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Rear-ended by Cancer

No one wants to talk about anal cancer.

But if you have it you probably want to know about it. Maybe you’ve been googling and you’ve come across Farrah Fawcett’s story, which is kind of hard to relate to, kind of not, but at the same time in-your-face and frightening. Also, it has a sad ending.

I’ve found a lot of helpful articles on Medium in the past couple of years, about journaling, writing, reinventing. Stuff about how to be a better version of yourself. I even have my own few articles from a while ago. When I was diagnosed with anal cancer on 8 February 2019 I searched Medium for anal cancer and found this. And though short, humorous, somewhat bleak, I felt a connection to the author. But I had perhaps hoped for a bit more. That human need to relate.

So here we are. I thought I’d write my experience of anal cancer in hope that it’s helpful to someone, to you, that you might feel less alone. Also, my story has a happy ending.

Note: This article is long and in places tedious with detail, though not a lot of medical facts. I have tried to include all the things I wondered about.

Okay, so.

There were signs. Pain and bleeding. My doctor didn’t think there was cause for concern but when it didn’t heal and kept getting worse (a good year and a half in) she eventually sent me to see a specialist surgeon. I waited four months for that appointment to come around. But when it did, everything suddenly moved real fast. I had a biopsy the very next day (more about that fun day another time) and two weeks later I was diagnosed with cancer. I was 38 and I remember standing in the hospital parking lot with my husband, smoking one of my last ever cigarettes, determined not to cry because I had an epic ten-hour work day ahead of me.

Even though I’d tried to mentally prepare for the worst, it was still such a blow. I was so disappointed in myself. For being so stupid, smoking in particular is monumentally idiotic. I knew that and yet. Well.

While I waited for my pending MRI and CT scans to come around I thought a lot about what needed to change. Obviously the smoking had to go. Diet. I don’t drink that much anymore, but still. Meditation. Exercise. Adding good stuff, subtracting the bad. I thought a lot about what’s important and what’s not. The small, petty, everyday stuff suddenly was just that. Not worth the energy. Creativity stood out as a beacon. Purpose. Beauty.

From being diagnosed until finding out how big the cancer was, if it was stage 1, 2, 3 or 4, was one of the strangest periods of my life. Not knowing how much time, if any, I had left put things into sharp relief. If you want to read more about this, I’ve published some of my thoughts and notes here.

Thankfully it turned out to be a small tumour, 2cm x 2cm, stage 1, with 85% chance of cure. Grateful for those odds. The treatment plan was explained to me by my radiology oncologist and I was given a little pamphlet for prostate cancer, seeing as anal cancer is in that general area, only not as common as prostate so no brochure. Similar side effects, I guess, apart from the inevitable dive into menopause.

I found out that I was in for 30 blasts of radiation and two rounds of chemo. Six weeks of treatment in total, weekends off. The radiation would be Monday to Friday for 20 minutes or so each time. The chemo came in a canister that was attached to me via a picc line for the drugs to slowly seep into my body for the duration of 96 hours at 2ml per hour. Chemo twice: Day 1–5 and again at day 26–30, bookending the radiation.

Fun fact: Did you know there are more than 100 types of chemo drugs? At least I got to keep my hair with the Mytomycin and 5-FU. Small wins.

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Chemo. All hooked up and ready to go.

I totally underestimated the chemo. There was a lot going on at the gallery that I work at, Gary Baseman’s show was opening, and I went into treatment on April 1st (fool) already exhausted and, in hindsight, quite stressed. I ended up taking myself to the ED on day 3 because of breathlessness and chest pain, which turned out to be nothing. After that I had a few days off until I had the picc line removed, recovering at home, coming back to life.

I’m grateful to my husband for taking the reins during this time and the weeks that followed, making sure things were as normal as possible for both me and our almost-teenage son, who took the whole thing in his stride. He (my son) wanted to know if I would lose my hair and if our lives would change in a big way. When I told him no to both, he was fine as long as I was visibly coping. If I had a bad moment, I hid away in the bedroom with a book. This mostly worked, I think. Not always.

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Gary Baseman providing distraction.

So, for 30 days I went to the KKC, the local radiation therapy centre, once a day. Sometimes on my way to work, sometimes in my lunch break. I am grateful to my manager for allowing me this flexibility, for me to have a sense of normality and routine, to be at work among friends was distracting (in a good way). Many hugs and some tears happened at work during this time. I’m still overwhelmed by the kindness and compassion of the people around me, who all found ways of showing me that they love me. It was an incredibly humbling experience and something I struggled with initially. I think I felt like I had brought cancer on by myself and didn’t deserve such love and kindness. But my friends would have none of that and I had to surrender. I came to think of my friends and family as my army of love all lined up behind me, prepared for battle alongside me, with me.

