Blog – but from the start

Content warning: Gross stuff ahead.

I’ve been tossing up whether to post this one. It’s possibly too much, even for me. But I’ve consulted some trusted advisors and they agree that if I’m going to tell my story, I should probably try and keep it as real as possible. And this is as real as it gets.

My arsehole.

My arsehole has had a visitor over the last one and a half weeks. Hector the Haemorrhoid. I didn’t even need to spell check that. I’ve googled that word at least forty times over the last seven days and the only thing that comes close in spelling is ‘haemorrhage’.

As an explanation for new readers, there are already a couple of characters in my story. In brief, Alan, the bowel tumour who set up an annexe in my liver, and Karen, the sneaky breast tumour who seems to be keeping a low enough profile for now.

Hector arrived post chemo and, to be fair, I wasn’t that surprised by his unwelcome entrance into the narrative. Chemotherapy treatment for colorectal cancer involves unavoidably riding a predictably uncertain wave of constipation and diarrhoea (yep, I can spell that one too). No amount of fibre is going to combat the concrete binding effects of anti-nausea and steroidal medication taken on the day of infusion. And no amount of gastro-stop is going to avoid the ring-stinging insistent hourly purging of one’s digestive tract. I’m sure I almost lost an internal organ down the bowl one day.

If one was to write the perfect recipe for conjuring a haemorrhoid it would involve either weighing down the internal organs with a three and a half kilo foetus or completely stripping the digestive tract of its ability to function by applying cell killing chemicals directly into the bloodstream. Insert the need to strain somewhat to shift said concrete in the bowel, and finally, add a dash of acidic diarrhoea to inflame the membranes. As a consequence, one must tread the potentially catastrophic pathway between laxative and loperamide in an attempt to manage all of the above.

Needless to say, I have failed. My bowels have failed. My patience has failed. And for the past 8 days I have had a large, seedless red grape, clinging and screaming loudly, on my arsehole. The pain is at once immediate, intensely unbearable, and for obvious reasons, unspeakable. Has the shame of its appearance stopped me from telling everyone about it? Clearly not.

“Hi Dad. How was your trip?…Yeah, I’m ok…yeah…I have a haemorrhoid…yeah, yeah, it hurts a lot…”

The worst decision I made was to attend yoga. Apparently, coming up to stand from a seated prayer position is equivalent to taking one’s newly acquired anal passenger and strangling it into a firm, aggressive headlock. I may as well have ridden a fucking horse.

So how is Hector travelling now? Well you’ll be pleased to learn that treatment for haemorrhoids hasn’t really changed in fifty fucking years and there’s no convincing a GP to stun-gun the thing into submission. Ointment. Fibre (fuck off with this please, on behalf of all the cancer folk, your fibre shit is useless in our world). Ice. Side-lying. Painkillers. The end. I am finally seeing some progress. I seem to have begun to whip Hector into submission.

And I have to go to chemo tomorrow. To start it all again. So I’ve decided I’m going to ask to forego the anti-nausea super tablet this time. I’d actually rather vomit for two days than go through the past week again. (Prediction: I will take this back after two hours of vomiting. I am a terrible spewer. Overly loud. Complainy.)

I’m sorry for those of you I have disgusted with this post. For those of you who have been through this, I see you and your haemorrhoids and I feel nothing but admiration at your ability to not publicly complain about this most humiliating of afflictions.

So this post is just more support for the “Cancer sucks” stance. Luckily, on the upside, it’s super glamorous and sexy.

PS. Hi Magro. I love you and your perfectly functioning arsehole. And I know you love me despite my haemorrhoids. Let’s get married in two weeks while this is still a thing.

PPS. At one stage I wrapped a Calippo ice-block in a paper towel and shoved it between my butt cheeks. The foil lid exploded on my numb ass and I sat oblivious in melting raspberry ice-block for twenty minutes before realising.

PPS. Ok, look. Fibre is important. Even if, and possibly especially if, you have cancer. It just sometimes isn’t enough.

I overheard some do-gooder on the television the other night describing her cancer journey (yes, she used that word…maybe that’s what got my attention and my back up) as a ‘joy’. She sees her work in advocacy and health promotion as giving meaning to her cancer and therefore awarding her a joyful life. And on this I’d like to call BULLSHIT!! What a load of crap. As if. This cancery life is many things and sometimes joy gets involved but I’m yet to see a Cancer Council pamphlet with the title “Welcome to your joyful cancer life!” on the cover.

But I will say this…again. There are some perks. I don’t want to use them all up in one post so I’ll focus on the one I’ve been most recently pondering.

Medically unquestioned access to sedatives.

But really this…

When people know someone has Stage 4 Cancer they know it’s serious and the first thing that comes into their minds is a question about how long that person has left to live. (Stage 4 actually means that your cancer is aggressive and has metastasised to other organs which is serious but with effective treatment, the person can live for some time.) But the question is a natural one and one I have wondered about myself. No, I have never asked Dr Duenna for a prognosis…that’s my practical self leading the charge there. I don’t see how it would help me to know, because I suspect she can’t actually know, and I think she would probably tell me that too but instead might give me a range of months and years and that would change things for me in a way I don’t think would be productive.

Nevertheless, we all know I’m pretty sick. In a healthy looking way.

So this, I suspect, has lead some of you…no…many of you, to reach out to me and tell me about me. Never in my life, has my life been so affirmed. I have been told precious things I never knew about myself that you have held inside yourselves for sometimes years and years. I have been told how loved I am so many times I can be nothing but sure that it is true and widely felt. Some of you have written it in cards. Some of you have written it in the comments below. In hand written notes. In messages. On Instagram. And some of you have bravely faced me and told me directly in your own, instantly thought and beautifully articulated ways, what it is that I mean to you.

Disclaimer: Not one of you have ever suggested I am perfect in every way. Obviously an oversight on ALL of your behalves.

But here, I think, is the take away. Whilst this has been the absolute far and away BEST thing about having cancer, you shouldn’t need to have a terminal illness to hear and read this stuff about yourself. So here’s the challenge folks…

Say it now.

I never used to do it either!!

But you can tell friends and family exactly what they mean to you right now. Even while they are leaving cupboard doors open. Even when they haven’t finished vacuuming properly. Even if they keep talking incessantly and don’t seem to really care for the ideas of others. Even if they argue with you about stupid stuff and put being right above being kind. Because I did, and still do, ALL of these things. And even with all of my annoying habits and traits, people still love me. I know because they have told me.

But let’s be honest. It’s just a bit awkward if there’s no pending mortality issue. Or maybe we just don’t think to do it enough. Or maybe we are a bit selective about who we affirm. I’m trying myself to be better at taking the plunge. Here are some tips:

  1. When writing gift cards, take the opportunity to thank that person for just one quality they have that you admire and that adds to your life. For example, “Happy Birthday, Ian! Thanks for always taking the bins out and picking up the dog shit. I hate both of these jobs and I know you do too and I appreciate you for doing them. You do so many things quietly for others. So many.”
  2. Scroll through your phone, find a friend or a family member, and send them a quick message to say one or two things you love about them. “Hi Cousin Jen. A bit random, but I just wanted to know that when we catch up I always feel like you bring something great to the table. I feel lifted when we see each other. You have great energy.” OR “Jodie, you have the best taste (and museum worthy collection!) in shoes and I always think of you when I’m buying them. But more importantly, your style and sense of colour has always inspired me.”
  3. When you like someone’s post on Insta stories, take two minutes to DM (Boomer translation: direct message) them as to what it was you liked about it. “Linda, you and Nigel seem to have figured out how to enjoy everything about travel and the outback whilst still really loving each other. It’s all over your faces.)
  4. Maybe send an email. “Dear Mish, if food is your love language, I will never be hungry. Your cooking nurtures people and brings them together and I wish everyone could taste what you cook. It is one of my true pleasures.”
  5. Find any way, any way, you can to let someone know they are loved and appreciated. Like this, “Sue, in the afternoons when I feel at my sickest and I wrap myself up in your beautiful hand made quilts, I feel all the love from your hands and your heart in every square of fabric. And it surrounds me with healing energy.”
  6. Or just tell them to their face, “Mum, when you put your arm around me and sat with me and told me you understood why I was scared, it was perfect and the best mum you could have been for me in that moment.” OR “Dad, I love you. We are good, you and I. We are really good.”

