Headfuck

This Shit Sucks

by Veronica on June 16, 2009

in Cancer, Headfuck

Mum had to have Nan admitted to hospital on Saturday. [read post here]

Amy says ‘My Nanny is very sick’.

Nathan says ‘But your nan is my friend!’

And I say ‘This shit sucks’.

I don’t think she’s getting out of hospital. [And if she does happen to get out of hospital and gets better and reads this and growls at me and says ‘ner ner’ then it will be so worth it that I won’t care that she is growling at me.]

Today, for the third time, we will make the trek into The Hospital with two children in tow. We will walk Amy up and down the halls and let her play hide and seek in the Chapel. We will sit in the room and talk to Nan while I wonder how many more times we will do this. She is very very vague now and confused. We’re hoping that the medication they gave her to reduce the calcium levels in her blood will reduce the confusion by Friday.

I wonder, did we take too much for granted? Did we take her strength and her verve and her spice for life for granted? Even though we knew this cancer was terminal, did we not realise that once the true decline started, then everything was going to go to hell? I look at my Nan and don’t know if I can do this.

I’ve heard people say ‘a terminal illness gives you time to prepare, time to deal with it’. Hell, I’ve even said it myself. Unfortunately, there is nothing you can do to prepare for the kick in the guts feeling you get when you see your loved one tucked up into a bed, looking progressively smaller by the day.

So I say it again. This shit sucks.

****

I was 14 when I moved out of home. I left Mum and Dad’s house and headed down the hill to live with Nan. I let myself in after school most days (the days when I didn’t have soccer, or go to my boyfriends house), mucked around a bit with music and school work and then started cooking dinner for when Nan got home from work. Her spare room became my bedroom, with my stuff in it and my stuff on the walls. (No, not posters, it was mostly all my artwork from school)

Moving out was great. It gave me and my parents the space we needed from each other to have a good relationship. My childhood was far from horrible, but sometimes, things were very very strained. There was a lot of stress. We needed space from each other. I love my parents, but living with them was hard. We need space from each other in order to cope.

When I tell people ‘My grandmother is sick; dying even’ I don’t think they realise just how close we are. I love my mother, but Nan? She is like a second mother to me. Who on earth am I going to complain to when my mother is giving me the shits? My Nan is my go-to person when I am stressed. Unlike Mum, she is not likely to cackle at me (why YES, my mother does cackle. In a good way you understand) when Amy is driving me up the wall.

We are close and I’m not sure how I am going to cope with this. I’m as close to Nan as I am to Mum and I don’t know how to get through this.

So, this is not just my Nan tucked up in a hospital bed. This is my friend.

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Fuck You Cancer

by Veronica on June 10, 2009

in Cancer, Headfuck, Soapbox

I’ve been reading a few posts around the blogosphere that have been sponsored by the American Cancer Society, which is great. Raising awareness is a fantastic thing. Everyone needs to know about cancer. In fact, everybody probably knows someone who has had cancer, fought it and won.

I am however, taking objection to the request that the bloggers participating in this awareness campaign have been asked to keep it positive. It appears the ACS want people to hear the positive side of things, to show that people can beat it and that while it is a headfuck, it doesn’t always mean a life sentence.

Yada yada.

However.

Not everyone beats cancer. Sure we can all tell the happy side of things, talk about the cakes and the parties afterwards when you hear the magical words, ‘you’re in remission.’   In fact, I’ve been to a few of those parties, I’ve been thrilled to bits for people and breathed a sigh of relief. My best friend in primary school beat leukaemia when she was 10. My great-grandmother beat breast cancer in her 70’s. Nan beat thyroid cancer 10 years ago. Nathan’s father spent the first year of Amy’s life beating cancer. We’ve all got the positive feel good stories to tell. We can all say ‘this doesn’t have to be a death sentence, this doesn’t have to be IT.’ We push the bad memories so far down so that we can move on and forget how that chemo ward smelled, or how sick our loved ones truly looked in the moment.

But for some people, it is it. This is it. This is how they will spend their last few months, with cancer hanging over their heads and invading their bodies. A reminder with every twinge, that this time, you and your family fell on the wrong side of the odds and to be honest, it feels a little disrespectful of the ACS to ask people to try and be only positive when writing about their experiences with cancer. I wasn’t going to link to the blogger who posted about this. I didn’t want my anger to dilute her post. I am so pleased that they got their happy ending and their remission parties. Life was forever changed, but it was not halted. Not that time. I wouldn’t wish what we’re going through on anyone else.

Sometimes treatment doesn’t work. Sometimes there is no hope for forever, just hope for more time. We will be dealing with the after effects of cancer for a very long time. It’s not easy. I don’t think about tomorrow, or next month or how I’m going to cope. I don’t have a plan for how I’m going to hold it all together, but I know that I will because I have to.  We’re the ones left behind. The ones no one wants to talk about because our story doesn’t fit into the message of hope they want to send.

At the end of this story, there will be no happy ending. There will be no cake, no parties, no congratulations. Our story will fade quietly into into the distance, leaving just us behind to pick up the pieces.

I have not had cancer. That does not mean I will not be a cancer survivor.

***

For anyone just joining us now, my Nan was diagnosed with Lung Cancer (NSCLC) almost 12 months ago. She’s never smoked a day in her life. Surgery wasn’t an option and radiation and chemotherapy, while buying us more time, didn’t cause the cancer to shrink or stop growing like we’d hoped it would. She’s having palliative radiation at the moment, in order to shrink some bone mets in her spine and lessen her pain.

