The Plumber, His Missus, & Her Brain Tumours

WELCOME TO THE PITY PARTY-WOULD YOU LIKE A BALLOON?

We get it drummed into us that we need to love our bodies at all costs. Yeah, nah. I'd like to file for divorce from mine.

Despite the fact that I have never smoked, used drugs, skipped a medical check up or vaccination; my body has seriously let me down. On top of 3 poxy tumours [all 3 different types], my body has decided that wasn't sufficient, I now have a neurological disorder which causes seizures which then leads to aphasia [Impaired speech]. Except that now I can't talk. At all.

It's been over a week. And for someone who hates numbers but loves words. [Hello, totally useless university degree in languages.] This is excruciating. Not being able to walk or talk is incredibly isolating. It feels hard to connect with people, especially during social situations where conversation is flowing. Yet I'm sitting there bobbing my head up & down like one of those clown heads in Side Show Alley.

So, my body sucks, and I expect all of you to take my side in that particular divorce!

Rach x

Photo of Rach in denim pants & a grey poncho in front of the Story Bridge in Brisbane

Photo credit: Carine Boustany

REFLECTIONS ON CHAOS

6 years ago today, an inexperienced neurologist with zero bedside manner, strolled into my hospital room. He announced that I had 2 brain tumours & that their location was problematic. Then out he wandered. That triggered an experience I could never have imagined.

Some good things. Some bad things. Some meh.

Got married 💕
Had radiation 🤮
The Plumber retired 😊
Stopped work 😥
Gained a love of genetic genealogy 😍
Had my spinal cord cut open 🤕
Meant some amazing people 🥰
Learnt terminology I'd never imagined 🤔
Navigated the intricacies of the NDIS 😜
Tried to adjust to life in a wheelchair 👩‍🦼

Today I'm reliant on a large amount of care. And modifications that I'd never thought about. Whilst we'd had hope that I'd return to a more 'normal' life, we've realised that's not currently realistic.

So our next adventure is an interstate move. Sun, sea, and crucially a single level house.

I've outlived my prognosis. And that's worth celebrating, even if the diagnosis isn't.

Rach x

PINK HAIR, DON'T CARE

I've always believed that where possible, as women we should do our utmost to uplift other women.

Trace has been doing that for me, one way or another for the last 8 years. Helping out my kids, enabling my Marketplace shopping fixation, making me laugh. Just such an integral part of my life.

We have a pact, that if our husbands run off with Vegas Show Girls, that we're going to buy an old stone church in Tasmania & fill it with weird & wonderful op shop finds.

Trace you're my one & only TWSWITW, love ya x

Photo of Tracey, dressed in black with pink curly hair. The Northern Beaches in the background.

BRAIN TUMOUR AWARENESS MONTH


-please don't ask people if their tumour is benign or malignant, as this implies one is somehow 'better' than the other. Benign tumours destroy lives. And in the wrong location, they take lives.

-survival rates have not improved in 30 years

-in Australia advocacy is provided by Peace of Mind Foundation & Brain Tumour Alliance Australia (BTAA)

-brain tumours occur in the brain & spine

-there are more than 120 types of brain tumours

-2000 people a year in Australia are diagnosed with brain cancer

-avoid 'war' technology where possible. Calling someone a warrior, or saying they're fighting a battle-if they die, does this mean they didn't fight hard enough?

-brain cancer kills more children than any other disease

In loving memory of:

❤️Adam
🩷Angela
🧡Benjamin
💛Dainere
💚Gretel
💙Harry
🩵Jaxon
💜Josh
❤️Lauren
🩷Lorna
🧡Ruby
💛Taylor
💚Ulli

Pic 1: shows how different areas of the brain function, and therefore how tumours affect them

Pic 2: I think until you see brain cancer first hand, it's kind of hard to conceive how brutal it really is. Gray matters 365

NDIS FUNDING

There has been much in the news lately about an NDIS budget blow-out, corruption by providers, and misuse of funds by participants. And I can understand why taxpayers are frustrated & angry.

So I'd like you to see what funding provided by the taxpayer is doing for me personally.

