‘So be fierce – but kind’
FROM PAGE 36 AUGUST 24, 2022
Soaking up some winter sun, and (very) fresh mountain air, to weaponise today’s sixth big dose of chemotherapy.
I’m feeling very fortunate to be at the end of my first threemonth course of treatment and, so far, to really only be copping a face full of pimples as a side effect. Better to be red than dead, I reckon!
How good are doctors and nurses though? Incredible.
AUGUST 25, 2022
Alastair Clarkson put it so eloquently when we spoke over lunch recently and he said “if you’ve never experienced real hardship in your life, get ready. Because it’s coming. At some stage, it comes for all of us”.
It hit home. Hard.
And, after reflecting on that a lot over the last few weeks, what I will add is that, when it does, we must remind ourselves of this: that good fortune favours the brave. Always.
So, be kind; but be fierce.
SEPTEMBER 6, 2022
ROUND ONE WON
Tomorrow marks three months since I was diagnosed with Stage Four cancer. It feels a momentous day and one that demands reflection on what has been an extraordinary time in my life.
I’m most thankful just to be alive at all. Seeing this day was no sure thing twelve short weeks ago; and the odds of being in the relatively good shape I feel like I’m in now were pretty low too. That moves me to feel a deep sense of gratitude for the efforts of my doctors and good early results as well as an overwhelming sense of good fortune to have so far been spared any serious side effects of chemotherapy.
I’ve learned that cancer steals the future but it gives you back the present. For me – a thinker; a planner; and a strategist – that really takes some getting used to on both a personal and a professional level. And it’s sometimes hard to reconcile the need to keep positive and hopeful in the fight for a future with the reality of needing to focus on the present.
But I’m grateful that that same shift in perspective has already given me and my family moments and experiences which we would never have otherwise shared. I’ve learned, often begrudgingly, to say yes to good things and to accept the generosity of others.
The generosity of others: the most remarkable and moving part of this whole experience. From Sam and the kids, to our extended family, our friends, our business partners and colleagues, and all the way to the enormous community of people across the many spheres of our life who have been so generous in their love and support – what you have done for me and my family has been truly astonishing. Although I’ve felt entirely undeserving of it all, I will remain forever grateful for it as well as for the privilege of experiencing it. There is no doubt in my mind that it has played a huge part in my good progress to date. My family and I will never, ever forget it. It is the reason that, despite the seriousness of my situation, I have spent each and every day of these past three months feeling lucky. Outrageously lucky.
OCTOBER 26 2022
Game Day: staring down Chemo Round
10.
Today clocks up over 500 hours of chemotherapy since the middle of June.
Explains those few hints of grey that are starting to peek through …
If it’s all going to fall out, this is the week apparently. So this one’s for posterity!
NOVEMBER 3, 2022
The ultimate juxtaposition –
I’ve never felt more vulnerable or felt stronger.
I’ve never been more sick or felt healthier and more resilient.
I’ve never felt more singularly responsible to fight and so widely and lovingly supported.
I’ve never had less to do and more to accomplish.
And I’ve never felt so aware of my mortality or so determined to live.
This thing is some ride. And one hell of a teacher …
NOVEMBER 8, 2022
Today marks five months since I sat in my doctor’s office and wondered why he was fighting back tears as he turned around and sat down. A reassuring mix of professional and personable, both he and his young family are a similar age as me and mine. I remember, vividly, him composing himself and stepping us calmly through my pretty dire situation.
Cancer. Advanced cancer. Lymphangitic carcinomatosis. Stage four.
Incurable.
In that surreal moment, I recall feeling a deep sense of admiration and respect for what doctors do, especially in those most harrowing moments. It was the same feeling I remember being overwhelmed by a decade ago as I sat with our days-old boys on my bare chest in the Neonatal Intensive Care Unit and watched as the doctors and nurses calmly went about their incredible work.
Maybe I’m biased because I come from the world of professional services but the respect, admiration and gratitude that I have for those looking after me is immense. Many of us work in high-pressure environments which demand high performance, and results, relentlessly. Some of us thrive on that pressure and seek it out, knowing that the satisfaction of contributing, delivering results and making a difference is so rewarding. But we’re never dealing with a matter of life or death. We’re never having to calmly sit with someone as their heart visibly breaks under the weight of a terminal diagnosis. Never have to find the right balance between being a comforting reassurance and a pragmatic Adviser as lives are turned upside down in an instant. That’s why I’m so grateful to the team of doctors and nurses that have spent the last five months looking after me so well.
Right now, I feel like I’m in an intense arm wrestle with this thing. There are ordinary days and better days; and it can shift quickly. There are many reasons for optimism and hope as well as some which make me anxious. And, thankfully, there is the ever-present support – at home and everywhere. Literally everywhere I go. Thank you.
