Not that they knew straight away, the surgeon just said there was secondary cancer metastases on my liver and they were going to go looking for the primary – he left my gall bladder where it was! By the end of the week I’d had a colonoscopy and endoscopy amongst a world of other tests, MRIs, CT scans, to try and find out where the primary tumour was.
Prior to August, I’d had no symptoms! Well not that I was aware of, not that pointed to cancer anyways. All of August I was pretty flat and tired, more tired than normal. I stopped gym and boot camp, goodness I even took a nap at work under my desk! Something was definitely not right. My GP had done blood tests and more blood tests and more blood tests, but was yet to find anything. My liver function numbers were off… but I suppose GPs don’t go testing for cancer in ‘healthy’ 30-year-olds… goodness I don’t even know what you could test for without any other symptoms to point in the direction of bowel cancer. I was hoping just for glandular fever…
Sharp gall stone pain (which the surgeon and oncologist team now believe was referred pain from the cancer) sent me to Emergency on a Friday night. I’d cancelled my GP appointment that day because I felt ‘better’ after getting some sleep and would see how I managed on the weekend. I spent the weekend in hospital and Monday morning came around and I was due for surgery.
That morning after taking some Panadol I threw up. At the same time, I also passed some blood. The nurse queried had it happened before? Not that I’d noticed. She said she’d pop it in my notes, but she was sure it was fine. After the first surgery to attempt to remove the gall bladder the doctors initially thought it was pancreatic cancer. There is a clump of lymph nodes that have created a shadow, apparently, near my pancreas – so that is what they put it down to. The next day I went to the bathroom. This time I definitely passed blood. It was all just blood.
The doctors did query if it was possibly just my period, which I scoffed at. I knew where that blood came from. Fortunately, that prompted some more tests and investigation. A colonoscopy and endoscopy on that Friday morning led to finding a tumour essentially blocking my bowel and surgery that needed to be done that night. The surgeon wondered how I had been going to the bathroom. How had I been passing anything? I do wonder if I had been paying enough attention to my bowel movements. What had been coming out the other end? What if I’d noticed some blood earlier? What if, what if? Who knows.
I woke from surgery with the tumour removed from my bowel but with a new addition - a colostomy and learning to deal with a stoma bag. Alas, not the end of the world, apparently the least of my problems! Though initially that was the bit I found the hardest to deal with. Cancer no worries – I can’t see it. Stoma... hell my insides are now visible on the outside. Poo is poo, but the hole into my stomach – creepy. I’m too squeamish for this cancer business. After five months with it now, and realising so many other people have them (it isn’t just an ‘old man’ thing), it is more a blessing than a problem.
What about my treatment and where to from here? I’ve been told chemotherapy is likely only to shrink the cancer not kill it, technically it is deemed palliative chemotherapy. That term ‘palliative’ in itself just brings up issues for me, only associating it with end of life type of care – which isn’t the case – but is what most people associate it with. The first set of chemotherapy was not working after five rounds. The new chemo combination definitely knocked me for six much harder the first fortnight, but since then has been fantastic (relatively speaking)!
Not sure why or how... but I’ll take it. No real nausea. No headaches, just tired. A tiredness I think only other cancer patients seem to understand. A bit of diarrhoea but that is more manageable with a bag, I don’t have to run to the loo or be stuck there! (there is that blessing in disguise) Other side effects I’ve experienced? I’ve had nausea, headaches, extreme fatigue, and currently my hair is thinning… a lot (it depends on the type of chemo you receive to if you are likely to lose your hair or not, the first set I wasn’t meant to…. This set I definitely am)! First world problems. Though I have joked with friends that at least if I had no hair, or I looked like the stereotype ‘cancer patient’ with a headscarf or turban – then people wouldn’t judge me.
The fact I can’t walk long distances, or I’m slower in the supermarket, or I can’t really stand up for more than 10 minutes at a time without feeling ill and needing to sit down – at least if I looked like people expect someone with cancer to look like – then they wouldn’t judge me.
My friends and family have been great (they have what I like to explain as the cancer guilts) but none obviously understand how tired I am when I say I'm tired. Or the nausea or the pins and needles from cold things or.... all of it. I wish I knew lots of things before I got cancer. But realistically none of those things would have made any difference to my situation. I wish I could convey how frustrating it is not being able to drink cold drinks or touch cold things. One of the side effects of one of my chemo drugs is cold sensitivity. For at least seven days out of my fortnight (I have treatment every fortnight) I can’t drink or eat cold things. I get pins and needles in my fingertips and in my mouth – which I didn’t even know was possible. Incredibly frustrating to go through summer – staying hydrated on lukewarm fluids is not so fun.
I’m single and live by myself which is a challenge. I see lots of people at day oncology where I go to have my treatment every fortnight. They all have a great support network, a partner, adult children, someone to go through this with. On the upside, the days I go to oncology there aren’t many young people like me. It doesn’t mean they don’t exist… I just don’t get treatment on the same day. I do get those sympathetic looks from all the lovely elderly people who are there… who have the same type of cancer I do… who have potentially a better prognosis than I do. It isn’t easy on them either, seeing me walk in. I find that the hardest thing of all… not that I should really be concerned with a future – goodness I should be concerned with fighting the cancer – but who is ever going to want to be with someone who has stage IV bowel cancer? One bad week (chemo week) where I spend most of the day hooked up to chemo in hospital and then bring home a ‘pet’ chemo bottle that slowly drips into me for 46 hours… so I sleep and do nothing and feel pretty rubbish.
Then a ‘good’ week – where I’m just less tired. And by less tired I mean I can go out for about two hours before I get tired and then come home and have a nap. I can’t work (I am a teacher) and nothing seems to have value anymore. It all feels like busy work. I think that’s the hardest part – the unknown, the changed future, the no control. My life is now a giant waiting game, two months and a scan, two more months and another scan. Waiting for the day the oncologist says it isn’t working or that by some miracle it has shrunk way more than they expected. Regardless of the outcome it will just make another waiting game.
What do people need to know? Check out your number twos, push for answers if you are feeling unwell or notice any changes in your life that don’t make sense.
To the ‘fighters’ (though I’m not really a fan of that term… I didn’t pick this fight I didn’t opt into it) keep fighting. To loved ones and support people, keep doing what you do – keep asking if I need help. Some days I’m too proud to accept it… other days I’ll definitely ask.
To those fortunate enough not to have been touched by any type of cancer in their lives, be aware of it, talk about it, ask questions. No one seems to like talking about bowel movements. Bowel cancer isn’t ‘sexy’. It isn’t high profile. But it is real. It isn’t picky (what cancer is?!). It doesn’t care that I’m female and now 31. It doesn’t care that the person sitting next to me in oncology is 45 or 72, male or female.