I’m 45 years old and currently battling cancer. A few weeks ago, I threw up at work with such force that I peed myself. My first thought was: the treatment pamphlets tell you to sip peppermint tea and keep a fan at your desk for nausea, but nowhere did they mention you might find yourself in the staff bathroom vomiting so hard you become incontinent. If they had, I’d have popped a spare pair of undies in my work bag.
I was diagnosed just before Christmas last year. It was a complete shock: I was 44 and the healthiest I’d been in years. At first, I was given an excellent prognosis, and after the initial shock, I rallied like never before. I decided I was going to face this head-on, full of positive energy.
But after surgery and pathology, the language shifted. They started using the word “good” instead of “excellent”, and we realised this was going to be more of a fight. I gathered as much information as I could, along with every resource available, determined to be prepared. But nobody told me about the messy parts.
After speaking to some fellow cancer warriors, I’ve compiled a list of the advice I wish I’d been given at the start.
1. You don’t have to follow the advice
At one of your initial appointments, you will be handed a tonne of information from the Cancer Council, and most of it is solid gold. But you don’t have to do everything that’s recommended. This is a shock, and I’m sorry it’s happened to you, and it’s OK to do this your way. I started by sharing everything publicly and was overwhelmed with wonderful support. Nine months in and I’ve retreated into myself and don’t want to talk to anyone about it. Both are OK. My oncology counsellor told me to stick to my normal schedule as much as possible and not to give cancer more power than it already has. This was fine until recently when I had to cut back hours at work. I’m not giving cancer power, however – I’m giving my body the rest it needs.
2. Give your body what it needs
Right now I need rest, nutritious meals when I can handle them, sunlight and movement. There’s new research that suggests exercise plays a vital role in cancer treatment, and it’s encouraged where possible. Personally, I find it improves my mood, gets me outside and helps me feel I’m taking a proactive step towards health. Likewise, I spoke to a fellow cancer warrior who explained that she loves juicing – each day she will head to the fruit market and carefully choose her fruits and vegetables. She explained she understands that juice is probably doing nothing for her cancer, but it’s not bad for her and helps her feel proactive. I’m not into juice, but after speaking with her, I now have salad for lunch every day. My daily bowl of rainbow veggies isn’t a cure, but it is a ritual that feels as though I’m telling cancer to fuck off.
3. Your body will change in unexpected ways
You might pee yourself when you spew – look, it happens. Chemotherapy in particular will mess with your digestive system and you will immediately map out the toilets of any public space you are in. You might lose your hair – everywhere. Losing your nasal hair means your nose will run constantly. Losing your pubic hair makes you fart really loudly. Steroids make you pack on weight; other medications will strip it off frighteningly fast.
4. Cancer hurts, and some of that pain is financial
I have stopped working full-time and we are so very broke right now. My diagnosis coincided with the cost-of-living crisis, so we’ve never needed a second income more. And cancer is expensive. It’s not as bulk billed as you would expect – the fine needle biopsy used to diagnose my cancer cost $380 after the Medicare rebate. The medical costs add up quickly.
5. You will become your own best advocate
Sure, you should find a knowledgable medical team who has your best interests at heart, but you know your body best. If something doesn’t feel right, keep pushing until it’s paid attention to. It’s OK to demand that scan, try a different medication and to discuss treatment options. You are not difficult. You deserve solutions.
6. You will lose friends and gain unexpected ones
There’s this idea that challenging times “show us who our real friends are” but that’s not the case at all. Cancer is a lot, and not everyone can take this journey with you. It doesn’t make them bad people, it’s just that life is heavy for everyone and they don’t currently have space for you. But the people who stay with you will hold you up in ways you never knew you’d need, and you’ll make new friends too.
7. Cancer is a rollercoaster
Lots of metaphors work, but this one is the best. The sudden jolting start, the highs, the lows, the speed increase and decrease and the twist you didn’t see coming. All of this is geared to get you to the exit: remission or NED – no evidence of disease. But here’s what you didn’t know: if you’re lucky you can get off the rollercoaster, but you can’t ever leave the amusement park. Every three, six, 12 months you have your scans and blood tests and see if you’re being dragged back on for another spin. I was thrown back on this year after a scan revealed new tumours, this time in my lung. I have lost the positivity that powered me through the first round. I’m not sharing as much because there’s nothing to say. It isn’t fair the first time, but the second time hits you where it hurts.
8. You aren’t alone
There is so much help available. My family and friends, once they knew what was going on, cooked meals, grocery shopped, took care of our youngest and supported our eldest. I live in regional New South Wales and the charity Can Assist has been a lifeline. They pay for all of my cancer medications, including my radiation meds, and will cover transport and accommodation costs when I have to travel to Sydney for treatment. Your local hospital should be able to point you in the direction of a social worker who will find all of these helpful options for you. There’s probably a support group near you – make use of it.
9. You don’t have to stay positive
You don’t have to be brave. You don’t have to be the best cancer patient and be liked and be an example to others. It’s OK to cry. Just make sure you reach out for help if it feels as if you are drowning in your tears.
10. You won’t be the same
But that’s not necessarily a bad thing. You will experience a loss of autonomy like never before. One moment my husband and I were discussing trying for a third baby, and the next I’m signing forms promising to not get pregnant for at least 12 months post radiation. But I’m stronger and surer of myself now, and I understand the fragility of life. I take fewer things for granted and prioritise my family over my career.
The pamphlets can’t tell you all this. But those of us who’ve been on the ride can.
And if you’ve just found yourself holding that ticket – pack the spare undies. Trust me.
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Emily Thompson is a writer based in central western New South Wales
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In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. International helplines can be found at befrienders.org