I’m not telling you to get off your phones. I’m telling you to get on your phones. Message someone or tell someone or email someone immediately. Because you have no idea about the impact it will have. For them. For you. For us all.

Say it now.

Act One

Today I am going to vacuum the house. It will be rewarding and will create a sense of achievement. I would like to do something small for the people who care for me on the daily. I will pop on a podcast and really immerse myself in the task. It will be an exercise in mindfulness. I will be distracted from my health for at least forty five minutes. Those shag rugs need a good going over thanks to our dog and that will get my heart rate up just enough to tip me into the medically recommended aerobic state to perfectly combat colorectal cancer proliferation.

Act Two

How the hell does the bag thingy attach to the inside of the drum? Hmm…this is trickier than I thought. Wait. Nope. Got it. Yep. Nailed it. Right. Power switch…is…quite low to the ground. No worries. I’ve got this. Ok. Start in the bathroom…least resistance. I’ll just stand here for a moment and get my breath…ok. How the hell does body hair get inside and behind the rolls of toilet paper?! (Drags everything out of the bathroom to ensure full floor coverage). Grunting. Heaving. Sighing. This is room one and I am basically dead. Is it just me or do pull along vacuum cleaners have the exact same propensity for getting stuck in a corner as Vegemite toast has for landing spread side down on the floor? Lots of yanking. Low level swearing. Gets. It. Done.

Right. Next. Parents room. The least they deserve is a vacc’d floor on return from the holiday house. Chuffed with self at satisfying vacuum lines created by my labour. “Look at this perfectly mown carpet with its parallel lines of detailed attention! Just something I threw into the morning routine because I’m a selfless, functioning human…” Fuck. The cord isn’t long enough to get around the other side of the bed without unplugging it from the low power switch out in the corridor which is about four metres away and may as well be a trek to base camp in Kathmandu. Fuckity fuck. Well…you can’t really see the dirty patch from the door because of the bed. It’ll be right. Ian barely walks over there anyway. Just into bed every night. It’ll be dark etc.

Act Three

Look. I know I’m only two rooms into this exercise but if I break it up into chunks throughout the day I’ve totally got this. I drag the vacuum back to our bedroom and the rate and intensity of swearing increases as the rolling barrel ploughs into every wall and corner on the way. Finally make it to the bedroom where the hose and its handle get stuck around the leg of a chair because I am now completely out of breath and puffing on hands and knees.

“FAAAAAAAAARRRRRRRRKKKKKKKKKK!!!!!!! FUCK THIS SHIT!!!!!!!” I yell at the vacuum cleaner. I dramatically pull myself into standing and then with the flair of a losing contestant on RuPaul’s Drag Race in the final week elimination, I quite literally throw myself face down onto the bed. I am a six foot two, forty-seven year old arsehole having an actual, two year old, supermarket aisle, horizontal, hysterical tantrum (except I choose a softer surface because…experience).

Snot and tears stream from my face as Mel runs into the room thinking that I have been seriously injured. I incoherently garble a self-pitying tirade which, could be briefly summarised by, “Poor Me. My Life is Very Hard and Nobody Understands”. I wail at one point that the vacuuming incident is a mere metaphor for my life with cancer and my dwindling independence. I’m not sure Mel stays for the whole thing because at one point she hands me a tissue and I’m pretty sure I had accidentally vacuumed them all out of the box a few minutes earlier. She even, quite cruelly, I maintain, mentions that she had noticed I’d “missed a few bits”.

Awkward and extended pause.

Now comes the laughter. The giggling at how I have created a theatrical event out of a household chore and the ridiculousness of my attempt to draw parallels between the entirety of my current life challenges and vacuuming the carpet. The amusement that I thought I was EVER going to be able to vacuum the house and the knowledge that EVERYONE ELSE already knew where this was headed.

Mel finishes the vacuuming. I dust half the house and throw out some old receipts. Magro makes us all a coffee. The End.

Recently I started seeing a psychologist. The first session was the equivalent of a sewerage truck opening its back end and letting a constant stream of shit into the waste facility. I dumped so much into the first forty minutes, she barely got a word in. What she actually said at the beginning was, “Tell me a little bit about yourself.” What she got was a verbal thesis on my experience of cancer, my fears, my thoughts on death and dying, my grief over lost experiences, my complaints about the discomfort of treatment and my guilt about how this all impacts negatively on my relationships with others. All of this aided by an audio-visual demonstration of snot and tears.

Look. I needed to get a few things off my chest.

The next session was more productive. She began a discussion about how I would like to live. Tricky bitch. I see what she did there and I approve.

She asked me to think about the value that I would like to drive the way I live. I challenge you to think about this for yourself, even if you don’t have an incurable medical condition. Maybe its joy, maybe its freedom, perhaps reflection, care, thoughtfulness, intensity, adventure, optimism…

For me it is connection. I want the time that I have with the people that I love to have purpose and the purpose is, to deepen, strengthen and validate the connection we share. I want everyone I love to know that I love them and that I am witness to their lives as they are to mine. I want to be more fully present when we are together and the thing that I am working on right now is simply having better conversations with people.

I have spent much of my life being excited to share my thoughts on everything. Shamefully, this has been what I thought good conversation looked like. Me talking. Others being entertained or (fake) fascinated. It’s not new knowledge to me that I am an over-talker and a less proficient listener. It’s just that I’ve been talking about being better at listening without doing much about it.

Now I have an urgent and genuine ‘WHY’.

I need to listen and ask questions that reflect my curiosity about that person and how they think and feel because for us to feel connected, they need to feel seen. For us to feel connected, I need to feel that I gave enough in the conversation and that giving isn’t talking. It’s actually asking. And then listening to understand.

I am fully aware that some of you are reading this now and thinking I still have a long way to go. You’re right. I suck a lot of the time. I talk over the top of you. I lose focus. I get defensive. I argue. I correct you. I finish your sentences or worse still, paraphrase my complete misinterpretation of what you have been saying. But this is my project and if I write it down, perhaps you will help keep me accountable.

It’s the day before treatment and all through the house, no-one should speak of it it, not even my spouse (to be). We all know that this topic is off limits until I start the active complaining stage. Until now I’ve been in the active denial stage.

It’s been almost three months since my last chemo infusion and a lot has happened in that time. For my liver. For my body. But not for my bowel cancer. Not a thing has been done about my bowel cancer in three months and I am increasingly aware that this now needs to be addressed. Sidenote: everyone needs a break from chemo at some stage. It is essential for both physical and mental recovery.

I’ve written and spoken so much about the bitter pill that is chemotherapy that it almost feels like straight-up whining. I keep coming back to the reconciliation of its cancer killingness against its poisonous nature. Don’t even get me started on the possibility of it no longer being able to kill the cancer. We’ve been down that path before and the concept of weeks of shitty treatment for no gain whatsoever just seems like unintentional cruelty.

A beautiful friend died last week. Out of the blue, she is gone. She was kind, generous, and full of love for her friends and family. She was one of the first people to learn of my diagnosis and has since described herself as my “loudest cheerleader”. We had spoken openly about my fears and treatment in such a way that would see us both tearful by the end of the conversation. It breaks my heart to think about that now. How naive we can be about these short lives we live.

Every bone in my body is screaming at me to avoid that fucking chair and drip tomorrow morning. But I will harness my friend’s silent cheers and get my sorry arse there tomorrow: rain, hail or vomit. I will turn up for treatment tomorrow because she didn’t even get the opportunity. And I will try and show up with grace and acceptance because it makes me feel resilient and empowered to do so.

