1 Like =1 Prayer

I post a lot about my journey with cancer. I post not for sympathy, but to educate people on the reality of cancer. To open up peoples minds and not be scared.

When I post and somebody likes it, I see that as a prayer to their God. I believe in the power of prayer or good vibrations, whatever you want to call it.

If you like my post, you’ve read it and hopefully I have taught you something. Don’t be afraid to respond to a post with a bit of humour. When you respond with words from a hallmark card, I know you don’t know what to say, so please talk to me. This doesn’t need to be awkward

When I post something like my combover pictures, I want you to laugh with me. I’m not inspiration or brave for losing hair

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Lost eyebrow and bald patch

I am still the same weird person I have always been. So please have a laugh with me. I’m not a pity case. I want you to laugh with me now, and when I’m gone, I want you to laugh at all the mindah things we did together

Treatment Schedule

I started my chemotherapy regime on the 5th of August with a wait to see the specialist, then a three hour wait for my medications from the oncology pharmacy.

This routine is a new treatment and designed especially for brain tumours.

Last week I had my first dose of vincristine. Again a wait for the doctor then a really long wait for the oncology pharmacy to get my dose prepared.

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I entertained myself by visiting the foyer and catching some of the entertainment there

I had a quick visit in the Indigenous room, to see if anyone was there to have a chat

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It was eventually time to return to the daycare unit. I seriously don’t know why it’s called daycare. There’s nothing fun like a slippery slide or sandpit in it.

The unit was very crowded and I eventually was given a chair to sit in and was tucked up nicely in a blanket. I love being tucked up in a blanket, it always makes me feel safe.

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The waiting was over and in less than 20 minutes I had been given my intravenous medication.

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When I left the hospital I had 21 days worth of tablets to take everyday and then I will go back and have another IV.

After that, I start the whole procedure again

The Comb Over

I have been wearing hats and scarves since half way through the radiation treatment, because I have been losing hair. It’s thinning all over, but really going around the right temple, where the treatment was directed.

I have the weirdest bald spot

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The receding hairline I can live with, but the big side bald bit is so obvious.

I have tried a couple of ways to not so much as hide the spot, but to make it less evident, because people react strangely to a bald spot that is so obvious

Attempt 1 Involves just fluffing up the hair and pulling part of it over the bald area.

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Attempt 2 head upside down and dry hair that way and hope it stays in place.

This is alright when I’m around the house or have to drive daughter anywhere.

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When I have to go out anywhere it’s always a head cover. I never really noticed until recently how people react when you go around with a big bald patch. The stop and check if you’re alright or give you the sympathy looks. So covering the head is not just for my benefit, but for those without a brave heart who have to see me.

The End of Treatment

Today is the end of radiation treatment I have been zapped everyday, Monday to Friday for six weeks. I started treatment suffering from debilitating headaches everyday, at times being hospitalised for them.

The first few weeks the headaches were worse, but I got into a routine of having Panadol before treatment and then more Panadol with endone after the treatment.

I have had a change to the headaches and they have stopped and those that still happen can be controlled with Panadol and endone. I am no longer stuck in my room with the curtains closed.

Today being the last day I was given my mask

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Today being my last day I was given my mask and my treatment schedule, nicely decorated.
I will decorate my mask into a warrior

It has been an eventful six weeks, but I have been lucky to have the one team and only one hiccup, that called for a change in my team.

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The award that everyone is given when they finish their treatment, is really sweet. I was hard to photo because it kept rolling back up.

Just before I finish this post, something you might be interested in:

I spent the afternoon with most of my children. We intend to do it again tomorrow with all the family.

Good night

NACCHO Aboriginal and Torres Strait Islander #MentalHealth and #Racism #BlackLivesMatter : Australian psychologists stand united against racism in …

” Recent international events have put a spotlight on issues of systemic racism in our society. The resonance of the experiences of African American,…

NACCHO Aboriginal and Torres Strait Islander #MentalHealth and #Racism #BlackLivesMatter : Australian psychologists stand united against racism in …

The End Is In Sight

This is my final week of radiation therapy. While it seems daunting at the start, half way through it seemed to go so quickly, and now the final week.

I’ve been feeling better and not so many headaches which is great, I have seen changes to myself, maybe by way of my hair thinning and having a bald patch forming on the scalp above Charlotte.

