picky, but I don’t see the point in getting serious with someone, when there’s a pretty clear deal-breaker.

Someone that never wants to move out of Perth. Someone who gets blind drunk every night and doesn’t see a problem. Someone who has a child the same age, and is at the other end of the parenting spectrum.

And there’s the whole me feeling totally unlovable thing, because really, would you date a single mum with cancer? So when a guy is nice to me, or says he’s interested, I never quite buy it. And I have practically run screaming from a couple of genuinely nice people – but I’m trying not to be so insane.

With guys my age, they’re generally at the ‘get smashed all the time’ or ‘wanting to settle down, get married and have kids’ stage, and I haven’t found a lot that are in between that. Not that I’m only willing to date guys my age, but I generally see guys I’m friends with from school, or used to work with, or whatever and they tend to be in that range.

What I’d really like, is to just meet someone, and have one of those instant attraction things. I probably wouldn’t admit this anywhere else, but I’m a total romantic, and I love all that love at first sight, soulmates, eyes catching across a room stuff. I’ve never ‘looked’ for a relationship before, they’ve always just developed, so I feel kinda lost. I don’t feel good about dating sites – I’m kinda organically minded in lots of ways, I guess. Like a ‘if it’s meant to be, I wouldn’t have to make any effort’ mindset. Not quite, but close enough.

I guess that’s one of the reasons things not working out with Craig shattered me so much, it felt like my belief system was totally shaken. Because it should have worked out, and it didn’t.

So – where does one meet a nice guy? How did you and your significant other meet?

Ash x

ps – goes without saying that my bloods are looking really really excellent or I wouldn’t be thinking about dragging anyone else into all this. Just don’t wanna jinx it til I get full results xx

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Is it Done

Alternate title: Life is crazy, when you are.

Sometimes, I just don’t know where to start. When Bailey was 4 months old and we brought our first house just before I was diagnosed with cancer? The first memory I have of my Dad being in hospital, his Doctor sneaking me into the ICU and being so frightened of the screens, the beeping, finally seeing what his eyes look like behind glasses after hydraulic acid pouring onto his face? The first time I was assaulted as a child? As an adult? My Mum ringing to say she’d found a house overseas, and would see us on holidays? When I witnessed a suicide? When my husband left us? When I left our house? When I (finally but inevitably) developed delayed C-PTSD?

My mind is so fucked up, that if nothing horrible and life altering and traumatic happens for awhile, I get so anxious, and feel sick and heavier in my chest every day, until something does spazz me out.

And then I deal, and recover. And feel normal – whatever that is, for a little while.

I’d really like the normal patches to last longer.

I’d like to not feel as if I need crisis, instability.

I don’t think I come across ‘crazy’ to most people, I’m lucky to make friends very easily. I probably come across happy, or ‘a bit of a hippy, really centred’ (from my newest friend) even while I’m counting down the hours until I can get out of my head with a drink, or write here, or crawl out my soul and into someone else’s.

‘I like the frantic. I like you’ said another friend ‘but you have to like it too.’

I don’t really, but I’m bored without it.

I remember when I was first really sick, some distant family member gave me a copy of ‘You Can Heal Your Life’. I was really offended, because (unless I’m missing something, I didn’t read it cover to cover) it pretty much insinuates that you kind of choose your own illnesses – I think cancer was hanging onto resentment or some such thing. I was actually at a really well, happy point in my life leading up to being diagnosed.

So I don’t buy that, to that extreme anyway, but I do believe that stress can manifest itself in physical illness. Of course it can.

So I end up in this thought loop, is my life crazy/intense/dramatic/whatever because I am, or is the other way around?

Things have been quiet lately, my neighbour has stopped calling me a whore over the fence, treatment is ok with no major ups and downs, things are still static with Craig, I’m not dating, I’m making a conscious effort to not bring drama into my life…

I’m. so. bored.

And I feel boring socially, because I don’t have a funny story about the latest date I went on, I haven’t been in any life threatening situations, no-ones seriously upset me, I’m not getting drunk…

I think I got so used to being extreme, I don’t know how to not be.

How does everyone else do this ‘normal’ thing?

x

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where is my mind?

I had an awesome post written in my head last night, and when I woke up, -poof- , gone.  I’ve been struggling cognitively a little this week, losing shoes, keys, what I was about to say. Something distressing happened and I’m still ok. That’s the first thing I just plucked out of the space above my head. The kind of event that would usually make me cut and run, because it’s what I do, but I’m not and I won’t.

I haven’t been around much lately, I’m two days into the week long treatment I’ve been waiting for, that silver bullet, and it’s working. I can feel it. I know it the same way I know the sun will set tonight, what cool sand feels like between my toes.

