R U OK?

Three days ago I had a full blown panic attack in the middle of a crowded flight. Louise DeCelis. MTNBC. Are You Ok Day

Three days ago I had a full blown panic attack in the middle of a crowded flight, that had only just taken off, trolleys blocking both my ways out. I knew it was coming. It started with shortness of breath, a warm feeling crawling up all my limbs, nausea, shoes kicked off, sweating, panic, heart pounding and endless thoughts about how of course I was dying given my health and all the meds I am on. In that moment the panic is so real and you can’t escape it. And when you’re on a plane you can’t escape your situation so it’s multiplied. I’ve had two major ones before, one ending in an ambulance with my beautiful friend Ali looking after me. The other time Dom who always works me through it. Friday was my wonderful brother in law. All three of those people knew how to handle it because they knew my mental state. They knew I was in times of struggle and they made me feel like it was normal. It was OK. And as such my openness became my safety net.

On top of it, this time it was total strangers that also helped me, the hosties. (before Jon could even get to me) they reached out and asked me if I was ok. I explained that I needed help. They got me on oxygen, a seat with some space, a cup of ice and they were just so kind. Not judging me. Just genuinely concerned.

Friday also happened to be R U OK? day. A day of checking in on our loved ones, colleagues… or even strangers. And I wanted to say That One; it is perfectly ok to not be ok. People all around you are not ok. Two; it’s ok to be feeling great one day and not the next. I’m the perfect example. I go from 150% to 0 in a day and sometimes it takes a while to break through. And that’s ok. And Three; you don’t need to wait to be asked if you’re ok, it is perfectly ok to ask someone for help, or an ear, or some physical comfort. A hug. A hand held. My brother in law held my hand on that plane and it literally saved me. It comforted me without words and I knew I didn’t need to feel embarrassed or concerned about what other people thought. He was with me and he had my back.

R U OK? Louise DeCelis, MTNBC blog.

But I am good today, please don’t worry about me, this post is not for support. My openness has me covered with endless support. But do check in on your loved ones. And if you need help, even in the middle of a crowded aeroplane, reach out and ask someone. People want to help.

I hope you’re all ok this Sunday!! Big hugs 💖 #ivegotthis

Jon -McConkey And Louise DeCelis on The Gold Coast Queensland 2018. MTNBC Blog
J-Boy and Lou Lou on the GC

Evie Harper Byrne, So Much Character And A lot of Clanger

Evie Byrne has some clangers - Louise DeCelis Cancer Blog

A little bit of humour leading into the weekend.

Lou had a week to herself in Cleanland (Queensland), relaxing and preparing for the next phase of treatment. She’s feeling tip-top so, why not a little laugh.

Evie Pops loves a mashup. She has an amazing, un-deliberate ability to mash together not only words but multiple songs or nursery rhymes. If it was intentional, she’d be a hip-hop artist, at three.

It’s an ongoing source of micro entertainment, something to increase your daily smile numbers, which is always a good thing.

Evie’s own language starts with mispronounced single words, and she has some clangers. Here are some examples that are currently part of her daily rhetoric. Enjoy:

Bedtime daddy, time to put my tappie on.
*Nappie

(Evie jumps in the spa, holds eyes) Ouch, my eyes are stinking.
*Stinging

(Opens fridge) I want bizzy water.
*Fizzy

Not just a little bit, I want auvalit.
*All of it

Bibix for breakfast mummy
*Weetbix

Can we go to Aunty Eggs house so I can see Leck Leck
*Aunty Meg
*Lecksie

Dad, put Peanut Rabbit on Neckclicks
*Peter Rabbit
*Netflix

Mumma, did you get me a cresent when you were in Cleans Land?
*Present
*Queensland

Look, be careful, a spiderwent!
*Spiderweb

When I finish dinner can we have serdert?
*Desert

Well lactually!
*Actually

Don’t forget my pacpac
*backpack

Putt my dolly in the cram and let’s go the claygrown for Henry’s birsday
*Pram
*PlayGround
*Birsday

I might wear my pretty pink gress and put my lacelett on.
*Dress
*Bracelet

We love our little princess poppa. How could you not? Anyway, I’m off to watch Sleeping Mooty (*Beauty) with this funny little munchkin.

