Tag: control

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.

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.