“Do not judge me by my successes, judge me by how many times I fell down and got back up again.” Nelson Mandela

Dear Medical Team

I’m fully aware that every time we meet, I’m crying. I’m either crying because you’ve given me bad news, crying because you’ve given me no news, crying because you’re about to stick that shit in my arm again, crying because I’m lying on a steel bed while you fill my organs with a small dose of Chernobyl or crying because you’ve said something very kind and thoughtful. Sometimes I’m crying on the way into the hospital. Sometimes first thing in the morning on chemo day or scan day or results day. Sometimes I’m crying in the waiting room trying to get it all out before I see you because I don’t want to be crying in front of you.

Because you’ll think I’m depressed. All this crying must mean I’m depressed, right? I can understand why you keep gently suggesting raising this with my GP. I understand that antidepressants are not off the cards at some stage in this shitshow. But right now, I promise, I’m not depressed. I am all shades of emotion at any given moment; including joyful, elated, angry, regretful, hopeful, hyperactive, silly and calm. Just not depressed.

But here’s why you think I might be…

Imagine the hospital is not, in fact, a hospital, but a small place on the side of the road. It’s a place where a really traumatic accident happened. And unfortunately, the person it involved has to walk past that spot, every day on their way to work. There is literally no other path that person can take. So every day, as they walk past that spot, they cry. Because crying feels like release and is something that can’t be held. Crying is the body bowing at the feet of Trauma; because Trauma must be acknowledged. Crying is my body’s way of reminding me that this is something I am not expected to bear without injury. And maybe crying is also a reminder to you that you should not be expected to witness it without injury.

I will be the first one to raise my hand and ask for antidepressants when this becomes a state from which I cannot mentally recover. I’m an advocate for any treatment that is tried and tested. I see this as a real possibility as the time between treatments shortens or the treatment possibilities become fewer. And yes, I am seeing a psychologist on Friday. There’s a lot on the agenda. I hope she’s had her Weetbix.

But seven days ago I dressed up in an eighties aerobics outfit and recorded myself dancing to one of Olivia Newton-John’s lesser known hits. I knew it would be ridiculous. I knew it would make me and everyone else laugh and feel joy. And it did.

I’m still able to generate my own laughter. The people around me help me to feel lifted. So far, my people, myself included, are my antidepressants.

Through social media I discovered a couple of women about my age who share my diagnosis (The Stage 4 Literal Shitshow). Both of these two women were diagnosed earlier and are a little further down the ‘living with cancer’ pathway. Naturally my curiosity and need to find someone else in the same position drew me to deep-dive their instagram accounts.

Initially I was so relieved to see these two women living their best cancer lives, several years post-diagnosis. They seemed to be flourishing despite their illnesses and beyond that, had managed to find space and energy to become the poster women for bowel cancer.

Between them they: host a regular podcast about the experience of hospital patients, are in the process of writing their first book, make regular appearances on television to promote bowel cancer awareness, hold down paid employment, represent patients on various hospital committees as well applying to become a board member of the Cancer Council.

At first I just felt so impressed with these powerhouse women who do all of the things. Their commitment to patient advocacy is just incredible.

But then I started to wonder…what the hell am I doing with my time?? Why don’t I have the energy or the inclination to do any of this stuff?? Should I be making more of an effort? How do I do better at having cancer?!!

Chill, dickhead. Once again, you’ve silently entered yourself into a non-existent competition – The Cancer Olympics. And you’ve established that the non-existent rules mean that being solely responsible for bowel cancer publicity and improving patient care outcomes is the object of the event.

How many imaginary competitions do we subscribe to in our daily lives? Not just since having a chronic illness. Why are we so hard on ourselves? It’s not like I need to add pressure to this situation.

I’m good at other shit. I make people laugh. I write this hugely famous blog* that has almost hit double figure subscriptions. I can tell a good story. I can get stuff down off high shelves for old people at the supermarket. I learnt to become a better leader in my workplace. I am decisive when ordering at restaurants. At yoga, I have learnt to direct my breathing to different parts of my body. I can look in a fridge and pull together a decent meal from its contents. I can do that impressive card shuffling thing where you split the deck and then concertina the cards into each other. I write thoughtful messages on greeting cards. I notice other people’s qualities and try to remember to compliment them in a really specific way. I’m punctual. I’m honest and I’m real (to the point of others’ discomfort).

I admire these women. They are doing important work for which I am incredibly grateful.

I’m just a different brand of athlete in the Cancer Olympics. And I’m doing all right.

* a blog that even Bowel Cancer Australia won’t share due to its offensive name and sweary content – trust me, I’ve tagged them multiple times.

Right. Where were we? A few weeks ago I had a scan that showed further tumour growth in my liver. Surprise?! Not really. A cough reminiscent of the one I had pre-diagnosis had hinted to me that all was not rosy in liver land. The cough was a sign my liver was enlarged and pushing into my diaphragm.

You know how much I hate chemo, right? Well, imagine the surprise on the nurses faces when I walked through their door, straight from the oncologist with the bad news, bawling my eyes out and scaring all the new customers with my wailing, “IT’S NOT WORKING!!!!” I was quickly gathered up and hustled into a private room so they could hug me and unhook my port.

To think that the treatment I loathed and dreaded on this fortnightly ferris wheel of torture and respite hadn’t even made an impact left me raging. Overwhelmed. Hopeless. Defeated. Sorry for my sad, cancery self.

So when the SIRT treatment was offered, Magro and I turned towards the ‘something’ that was a ‘something’ that might possibly, most horrifically, one day, be a nothing left to do.

Basically, as some of you now know, SIRT treatment involves the implanting of millions of little radioactive beads (tiny things) into the blood vessels of your liver. The aim being to kill off as much cancer and as little healthy tissue as possible. Obviously there will be some fall out.

So cue me, a week later, sedated but awake as my groin is punctured and a tube is threaded through my body up into my liver and a virtual army of radioactive hell beings find their way into my system.

A few hours later and my body is screaming, “GET THE FUCK OUT OF ME!!!!”

Oh the pain. Oh the nausea. Oh the sweating.

One precautionary night in hospital turns into almost a week of trying to manage the pain, control my spiking temperatures, attempting to convince my body to release the poops which had taken up long term parking options in my lower intestine as a protest against the Endone, and trying to convince the nursing staff that my insane blood pressures weren’t that abnormal for me.

While many of you were (rightly) cheering the minions on to victory, I was willing them to kill each other off.

But here we are another week on and I am a million times better. I look ok again. I can sleep without pain killers. In fact, I haven’t had any in days. The nausea has abated. I’m crying with reduced frequency. I am almost back to normal. I still can’t breathe super well on standing or walking but that should improve.

Which reminds me of the human body’s incredible ability to heal. Even under the most insane of pressures. I mean, I still have a lot of cancer in me. But I was so ill, I sort of started to believe I wouldn’t feel better again. And yet, here I am.

Scan results today and the news wasn’t good. It must be the worst part of an oncologist’s job – giving bad news.

Whilst the bowel tumour hasn’t grown, there are more tumours in my liver.

The chemo is no longer working against Alan. It seems he sniffed it out and set about reinforcing his claim on one of my most important internal organs.

Despite preparing ourselves to receive the update, Magro and I both sat and cried in response. It feels completely defeating to know that the physical drain I’ve been putting my body through with each treatment hasn’t paid off. I can’t relay exactly how flattened we both were by this today. It doesn’t matter how much I try and ready myself for bad news, it remains a shock to my core and yet another chink in the trust I once had in my body.

What next?

A referral to a radiology team who focus on targeted therapy. It may involve surgery to insert radioactive beads into my liver. Mmmm….sounds like fun.

Dr Duenna discussing my case with her team of doctors from different specialties to consider other options.

And me? No chemo this week. The world’s shittiest silver lining.

Tonight I have no words, no energy, no space for conversation, no humour, no anything. I will take something to help me sleep and tomorrow I will start again. Like a ball that’s been slightly deflated, I’ll bounce, but just enough to get over the net.

Thank you, Magro, for walking this path with me.

And thank you to all of you who have been following my story via the blog. It helps me to process what is happening. It helps me to let everyone know what’s happening without having to have hundreds of individual conversations about my cancer. It helps me to read your messages of support. I read every one. Thank you.

I’ve been trying hard to take notice of the simple joys of life. It’s so easy to get bogged down in this ‘woe is me’ narrative in which I find myself.