I was going to close comments, but I think I’ll leave them open. Remember that Nan reads and she is more than happy to growl at you in the comments if you’re too morbid about her. She’s not gone yet. In fact, I expect a phone call tonight growling at me for writing this.

I want to know, how has cancer touched your family? Do you have a positive story to tell, or did everything go to hell in a hand basket. I want to hear, the good, the bad and the ugly. We’ve all got stories.

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Curious

by Veronica on May 31, 2009

in Headfuck

So I’m curious, does anyone else feel like living with a toddler is like living with a tiny little person suffering from Bi-Polar?

Cos really, I don’t have a yardstick to measure how normal this is over here.

Does anyone else’s toddler go from laughing maniacally to screaming uncontrollably? Within 2 seconds? Over NOTHING?

Anyone else have a toddler who will hurt themselves in order to have a proper tantrum? Amy bites herself in order to then get ‘kisses better’. She only does it when she’s been naughty and gotten growled at though. She will also punch the floor, hit herself etc. I’m just wondering how normal that is? I know it’s attention seeking behaviour.

Please?

Really, she is not an easy child to parent. I feel like I’m hanging on by the skin of my teeth here, just dragging myself through the day, trying to make it to bedtime without too many tears, injuries, accidents, or tantrums.

I know damn well she gets so tired and needs to nap, but she will not nap. At all. Ever. So please, don’t suggest a nap. I know it would help, I know it would work, but it isn’t happening.

I’m just, really tired.

Amy

Isaac Sleeping.

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Suffocating

by Veronica on May 28, 2009

in Headfuck

Some days, I feel like I’m suffocating under the needs of these children of mine. There is always someone who needs feeding, dressing, or changing.

Add breastfeeding into that mix and I’m getting a little ‘touched out’.

I love breastfeeding. The way Isaac’s head nestles into my breast, the huge smile when I get my boobs out in order to feed him, the way he snuffles and gulps until he’s satisfied. But in this, the last few weeks before Isaac will be getting a meal consisting of all solids, where milk will become only part of his diet (and don’t get me wrong, I’m not intending to wean, I fed Amy until she was 19 months), this last little bit? It’s hard.

It’s really fucking hard.

I love them and I love this. I love it, truly I do.

But sometimes, you’ve got to be okay with admitting that you don’t always like the dirty bits of motherhood. The 3am vomiting. The toddler poo that has ended up at the small of her back when she really should be crapping on the toilet. The tears and the snot and the anguish of being asked to pick up your toys, leave the cat alone, don’t sit on your brother, Amy look where you are going, are you listening to me? Well are you?

The bits I love, far outweigh the bits I don’t like. That doesn’t however, make the horrible bits any easier to like.

***

Amy is still ‘STILL HUNGRY!!!’ (with capitals and exclaimation marks, because that is how you talk when you are TWO!) but we’ve implemented a plan of chopped vegies and fruit in the fridge in iced water (thankyou DrMim) and all snacks will be grabbed from there. Other things I think are acceptable are cheese and crackers. If she won’t eat them, she’s not truly hungry and can wait for mealtimes.

***

Potty training. Ugh. I don’t even want to talk about that yet. Let’s just say that nothing has worked and move along. Nothing to see here…

***

My good wrist is clicky today. Fuck. My bad wrist? Well we just won’t talk about that either. Or any of my other joints.

***

I applied for a blogging job a few days ago. I haven’t heard anything yet, but to be honest, the extra money would be really handy. Not to mention, it’s blogging on a topic I am really passionate about. (No, it’s not parenting. Blogging jobs for parenting blogs are as rare as hens teeth!) In the interim, well, in the interim, we’ll just putter along doing what we’re doing. We can afford to eat and pay bills and really, that’s all we need.

***

I have come to accept that toddlers don’t listen and babies never do what you want them to do when you want them to do it. I don’t like it, but I accept it.

***

These biscuits. Awesome. The dough is so good I wasn’t sure any was going to make it to the oven. SO GOOD.

chocolate wafer biscuits

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Seven Years

by Veronica on April 22, 2009

in Ehlers Danlos Syndrome, Headfuck

Seven years ago this February I got sick.

Seven years of doctors visits.

Of being told:

‘It’s all in her head.’

‘She’s pulling the wool over your eyes, she just doesn’t want to go to school.’

‘Her tests are clear, how is her relationship with her father?’

‘She’s anorexic.’

‘There’s nothing. Go home.’

‘Go home.’

‘Can’t help.’

‘Nothing there.’

Seven years.

Seven years of nausea.

Of joint pain.

Of dislocations.

Of exhaustion and muscle fatigue.

Of trying to tell doctors that other family members of mine have the same symptoms.

Of being given a diagnosis of Chronic Fatigue Syndrome in order to call it something, just to make us go away.

Seven fucking years.

Lots of doctors. Lots of tests.

And nothing.

Today though, today I walked into a doctors office and walked out with a diagnosis.

I was told, ‘It’s a straight forward case. It’s a clear diagnosis. I am 100% certain that this is what you have.’

I was diagnosed with Ehlers Danlos Syndrome today.

And while it’s not a fantastic syndrome to have (dislocations, joint pain, no cure, etc etc), ANYTHING is better than being called a liar. Anything is better than being told you are faking it and to go away and come back when you are truly sick.

Anything.

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