Three down

FYI- I am comfort eating my way through writing this blog entry with literally no guilt and it’s taken me way longer than last time to write it.but hey. That’s ok.

My treatment days have changed from a Wednesday to a Tuesday, which means I am with a different set of patients and I have a different chair. I like my new chair better because it is closer to the yellow mini picture and further away from the stereo, so the music the universe chooses to play isn’t so much in my ear. 

As I sat down, I couldn’t help but notice I was the youngest…by alot. As the needle goes into my super flash new portacath (which Hugo loves to grab and hurts like F**k), one of the older gentlemen says “Good Girl”. That’s what my grandad would say to me sometimes and it filled my heart with so much childish glee. I got the sense that maybe he thought I was too young to be there too?

My phone came out and I started to scroll through all the people who made donations on the give-a-little page, still in awe of it all. Every single one. I watched the video of the marathon fundraiser row Nick organised about 10 times. I let these energetically fill me up and infuse the drugs with good vibes. Crazy? Maybe. Will I still do it though? Hell yeah I will.

I got a ride this time around (special shout out to Ann!) so I wasn’t worried about getting home, but when I am in a vulnerable position, I find that other thoughts worm their way into my brain in its place.

It is absolutely no surprise to me that I start reflecting on my mum's cancer journey while I sit. After years of repressing that shit, I let the memories come because, after all, I think that this is all part of the healing too. 

A few vivid memories of my mum’s last 6 months of life arrive. The first, and one I had revisited when I first was diagnosed, was of her yelling down the phone. Frantically gathering documents together. Literally sobbing on the floor from sheer exhaustion and frustration, not just from the treatments and a terminal diagnosis, but because the life insurance we had got rejected.

Getting them to pay out was the focus of the precious months she had left and she fought them, literally to the death.

So when I got my diagnosis, having health insurance with the special cancer care included, I had already decided that I wasn’t going to waste a single drop of emotional energy on fighting to extract money from an insurance company. My goal is having my children grow up with a good relationship with money, and not have to endure the uncertainty, frustration, scarcity and constant hypervigilance that not having enough creates, like I did and the generations upon generations that came before us did. 

Even in spite of a cancer diagnosis, and the huge reduction in cash flow for our family of late, the standards I have for raising my kids have not changed. Infact, I think they have gotten higher.

The insurance company we are with promises a turnaround in 1-2 working days to get pre-approval. 47 DAYS LATER, after using everything I have learned working in insurance, sales and negotiation, I finally got a piece of paper I can take to my oncologist. Funnily enough, this piece of paper was in my inbox less than 4 hours after I said I would go to the media (which was my last card to play). Almost needless to say, they will not be covering even close to the full amount of my treatment.

Could I wage a full on war with them? Yes, I have all the supporting documents. Will I? No. The limited amount of energy I have while going through these treatments will be directed to healing, my family and friends. Not fighting. 

And as I sit there, reflecting on how much support Emma’s nest community has offered us and going back through my messages of support and all the funny AF memes (thankyou!!!).I know I have made the right choice in choosing to be supported, rather than fighting a lonely and frustrating battle with an insurance company. 

I feel good about that.

Again, I am pulled back in time to the day mum actually died. Maybe they should name these blue leathery lazy boys as “reflection chairs”, because that is what seems to happen each time. Or maybe they just trigger me because my Nana used to have one of these…but that is a whole other thing.

Anyway, that day, our house became a florist and so many meals showed up, we didn’t know what to do with them. 256 sympathy cards arrived (I know this because my nana had kept them all and I counted them), and everyone who told my mum “You're going to be fine” (including me) was now eating their words along with the home baking they were offered with their cups of tea my sister and I served them. 

With lived experience comes wisdom. If we can all learn something about how to  support our loved ones a little more in times of challenge from my journey, I’m all for it…enjoy this view into my heart. 

Once we had decided to fundraise and go public with my cancer diagnosis, literally thousands of supportive messages came my way. Sprinkled sparingly in between them during conversations, 3 main phrases that made my heart sink floated to the surface

“You’re going to be fine”
“I know a person who XYZ and they were fine”
“Compared to X person and what they are dealing with… it's not that bad”

These “you’ll be right” offerings feel like,
“I can’t deal with that, so let’s pretend it's going to be fine” 

“I have not met myself deep enough to be able to sit with you in this”
“We are separate” 

Now, these are all super common phrases that are generally accepted. I understand fully why people say these things. They are saying what they want to be true and vocalising their hope for you. There is so much power that comes from speaking aloud desires. Comparison is used to offer perspective so it might feel better. People want to share their own experiences about cancer, which is beautiful. These words can come from a place of care, and still, it can leave me feeling like I should scramble to cut the tie that connects my boat to their island.

Apart from witnessing my mum being told these “you’ll be fine” messages up until the day she died, or my dad reaching out for help before he committed suicide and being told the same, I think these phrases are so triggering (and I mean in the clinical sense, plummeting straight into fawn, not just pop psychology sense) because I have endured them (like most women I talk to) in a medical setting, when in reality, real help was needed. 

I had 2 separate doctors dismiss my mole before my new doctor just happened to pick it up while I was taking Hugo in about an ear infection we couldn’t shake. 

I have had so many other instances of this same scenario in the medical system, which again, might be a whole other blog post in itself, but the point is that these experiences have prompted me to priortise learning to trust my body. 5 years and still going.

Maybe I am just being too sensitive? I’d agree with you. However, I promise, if you are talking to someone about their diagnosis it is a vulnerable and sensitive topic, so it just makes sense to navigate the most care and love that can be mustered.

I can actually remember one of the first instances I ever felt held during a crisis. I was 33 years old. I was lying in a hospital bed waiting to be rushed into surgery for my second ectopic pregnancy. My friend Jordana called and we just cried together. That's basically all we did. I can’t even begin to tell you how much strength that gave me to go into that surgery. From then on, my bar of what empathy looked like, felt like and sounded like skyrocketed and luckily for me, lots of the people in my life were already there. 

I tell Emma and Hugo every night  “No matter what happens, I will always love you and no matter how hard it might be in the moment, it will always work out ” before they sleep. Because it’s true. 

It might not work out the way we had hoped for…but it still worked out on some level. 

I don’t know anyone who has made it out of this life alive. And in it’s own way, even death is a way of “being worked out”. 

If you are familiar with any kind of child psychology, you know that the parents are the child's safety. In the way that, without the parents' love, presence and support the child's body state lives in the equivalent of an adult living in a war zone. 

Keeping this in mind, when my sister and I were left as orphans, my greatest fear had been realised, and still…I was alive. Broken definitely, but alive and not completely useless.

This instance is where I get my courage and faith from. If you can survive the worst thing you can imagine happening to you, and even extract the beauty and wisdom from it, you’ve won

And you all know how I spell fun right? 

W.I.N

And so, I apply the same strategy to this experience. I am determined to extract the gifts and the learnings while also going through it, not around it. 

Ps- If you want to know the name of the insurance company I am with, I am happy to tell you privately. It just doesn’t feel right to name and shame semi publicly without informing them first. 

PSS- In between mothering, altitude owning and treatments I have also organised a “Auctions for Sarah” event that launches on the 8th March. We have received over $10, 000 worth of donations so far in hopes to raise the final cash needed for the treatment.
Check it out here