The first sign of the hair thinning was on my pillow one morning, since then I have found so much hair on my shower floor.

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It’s a weird feeling to see so much of your own hair, not on your head. I am lucky I have so much hair, that I still have lots of hair on my head

My hair is thinning all over but the main loss is coming from where the tumour is, as the targeted treatment goes straight to the area.

My only hope is that it grows back to match the rest of my hair.

It seems like my hair was just getting back to normal, when this happens, but at least I have some cool hats and scarves to wear.

I have been up and down the area that I have radiation and all the rooms are named after men. Old straight white men. I really want to see some women up on the signs. I know their is a room named after Madame Curie, but I haven’t found it yet.

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I have been having my treatment in PA6

I’m looking forward to Friday and my last treatment. I will miss seeing some people at the Princess Alexandra Hospital who have been absolutely wonderful. Especially my team, who have. Worked well with me and have always been respectful of my culture.

Fingers crossed that this has stopped the annoying tumour called Charlotte and she is finally vanquished.

My Deadly Treatment Playlist

Now I’ve finished week four, I’m excited that it’s only two weeks to go.

One of the things that makes treatment good is having my own treatment playlist going. I didn’t realise that I could share Spotify playlist, until starting the treatment.

My list is shared on the hospital media, so I don’t have to worry about forgetting my phone. It makes it easier and less stressful to have my own smooth music playing.

I’m sharing it here with you, I hope you enjoy it as much as I do.

https://open.spotify.com/playlist/05bm0AprPRonKZzEjJLQPH?si=JzVaz-AfQHO-k7djOpG45A

Why Are We Still Dying

I’m alarmed at this. The number of Aboriginal and Torres Strait Islander peoples dying from cancer, should not being increasing.

Something is seriously wrong in the medical system when the number of deaths from cancer is on the rise. We need to fix this quick, to stop these deaths.

In a country like australia with so many advances in medicine, why are my people still dying. I’m glad that Menzies is looking into what has gone wrong, so it can be rectified.

https://www.abc.net.au/radio/programs/pm/rising-indigenous-cancer-death-rates-are-being-overlooked/12389792

https://www.abc.net.au/radio/programs/pm/rising-indigenous-cancer-death-rates-are-being-overlooked/12389792

Halfway There

So now I am halfway through my treatment. 3 weeks down, and three more weeks to go. I am pleased to report that I have had no major side effects, just really tired, but that’s minor compared to what could be happening.

It’s a bit tiring when the travel time is longer than the treatment. It takes me about 30 minutes to get into the hospital for a treatment that takes 10 to 20 minutes. But it’s getting to the end stages and that is exciting.

The waiting room is decorated by some lovely artwork from a school, and it makes me smile

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I have my mask at the ready and I’m pleased to say that I haven’t felt ill during treatment. One of my fears had been that I end up vomiting in the mask as I spin around.

I’m looking forward to decorating my mask at the end of treatment, It will look like a warrior woman’s mask

The First Week

I arrived with my appointment card in hand, and was told to report to the nurses as this was my first time. They checked and double checked all my details and showed me the rooms that I would be getting my treatment, and the designated waiting rooms for each. I had my playlist for treatment and the staff seemed to like my playlist. It was over and done with in a very short time

The next time, my playlist was playing as I entered the room, yep, they did like my playlist. But not all days were easy. I had on one particular day a nurse ask me what she, as a white woman with privilege can do to help in these troubled times. The wording is strange as she doesn’t mention what the troubled times and come to think of it, what are these troubled times? She has the luxury of only being concerned because of George Floyds murder. She doesn’t have to think about Black Deaths in Custody. Nor does she have to worry about a black son who could be killed by a police officer

I answered her question by encouraging her to read, recommending some websites and books. But really should I have had to do that? I’m the patient and I have to spend my treatment and healing time helping someone, who could have just googled to find information.

This is one of the problems that Aboriginal women face, the constant educating of the white woman. We do it because we want our kids to have a better healthcare system. We do it to protect our kids, to break down the barriers of racism.

I can’t see a white woman calmly helping me if I asked about white issues. She would tell me that she was the patient and the number one priority. Yet we don’t get the same respect