Even though cancer cells are being zapped into oblivion as I write this, I would appreciate anyone keeping their fingers crossed for me 🙂

I have just enough hair to pull into a ponytail, and of course that’s when it starts coming out, my hands coated with dark strands in the shower, and instead of drinking half a bottle of vodka, losing my shit and shaving it completely I just go with it, trust the process, maybe I’ll lose it all maybe I won’t, but it’s actually not the most important problem I have, even if I feel like I’ve been punched in the stomach. I wish someone had told me that you can let yourself feel pain and loss, and that’s all you have to do, just feel it. Not drink through it, run from it, fight it.

Just feel it.

And it’s ok.

I got to thinking about why I decided to come here this year, and even though I had some vague ideals about homeschool and some mental space and recovery, it was pretty much an instinctive pull. The thing is, this year has obviously been absolutely nothing like I expected but thank God I’m here. If all this had happened at home, it would have been 200% harder to cope with. I still want to go back – no, I’ll be honest, I need to go back, to sort shit out one way or another. Either way, I was meant to be here this year, and I’m betting that next year I’ll either settle in up the hill or decide on another long term prospect. Bottom line, I usually end up where I’m supposed to be.

I wish someone had told me I could trust myself.

I’m learning.

Another thing I was thinking about (yeah, I tend to think really intensely while poisons are seeping into my bloodstream, and my iphone is taken away) was that ‘Bucket List’ I wrote, and how I’ve done exactly one thing from it.

It was the fun item, and it was excellent and I did do it more than once <grin>.

Anyway, I started a mental re-write, and if I needed anymore proof that I’ve changed, that was it.  I want to write letters to people, just in case. I want to explore a healthy, simple lifestyle. I want to nurture myself and Bailey.

I want to detox my life, cull my possessions, focus on relationships and experiences more.

I’d still like to fall in love with someone else, it hasn’t happened yet – but I have fallen out of love, and I think that’s step one.

Sad as it may be, it’s necessary.

So, that’s where I’m at.

How are you guys?

x

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You know how when you just know?

That you’ll never be the same again.

Sure. If I keep on top of myself and I’m careful and I have a hell of a lot of luck I *might* be able to put our lives back together. For awhile. Some bits. The important ones I’m hoping.

What’s important has changed. And that’s not all together a bad thing.

I’ve lost most of my friends, which I only realised today when I really sat down and thought about it. Some of the few that remain are surprises, as are some of the ones who left.

I haven’t written much about it, but there are cracks in my relationship with Bailey now. At the start of the year I would have said we were bulletproof.

He’s over me being sick, and everything that comes with it, and I don’t blame him one little bit. I’m tired, on edge. Everytime I start to get on top of things, something happens. I love him more than life, but fuck this is hard to deal with. I’m failing him, doing heaps of things I thought I’d never do, just to cope.

He asks why it was his mummy who had to get sick, and I have no way to answer that.

He lucked out with me, really.

*****

I’m having a flat day, obviously, but overall I’m still doing ok :). I’m not getting a heap of sleep, because I was honest enough with my Doctors to admit that I shouldn’t really be trusted with pills at this point, and it was one of the harder things I’ve had to verbalise lately. Of course, I want them badly and I’m kicking myself a little now, but I know myself, and unfortunately I think I’m always going to struggle a bit with things that can numb me or take me away.

Alcohol, sugar, pills, cigarettes, sex, it’s all part of the same problem for me, and I’m committed to sorting that shit out. I’m not an alcoholic, a sex-addict, I’m a chronic cope-r, and I just do anything in order to keep going and then to switch my brain and feelings off at the end of the day.

I think I’ll get to the point where I don’t need to, because I’m starting to notice the things I fucking love about my life, and building on them.

*****

So Craig called me other day. He didn’t have Bailey the previous weekend so other than me texting him to say Bailey was sick, we hadn’t had any contact, and for a couple of weeks before that, it was very quick drop offs, no dinner, no chat. Basically because Fuck him.

It was awkward. Up until now, unless it’s been in the direct aftermath of a massive fight we’ve still been able to talk pretty easily. I mean, I could talk to practically anyone though.

‘Hey, I was just wondering how you were? What’s happening?’

‘Um, nothing much, you? Did you want to speak to Bman?’

‘No…I just wanted to know how you are? How’s treatment?’

‘Yep. It’s fine thanks. How’s work?’

‘Yeah…ok…’

-awkward silence-

‘I miss you’

-disbelieving laughter, massive smile-

‘I don’t really care’

You know those moments that make life worth living? Pretty sure that was one of them.

xx

 

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