Currently I'm at an STA facility, also known as respite care. This means my husband & other carers/support workers get a break from caring. Because paid or unpaid, caring is a tough gig.

And they get this break, while knowing that I'm somewhere safe. And hopefully this helps to avoid carer burn out, and means my carers can remain productive community members.

While I'm here, I am doing a 1:1 90 minute physio session each day. The goal is to make me stronger. If I'm stronger, I'll fall less. This equals less potential hospital admissions, and less reliance on support workers. Which means a smaller financial burden for the community.

While here, I am cared for by: nurses, guest attendants, physios, housekeepers, recreational staff, & admin staff. All of them amazing. (Especially Kylie & Natalie.) That's a whole bunch of gainfully employed tax payers right there.

Last but definitely not least, I get to have experiences that make me feel somewhat normal again. And that has a huge positive impact on my mental health; with all of the science showing that improved mental health leads to improved physical health outcomes.

NDIS funding matters.

Photo shows Rach in sunglasses, teal coloured top, denim pants and funky red shoes (these are NDIS funded & specifically designed for disabled people), cruising in a Magic Mobility X8 wheelchair on Collaroy Beach.

ALL YOU NEED IS LOVE

The last week has been an interesting one, as we have travelled around to see friends and family. I am grateful again for the diverse network of amazing people we have; for NDIS funding which put a wheelchair hoist in the car so we could cruise; and for the inclusiveness I experience even when it is challenging for all involved.

Almost 12 years ago, my cousins completely lost the run of themselves, and in a moment of madness asked me to be godmother to their daughter. As an avowed atheist, I immediately said yes! Enjoyed my time with her this week, she is a delight.

21 years ago, I gained a friend. I initially wasn't sure how it would go. She carries herself with a grace & confidence that I could never emulate. But she persisted, and she has been there for my lowest lows & highest highs. So what a privilege to watch her marry the love of her life over Easter.

Last but not least, I got to reconnect yesterday with a school friend that I have not seen in 35+ years. He is a radiation oncologist, who in a shocking turn of events is not arrogant, nor does he take himself too seriously. [Not my cancer experience so far.] He is lovely, and it was fantastic hearing about his happy life.

As for the Plumber and I, we embraced the sun, sea and sand. Love really is all you need.

Rach x

PHOTO DESCRIPTIONS

1. Rach in a pink top, sitting in her wheelchair. Standing next to her a tween in a black tshirt.

2. Beautiful bride in a stunning dress standing next to her handsome groom, in front of a VW Kombi.

3. Rach in a blue top in her wheelchair. Crouching next to her, a man in a blue & white top with a big smile.

4. Rach in a blue top in her wheelchair, with the plumber standing behind her with his arms on her shoulders. The amazing vista of Port Macquarie behind them.

MILESTONE

If you'd told me before surgery how much my world would shrink, I don't think I would have believed it.

In the last 2 years I have not been inside a private residence in Canberra.

Our house design is such that I can't go out the front door without assistance.

Footpaths are often not wheelchair friendly.

So I'm pretty much never on my own. There is almost always the Plumber, offspring, friend, neighbour or support worker within shouting distance.

Autonomy & independence are a memory.

Buy today there was a little breakout. And I went for a cruise around Big W on my own. With my nearest 'person' a 15 minute drive away. I contemplated going to get something to eat, but the return of my aphasia made me a bit anxious to do that.

Baby steps.

Photo shows a blue & white Big W bag sitting on an unmade bed.

INCLUSION

There is a definite lack of awareness of what inclusion, accessibility and equity mean. For me, it means having the ability to use freely available means and tools to do pretty much the same things as everyone else does. It does not mean people doing things for me.

[In line with advocating for wheelchair accessibility, I'm going to start writing a description of pictures I post to assist vision impaired people.]

We are road tripping at the moment to celebrate the Plumber's birthday. Picture on the left is the access to the 'wheelchair accessible' accommodation we checked into today. I'll let you think on that for a minute.