And it doesn’t take much to start actively noticing the beautiful things around you. Often it’s things we can see but there’s also taste, smell, sound and all the other sensations.

Recent examples include:

  • The first sip of a really good coffee Magro brings me in bed every morning. He gets up in the cold and puts ten minutes of love into every cup. It is the best possible way to start the day – a gift from someone you love.
  • The smell of eucalyptus oil. It’s sprayed on all the yoga equipment after use and it has a way of transporting me to everything wholesome from my childhood. It reminds me of when I had a cold and Mum tucked a folded tissue sprinkled with a couple of drops of eucalyptus oil up my sleeve.
  • The sun on your back when its winter.
  • The way that everyone I’ve met and chatted at my yoga classes, remembers and uses my name to welcome and greet me every time. It is a deliberate noticing of others and the use of their name that is the very first step in making people feel seen. It takes effort and intent and I really appreciate it.
  • Margaritas. At once both salty and sour. My two favourite flavours.

But this post is about Jedd. A truly beautiful person and a much beloved family member, Jedd has Down Syndrome and is on the autism spectrum. He lives with his Mum, Dad and sister and he is living his best life. The love in this house is evident in every routine, meal, space, and conversation. Jedd is included in every way possible and you can tell he feels the love. An example:

Jedd signs and has some limited speech which he uses to communicate the basics and express his love for others. But let’s just say, he isn’t quite able to engage with you in an extended conversation about your day. Yet, at his birthday dinner on Tuesday night, he stood and gave a speech. His hand was on his heart, his smile was deeply embedded on his face and in his own, mostly indecipherable way, he thanked every person sitting around the table, using their names. He told his family he loved them. He told us he was happy.

But he didn’t need to add that last bit. Because I swear I’ve never seen more pure a joy than on the face of Jedd as the lights dimmed and we began to sing Happy Birthday. As his vanilla cake with sprinkles icing was placed upon the table in front of him, Jedd smiled the smile of someone who needed nothing more in the whole world. This was the face of happiness. From a cake. And a song. And being surrounded by his family.

And there it was. I didn’t even need to look for it. This was a lesson in love and joy and the simplicity of both should we accept that it can be that easy. Looking on Jedd in that moment was a reminder that beauty is everywhere. EVERYWHERE.

Yeah. Down there. Into the bowl of shame. Or if you are unlucky enough to have the most unreliable of digestive systems, you might think of it as the bowl of pride. Look at what you made! And if it rates well on the Boston stool chart (if you know…you know) you might just give yourself a little high five.

But if you look down and see blood alongside your furry floaters, it’s time to make an appointment to see your GP. If the blood is bright pinky red, it’s most likely haemorrhoids and not a big deal but NOT DEFINITIVELY! If the blood is dark red, you really need to get it checked out. I ignored this exact stuff for three weeks before my diagnosis. It’s Bowel Cancer Awareness Month and it’s my civic responsibility to insist you sort your literal shit out.

Which leads me to poo shame.

I used to joke with close friends that if I was to get cancer (this is actually true by the way…I have sick conversations with people close to me), it would most likely be the kind of cancer that is extremely embarrassing. Namely, anal cancer. (Sidebar: Farrah Fawcett is the most famous celebrity to have bravely named her anal cancer for what it was. Go Farrah!) My theory was that I have basically been treated for every embarrassing illness known to the medical community. I could have been on that ITV show Embarrassing Illnesses several times over. I was once taken via ambulance from work to hospital in agony with suspected appendicitis, only for the X-Rays to reveal I had “the most amount of impacted poo” the doctor had ever seen inside a living person. I’ve had so many urinary tract infections, now I have trimethoprim on repeat script and ready for action. (Calm down medical people…I always do a urine screen to check the bacteria etc etc…spoiler…E.Coli every time – and YES I wipe front to back…eye roll…sigh…)

So I sort of had an inkling that if cancer was coming my way, it would be in the less marketable form. Don’t get me wrong, your pink ribbon days and fun runs have done marvellous things for breast cancer research and I for one, am incredibly grateful.

But if colorectal cancer was an Olympic sport, it would be synchronised swimming. I mean, we all know it’s a sport and it looks quite hard to do, but the stands aren’t packed with people wearing brown once a year. Brown ribbon day would be a hard sell. Having said that, I wouldn’t mind donning a poo emoji t-shirt once a year for Bowel Cancer Awareness Week. On the back it would simply say, Everybody Poos. The actual logo is an apple. I don’t get it though. Something about a worm…and early detection…poo emoji would certainly get more clicks.

Now that I have bowel cancer I feel zero shame. In fact, my cancer is in the sigmoid colon which is almost the rectum which is a one way ticket to anal town. The truth is, cancer is cancer and there isn’t a good kind. I don’t even think about the poo shame anymore.

Dr Duenna actually told me the other day that many of her patients take pics of their toilet bowls to show her during consultations. That’s how desensitised we are to the poo shame. “Hey Doc, check this one out! Tapered ends and everything!”

The reality is that doctors have seen so much arse in their daily work, so many haemorrhoids, so many polyps, so much poo, that yours isn’t really that special. And once you’ve been seen by a gastroenterologist or proctologist for a colonoscopy, I mean, these people have literally dabbled in shit their entire specialised careers. My favourite of these is on Instagram as TheButtDoctor and I highly recommend following his account for a laugh and a read. He is the best at allaying your fears around poo shame and also teaching you stuff about your bowels.

And so…

Check your poo. Look for blood or changes in consistency.

Monitor your weight…if you’ve lost some for no reason…get checked out.

Speak to your GP about abdominal pain or unusual bloating or weird changes to your bowel habits.

If you have a family history of bowel cancer, insist on a colonoscopy.

Bowel cancer is treatable if detected early.

IN SUMMARY

If you avoid any of the above because you are embarrassed to speak to a doctor about your poo, remember…even Princess Kate lays cable every morning and it doesn’t smell like Chanel No. 5.

A few quick thoughts before I head off to chemo.

  1. Fuck this shit.
  2. I don’t want to.
  3. All of the above.

I’m in tears this morning at the thought of sitting in that (super comfortable) chair. I’ve been doing chemo for over seven months now in a relentless fortnightly cycle that quite literally keeps me alive. It keeps me alive whilst simultaneously giving the impression of slowly pulling my body apart, one membrane at a time.

Weird stuff starts to happen when you’ve been doing treatment for this long. Like Pavlov’s Dogs, one starts to respond before the needle has even gone in. My anxiety nausea started vaguely rocking my stomach yesterday and today my mouth is watering at the thought of the weirdness I’m about to experience.

Over the last few days more than twenty people have commented that I look good. Despite my hair being at that length our mums embraced in the eighties, I reckon they’re not lying. I look good…for having cancer. But in about eight hours time I am not going to be looking good. I’m going to be looking horizontal and I suspect large snot bubbles will develop as I cry myself into a deeper hole of self-pity.

My brand of resilience doesn’t look like someone putting on a brave face and showing up with a knowing smile on their face, grimly accepting all the harm is doing them good. My resilience looks like crying and being full of dread and worrying the port is going to get blocked again and trying to remember all the side effects I need to share with my oncologist and not flinching when they put the needles in and not clock watching as the hours tick by. These days its headphones on, blanket on, eye mask on and popping an Ativan to help me sleep through it. It’s two days with a pump coming out of my arm and into the belt around my waist and trying not to melt the connecting tube while I’m at the stove top. It’s losing my shit over dinner with friends in a crowded restaurant and telling them I’m not ready to die.

Two of my closest friends described me as a combination of dramatic and stoic. I fully understood the dramatic bit. I do love a bit of that. But I’d never thought of myself as stoic. But maybe I’d been thinking of stoic as the stiff jawed, back straight kind of emotionally blunted stoicism. I think my stoicism is the heart on the sleeve kind. I let everyone know how fucked up I feel about treatment, I let myself feel all the feelings, I cry during yoga, and then I SHOW UP AND GET THE FUCKING TREATMENT BECAUSE IT’S KEEPING ME ALIVE AND I HAVE NO CHOICE.

