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. 

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.

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.

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.