Tag: chemotherapy

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.

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

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.

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.

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.