And then I feel like shit for four to five days. Less shit for another few days. Functional after that and then almost myself again on day 13. And then guess what…

It happened. I got Covid. I was incredibly lucky and experienced what can best be described as a bad cold. Honestly, I can’t describe the relief I feel about having faced it and been okay. I know this doesn’t mean I have unlimited immunity but it certainly has boosted my invisible forcefield of protection. The access to antiviral medication meant that the length of my positive testing status was significantly shortened so that my cancer treatment was uninterrupted.

I’d like to thank the academy. But more importantly I’d like to thank the four vaccinations I received, the mask wearers (no, not you people with it under your nose…I mean…just take the bloody thing off why don’t you?!!), my GP for monitoring and guiding my vaccination status, and my family and friends for putting up with my Covid anxiety and for taking my immuno-compromised status seriously.

Now….back to kicking Alan in the dick.

I’ve recently changed chemotherapy drugs. For your amusement or boredom (depending on your interest level) I have prepared a list of some of my new fandangled side effects:

  • Peripheral neuropathy: tingling/pins and needles/numbness in my fingers and toes, especially in response to touching anything cold. I actually throw a bag of frozen peas across the supermarket aisle the other day in response. I keep forgetting. It keeps happening.
  • Spasms in my salivary glands whenever I put any food in my mouth. Imagine sucking on a lemon and the drawing down feeling you get in the side of your mouth. Now multiply that by ten. It’s like my jaw is being extracted through my face. I keep forgetting. It keeps happening.
  • My voice has risen an octave but will gradually drop again over the next few days rendering me something close to a pre-pubescent boy mid sentence.
  • Oro-pharyngeal candidiasis: this one is a doozy and otherwise known as mouth thrush. It isn’t a new side-effect and I may have even mentioned it before but I thought I’d list it again because honestly, IT IS THE WORST. It makes everything taste disgusting and it covers my tongue in a delightful white film. Mmmm…lovely.

On the upside:

  • I am not in the foetal position in the bottom of the shower waiting for my next vomit like those chemo scenes in the movies.
  • My hair isn’t falling out anymore.
  • I’m slightly less fatigued on the new drug.

Now, off to the hospital to get Gwen, my chemo pump, disconnected. This is always a highlight of my fortnight. It’s a little Friday afternoon ritual of freedom.

Photo by Scott Webb on Pexels.com

This morning I woke to glorious sunshine pouring through our bedroom window. It might well be the first blue-skied day we have had in over a month. And in response, I became a delusional person.

Having no appointments or activities planned for the day I realised it was a perfect opportunity to rally the troop (Mum) and head to the Sydney Royal Easter Show. Jules was enthusiastic in response to the suggestion having not attended in about the same amount of time it takes to remember why you don’t go.

For those of you who are unfamiliar with the Easter Show, it is an annual event originally designed to bring the best of agriculture to the city and to provide a central social event for farmers looking to get on the turps whilst potentially taking home a few prizes for their agrarian mastery. These days the Easter Show is a commercialised cacophony of overpriced showbags, dodgy fairground rides, disgusting fast food (see: Dagwood Dog) with a few rural teasers thrown in to keep things ‘authentic’. I swear those woodchoppers were wearing thongs back in the eighties. The Easter Show is basically a childhood delight and both a financial and sensory form of torture for parents. There is literally NO REASON a sane, childless adult would consider attending unless they were being paid to do so as some sort of escort/carer (see: previous career).

Google “Superspreader Events” and I suggest the Easter Show would rank a close third behind Buddy Franklin’s 1000th goal for the Sydney Swans and last weekend’s Formula 1 Grand Prix.

Having considered none of this, it was with sound mind and a full understanding of the potential risk factors that we boarded the bus to Olympic Park.

The bus filled quickly as I attempted to further seal the N95 mask around my mouth and nose. The smell of teenage excitement and Lynx Jungle body spray will forever remind me of this near-death experience.

Sensing my rising panic, Mum gently patted my arm, reassuring me that we were almost there.

It was at about fuck-this-shit o’clock that the full realisation of my ridiculous idea dawned. We were heading full speed into a hotbed of pandemic pandemonium. As Olympic Park in all its glory came fully into view my body and my mind chorused: “Kristie, you are an absolute deadset idiot. This is not for you. You have cancer. Go directly to home. Do not pass go. Do not collect your showbags.”

What appeared to be a 50 metre wide column of approximately 15000 people was pulsing towards and beyond the entrance of the show ground.

NOPE. NOPE. NOPE.

Cue Abdul in an air-conditioned, sanity controlled vehicle to Cinderella us away from the horrific scene back to our car many kilometres away and the sanctuary of a suburban shopping centre where we caffeinated me out of my shame-spiral.

I have made some dumb decisions in my life. This was a particularly expensive one. The tickets and the Uber ride…

I have made some great decisions in my life. Turning around and coming home again despite the waste was one of them.

I have been careful and picky about socialising in the time of a pandemic. I have said no to invitations I’ve found too risky and I would understand if those who had sought to include me on these occasions would now question my integrity. I have even avoided family at times when things have been very risky. I was right to do so and my actions today were just…weird. I guess I just miss full-blown life.

In summary, if you are considering attending the Sydney Royal Easter Show in the next couple of weeks and you, too are immuno-compromised, or even if you are just a healthy person who likes nice things and nice places, this event is not for you. If Covid had a perceptible smell it would be a combination of cow manure and deep fried food.

Are you a bit of a control freak? Do you like to be able to see all the cards in your hand wherever possible and potentially those of the person on either side of you? Do you feel safer knowing what’s on life’s table, even if it isn’t what you would choose? Do you like to control the controllable? Are you a list maker? Do you know what you’ll be having for dinner tonight? How about in three days time?

I never used to think of myself as someone who wanted control over all of life’s little parts. Organisation and structure have never been really my thing. I have tended to outsource those parts of my life to the Virgos in my world. But if I’m honest, I like to control certain things. I like to control conversations and awkward social situations. I like to arrive way too early at an airport because the thought of running to get to the gate is triggering. When I was teaching, I often couldn’t help myself but maintain control over where the lesson would go, even when my intention was to let the students’ curiosity guide the learning. Now that I think about it, control is something I have always craved.

I feel safe when I (at least) roughly know what’s happening in my life. That’s human, right?

So here are some innocently asked questions that I have been recently asked that have thrown me from my centre:

Do you think you and Magro will eventually move out of your parents’ place?

Will you ever return to Melbourne? Will you stay in Sydney?

Where is the first place you’ll travel overseas when it’s safe to do so?

Do you think you’ll teach again? What other work might you do?

Are you likely to lose your hair again?

What’s the long term plan?

What happens if you get Covid?

If you’d ask me any of these questions prior to my diagnosis I would have had at least some idea of my answers. Five year plan? Sure! Travel definitely on the cards – definitely for several weeks to Sicily, Sardinia and Malta. Will we return to Melbourne? Of course! Many of our family and friends are there and we love the city, if not its weather (although…Sydney…wtf lately). Will you teach again? Hmmm…maybe not teaching but I’m curious about where teaching might lead me. One day we’d like to live in another part of Australia…that was our plan.

So imagine yourself being unable to honestly answer any of those questions. The answer to ALL of these questions is, “I don’t know.” And it feels incredibly hopeless to answer that way.

Even if I do make up some kind of response, my inner voice is still waiving the “Ahem. You have really serious cancer” flag.

Sometimes it feels like cancer owns my future. Cancer will decide my one year, two year and if I’m lucky, an even longer term plan. Cancer has all of my cards in its hand and I have zero control over the game play.

So I look for little things I can control. And I control them. Here are some examples:

I can’t control whether my hair will fall out again but I can shave my head. I can colour my hair bright pink or purple. And I do.

I can’t seem to control my pelvic floor when I sneeze or cough and a little bit of wee comes out. I find this incredibly unfair given I have never even been pregnant. But I can make an appointment to see a physio who will hopefully help me to get that situation under control. I don’t even know if this is related to the bowel cancer but if it is, Alan, you really are a prick.

