Cancer

The days are long, but the years are short

by Veronica on May 27, 2011

I stepped back and took stock of everything. It’s nearly June and the dread of the month is probably far worse than the actuality of it. I remember not writing about a lot of things, for fear of upsetting Nan and now, I look back and wish I had a record of each day as it passed, of the emails sent and received, of doctors visits and prognosis and finally, inevitably, the downhill slide to death and grief.

I wish I had every word, every memory, saved for posterity, rather than relying on the memories of a stressed and sleep deprived mind.

Someone said to me once, about life with children: The days are long, but the years are short. That fact slapped me in the face as I realised that it’s been nearly two years.

I’m not sure where that time went, except it’s gone now and wishing it back again isn’t going to change a thing. Would that it could.

Two years ago my son was small and placid, content to lie on the floor by himself. He was smiley and he attended every appointment with us, while I wondered how much time she had left and whether she would see my children grow up.

Life is hard. When you’re the one having to move through life after death, when it feels like the world should just stop and allow you time to process your grief and learn to live again, that’s hard.

***

Stop. Move around and remember to breathe. In and out, out and in. Don’t think, don’t remember, just get through the day.

Make it through until bedtime, then go to bed. Sleep, dream and wake, to do it all again, over and over.

If you haven’t torn your hair out by now, what’s stopping you?

We get caught up in the drudgery of the days and fail to see the years passing by, faster and faster. Like a river, speeding up as you head towards the waterfall (a hurtling death), you can’t seem to slow it down.

One day, you’ll turn around and look at the river of years behind you.

***

The years are short, but the days are long and I need to just keep moving.

Everything will be okay.

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Bakers Delight and the BCNA – Pink Buns

by Veronica on May 12, 2011

in Blogging,Cancer

Subtitled: I took my daughter into a commercial food preparation area and no one cried.

In aid of the Breast Cancer Network Australia, Bakers Delight is icing finger buns with pink icing, selling them and donating the proceeds to the BNCA.

It’s a pretty cool idea and something I was happy to support, especially as cancer has been a bit of a theme in our family. My great grandmother beat breast cancer years ago, but sadly lost her sister to the disease. Her sister’s ring will be my wedding ring in a few months and while I never met her, I like the family connection through my Nan.

Because the BCNA was asking bloggers to raise awareness, somehow I managed to get myself an invite to the closest Bakers Delight store, to see what they’re doing first hand and ice some buns myself.

Of course, being a “mummyblogger” I took Amy with me. What better way to ice finger buns, than to take a 4yo into a bakery?

We had fun, icing buns and chatting to the staff. Amy loved it and was so well behaved. I couldn’t be more proud of her behaviour.

Bakers Delight is aiming to raise $1m to give to the BCNA, which helps support women with breast cancer.

And, if you live in the area, I can highly recommend Tim and his team at Bakers Delight in Claremont Village. Their finger buns are delicious.

***

Disclosure: I was not paid for this post and I didn’t request to be. Amy and I did get to bring home the finger buns that we iced, plus a loaf of bread and some rolls – but that was because the owner/baker Tim was generous, not because he had to.

Supporting people through cancer is something I feel strongly about and therefore, so is this cause. If you can buy a bun in the next week and photograph yourself (or your child) with it, then send it to me, I’ll add your photo and blog link here.

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Decompressing, whinging, sad and stuff. My brain hurts.

by Veronica on May 11, 2011

in Blogging,Cancer,Grief,Headfuck

Sometimes, I write things here and it all goes along swimmingly. Sure, you don’t get the whole story of the ups and downs, but that’s because no one wants to read 3000 words on how my feelings are feeling and how my kids are acting up. Not to mention I don’t want to write 3000 words about my feelings.

Other times, I go to sit down and write and come up blank and I end up walking away from the computer, rather than writing things out. When I’m feeling like my blog isn’t my safe place anymore, there is usually someone tromping all over it with their muddy boots, making smart arse comments designed to make me feel bad.

And let me be clear, I’m not anonymous in this space. I’ve never been anonymous. People find me here and then meet me IRL, or the opposite happens and I have no issue with this. In fact, if you know me IRL and you’re reading here and I don’t know you are, I’d love to hear from you. Even if you’re my next door neighbour, or one of the school mums.

This space stops being a place to talk, when I’m seeing snarky comments written about me. When there are judgements being passed, when they have no idea. When people don’t believe that what I’m doing is beneficial for anyone and so they set out to make me feel bad, by snarky, passive aggressive shit posted online.

