Tag: bowel cancer

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.

Work is not an option for me right now. Some days in the fortnight I reckon I could probably phone in an hour or two of sub-par productivity but, in the interests of extending my lifespan, I am focusing on recovery as a full-time occupation. Whilst this might sound idyllic and a bit of a lark, as someone who doesn’t cope well with boredom, it isn’t as simple as just chilling out all day. It needs structure. I need something to do. Every. Day.

Since the Christmas holidays ended I have been building a repertoire of daily activities that make me feel like I am contributing something to the world and something akin to kicking Alan in the dick.

So…we have a personal trainer, Leah, coming to the house twice a week for resistance training. I try and walk Murray most days with the help of a family member (I can’t pick up the poops because of toxoplasmosis). I am reading again and have roped some friends into a book club. We are calling it TOOFAACC “Too old for an actual club, club.” I plan and prepare an evening meal every night except steroid nights when they won’t let me near the knives. I get in the water and swim as much as possible – I want this to become more like lap swimming but at the moment it’s just being in water. I write the blog. I rest when the fatigue hits – usually at about 2pm. I know. It all sounds like really basic stuff, stuff that many of you fit in regularly around full-time jobs and parenting.

Maybe that’s the point. Maybe basic stuff is the stuff some of us crave when our worlds are in a state of flux.

It has not once occurred to me to go seeking alternate therapies, prayer circles, spiritual enlightenment, personal development workshops, holistic pulsing, or any other remedies that people facing cancer often embrace. It’s not me. And it shits me to tears when people who know me well try and sell that stuff to me. People who know me better don’t even go there. My open-mindedness has limits. It’s not what I want.

What I crave more than anything, I think, is human connection that is as normalised and familiar, and reassuring as possible. When we do normal stuff together and you are normal around me, I feel normal and well, and like I’m not constantly reminded about Alan.

This is why I chose the yoga class run by the local council in a church hall. I knew before I arrived I would be the youngest person there by thirty years. I knew that nobody would be wearing anything by PE Nation or fucking Lulululululemon or whatever that brand is called. I guessed that it would be Hatha yoga. I guessed we might not start with a salute to the sun. I knew people would introduce themselves to me immediately on arrival and then proceed to praise the seventy-five-year-old instructor in the loud whisper that comes with old age, “She’s VERY good.” I knew there would be a high proportion of Margarets and Glenys’s and I was right. I was right about it all.

Not once did we stand. It was all floor-based and focused on an extended Shavasana. People smiled at me and looked towards me to make sure I was coping. They asked about where I was having treatment and loud whispered in response, “They’re VERY good there.” My body felt strong during the lesson and calm at its close. I felt supported by a group of strangers too old to be awkward in a social setting. It felt beautiful. I never once felt self-conscious. I never once had the thought that I wasn’t good enough.

So I’m adding Yoga to my weekly schedule. It’ll be good for my body but it will also be good for Alan to know I’ve added about ten senior citizens to my army. And many of them have had dealings with Alans before either directly or indirectly.

PS. Hair update – my friend Sharyn (at my insistence) shaved my head for me (number two all over) and we then decided to bleach it blonde and dye it lilac. I absolutely love it and I should have done it sooner. A lesson in trusting my gut and being decisive.

You know in horror movies when someone goes into the attic and pulls an ancient doll from a dusty trunk…the doll has a missing eye and about seventeen crazy looking hairs on its head. Well, I don’t look exactly like the doll. I still have both eyes. Sure, almost no eyebrows, but I have eyes.

My hair is going and it’s disappearing fast, all of a sudden. When the chemo plan was initially explained to me I was told there was a chance I could lose my hair and weirdly, back then, that didn’t phase me too much. Of course, given the depth and range of the shitshow in which I found myself, hair loss was probably the least of my concerns. Weird how things change.

I have never thought of myself as particularly vain but my hair falling out has honestly been one of the most emotional, upsetting phases of this whole cancer thing. For months it looked like it was just thinning and I might get away with a slightly less bulky ponytail. Right now I’m covering my ever increasing bald patches with the world’s smallest high bun. Imagine a pimple on a pumpkin and you’ve got the ratio about right.

My hair falls out all the time but those times when I am washing my hair in the shower are the most confronting. A few weeks ago I pulled my hands down after rinsing the conditioner and my hands looked like something out of Teen Wolf. I couldn’t even see the skin on my hands for the amount of hair. It was shattering and pretty soon I found myself slumped on the tiles, sobbing. It took me about ten minutes to gather myself and get out of the shower where I was promptly confronted by the sight of my scalp in the bathroom mirror. And I lost it once more.

I like to share as you probably now know. It has become my regular practice to force loved ones to witness the hair loss. Poor Mel and Magro have each been called into the bathroom to view the post-wash pile of hair which increasingly resembles the roadkill of a medium-sized marsupial. I stand there semi-naked, pointing at the base of the shower and saying, “Look at it! It’s a lot!” to which they have no choice but to reply with, “Yep. It’s a lot.” This awkward exchange is somehow helpful to me. A load shared etc…

So it’s only fair that I share with you, loyal readers, as well. Look. It’s a lot of baldness, isn’t it?!

 

More dignified people would keep this image to themselves. Dignified has never been my thing. Instead, I choose public acknowledgement. It’s a FUCKING LOT OF BALD HEAD!!! And you can’t even see what’s under that comb-over.

“Why not just shave it off and get it over with?” I hear you (quite reasonably) ask. Well, here’s the thing. I’m not finishing chemo any time soon. As far as I am aware, the plan is for me to continue with treatment for the foreseeable future. In which case, this shit ain’t growing back. And believe me when I say this…I am not one of those Sinead O’Connor types who is going to be rocking the bald head. My ‘natural beauty’ isn’t going to be outshining the large, pale walnut that is my naked cranium. I imagine my future to be akin to dressing up every day as a six-foot-something, praying mantis and just casually going about one’s day.

And not just that. Most strangers on the street don’t know I have a chronic illness and I quite like it that way. Even you lot seem surprised when you bump into me that I look pretty normal and surprisingly unsick. Once I lose my hair I will adopt that much more recognisable image of the cancer patient. And while it might help me to jump the odd queue, it’s not ideal.

Sure, I’ve been stocking up on head scarves and I will consider wigs. But it’s not the same.

Some of you reading this have already been through this whole hair loss due to chemo shit. And having seen your photos, I think you pulled/pull it off beautifully. I’m going to take all the leaves out of your books and try to style it up as best I can, then just grit my teeth and walk out the door. In the meantime, if you see me walking down the street with strands (chunks) of hair falling behind me, just smile and wave and let me pretend it isn’t happening for a little bit longer. ‘kay, thanks!

PS. I kept getting a red line under my typing of the word ‘shitshow’. I have since added this word to my laptop’s dictionary and I suggest you all do the same. 2022 is already requiring its most regular use.