I lost my mum to a brain tumour 8 years ago when she was in her 50s. I did think that watching her deteriorate over the course of about 9 months was the worst thing that would ever happen to me; despite the story I’m about to tell, I still think it is. There has been no genetic cause identified for either of our cancers, so looks like a case of really, bad luck.

I was diagnosed with stage IV rectal cancer in early January 2021, I was 29. A large tumour was found via colonoscopy with a follow up CT scan identifying 2 further suspected tumours in my right lung.

I had presented to the GP in January 2020 (a full year before diagnosis) with a change in bowel habits. I had only been able to pass tiny stools for about a month. I was sent for an x-ray and diagnosed with faecal impaction. It wasn’t long after taking the strong laxatives prescribed that my symptoms returned so I was told that I needed something stronger which I tried with a similar outcome.

When covid lockdowns commenced I was anxious to return to the GP. I tried at home techniques to relieve constipation until June. By then I was frequently finding blood in the toilet bowl. This time I tried a new GP for a second opinion and was diagnosed with anal fissure. I was sent away to take ever increasing amounts of Movicol and use some ointment to reduce the “spasming”. The spasm ointment almost made me faint a couple of times so the GP had me take a lower dose but after finishing the course my symptoms were still there.

Something didn’t sit right with me as I ate a high fibre diet, was well hydrated and active. Therefore, I couldn’t understand how I’d become so constipated. I started to blame myself for causing this by taking iron supplements when I had been feeling low in energy or for potentially eating contaminated foods whilst eating out. being a diagnosed coeliac. For context of my state of mind, in 2017 I had presented to a GP in the U.K. with abdominal pain and a rash on my stomach but because I had just been diagnosed with anxiety, she attributed my symptoms to that. Since then, I’ve found it difficult to distinguish between what I should really be worrying about with my body, and I’ve found it more difficult to advocate for myself as I never trust I will be believed.

Finally by October 2020 I was experiencing severe abdominal cramps on an increasing basis and went to another GP to get checked out. She was unable to explain my symptoms. She took everything so seriously and left no stone unturned, referring me to a specialist. I was booked in for a colonoscopy from there (although the specialist later told me that he never normally would refer someone so young for a colonoscopy until he had monitored their symptoms for 6 months, so I was lucky he put me straight through)!

The colonoscopy prep had made me anxious as I didn’t feel like my system had been properly cleared. It made sense when I woke up and was told that there was a large mass blocking the passageway. I was alone in recovery being told that they had found something very sinister looking, most probably cancer.

There was no beating around the bush or waiting to have a support person with me, it was very surreal, and I don’t really think I could process what was happening at all. They needed to keep me a bit longer for a CT scan and then I could go home and would be referred on to a surgeon. I thought that was quite positive news as I’d just get the mass removed and that would be that.

It was the bowel surgeon who let me know a few days later that the scan had showed probable spread to my lung and the biopsies had confirmed that it was cancer in my rectum. For some reason I had gone to that appointment on my own as I just assumed that I had to in the context of covid. Everything hit me and I imagined that stage IV cancer meant that I didn’t have long to live, and I’d have to go through something like what my mum did (that was my only experience of cancer back then).

When the surgeon started talking about the risk to my fertility I was confused as I had never considered the damage that cancer treatment could do to the reproductive system…and was he saying that there was a chance I could survive this and have a kid through IVF?!

After freezing some eggs I commenced 30 rounds of radiation followed by a couple of rounds of chemo in between that and my surgeries. Radiation hardly slowed me down, so I enjoyed celebrating my 30th and the wedding of some of our best friends in style still during treatment! My first surgery removed 2 Mets from my lung (biopsies then confirmed that these were secondaries) and the second surgery removed my rectum and lymph nodes with clear margins.

I have a temporary stoma and am now partway through my further 6 rounds of chemo. The chemo infusion caused pain and blood clots in my arm, so I now have a port put in for my remaining rounds. I had a bad experience having the port put in as I had a reaction to something just after the procedure but even so, now having had my first infusion with it, it was so worth it!

Chemo has been the most challenging aspect for me through all of this. My peripheral neuropathy has been quite debilitating, I’ve already had my chemo dose lowered once as I couldn’t tolerate it. My mental health has really suffered as well. Cancer can take your mind to dark places and most people around you can’t comprehend the full scale of what you’re experiencing.

I’m from the U.K. so the vast majority of my friends and family are stuck on the other side of the world, although my dad was able to be here for 3 months during my surgeries by getting an exemption to travel. Strict lockdowns in Victoria have also meant that I haven’t been able to have my local friends or support network around me much either…luckily, I live with my devoted partner and have him here every day to get me through.

My workplace has gone above and beyond to continually adapt to my developing needs. I’m not sure how I would’ve coped without the practical and emotional support of my close colleagues. I’ve also felt a lot of virtual love from friends and family around the world throughout this and am grateful for the many beautiful gifts I’ve received. A big turning point for me was finding other young stage IV cancer patients on Instagram which made me feel a lot less alone. I’m not a big social media person so I don’t chat with them or anything but just seeing their posts helps me enormously!

The plan is for me to complete my chemo and have stoma reversal surgery before the end of 2021. After that I will be closely monitored in the hope that the cancer doesn’t come back. Although I am looking forward to closing this chapter, I know that the period after treatment will also be difficult with pressure to get on with life whilst dealing with the trauma of this year, having menopause at 30 and not knowing whether I’ll be able to have children on top of anxiety about the cancer returning. The resilience I’ve shown this year assures me that I have the strength to deal with those challenges as they come and the patience to allow myself to heal at my own pace.

My advice to anyone experiencing symptoms is that you can never be too young or seem too healthy to have cancer. I’m struck by the number of medical professionals I come across who express shock that someone my age could have cancer. Young people have to push harder for a cancer diagnosis to offset these wrongly held beliefs, if something isn’t feeling right don’t ignore it or let a GP fob you off!