Author: Kristie Gibson

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.