Yesterday Was A Bad Day On The Rollercoaster

Elysia DeCelis, her four children and Noah and Evie Byrne

Yesterday was a bad day on the rollercoaster. Tough, overwhelming, painful and exhausting. I want to tell you all about it but before I do I want to thank every single one of the 502+ people who have shared our post looking for other women like me. It’s unbelievable how supported we feel. We’ve had so many messages and comments with new info and we’ll follow up every single one. The power of social media for good is real!!

I’m finding it hard to keep up with messaging everyone back but please don’t stop! Know if I don’t reply I do read them all and i genuinely appreciate everyone reaching out. I’m also a little overwhelmed with the emotion of what’s happening so I’m shutting down & going off the grid for a few days for a weekend away with my little family (which was planned months ago as an end of cancer treat).

So, yesterday…. Monday they took 3 biopsies from my rib bone lesion, then Tuesday started high dose radiation for 5 days. When they told me I’d be in more pain and it would get much worse before it gets better I had no idea. I also didn’t expect the first radiation treatment to completely wipe me out with utter exhaustion.

For the last year, I have fought every minute of every day for my health, I have worked so bloody hard. I did everything they asked me to do and some. Walking when I was floored, tough weight sessions at the gym twice a week at least, during treatment and after, and the most positive mindset anyone could imagine. And it took all I have to push through. I did it for my kids so they could have a mum that could play with them and look after them without help, and I did it for myself to get my life back. I did it for Dom and all the people I love so they would know what they meant to me and how hard i’d fight to stay with them. And in just one day I felt stripped of all of it. I’ve said I am ready to fight and to suffer again, but I didn’t expect the pain, utter exhaustion and paralysing fear to hit so soon. Too soon! Bone cancer hurts… it really f’ing hurts. Yesterday I remembered what I felt at my lowest points in the last year, and there’s a reason your body forgets pain. So you can get up and go on! And it’s not until you are back there on the floor, exhausted & hurting that you remember how hard the fight really is.

Besides the physical suffering the day started incredibly badly. Dom was out of the house before we all woke and Noah woke up before me. He tried to wake me. No luck. He ate an Apple watched tv and tried to wake me. No luck. So he got my phone and started calling people until he got my sister (who lives over the road), and asked her to come and make him breakfast. Uuuughhhh… My heart breaks into a million pieces. I don’t even remember my poor boy trying to wake me. Evie and I were sound asleep while my brave and beautiful boy fought back the fear that his mum wouldn’t wake up, all in the same week as being told his mum was so sick that there’s a chance that ‘the bad cells could win’. My heart breaks into a million more pieces.

I spent the rest of the day in pain, and devastation and on a radiation table amongst other things, crying tears that I couldn’t wipe away as you lie so still, arms above your head, unable to move to wipe the tears that you feel pouring down the sides of your face. Last time I lasted 6 weeks of radiation without a single tear on that table. But the stakes were different, we were always going to win, and now we have to accept the uncertainty that will surely linger for the rest of my life.

Today I’m out of the foetal position. Buoyed by a total stranger calling me to offer advice and well wishes, a mum who has her own breast cancer journey. By one of my closest friends taking me to treatment and cooking me a keto lunch. By another getting me out of bed yesterday, me and Evie fed and ready for the day. By the 502 people who have shared our post for help. By my beautiful, capable sister who never ceases to amaze me. And by my two divine babies who i’m off to beach with to dig our feet in the sand, have an ice cream and take a big calm breath and enjoy the moment.

XoX Lou

If you want to hear how Dom explained my new diagnosis to Noah, grab some tissues and read here

Elysia, her three girls and Evie Byrne eating ice creams at Balmoral beach

 

How to tell a five year old his mum has cancer, and it’s serious

Noah Byrne Having a Lemonade in Bali. Louise DeCelis Breast cancer Blog

Without anyone telling Noah that mummy was in a precarious situation, he knew something was up. Five-year-olds are way more clever than often credited. They might be doing simple sight-words and basic maths, but they know a hell of a lot.

In a meditation class at school last Tuesday, Noah (a good Catholic boy like his dad) put his tiny little hand in the air and asked; “can we pray for my mum because she’s still a little bit sick.” Just four days into Lou’s metastatic diagnosis, he was all over it, without receiving a single personal memo across his desk.