Dom

Evie in a swimming pool at Byron Bay, Elements

Today Australia Has A New PM, Who Gives a $*#! When Noah is Kicking Arse

Louise DeCelis and Noah Byrne, Noah receiving the kindergarten blue award.

I didn’t know it was possible to be so proud of a five-year-olds achievement.

Today Noah was presented, in front of his whole school, the Kindergarten Blue Award.

Days like this make you feel like a million dollars. Noah, I honestly don’t care what profession you choose, what sport you play, what social or sexual preferences you decide. As long as you care about others and try your absolute best, you will always be a winner.

Noah Byrne getting the Kindergarten Blue award

His teacher said it best: “Noah, you are wonderful. Thank you for adding positivity, happiness and joy to KB. You consistently follow the school rules and display great manners every day. Your kind caring nature makes you a fantastic team player and a beautiful friend. You make sure everyone is included and always help out if a friend is in need. KB love to hear about your amazing adventures on the weekend, whether it be whale watching or making bonfires. Your bright smile lights up our classroom every day and we are so lucky to have you in KB. Thank you for being you, Noah Byrne. ”

Dom
PS: I would prefer you ski over snowboard but I will learn to board if that’s your choice – ha…..

Dominic Byrne with Noah Byrne at Sacret heart getting the kindergarten blue award

 

A Compliment For Louise

So yesterday at our Immunotherapy kick-off meeting,  Professor Kefford gave Lou a quality compliment. Not bad coming from someone who has been working with cancer and treating cancer patients with chemotherapy, radiation and Immunotherapy, from before Lou was born.

“I’ve been doing this job for forty years and haven’t seen anyone that looks as good as you do for what you’ve had.”

Never Ever Give Up, Never

Immunotherapy cancer fight for TNBC Louise DeCelis

I thought I’d share a personal email I sent Lou at the beginning of this cancer journey. Umm yep, I send my wife emails that are non-work/admin related. Somehow my keyboard knows what to say when my mouth doesn’t.  If it wasn’t for modern comm’s technology (SMS, email, social etc) I may well be classified as a mute by now.

Anyways, we’re staring down the barrel of another battle in the war, the enemy has more artillery and we are on the backfoot but the fight needs to be unwavering.


EMAIL

12th of July 2017

Lou,

At school, we wrote letters to each other before big games, races or events, we wrote letters to each other even when we lived in the same room. It was all about preparation, support, confidence and motivation. We did it at the start of the season, before big games and grand finals and when things weren’t going to plan, the reason we did this is is because success begins in the mind. If you believe that you can do something, you can do it. You must believe in it one hundred per cent. What you believe yourself to be, you are. Your self-image prescribes the limits for the accomplishment of your goals. It prescribes the “area of the possible” for you.

If you envisage successful milestones along the journey, the goals become easier to obtain, in saying that it’s never easy. Successful milestones come with a ridiculous amount of pain, hardship and suffering. Winners fight harder than the opposition, dig deeper, accept more pain and even smile in the face of such a challenge or adversity.

You’ve handled the first ten days like a champion, the mental preparation has been on-song, but the game starts today. There are six games (treatments) and the first game always sets the foundation for the next. Each game determines what changes need to be made, how prepared you really are and how tough the opposition is going to be, along with what strategy is needed for the next. In this instance, the competition doesn’t get any tougher, because the competition is a disease in your own body, and to win, you have to fight.

This is a fight. When a fighter gets boxed into the corner and is on the ropes, the only way out is to come out of the corner swinging. Over the course of a boxing match you may find yourself on the canvas, out of breath and utterly fatigued but if you keep getting to your feet and you keep punching, you will be standing when the last round dings, and if you punched harder than the competition and dodged the onslaught as best as possible, and you never gave up, then you win.