Here’s a breakdown of a day in my life as a cancer patient. Day 21, to be exact. From my notes:

I drive over to the clinic on 20th Ave and park in the KKC carpark. Through the sliding doors, 23 steps down the spiral staircase, greeted by the same two smiling receptionists, push through the doors. The waiting area with the orange and green sofas that are surprisingly uncomfortable. Ellen on the big TV, or Tipping Point or The Chaser, but mostly Ellen. I drink my water, 750ml, to fill my bladder so it will push my bowels out of the way. Then they call me to enter, “Okay, Karen”*, the kind nurses who operate the machine. I only remember a few of their names. I follow them into treatment machine room number 2, where I take off my shoes, socks, pants and undies, grab the pillowcase for some modesty (I care less and less), step up and lie down on my blue bag thing, which is perfectly moulded to my body and fits only me. The nurses ask me to shimmy up or down a bit, to lie heavy as they rotate my hips and bum into correct alignment with the red lasers and my 3 dot tattoos, one above my ever-thinning pubes and 2 on either side of my hips. The middle dot is off-centre, which continues to bother me. Once I’m in place the girls leave the room and power up the machine for its maiden round of scanning, to see if my bladder is sufficiently full and I’m lining up properly. Apparently I’ve lost weight and my derriere has shrunk. The machine settles below me and tiny adjustments are made to my position from outside the room. Then it’s BEAM ON.

I don’t feel the radiation, only see the machine as it orbits my body, aiming its invisible beam precisely at the tumour. I try to block out the sound (it sounds like a laser, cutting) and try not to think of my poor hipbones that are in the way. I visualise the cancer engulfed in flames, dying, withering away. (Apparently the dead tumour cells are reabsorbed by the body and flushed out via the kidneys. Interesting. Good to stay hydrated). I shift my attention to the radio playing quietly from speakers in the ceiling, George Michael’s Freedom, as the machine makes its way first around one way, then back around the other way, and then it’s done. I wait for the nurses to return and lower the table so I can hop down, put my clothes and shoes on and thank them as I beeline for the bathroom, my bladder in need of emptying. The out the doors and back up the 23 steps to the car park and drive back to work.

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The machine

*Karen is my birth name (Karen Louise in total) and it’s Karen who all the boring stuff happens to. She gets the bills and the cancer. Poor Karen.

Radiation accumulates. I actually didn’t feel too bad for the first 3–4 weeks, even flew to Christchurch (2 hour flight) to visit a friend. My radiation oncologist kept saying that the worst was yet to come but I was very optimistic. Bring it. When the time came for the second and final round of chemo I was much more prepared. I was well rested, hydrated, took the week off work, and made dates with wonderful friends for them to drive me to KKC and back.

And then it got hard. Really hard. And it hurt. A few notes from those weeks here.

The two weeks following treatment I was a mess. I can’t even really remember. Pain and morphine. On the couch with my cat watching Big C and Breaking Bad (both cancer related TV shows, not sure why I was doing it to myself) on Netflix and crying, feeling like I’d been microwaved.

The last day of treatment came and it was such a huge relief. We drove to McLarens falls for a slow, shaky, autumn walk and roll in the leaves.

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Slowly, I got better. I went back to work. Went for walks. Hoped and prayed to hell that the cancer was gone. I waited to have another MRI scan 2 months from the last day of treatment, which was May 14, 2019. The scan showed that where before there was a tumour, now there was nothing. I will go for 3-monthly check-ups with my surgeon doctor for the first two years to keep an eye on things, and more checks until 5 years down the track. So far so good.

The Basaloid Project

The idea for the Basaloid short graphic novel/comic came early on, not long after starting treatment, and began with this little drawing in my notebook.

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The Basaloid is the menace, the parasite, the black dog of despair. The cancer. It will suck the life out of you. It’s a story about journeying through the storm and emerging on the other side. It’s about resilience, hope, vulnerability, fear, love, purpose, and renewal.

And then I thought, how far can I take this thing? Could I have an exhibition? With the graphic novel pages, some sculpture, maybe even some paintings in there as well. And workshops!

I don’t know. It’s a way to make sense of things. To make something beautiful and brave out of something ugly.

I’m still processing. Writing this was good. Writing stuff down is always good.

With the Basaloid Project I hope to inspire you (and the world!) to grab life by the balls now and not wait for cancer to come knocking. At the risk of sounding cheesy, toe-curlingly so, I’m grateful to cancer for waking me up and giving me a stronger sense of purpose and focus. I have books to write, countries to visit, art to make. A boy to watch grow up.

And grateful that it was only a little cancer and I get to do all those things. Not everyone does.

*

If you made it to the end of this article, yay hurrah! Thank you for reading. If you want to connect, leave a comment below, and you can follow the creation of the Basaloid Project on Insta.

Be well ❤

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