Tag: bowel cancer

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.

 

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.

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

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.

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.