And, among all of that, there is coffee – great coffee – and the time and space to enjoy it while I reflect and recharge to keep fighting.
Chemo Round VI drops tomorrow. Let’s go!
NOVEMBER 23, 2022
Today sees the start of my twelfth cycle of chemotherapy. On three day treatments, including about seven hours here plugged in for intravenous infusion, each fortnight, that means I’ve spent an awful lot of 2022 sitting in this chair.
Chemotherapy is a strange experience. My appreciation of what it actually involves; the range of ways people approach it; the variability of the side effects people experience; and how and when it actually works was so poor prior to landing right in the middle of it. I’ve learned to be acutely aware that the overwhelmingly positive experience I’ve had - so far at least - is extraordinarily uncommon.
It sounds strange, and hopefully not ungracious, to say but I’ve come to actually look forward to it each fortnight. I’m conscious that’s much easier given my good fortune with side effects but also that chemotherapy is an ally - and a potent weapon of mass destruction. It feels good to get it on board and to keep fighting back. Hopefully, deep down inside this battered body of mine, it’s still doing what it’s meant to do. Time will tell.
It’s actually difficult, sitting here today, to contemplate finishing chemotherapy at some point. The prospect makes me a little anxious. Empty seats around here are a stark reminder - some seats are empty because the cards have fallen the right way for people. Others, sadly, are because they didn’t …
Either way, almost six months on, I’m so grateful to still be here and in the fight. And to have my family and so many wonderful people still bunkered down in my corner. Thank you.
Be kind; but be fierce.
DECEMBER 5, 2022
Today was a difficult day.
Following great early results from the six months of chemotherapy I started back in June, this morning my oncologist began our appointment with the news that we have a problem. It’s a terrible thing to hear. Last week’s PET scan shows that the chemotherapy is doing a little, but not a lot. And certainly not enough. It’s no longer holding back the spread of this insidious cancer with more now having returned in my lungs and bowel along with some new spots in my spine, pelvis and ribs. It’s basically everywhere. And, for today at least, it’s a heavy blow.
The cruellest thing is that this heartbreaking news hits while I actually feel really good – strong and positive; full of plucky optimism and fight while consciously trying always to keep myself realistic and pragmatic – preparing for the worst but hoping for the best. I am strong, both physically and mentally, but it’s days like today along this journey which feel like they shake my determination to the core. My prognosis remains serious. And alarmingly short if nothing changes. Soon.
So, this week I’ll do my thirteenth cycle of chemotherapy (hopefully it proves to be Lucky 13) before we leave chemotherapy as a treatment behind. I never expected I’d feel like this, but I’m disappointed to stop it and, strangely, chemotherapy is something that I’ll miss.
One of the positives of that difficult decision is that it allows us to shift my treatment to the world of emerging treatments and clinical trials and a greater degree of personalisation based on some detailed genomic testing of the cancer. The probability of success is narrowing sharply,
but it’s the next available option with the best prospects of success. Let’s hope there’s a needle or two in that haystack that the incredible cancer researchers around the world keep building and that, whatever this next chapter brings, it is kind to us all.
As always, it is the love and support of my family and so many friends and colleagues that carry me through days like today and steel me for the period ahead. It’s not all bad though — in fact, the next month or two promise to be some of the best of my thirtynine years …
Bring. It. On.
DECEMBER 15, 2022
The only thing I want for Christmas is to see pure joy on the faces of these four after everything they have done, and stoically endured, this year. Mission accomplished.
White Christmas incoming …
Thank you to everyone who has helped make this happen at outrageously short notice. Once again, we are moved with deep gratitude. You all know who you are.
DECEMBER 21, 2022
It’s nice to feel alive.
Today was meant to be the day I fronted up for my fourteenth and final cycle of chemotherapy. Instead, I’m sitting on the other side of the world, literally, and feeling the closest thing I’ve felt to myself in a very long time.
It’s a totally surreal feeling; equal parts exhilarating to be feeling so good and to have the chance to share this time with my family and also a little scary as we leave chemotherapy behind as the first line of treatment because it hasn’t done what it needed to do.
I’m struck by the reality that, as I sit here, I’ve never been so close to dying at the very same time as I feel as alive as I have in a very long time. Maybe even ever …
It’s a powerful feeling – having absolutely no certainty at all about what tomorrow holds but feeling so good, and so much like myself, right now. I guess it’s the feeling that others describe as truly living in the moment …
Whatever it is, it feels good. Really good. And like a precious gift to share with Sam and the kids.
I’m reminded that we’re only here because of the quiet assistance and encouragement of some wonderful friends. You all know who you are but I want you to know that you’ve achieved what you generously set out to do for us. Thank you. We are forever grateful.
The Christmas that we stole back for ourselves. And the merriest ever. Take that, 2022!
Wishing you all a happy and healthy Christmas from my family to yours.