Noah Byrne Skiing in Thredbo

All the literature I perused had some common themes I found valuable:

  • Start with questions to see what they already know
  • Don’t overload the detail
  • Make sure they understand it’s nobody’s fault
  • Assure them they will be looked after no matter what
  • If they feel like you’re hiding something from them, it might bite you back
  • Talk to them at their comprehension/age level but don’t sugarcoat it
  • Love the hell out of your little stinky monkeys

I’d prepped all week, going through presentation deliveries and scenarios in my head, it felt like I was gearing up for corporate prezo to a full auditorium, not an adorable little five-year-old.

Daddy: “Noah, I heard that you prayed for mummy at school, what did you say?”
NoNo’s: “Just that my mummy was a little bit sick”
Daddy: “Do you know what’s wrong with mummy?”
NoNo’s: “Ummm, ask the Doctors, they will know”
Daddy: “Do you know what cancer is?”
Noah: “Cancer, how do you spell it dadda?”
Daddy: “You tell me how you spell it buddy”
NoNo’s: “is it with a K or a C”
Daddy: “C”
NoNo’s: “C.A.N.C.A
Daddy: “close, well done, C.A.N.C.E.R.”

Noah-Byrne-Pre-school-OAC-2017-Louise-Decelis-blog

Being the wannabe scientist that he is, he steered the conversation deep into the biology.

With his enthusiastic animated face, eyes and motoring mouth wide open,  he’s onto something that the scientists aren’t. “Dadda, why don’t the good cells have fire, swords and laser beams to beat the bad cells! You know if Mumma learns karate then the good cells inside will learn to fight and kill the bad cells right?”

The conversation played out really well, I was very proud of his maturity, knowledge and interest. He did ask some questions that reluctantly had to be answered and while I prepared for them, I had to digest the cricket ball in my throat to respond as best I could.

NoNo’s: “What if the bad cells win Dadda?”
Dadda: “Well, your mummy, the doctors and I are doing everything we can so that the good cells win and I think we’ll win buddy. If the bad cells do win, well, then mummy could get very very sick.”
NoNo’s: “Could mummy die?”
Dadda: “That is a possibility beautiful (he’s not going to want me to call him beautiful in a few years time, I’m pretty sure of that). Noah, you know how you’ve ranked everyone in the family on who is going to die first? You know how you’re always telling me that NanNan is going to die first because she is nearly a hundred, and then Poppie will be next because he is like 70 and then grandpa and grandma………….all the way down to Georgie because she is a just a baby.” It doesn’t always happen that way, sometimes accidents happen, people get sick, even babies might die before NanNan.”

Dominic Byrne and Noah Playing With Paint

He was so brave. The conversation progressed. After some silence, the tears welled in his innocent ocean coloured eyes and he said:

“Dadda, I don’t want Mumma to die, how will I come home and tell her that I scored a goal in soccer today.” He had a little cry. I kept reassuring him that no matter what, he would always be loved and looked after, by mummy or daddy, nanna, poppie, grandma, grandpa, aunty-Leisy, uncle Jon, aunty Emma…….(I was rattling off all of his aunties and uncles when he was quick to interrupt)

“And my cousins and friends Dadda, they will look after me too!!.”

Noah had a dinner date with his Mumma that night at his favourite restaurant – Italian Pizza Kitchen. He raised the conversation with her on his own. “What’s your sickness called again, oh yeah, cancer, that’s it. Sometimes if the bad cells win mummy, you can die. If you die, who will be my mummy? How will you be my mum forever if you die? Your only 40, your not old enough to die.”

Lou answered all his questions like a trooper while forcibly pushing down her strict keto meal conversing intently while simultaneously dreaming of pizza and tiramisu. While her perfect creation sitting across the table, propped up like an adult, washed down his burger and fries with a lemonade, confidently telling her what’s what.

Noah slept in my spot that night, I surrendered upstairs so he could cuddle and protect his most favourite person in the whole wide world.

We love you Noah, more than your imaginative brain can comprehend.

Dominic Byrne with Noah when he was a fresh baby

I Want to Speak With ‘Triple Negative Metastatic Breast Cancer Patients’ That Have Responded To Treatment!

Anyone out there with triple negative, metastatic breast cancer that is doing well with treatment?

I am on a mission to find anyone that:

  1. Has been diagnosed with triple negative breast cancer
  2. They were treated with chemotherapy
  3. The chemotherapy didn’t work (cancer turned up somewhere else i.e metastatic)
  4. They are now responding positively to another/different treatment option (Traditional and/or Non-Traditional medicine)

I’m super keen to talk to you.

Dom