That is when I retreat.

I’m not sure if I stop writing to save my own sanity, or because I get angry enough that I want to throw rocks at people, but either way, I sit on my emotions and stew and nothing gets written.

Then I get PMS and I cry on the phone to my mother because it’s a week til payday and I’ve run out of bread and milk and while there is enough money to buy more bread and milk and not have a cent left, this shit sucks.

When it’s not about the money really. It’s about feeling powerless, and angry. About being bitter and not having anywhere to talk about it. About being hurt and upset, because seriously, what adult goes out of their way to make someone else feel bad? Are you five?

My last major retreat from being able to blog was shortly after my grandmother died, when shit happened and I was so broken emotionally that I couldn’t connect enough to write what I was really feeling. Sure, I wrote surface stuff, but writing about how breathing hurt, or how I just wanted to sit in the sunshine and cry, that wasn’t happening.

I still miss my grandmother and the emotional shell I drew around myself 2 years ago has shattered and I’m feeling things, crying and being miserable. Grief is a process and you don’t always move forwards.

Amy’s Kinder Aide was speaking to me yesterday morning about Amy and some issues we’ve had in the classroom regarding friends. She looked at me and said ‘Amy is such a lovely child. I look at her and know her grandmother would have been proud. I think about Lyn a lot, and know she would have been so proud.’

I had to leave, because I was going to cry.

It is lovely to know that my grandmother made such an impact on people.

And then I cry, because lung cancer in a non-smoker is not how life is meant to happen.

Life has been getting on top of me and that’s okay. It’s okay to be sad and emotional and not want to write about it.

What isn’t okay is feeling like I can’t write, because of the judgements being made.

That’s when I get upset.

This is MY space. Not anyone elses. And if you feel like I’m not contributing to society enough, or that autism isn’t real, or that my joints don’t really dislocate, you can get stuffed.

And that’s that.

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On grief and pain

by Veronica on October 14, 2010

in Autism,Cancer,Grief,Headfuck

My grandmother died 16 months ago. Some of you know this, some of the newer followers may not.

A few months after her death, I stopped blogging about it here. I’m not sure why, a feeling of not wanting to make you uncomfortable with my grief. A grief that while it colours every day of mine, isn’t really appropriate for polite conversation.

Saying my grandmother died doesn’t really encompass everything that her death meant to me. She was a mainstay of my life, being as close to me as my mother. In some ways, they co-parented me, sometimes Nan more, depending on how full of teenage angst I was on any given weekend. When I was fourteen, I moved into her spare bedroom and lived with her until I met Nathan and moved out ‘properly’.

When Nan died and we stood around her bed and watched her last breaths, it was hard. However the shock of it coming so suddenly, a fast decline when her cancer got the better of her, it cushioned me for a while. Yes she was dead, but the deadness hadn’t sunk in yet and I couldn’t feel the enormity of it yet.

People told me that it would get better, that it would hurt less.

And, no.

It hasn’t and it doesn’t and I don’t expect the huge waves of missing that I feel to abate. Some things need sharing with my grandmother and unfortunately, no one else will do, as much as I would like them to. Some things were her realm alone and not having her here rids me of a lot of my support system.

So it’s been hard, this last sixteen months and the previous twelve months before that as we dealt with her cancer diagnosis and the ups and downs that treatment for terminal cancer causes. During that time Isaac was born and I was diagnosed with Ehlers Danlos.

Unfortunately, Nan’s death wasn’t the culmination of shit hitting the fan, it was merely the mountain in the middle.

Every day when Amy is hard, or Isaac is having issues, I want to pick up the phone and call her. Every. Single. Day.

Grief is hard. Especially when a suitable amount of time has passed and grief is less socially acceptable. I can say I miss my grandmother, but I can’t add that that it feels like a stone stuck in my chest weighing me down, that it physically hurts sometimes and that I miss her with every ounce of my soul.

Isaac is getting quirkier and Amy is getting defiant and angry. It’s been hard, knowing that this is a long road for them and while it’s going to get different, it probably won’t be easier. There is grief there too, grief for normalcy, grief for an easier time I hoped I’d get eventually.

Lots of grief.

For the first 12 months after Nan died, I couldn’t cry. I held myself so tightly contained that nothing got out, aside from panic attacks. It wasn’t the healthiest way of dealing with it I’m sure, but it’s the only way I could.

Lately the tears have been flowing more often, but it still feels unacceptable, that how can I blame the feeling that everything is falling down around my ears on the fact that my grandmother died last June?

