September Is Children’s Cancer Awareness Month.

Before reading be aware that this one has language, sadness, disturbing images and subject matter and the occasional angry rant. This still barely touches the tip of the iceberg.

I haven’t blogged for a while, there really hasn’t been a lot of inspiration of late. That and I wasn’t sure if anyone wanted to hear from me with all my whinging and negativity. I had one expert who came and saw my one man show a couple of years ago where I talked about my life. Part of it I talked about my family’s journey with Hayley’s cancer. He emailed me later to say the the bit about my daughter’s cancer sounded a bit too much feeling sorry for myself. He went on to say that we should embrace and celebrate all that life sends us because we deserve what we get and we can learn from it. I’m glad the ignorant piece of shit emailed instead of saying that to my face. NOBODY deserves the crap my daughter went through. There is nothing that I learnt in that time that I want to keep but it stays in my head anyway.

My 6 year old daughter learned that when you start chemo, you will vomit up everything you ate that day and feel like shit 24/7 for many months to follow. She should be thankful for that lesson.

Lot’s of people have put that gold ribbon on their Facebook profile photo. Go Gold For Childhood Cancer. I posted a cute photo of Hayley with her bald head. There is so much more to it than losing hair. A hell of of a lot more. I even shared someone’s beautiful and cute video about a window cleaner entertaining a young, sick, bald kid in the hospital. Kid gets up out of bed, wanders over to the window and smiles. Next day has multiple bald kids all standing around and laughing. I love the film, it has a great message but it leaves some crucial points out. Generally, if there is a bald kid in hospital, they have been hooked up to so much stuff that they can’t just jump out of bed without wheeling the pole along with then with whatever stuff is currently being pumped into their body. Chemotherapy, anti nausea drugs, painkillers, feeding tubes, etc.

So the real stuff. If you want Childhood Cancer Awareness, then here is some awareness that goes beyond a bald head. Most of this stuff occurs with cancer in general but I’m talking about the 1,000 Australian Children diagnosed every year and the 5,600 continuing treatment. My experience is based on Hayley and horror that she and my family went through and/or witnessed. But on so many levels, we were the lucky ones. Hayley is part of the 83% who won. Let that sink in. That means that approximately 1 in 5 don’t make it. They have these horrible, painful journeys too. But die anyway. Sometimes after months or years of that. That is about 200 Australian Children every year. Of the ones that are cured, 10% will get a TREATMENT RELATED CANCER later in life. Please think of that next time you say to a parent “Well, thankfully it’s all over now!”

Those figures are from The Children’s Cancer Foundation website.

One month before diagnosed.
In hospital. Day 1. Confusion.
3 days later. Another day of scans, tests and fasting. 2 Days before diagnosis.

Here are a few things that go beyond losing hair. Hair loss is a result of the chemo attacking fast growing cells. Cancer is a fast growing cell and so is hair. Therefore it goes. Fingernails are also made from fast growing cells. So is the lining inside your mouth, throat, stomach, intestines, bowel. Mucositis is a result. As Wikipedia says:- Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.

The hair starts to go

You see a lot of cancer children with those little hoses going up their nose. That hose goes up their nose and down their throat to continually pump something like baby formula in to keep the nutrition up. Because of the location of Hayley’s tumour they couldn’t do that so they inserted a peg. Which means they had to operate and cut a hole in her stomach and put the hose through a hole near her belly button and pump this stuff directly into her stomach. These operations usually heal pretty quickly. The Gastro (team in charge of inserting pegs) person at Royal Children’s Hospital told us they heal quickly. A week late, with no healing, the Gastro person said that of course it isn’t healing, she’s on chemo. Then why did the first dickhead who visited us in the cancer ward say that it would? In hindsight, the healing process uses fast growing cells. FFS! 

This peg site seemed to cause more pain for Hayley than anything to do with the actual cancer or it’s treatment. We had to change the dressing around it every night after her shower. Every night she would scream in pain as we did. Every fucking night for many weeks. Another time Hayley was in hospital, off with the fairies on endone. When the endone was starting to wear off the screaming would start again. We had the nurses organised to come in every 4 hours to top her up. But the nurses have multiple patients and sometimes the 4 hours could get stretched out and the screaming in pain would kick in again from the infected peg site until the nurse got there, gave her the endone and then would wait for it to kick in and she could relax again and usually go back to sleep. The on duty gastro doctor said this wasn’t worthy of their time to come and see if they could do anything to help.

From the top:- Feeding formula, Saline drip, Machines for those two. Spare machine ready for the next thing, Morphine, Ketamine. Yep, both at the same time.
Left alone for radiation with this machine.

The chemo itself. About 80% goes straight out with the urine. Her little body, about 15% lighter than before she got sick, was being pumped with so much liquid she was peeing a lot. It all had to be caught, weighed and measured for other things. So she was in nappies most of the time but when she was feeling a bit better we would have to unplug all the pumps from the wall, carry her in one arm while wheeling the pole full of machines pumping stuff in in the other hand, sitting her on the toilet with a catching bowl under the seat and notify the nurse to come and collect when it was done.

Many weeks after the feeding peg was removed and the wound hadn’t closed, Hayley was put on the waiting list to have the hole stitched shut. A few months of leaking and burning it was done.

This with the warning, make sure you be very careful not to get any of Hayley’s wee, saliva, sweat, etc. on your hands as it is full of chemo and it can burn your skin. Hayley got very sweaty one night. Her sweat was full of chemo. Her skin was burnt very badly. Here is a photo of her shoulder, not the worst part affected I’m afraid.

This was most of her body. Hot areas (armpits, crotch, bottom) were the worst hit areas.

The worst things to be seen, I can not show you as you don’t reach for the camera when reaching for the spew bag. You don’t reach for the camera when someone is screaming in pain. Or rushing to the toilet, or changing dressings when you need one parent to hold her still while the other does the changing. But here are some real shots, not just the ones we share to show when things are having a nicer moment. 

The line under her skin to carry the medicine from her port to its destination.
When there is nothing a mother can do but hold and cuddle to try and bring comfort.
Fathers too.
Magical Big Sister Cuddles.

Ice cream. Mostly thrown out. Some probably thrown up.
Waking up after the hole in her stomach was stitched closed.

Make sure to click on any links above and if they take you to a Facebook, Twitter, Instagram or IMDb Page, including MINE, then please click LIKE. Also hit on the Subscribe button to be kept up to date with what is going on in my little world, it’s to the right of your screen on a computer and down below if you’re on a mobile device. Thank you.

Love to all, chat soon

2 thoughts on “September Is Children’s Cancer Awareness Month.

  1. Your comedy routine was hilarious!! The rest is brave truth… If people who aren’t directly affected only knew xxx I want to hear your brave story!! I love your updates, I love your family. You started inspiring me. Now we need to inspire you back!!! Come on, U can do it!! Call Ben. He’s funny too. You were so funny a blind lady thought I was 5 different people!!! Funny breaks barriers. Your family are amazing!! Just be funny, happy and honest. You can make a difference…

  2. Hearbreaking, painful, and real. This is the side of cancer that only the closest family sees. I hope for much better days and healing for Hayley and your family. You guys are always in my thoughts.

    And fuck that guy who talked badly about your routine, I’m sure it reached the people who needed it more than anything.

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