I had a tumour removed from my bowel on July 31, 2018.
Imagine being told you have a tumour in your bowel, and you need to go to the hospital ASAP. By that night you are in surgery for nine hours as your bowel was almost 'completely blocked up'. And you wake up with a bag hanging from a hole in your stomach which you now have to live with.
After three days in hospital they inform you ‘you have Stage 3 bowel cancer’.
Although my surgery was complicated, “If I had waited another week or two [my bowel] would have completely blocked up and closed over, so it was quite a large tumour," the surgeon said.
I didn’t cry, all I wanted was sleep, so I could process that sentence. When I woke, I then knew I would have months of chemotherapy ahead of me.
At that time, I knew I had to get on with it and get rid of this horrid disease. I had to fight, I had to fight for my children, grandchildren, husband, my family, my friends and fur-children. It hit my partner and family harder than it hit me on that day.
I also feel like a fraud. My hair got thin, but my beautiful sister kept it short for me so no-one could tell. But I could tell. I didn't lose weight. I was told all the time ‘You look good’. I looked fine, but I didn’t feel it.
I’m not brave, I didn’t have a choice. I just had a lot of things to still do, like seeing my grandchildren grow up, reminding my children what they did, and their children are doing the same. I just had to get on with it whether I liked it or not. I'm stubborn.
As someone who usually cares for others and is fiercely independent, I found it very hard to accept help. My main advice to other women is to accept all the help you are offered. You do deserve it. I do sometimes wonder if I am the only one who feels that way, but I suspect I’m not.
I recall being told some side effects of chemotherapy. Other than peripheral neuropathy, FOLFOX was likely to have ‘hair thinning’ and gastrointestinal upset. What I learned was that it wasn’t the type of side effect, or the number, but the qualitative nature of it that counted.
The Oxaliplatin gives me cold induced paraesthesia and the Fluorouracil gave my what I called ‘fire hands and feet’. One required warmth and the other cold.
For at least seven days out of my fortnight (I had treatment every fortnight) I couldn’t drink or eat cold things. I got pins and needles in my fingertips and in my mouth – which I didn’t even know was possible. It is incredibly frustrating to go through summer staying hydrated on lukewarm fluids.
Once my Oxaliplatin was ceased, I continued with the rest of the regime.
When I was having chemotherapy every fortnight, it really played with my emotions and mental wellbeing. I would finally start feeling like myself, just to go back to hospital and ‘get sick’ all over again. It was difficult to remain positive and I deeply hated the chemo pump as part of my treatment. My granddaughter called it the baby bottle (as it had a pretty pink top on it) but the poison attached to my chest and infusaport was far from pretty. I could feel it and smell it slowly drip poison into my body every 90 seconds for two days.
The worst of the side effects was not being able to eat, drink or touch cold things whilst being perpetually nauseous. I couldn’t find relief in a simple glass of water.
I had 12 cycles of chemotherapy to prevent the cancer spreading. The chemo was administered over two and half days within a 14-day cycle. I experienced nausea and diarrhoea following my chemotherapy treatments and wanted to stop treatment after every cycle.
I was connected and in the Cancer Care hospital for a minimum of six hours on Thursday. I would then go home connected with my chemo in a bottle and then disconnect on the Saturday.
It was an awful time and I experienced every emotion possible. I could not have gotten through that six-month period without the love and support of family, friends and an amazing group of work colleagues.
Six months doesn't seem like a long time, but trust me, when I heard six months of treatment, it sounded like and felt like 60 years.
Showers were a chore, don’t get the bottle wet, and make sure you don’t yank the needle out or the bum bag around your waist holding the blessed thing.
Through this time, I was fine for my family and friends, but it was horrible and scary, more so than I would like to admit.
I still have side effects and symptoms that plague my everyday life. Constant pins and needles in my fingers, toes, around the mouth and tongue. The charming advice from my oncologist was ‘It will get better, but it may take a couple of years. Or it may be permanent’.
Wow… when I’m lying in bed at 1-3 o’clock in the morning with pain which is going up to my elbow and shoulders and up to the back of my knees, let me think ‘thank God only a couple years to go’.
Then there were the ulcers which covered my throat, side of my tongue and entire mouth, and a constant nausea that was relentless.
Chemotherapy was hard. It is listing more than 20 or 30 side effects that makes you start to worry that no part of you feels or looks the same and you worry that things won’t ever be the same. The truth is it won’t be. After treatment, it can’t be. I still, months post treatment, have effects from the chemo and removal of the tumour and perforation of my bowel which I’m still affecting me and working through and I’m traumatised by all this.
Sometimes overwhelming fatigue sticks around. It got worse as treatment went on and that was very disempowering. You feel like you’ve lost control and things you used to take for granted like going to the bathroom or making yourself breakfast, which is just so hard to physically do.
I believe I’m a pretty positive person, but the magnitude of my situation began to sink in when I had to learn how to manage the ileostomy bag.
The surgeon cut a hole in my stomach about the size of a 20-cent coin, pulled my small intestine through the hole, stitched it to my stomach and cut a hole in the intestine to create an opening, called a stoma.
The procedure allows me to pass waste which is collected in the bag on the outside of my stomach.
It was so brutal … I felt super awkward, uncomfortable and embarrassed about the smell for about six weeks.
Managing the bag was a steep learning curve for me, as I could not sleep through the night because it needed to be emptied halfway through.
Talking about it helped me embrace the experience. It ended up being that the more I talked about it the more comfortable I felt.
I had my reversal on the 26th July 2019. I’m still just taking it one day at a time. Hopefully it will work, so it is the next step closer to being as normal as I can be.
I then finished my 12th and final round of chemotherapy in February 2019.
I still suffer legs cramps and I still have the numbness in my hands, legs, face and tongue. But my hair is growing nicely, and I am still here.
I have completed treatment and have returned to work part time. I am slowly navigating through life post treatment where some days you feel grateful to be on the other side of treatment, and those same days feel guilty that others didn’t get the same luck you were given. 2018 changed my life forever.
Returning to work is harder that I thought it would be. There’s still this small possibility that this has all been for nothing. That the cancer is throughout my body and I’m just waiting for it to rear its ugly head again. Living with that fear, I’m not sure I’m truly living yet.
Despite the life-threatening phrase ‘you have Stage 3 bowel cancer’, I know I’ve had the privilege of many silver linings. Any cancer patient will tell you that after diagnosis, nothing is ever the same. Some parts of your life resemble what you know and others, completely different.
My hand and feet issues are the worst thing I am experiencing. Having to spend days holding heat packs to my hands and feet just to relieve the pain. That resulted in me have problems walking barefoot to the bathroom or kitchen due to pain, unable to even flex my fingertips.
While for now I had to live with an ileostomy bag, there is a simple message for others: early detection can save your life.
People receive these [bowel cancer] test kits in the mail and only a small proportion of Australians are returning them, the rest are ending up in landfill.
It's just horrifying to think that there's millions of lives that could be saved if people just take this test.