I can’t control how food tastes in my mouth. But I can prepare meals that look beautiful and smell delicious and I can watch the satisfied faces of my family as they eat the food I cook.

I can’t remember much of anything in terms of days, appointments and events but I am learning to prioritise this sort of organisation because it gives me purpose and boundaries and structure.

I can’t work but I can be productive. I find small ways to help others so I’m not always the one being helped.

I can’t know how sick I am going to feel each day but I can control the way I respond to that feeling. I can rest if I choose. I can also battle through and annoy everyone by complaining about how gross I feel.

I don’t know my future. I don’t even know if I will be alive in two years. But I can live hard and love well in the present and I can forgive myself when I don’t get those right either.

Since my last post was about the anxiety I felt around this week’s scan results, it seems only fair that I report back.

In summary (and I’m going to dot point this shit so as to not bore you or myself to death):

  • The tumour in my breast (Karen) remains unremarkable and hasn’t grown
  • The tumour in my colon (Alan) seems to have thinned slightly on the bowel wall
  • I have no new tumours in my body
  • The liver metastases (Alan’s weekender) show some increase in cancer activity – the ‘spots’ lit up more on this PET scan. This can indicate the cancer is no longer as sensitive to the chemo drug I am receiving.

In response we will be changing one of my drugs on the next cycle. Olaxiplatin will be added to the cocktail in place of Irinotecan.

How does this feel for me?

It’s interesting how we prepare ourselves for the worst of news and the best of news. I was a bit of a mess the morning before I received the results. Trying my best to Santosha the shit out of it but actually feeling terrified.

The actual appointment sort of felt like a bit of an anticlimax. I know that sounds weird. I received no terrible news and I was given no wonderful news. I sort of just sat there looking at Dr Duenna and basically shrugged my shoulders before trudging off to be once again hooked up to the chemo hills hoist.

Today I am as flat as a tack but otherwise ok. I slept a lot, exercised a little and ate some food. That is what I am capable of today. I accept that treatment continues and that without it I would get sicker. I continue to accept that my body is trying its best for me.

I reject the bowel that continues to produce the most disgusting farts and strangely not enough actual poo in the days following chemo. I embrace both the laughter and the repulsion that me writing about this stuff might ensue. I reject the disgusting taste in my mouth that lasts for at least a week. It’s oral thrush. Ladies, if you know, you know. Could there be anything more disgusting? Yes, there is. Anal warts. I don’t have those. Tick.

So this blog post is a bit of a shoulder shrug. An anticlimax. An information report of the dullest kind. Onwards we go.

In two and a half hours I will lie down for my first big PET scan since treatment started. This is the scan that will paint a picture of the inside of my body. The outcome of the invisible war that has been raging inside me will finally become known.

I had a similar scan about twelve weeks ago when treatment was in the early stages and it had looked promising. It gave us all a boost and helped me to feel like the treatment was working its toxic magic. It should give me confidence going into this scan.

And it does. But I woke up this morning in tears for the first time in a long time. And if I had to put words to the thoughts and feelings they would be: helplessness, a lack of control, fear and an awareness that the stakes couldn’t be higher. There has been no test that I have ever taken that is more important and there is literally nothing I can do to effect the outcome. That is why the phrase ‘finally lost their battle with cancer’ is so infuriating to anyone with cancer. There is no WAY to win at cancer.

I heard about Santosha recently. My yoga teacher introduced us to the term a few weeks back and I found its meaning to be strangely reassuring. At its simplest, Santosha means ‘contentment’. I know. It’s a stretch to believe I am going to find contentment in my current predicament. But there is something very therapeutic in the idea that striving in this particular context is pointless.

For me, it is the understanding that I am where I am, my body is where it is at and I choose to accept that for now, everything is as it should be. My body is doing its best to heal – I am content in this knowledge. I trust. I accept.

And whatever the outcome, that becomes the new point of acceptance. Of faith in my body, of trust in my medical team, and contentment in this beautiful life I am living.

Sound a bit fluffy? It might to you. It probably would have to me a few months ago. But now I find it the most powerful idea I’ve discovered since this shitshow began.

So whilst I woke up scared and crying, I try to focus on my breath which is always here, keeping me alive. A reminder that my body is strong and capable and has been doing its living best for me for 47 years. And even though it is really difficult I ask myself to trust. To choose contentment and acceptance in this place and time.

Spend enough time with me and you’ll begin to notice some slight but significant differences in my person. I’m not talking about the obvious stuff: the buzzcut blonde hair, the chemo pump occasionally attached to my right arm. No, I’m referring to my personality, my social skills, and my intellect.

Honestly, I have never felt dumber in my entire life. My short-term memory is comparable with that of a flea. I find myself halfway through an amusing anecdote and then drawing a complete blank about the point of the story or its ending. If you ask me what I had for dinner last night I will need a few minutes. If you want to know what I did during the day…I will need longer. If you want to know what I did last week, I will need to refer to the calendar hanging on the fridge. I suck at google calendar (but to be fair I wasn’t super good at it in the first place).

I know for a fact that my friends are having to repeat stuff to me within the space of a ten-minute conversation. I can tell by the look of, “Is she serious?” that comes over their face very briefly before they kindly remind me of what it is I’ve missed.

But the worst part is that it feels like part of who I am socially is missing. Over coffee with friends on the weekend (I know I did this because it’s on the calendar), I found myself struggling to follow the thread of conversation at times. Or worse, redirecting the conversation back to myself so that I could contribute something. Meanwhile, all I have to talk about is cancer and chemo, and what a fun time that is for everyone!

At times, there seems to be a numbness about me. Typically this exists in the space that is five days post-chemotherapy. I can be listening to or watching something I know in my head to be hilarious and I cannot seem to muster even the slightest physical reaction. No smile. No laugh. Nothing. Similarly, I’m in a conversation with someone and I am giving them NOTHING. I hear what they are saying but it’s as if I can’t quite get a hook on the thread. To compensate, I just start phoning in responses. The poor person must think I am so rude but there is a whole internal dialogue happening for me. “React, you idiot! Laugh. Say something. Ask a question! Do something!!” It’s not that I’m not interested, I just seem to have nothing worth saying within me.

For some of my family and friends, this recent development might actually come as a pleasant reprieve. For the first time in my life, they can get a word in edgewise. I should be content to kick back and let others have a say. But those who know me well understand I won’t go down without a fight.

Apparently, this phenomenon is commonly known as “Chemo Brain”. What a creative and jolly title! Inspired. I’d like to suggest one or all of the following as possible substitutes:

  • The “Unstaffed Lighthouse” Syndrome
  • The “Bottom of the Fridge” Cognitive Profile
  • The “Look at that shiny thing! Wait, what shiny thing?!” Memory/Attention Interplay
  • The “Guess what she’s thinking (Hint: Not a lot)” Emotional Under-reactivity

In the beginning, I didn’t predict chemo brain would bother me compared with the other crap on the treatment shopping list. Friends who have been through it recommend memory assistant apps. I’m probably ready to sort that out now.

In the meantime, if I am talking to you and I look bored I promise, I’m not. I’m trying really hard to hit the ball back over the net. I’m just on a different court.

Work is not an option for me right now. Some days in the fortnight I reckon I could probably phone in an hour or two of sub-par productivity but, in the interests of extending my lifespan, I am focusing on recovery as a full-time occupation. Whilst this might sound idyllic and a bit of a lark, as someone who doesn’t cope well with boredom, it isn’t as simple as just chilling out all day. It needs structure. I need something to do. Every. Day.

Since the Christmas holidays ended I have been building a repertoire of daily activities that make me feel like I am contributing something to the world and something akin to kicking Alan in the dick.

So…we have a personal trainer, Leah, coming to the house twice a week for resistance training. I try and walk Murray most days with the help of a family member (I can’t pick up the poops because of toxoplasmosis). I am reading again and have roped some friends into a book club. We are calling it TOOFAACC “Too old for an actual club, club.” I plan and prepare an evening meal every night except steroid nights when they won’t let me near the knives. I get in the water and swim as much as possible – I want this to become more like lap swimming but at the moment it’s just being in water. I write the blog. I rest when the fatigue hits – usually at about 2pm. I know. It all sounds like really basic stuff, stuff that many of you fit in regularly around full-time jobs and parenting.