It’s one game at a time. Compartmentalise the small things (unpackage them and deal with them later) and play what is right in front of you, play the milestone staring you in the face. Losing your hair, feeling weak, getting a puffy face and looking like shit, it’s all temporary and insignificant. Losing a titty is also insignificant in the scheme of things too, who cares, no one. Deal with all those setbacks when its time, deal with them one by one as the hurdles appear in your stride.

The Tour de France is multiple stages, climbing Everest is four camps and many ups and downs, a fight is multiple rounds, a competition is many games, a marathon is many steps, a gold medal is many races and your treatment is currently six sessions. You only have to win today’s game, recover from it and prepare for the next.

Good luck. Stay positive. I am proud of you. You’re a great role model, not just for Noah and Evie but anyone that is dealt an unwanted and unwarranted set of cards.

Punch on.

xxx


Nothing changes. The ref has rung the bell, it’s simply another fight. Bring on Immunotherapy, do your best to win, never give up, it’s not even an option. If we go down, we fight again.

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

So What Does The Last Seven Days Look Like?

Louise Decelis and Noah Byrne smiling for a selfie

It’s been seven days since Lou’s oncologist dropped the mother of all bombs on our lives. Yeah, we’d been living with cancer for over a year. Yeah, Lou had been brutalised with 14 months of barbaric treatment. Yeah, it disrupted our lives as we ran the cancer gauntlet while trying to keep some family structure. But yeah, “we’d be right mate.” We were always going to come out the other end, bruised but better for it, challenged but successful, flogged but winners. Not this time. By any means, don’t count us out, another game starts and we’re preparing for all-out war. But we lost the opening battles and the odds are tipped against us.

So what does the last seven days look like? Well, I hired a lifeguard for the home as I was worried the tears were going to push the water level above the kids wading height. Family, friends, big grown men, rugby players that were on-field enforces, country boys with calloused hands and stoic hearts, all reduced to tears. After three days of essentially mourning, we sprang back into action. Since Tuesday we’ve met with two cancer professors, three oncologists, a naturopath and several doctors. Our calendar is just as populated this coming week.

A massive thank you to those that made calls and opened doors. Peoples prompt response to just make shit happen has been remarkable. Thank you for the love and thank you for the tears, all shed for Lou. Tears of empathy, tears of sorrow, tears of anger, tears of gut-wrenching pain. Thank you for your unwavering support. I echo Lou’s last social post that the love expressed, both physical and virtual, has supported her limp and exhausted body. It’s propping her up so she can stand on her own two feet again.

I’m a fairly private person. My social media posts are nothing but an embellished snapshot of the good times. Motorbikes, skiing, holidays and a plethora of proud parent snaps of the two best kids on earth. The best kids in my biased eyes anyway. Lou has let it all hang out over the past year, it’s motivated me to keep the transparency moving and contribute, especially when she can’t. So I’ve started this blog, I have no idea where it will end up. Perhaps a detailed narrative of the next twelve months, maybe some preserved words for Noah and Evie or some motivation for the next cancer number thrown to the wolves. Maybe just a post or two that becomes nothing but forgotten pages buried deep in Google’s servers.

Apart from my two previous updates about Lou, you won’t find any emotional words from me online. I’ve never displayed affection publicly, it’s been my preference to do this in the comfort of my own home, and perhaps more through actions than words. For those close to me you are well aware I am a man of minimal verbal dialogue. Often zero words in a social arrangement (I don’t apologise). So this public journey will be interesting, therapeutic – hopefully, and maybe even uncomfortable for someone aloof like myself. However, I’ll dabble in taking you for a ride on the cancer rollercoaster. Hopefully, Lou will do most of the posting.

I’ve got a big day today. I’m going to tell my beautiful boy, the most sensitive, emotionally connected five-year-old on the planet, about the current situation that is. I think I might do it at the BMX track.

Dom