Picture on the right is a ramp built by Gilbert. Who is Gilbert you may ask? He is the husband of the Plumber's cousin-Hilary. I met them plus the rest of this beautiful family [Helen, Robyn & Sven] for the FIRST time yesterday, when we had dinner at Hilary & Gilbert's house. And Gilbert built a ramp so that I could get into their house. For ONE dinner.

When I saw the ramp, I wanted to cry & hug him all at once. I don't think he knows what a gift this is. A gift that demonstrates an understanding of accessibility, equity and inclusion.

As for our accommodation, they're getting a Google review.

Know better, do better.

Photo description:
Picture on the left shows an open doorway with a concrete half step, and a concrete path in front of it.

Picture on the right shows a wooden ramp leading up to a glass sliding door, with square tiles alternating in a black & white diamond pattern.

This post was meant to be written on Friday. But Friday was the day I had my second seizure. We'd made the decision after the first one that we would try & avoid hospital if at all possible.

This one hasn't been as bad. My speech is disrupted again & I'm experiencing additional limb weakness. But we've been down this road before, and no doubt will travel it again.

So belatedly, but very importantly happy birthday to the Plumber. You've held my heart since our first chance meeting almost 10 years ago. Serendipity. I'm grateful for the strength you continue to give me, and look forward to many more adventures. My love, my life.

I have always struggled with photos. The self criticism is so loud it drowns out every other sound. Going through photos of the last 26 years since I became a mum, there are literally thousands of my kids. I estimate that I am in less than 1% of them.

I wanted to attempt to change that narrative. But I'm in a wheelchair, overweight & in my 50s. And the internal programming is very strong.

After months of dithering I contacted a well regarded local photographer, who took approximately 200 photos. Ben was lovely, and very kind. He took great photos, but it was weeks before I could look at them, and longer for me to come up with 10 that I could live with.

The edited images arrived yesterday. I will never be satisfied with my outward reflection, but these photos show the overwhelming love the Plumber & I have always had for each other.

And that love is enough to make these photos beautiful.

Thank-you Ben.

Rach x

Photo credit Photox - Canberra Photography Services

TIME TO REFLECT

2 years ago today I woke up after surgery for spinal cord cancer. I couldn't walk. Hundreds of hours of physiotherapy later, that situation hasn't changed.

There's been some losses, but in the main they've been balanced out by the wins. Jason Momoa still hasn't realised I'm his one true love 😳. Luckily my ever fabulous plumber stands in for Jason & does an outstanding job 😍

My battles with the NDIS continue. But after some false starts I've now got an excellent medical & support team 👩‍🦽.

In some ways the 2 years have flown, in others they've felt endless. I remain energised & cradled by my friends & family.

Rach x

BRING ON 2024

Those that know me, know that Jason Momoa is my #1 hall pass. That if I was prime minister I'd only allow peppermint chocolate to be sold. No other kind. That I can bore for hours on the subject of genetic genealogy. That I have spinal cord cancer & an inoperable brain tumour. That I'm a secular humanist, socialist & pacifist.

What you probably don't know is that I'm a sexual assault survivor. That surgery to remove the spinal cord tumour didn't just leave me in a wheelchair. It left me incontinent. That I've lived with severe depression for 40 years. That I've planned my funeral: invitation only, and my ashes in party bags. And that I've always felt I'm not good enough.

But 4 things happened yesterday.

A neighbour that we don't really know came by & offered to mow our lawn. His reasoning, because he was grateful for my contributions to the community via Neighbourhood Watch + our street library & pantry.

My new support worker told me she enjoyed spending time with me.

My cousin called me. Told me I was gorgeous & that he thought of me like a little sister.

And best of all, I played a small part in helping an adopted person find their biological parents.

So maybe, just maybe I'm not the waste of space that I've often felt myself to be. And maybe, just maybe 2024 will be the year I finally lose the enormous weight of other people's opinions.

If you've managed to read this far, do me a favour. Call or message someone in your life & tell them why they're important to you. Little reason. Or big reason. Doesn't matter. Because we ALL need to feel we're valued. We ALL need to feel that we matter.

Because if we don't, what the fk is the point?

Rach x

Photo credit Cathy Franzoi 2019, Waihi Beach, New Zealand