Maybe that’s the point. Maybe basic stuff is the stuff some of us crave when our worlds are in a state of flux.

It has not once occurred to me to go seeking alternate therapies, prayer circles, spiritual enlightenment, personal development workshops, holistic pulsing, or any other remedies that people facing cancer often embrace. It’s not me. And it shits me to tears when people who know me well try and sell that stuff to me. People who know me better don’t even go there. My open-mindedness has limits. It’s not what I want.

What I crave more than anything, I think, is human connection that is as normalised and familiar, and reassuring as possible. When we do normal stuff together and you are normal around me, I feel normal and well, and like I’m not constantly reminded about Alan.

This is why I chose the yoga class run by the local council in a church hall. I knew before I arrived I would be the youngest person there by thirty years. I knew that nobody would be wearing anything by PE Nation or fucking Lulululululemon or whatever that brand is called. I guessed that it would be Hatha yoga. I guessed we might not start with a salute to the sun. I knew people would introduce themselves to me immediately on arrival and then proceed to praise the seventy-five-year-old instructor in the loud whisper that comes with old age, “She’s VERY good.” I knew there would be a high proportion of Margarets and Glenys’s and I was right. I was right about it all.

Not once did we stand. It was all floor-based and focused on an extended Shavasana. People smiled at me and looked towards me to make sure I was coping. They asked about where I was having treatment and loud whispered in response, “They’re VERY good there.” My body felt strong during the lesson and calm at its close. I felt supported by a group of strangers too old to be awkward in a social setting. It felt beautiful. I never once felt self-conscious. I never once had the thought that I wasn’t good enough.

So I’m adding Yoga to my weekly schedule. It’ll be good for my body but it will also be good for Alan to know I’ve added about ten senior citizens to my army. And many of them have had dealings with Alans before either directly or indirectly.

PS. Hair update – my friend Sharyn (at my insistence) shaved my head for me (number two all over) and we then decided to bleach it blonde and dye it lilac. I absolutely love it and I should have done it sooner. A lesson in trusting my gut and being decisive.

This is an experiment. I had my infusion today and I still have Gwen, the chemo pump, attached for another two days. I’m going to try and describe what it feels like. For me. Which is to say, it’s not the same for everyone. Because I was terrified of treatment before I started treatment and I’ll start by saying that it’s not as bad as I imagined. Not even close.

But you know that feeling when you woke up hungover and you weren’t sure if trying to eat was a good idea but you gave it a go? As uncomfortable as nursing that (*insert preferred go-to hangover solution) bacon and egg roll was, you knew that if you could get through it, you’d be in a better place? But then you eat the bacon and egg roll and you know immediately you were wrong. Am I going to vomit? Probably not. Do I feel that any sudden movement could change things either way, yes.

Luckily I am well-equipped with drugs to take for the nausea. It’s just a matter of titrating their various forms and doses so as to not render myself unconscious for days. Not to mention slowing my bowel down to a pre-christmas covid testing queue crawl. A fart lets me know the engine is still running.

Chemo is a disgusting, beautiful, toxic, punishing, tumour-killing monster. At the hospital clinic, we are asked to close the lid after we use the toilet. Just having the stuff coming out of our bodies is risky to others. I’m supposed to use different towels, different hand towels, different everything to the people I live with. I heard a nurse tell a newbie patient she should wipe down the vanity after she brushes her teeth.

Right now I feel so disgusting. I just want to crawl into a corner (very dramatically) and sleep the deep sleep of the dead for the next two days.

And here’s the kicker. Tomorrow I may wake up full of energy and ready to start the day. And if you ask me how my treatment is going, I’ll tell you it’s going pretty well.

But today is basically a loose poo in a packed commuter train bathroom. Unavoidable. Ugly. And because I’ve shared the details with you…stinking up the whole carriage.

You know in horror movies when someone goes into the attic and pulls an ancient doll from a dusty trunk…the doll has a missing eye and about seventeen crazy looking hairs on its head. Well, I don’t look exactly like the doll. I still have both eyes. Sure, almost no eyebrows, but I have eyes.

My hair is going and it’s disappearing fast, all of a sudden. When the chemo plan was initially explained to me I was told there was a chance I could lose my hair and weirdly, back then, that didn’t phase me too much. Of course, given the depth and range of the shitshow in which I found myself, hair loss was probably the least of my concerns. Weird how things change.

I have never thought of myself as particularly vain but my hair falling out has honestly been one of the most emotional, upsetting phases of this whole cancer thing. For months it looked like it was just thinning and I might get away with a slightly less bulky ponytail. Right now I’m covering my ever increasing bald patches with the world’s smallest high bun. Imagine a pimple on a pumpkin and you’ve got the ratio about right.

My hair falls out all the time but those times when I am washing my hair in the shower are the most confronting. A few weeks ago I pulled my hands down after rinsing the conditioner and my hands looked like something out of Teen Wolf. I couldn’t even see the skin on my hands for the amount of hair. It was shattering and pretty soon I found myself slumped on the tiles, sobbing. It took me about ten minutes to gather myself and get out of the shower where I was promptly confronted by the sight of my scalp in the bathroom mirror. And I lost it once more.

I like to share as you probably now know. It has become my regular practice to force loved ones to witness the hair loss. Poor Mel and Magro have each been called into the bathroom to view the post-wash pile of hair which increasingly resembles the roadkill of a medium-sized marsupial. I stand there semi-naked, pointing at the base of the shower and saying, “Look at it! It’s a lot!” to which they have no choice but to reply with, “Yep. It’s a lot.” This awkward exchange is somehow helpful to me. A load shared etc…

So it’s only fair that I share with you, loyal readers, as well. Look. It’s a lot of baldness, isn’t it?!

 

More dignified people would keep this image to themselves. Dignified has never been my thing. Instead, I choose public acknowledgement. It’s a FUCKING LOT OF BALD HEAD!!! And you can’t even see what’s under that comb-over.

“Why not just shave it off and get it over with?” I hear you (quite reasonably) ask. Well, here’s the thing. I’m not finishing chemo any time soon. As far as I am aware, the plan is for me to continue with treatment for the foreseeable future. In which case, this shit ain’t growing back. And believe me when I say this…I am not one of those Sinead O’Connor types who is going to be rocking the bald head. My ‘natural beauty’ isn’t going to be outshining the large, pale walnut that is my naked cranium. I imagine my future to be akin to dressing up every day as a six-foot-something, praying mantis and just casually going about one’s day.

And not just that. Most strangers on the street don’t know I have a chronic illness and I quite like it that way. Even you lot seem surprised when you bump into me that I look pretty normal and surprisingly unsick. Once I lose my hair I will adopt that much more recognisable image of the cancer patient. And while it might help me to jump the odd queue, it’s not ideal.

Sure, I’ve been stocking up on head scarves and I will consider wigs. But it’s not the same.

Some of you reading this have already been through this whole hair loss due to chemo shit. And having seen your photos, I think you pulled/pull it off beautifully. I’m going to take all the leaves out of your books and try to style it up as best I can, then just grit my teeth and walk out the door. In the meantime, if you see me walking down the street with strands (chunks) of hair falling behind me, just smile and wave and let me pretend it isn’t happening for a little bit longer. ‘kay, thanks!

PS. I kept getting a red line under my typing of the word ‘shitshow’. I have since added this word to my laptop’s dictionary and I suggest you all do the same. 2022 is already requiring its most regular use.

On Monday the 23rd of January 2023, our beloved Kristie died peacefully at home, surrounded by love. We will love and miss her forever. 

 

 

Chris and the Gibson Family invite you to

CELEBRATE THE LIFE OF KRISTIE GIBSON

Hunters Hill Sailing Club
Clarke’s Point Reserve, Woolwich.

10AM, 31 January 2023

This will be a joyful occasion and Kristie asked that all guests wear colour – NO BLACK ALLOWED!!!!

