Tag: chemo

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.

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.

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

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…

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.