May your hearts always be joyful and may your song always be sung …
Ms.xo
JANUARY 4, 2023
As the new year begins, I’m deep in uncharted waters and feeling all of the wild mix of emotions and symptoms that comes with being there.
2023 has been a mixed bag of good and tough days so far but I’m grateful to be living them out here and sharing them with my family.
It is only strengthening my resolve that, regardless of what might come this year, I am resolute in making this promise: If I can’t fly then I will run. If I can’t run then I will walk. And if I can’t walk then I will crawl. But I will keep fighting.
And we will keep moving forward. Happy new year! May 2023 be kind to all of us …
Ms.xo
JANUARY 6, 2023 DECEMBER 25, 2022
Sandon Beach. January 2022.
I can’t stop thinking about this day.
It was a year ago, almost to the day. A long, perfect day on a quiet beach, spent with great friends. I didn’t know it at the time, but it would be the last time that I felt good.
I felt incredible that day. And, quite unusually for me, I remember having the time and space to be aware of it there and then. Happy, healthy, relaxed - totally carefree - and excited for all the promise of a new year that was perfectly set to be one of the best.
Feeling like that again is something I will chase forever.
I hope it’s how you’re feeling today. If you are, soak it up. If you’re not, do what you need to do to find it.
It’s everything.
JANUARY 12, 2023
Facing the beast, unleashed.
After spending a very special time together bouncing around Europe and delighting in our first White Christmas, we snuck back into the country earlier this week. I held up pretty well for most of the trip but, in the last week, I started to really struggle with the return of a lot of coughing and breathlessness and, for the first time, intense pain. It was a difficult decision to come home but proved the right one.
The last week has been the hardest of my life. Physically and mentally. The unwelcome arrival of intense pain is unlike anything I’ve experienced. A number of the flights and train trips we did ended up feeling surreal they were that dominated by such powerful pain. It was a task well beyond the b-grade pain killers I could get my hands on overseas.
The mental challenge has also been immense. That’s because, for a number of reasons, doing this trip demanded doing absolutely no treatment. No chemotherapy. Nothing. Although it was a conscious and calculated decision to let the cancer run unchecked for those few weeks, unleashing that beast has been brutal. I’ve been able to feel it progress and win many of the days in this arm wrestle and it’s been sometimes shocking to experience just how quickly it can strike.
Despite all of that, I feel so lucky that my little family had the chance to experience that trip together. And I’m just bursting with pride and gratitude for these four wonderful humans. To see the blondies’ world just explode open in front of them, and watch them run head first into it, was a delight. As was just seeing them joyous – carefree and joyous – again after all of the heaviness they’ve borne over the last year.
And then there’s Sam. The most courageous, stoic, capable and loving mother who I watched lead our little tribe around some of the most beautiful parts of the world. Many of them her own favourites but, this time, having her wings clipped by the realities of caring for and accommodating me. It was sometimes hard, but always so beautiful, to see.
I’m home (but back in hospital) now. And it was all totally worth it.
Thank you to everyone who helped make it happen.
I am a very lucky man.
JANUARY 13, 2023
Risk. A beautiful life – well lived – is so much about how we approach risk. Personally and professionally. It was true when I was in good health and it’s proving just as true now. Maybe more than ever …
Stopping treatment, travelling to the other side of the world, and spending hours flying around in tubes of recycled air was always going to present some serious risks to me in my current condition. But I sat down and considered it carefully and I’m so glad that we pulled the trigger on setting off and living life instead of hiding at home. And, you know, I almost got away with it scot-free! Almost …
After a midnight admission to the Emergency Department on Wednesday night with some pretty acute breathlessness and real trouble getting enough oxygen through my lungs, I’m now confirmed to have picked up a dose of pneumonia in the later stages of our trip. That’s not a good situation for someone with lungs in the mess that mine are in so I’m up for another stay in hospital while I wrestle it away and get back to just having Stage IV cancer! I’m so relieved it’s a manageable case of pneumonia though and not the break-speed progress of the cancer through my lungs.
That prospect was a little terrifying … Next week, I’ll also be having radiation on a few of the cancer spots on my spine which, while heavy duty, will hopefully alleviate much of the pain that is now emanating from my spine across my body. Radiation is confronting – I’ve watched what it can do to others – but it needs to be done so here’s hoping I get lucky again …
And while that’s all going on, we’re coming into the final wait for the results of some detailed genomic testing on the cancer in my lungs which will determine the availability or otherwise of the next round of treatment. Bit on!
Among all of that, it feels good to be home among family, friends and my medical team. Really good. I know I can fight hard from here with you all in my corner. Thank you.
And because good fortune favours the brave …
Matthew Schneider was farewelled at a funeral service at The Apostolic Church of Queensland, Hatton Vale, on Thursday.