While flowers are beautiful, a donation to Bowel Cancer Australia would continue Kristie’s legacy.

All are invited. For catering purposes we’d love to know if you are attending – CLICK HERE TO RSVP.

A copy of the invitation can be downloaded here.

I was seven metres from our main bathroom. I had overdosed on laxatives trying to counter the large amount of analgesic medication I am currently taking. My fellow lounge dwellers watched in horror as I tried to clench my way to the toilet. Two metres from the bowl it was clear this was not going to end well. I have no butt fat or muscle left to clench. It was like the scene from Bridesmaids where she sinks into the middle of the intersection in the largest wedding dress, in tears, knowing the biggest meringue now has a chocolate filling.

I landed on the toilet in a spiral of shame and my clothing completely pasted to me on all sides. My husband offered help (bless him). He would do anything. But it was my mum who I ended up calling on. And she fixed me up and hugged me like I was still her baby.

I tell this story not for a laugh although I think it might make a few of you laugh. But because I have been dreading this day since my diagnosis and have since learned how many of you have shit yourselves in the funniest places, awkward moments and most public of events. And I would love the brave of you to share your story in the comments. It would be the perfect Christmas gift. 

An update for you all. So I am sitting in our lounge room looking at the most magnificent Christmas tree which is as tall as the ceiling and smells of the sweetest pine and it is bliss. I lie back in my new recliner to make adjustments for my very distended and hard tummy. I look out at a beautiful garden and know that my family will visit soon as they have been since I entered my new phase of home based care. I am in a very peaceful place and space and whilst I go through periods of pain and discomfort, we are learning how to manage those things with priority. 

I have left Alan, Karen and all those names I gave my cancer behind. I have left cancer behind. I am no longer in a treatment/intervention pattern and this feels extremely relieving for me. I am living my most precious life right here with my people. I know that on the downside, I can’t include all of my people in that experience with me. So many of you have reached out and want to visit and talk with me but I need to hold space for my own emotions. It’s a lot. 

I also want to enjoy time with Magro where he is not my carer. I need quite a bit of help with personal care and mobility but our experience of what marriage offers shouldn’t only be limited to the most fabulous of weddings followed by a slow and steady progression to him wiping my arse. 

But I want you to know that from my perspective, you and I have no unfinished business between us. If you read this blog, if you have supported me in friendship over the years, if you have shown care or empathy to my friends and family, then we have love between us. Whilst it is a true honour to read about the impact I’ve had on your lives, it makes me proud of the person I am. You have had an impact on me too. I believe the authentic connections between people, alive or dead, never truly end. We carry each other through our lives and beyond. 

I have been processing that I am dying for a long time and some of you are just getting your heads around it now. Please know that I am not scared. I feel at peace with the process, very well looked after by the team and my family and in a space that makes me feel loved. It’s also my favourite time of year. Full disclosure: I never started writing Christmas cards and sending them and this is a decision I have never regretted – it’s a trap and a never-ending cycle of guilt and demand!  But bless those of you who do it. My friend Bev must write more than 300.

Remember how I described our wedding day as perfect? It was. In every way. But in the week leading up to the event I was starting to worry about how I was going to last. I’d begun to notice some new symptoms that had me troubled and my normal level of fatigue seemed to have worsened. However, on the day itself, I woke with excitement and seemingly boundless energy that kept me going all day and into the night. I couldn’t believe it. I mean, the steroids helped, let’s be honest. But love got me there.

Unfortunately, the day after the wedding, Alan kicked back. HARD. Nausea, a very public and projectile vomit at our recovery event, tears of exhaustion, fatigue, a distended and sore belly, dark brown urine despite trying my best to hydrate…it was all happening.

A few days on and I wasn’t feeling better. A quick google of what to expect during liver failure had me ticking all kind of boxes and I slowly walked towards Magro to let him know that I thought my cancer was spreading. I was getting sicker. 

First thing the next morning I called Dr Duenna, my oncologist, and she asked me to present immediately to emergency. Scans, bloods and a few other tests confirmed what we had both been thinking. Alan had finally broken loose of his compound. My cancer had begun to spread throughout my abdomen. It was in the fluid that was building around my organs and most likely on the surfaces of the organs themselves.

And then came the very difficult conversation. 

Chemotherapy and other possible treatments would do nothing to improve my situation and could only add to my discomfort, even leading to toxicity. Future interventions would be aimed at supporting me to live with as much quality of life as possible. We officially entered the palliative care phase of my illness.

Now, look. I know palliative care has a bad rep. A lot of you are thinking I’m two minutes away from dying in a hospice bed. And you’d be forgiven for thinking that because for a long time, that’s exactly what palliative care seemed to be. So many people weren’t admitted until the last minute when it was all a sliding shitshow of death and dying.

But I have been researching and exploring this outcome for a long time now and what I have learned is that palliative care is quite different these days. It is about supporting people with many different types of life-limiting conditions to live as well as possible in the time they have left. Through symptom control and pain relief, patients can go about their lives for much longer than was once possible. This is partly due to early intervention and home-based care.

But it’s also me saying no. No more chemo. No more trauma. No more relentless cycling through the process of dread and recovery. It’s my time now to live and relax and enjoy my new married life, precious time with family and close friends and time for me to process my life and its legacy. 

Cancer is not a fight. It’s not a fucking journey. It’s an awful experience with which one has no choice but to reckon. And I don’t want to reckon with cancer anymore. I want to play, to love, to live. I don’t know how much time I have left, but I will live it the best I can. With help from people who know what they are doing. I trust the new team. And I trust myself that I have got this next bit…as messy as it will get and as scared as I may become. My body, brain and heart are doing what they need to like they always have. Just keep living.

Have you ever had a perfect day? The kind of day you might have actually been apprehensive about and then it arrives and everything just happens in this beautiful, magical way and you feel like you are gliding seamlessly from one incredible moment to the next? Yeah, me neither. Until last Friday. 

Our wedding day was perfect. In every way. Mostly due to the incredible efforts and organisation of friends and family but also because it was so much more than catering, a venue, the band, and the outfits. We woke up in a love bubble that day and were carried through the day surrounded by the most beautiful collection of loving humans we are privileged to call family and friends. Everywhere we turned that day were faces smiling back at us with nothing but joy and happiness on their faces. Our love was reflected.

The big blue sky of Australia is something I never really appreciated until I had travelled and lived overseas. That first step back on Australian soil and glancing towards the sky has an immediate heart and mind opening effect on me. Its broad expanse seems to fill me up. On our wedding day, the sky was enormous. A beautiful, cerulean canvas on which a hundred memories would be painted across its backdrop. I walked down the aisle towards a scene and a man so beautiful I had to turn around and start again. 

Magro and I used our day as a way to express love for each other and those we love in every possible way. That was our intention. We wanted everyone to experience our love, and for their own loves to be considered, remembered and treasured. We wanted a party that would bring all of our people together. We wanted movement, irreverence, laughter, tears, honesty, inclusivity and really sore feet at the end of it all. 

There was always an urgency about this wedding because I have cancer and our time together is limited. It is silly to pretend otherwise and it’s worth mentioning because everyone who came along understood the brief. Every guest played their part in our vision. By the end of the weekend, new friendships had been formed, great conversations had been had and most importantly, connection was everywhere…my new found meaning in life. 

Laughter and joy through tears is really one of a human’s most beautiful expressions of emotion. We filled bins with the amount of tissues used and the laughter was the loudest sound on the day. Our most joyful day. Just so bloody JOYFUL.

 

Dear Parents,

I was going to share these thoughts at our wedding next week but they need more space and a wider audience.

We have been a blended family since before the term was invented. Mum and Dad, you were divorced in the seventies and everyone can look back on that decision and appreciate it was absolutely the right call. It’s kind of weird to imagine you two together as a couple. But then I often think about some of the people I hooked up with when I was younger and the thought of still being with them now is pretty funny. In fact, I have an ex (no prizes for guessing which one) to whom I’d gladly wield a tomahawk if forced into a mutual social setting.

Continue reading “Dear Parents” →

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