It doesn’t feel like I can, so therefore I don’t and then I fall apart in spectacular fashion and hide in the bathroom with tissues and the chocolate topping. Some days, it is that bad.

Parenting Amy is hard and when Nan was alive, she would frequently visit, just enough to take the pressure off me. We don’t have that now, that extra unconditional support. The rest of our family is trying hard to understand what we’re dealing with with Amy, but I’m still finding it hard.

It feels like I’m doing this alone sometimes. When Amy is sensory seeking and bouncing off the walls and I’m the one awake with her, trying to limit the damage to the house and herself. When Isaac is racing around screaming at the top of his lungs (because he’s just learned how to shriek) and my ears are bleeding. When Amy is climbing the cupboards again and I’m trying to keep my shit together. When Nathan doesn’t want to discuss it anymore and Mum is trying hard but it’s going to take more time for her to grasp the entirety of the situation and my mother-in-law is always more than willing to help if I ask. When asking is the problem, because I don’t know what I need to make this easier. I wish I knew what I needed, what I could tell people, what I could ask for to make this easier. On me and on the rest of our families. That’s hard too, not knowing how to make this easier for everyone else to understand and deal with.

And when we add that to grief, I start to find things really hard.

I miss her, so so much.

I miss the person I was before she died.

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Kidspot’s Top 50 – Blog your way to Dunk Island.

by Veronica on August 18, 2010

in Amy,Blogging,Cancer,Ehlers Danlos Syndrome,Grief,Headfuck

I’ve not had a major holiday in a long time. Never since I’ve been with Nathan and certainly not since our children came along. In fact, the thought of a holiday, while sending me giddy with excitement, also freaks me out a little bit because wow, have you met my daughter? She’s a bit challenging. So we’ve never had a family holiday, which is a shame. I’m sure we’re missing out on something.

The last holiday I had, I was 13. I saved up for my plane fares and I went to Adelaide with my grandmother for Easter, and she was, obviously, still alive then. We had a brilliant time working out bus routes into the city and shopping and exploring Adelaide. Oh my word, the shopping. That woman was fun to shop with. We ate sushi for the first time (we were hooked) and it was a blast.

But you know, I was 13 and my Nan wasn’t dead, so I may have my rose coloured glasses on a little here.

Anyway, I was named one of Kidspot’s Top 50 Mummy Bloggers, which is kind of a big deal for me. The sponsors love us apparently and want to send one of the top 50 mummy bloggers to stay in tropical paradise for a week. Which is my ideal holiday, imagine how well my joints would do if thrown into warmth? And not Tassie Pseudo Warmth, but actual real warmth? I digress.

On the flip side, I am up there alongside some amazing women, who desperately deserve a holiday of their own. Tiff for instance, my amazing friend, who has spent more time in hospital with Ivy these last few months than anyone should ever have to.

My last 18 months has been a bit of a nightmare. Cancer diagnoses, hospitalisations, Nan dying, anxiety attacks, more hospitalisations, geneticists, Ehlers Danlos Syndrome, a coeliacs diagnosis, Paed appointment after Paed appointment, broken arms and finally, early intervention and the beginnings of a diagnosis that is looking likely to end up as Aspergers for Amy. Yes, I finally said it out loud here, despite not wanting to jinx myself. We think Amy has Aspergers. There is a lot going on with Amy that I’ve not even been able to bring myself to blog about, because how do you tell the InterWebs that your daughter is amazingly talented, but oh my God, I think something is not entirely right here.

I would love a holiday and you can actually vote for me over there. You can also click through and have a look at my three favourite posts and what I’ve got to say for myself.

By the same token, I am absolutely thrilled to have ended up as a top 50 blogger. I’ve been doing this for a very long time now and it’s nice to have someone say that they enjoy reading here. Every email I get, every new commenter who says ‘I get where you’re coming from’ makes me happy.

And sometimes, being happy with what you’ve got is enough, no matter how long ago the last holiday was.

***

Have you been on holiday with your family recently? Where did you go? Where would your dream destination be if you had unlimited funds? (Unlimited funds would send me straight to England to visit my very favourite bloggers over there, before a quick trip to Kansas and then home again.)

I’m half hoping that this summer, we can go and spend a few days on a beach up at St Helens with the kids because that would be lovely and relaxing. Failing that, a day trip to the beach would be nice. Or anywhere I can keep the kids semi contained while I lay in the sun with a book and my sunscreen. Like the backyard. Maybe here, in the depths of winter, I’m just longing for sunshine and warmth. A very real possibility.

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