Cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs doesn’t just affect your body. It’s not just cancer in your body, it’s cancer on your relationships. When I first got stabbing pain in my right side, I was living in Townsville and I saw a GP. They said it was a stomach ache or a grumbling appendix. No stomach ache I’ve ever had stopped me from moving for three days, but they’re the doctor, they know best.
When it happened again, I ignored it, wrote it off as stomach pain. When it started happening every couple of months, I started getting concerned. I was living in Rockhampton with my family and my Dad made me see a GP again, he said it’s not a stomach ache. The GP said it was a grumbling appendix, possibly about to burst and despite the lack of fever and vomiting, he sent me to the hospital. They said there is nothing in the ultrasounda type of medical imaging that uses soundwaves to create detailed images of the body , I’m not sick, can’t be appendicitisinflammation of the appendix (despite them not actually being able to even locate the appendix, as it was tucked under my bowelportion of the digestive system that digests food (small bowel) and absorbs salts and water (large bowel); also called intestines – pretty common thing to happen). They tried saying it might be gynaecological or an infectiona condition where harmful pathogens, such as bacteria, viruses or parasites, have entered the body, then implied I might be making up the pain in order to get pain killers. They sent me home.
A couple of years later, in 2013, I was 27 years old. Just moved to Brisbane, was 3 months into a new job and I had was studying another undergraduate degree full time. My parents lived 800 kilometres away, but I had other family around (aunties, uncles, cousins). The pain was now every 6 to 8 weeks. I had lost faith in doctors figuring out what was wrong with me. But I went to a new GP at my bosses urging. He ordered test after test, scan after scan, because he agreed, this pain is not normal. Finally, I got sent to the hospital. After days of waiting, they did an exploratory laparoscopya minimally invasive surgical procedure that uses small incisions to access the body for procedures, also known as keyhole surgery. They came to my bed and said “we found something, we don’t know what it is – you need to go see a specialist”. Three weeks later, I had my next surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence and they confirmed I have a rare cancer. It’s called Pseudomyxoma Peritonei or ‘PMP’. If you don’t know (which let’s face it, you don’t know about unless you are in the medicinal field or you or a loved one has/had it), it’s usually a tumoura tissue mass that forms from groups of unhealthy cells started in the appendix which has produced “mucin” which has then spread throughout the peritoneumthe membrane that lines the abdominal cavity.
Most people I think are scared of the word cancer, but by this point I was relieved that doctors were finally believing me when I said I was in pain and that the “I don’t know what it is inside you” wasn’t some parasitic twin or something. The doctors were finally finding the thing that I had been talking about when I said something was wrong.
Little did I know just how much my life changed in that moment. That one moment and suddenly everything made sense to me. But also shattered the world of myself, my family and my friends.
After consoling my aunty (she was with me when they delivered the news – very hard for her, she had not long lost her husband to cancer), I rang my parents to tell them. My Dad didn’t want to believe it. He kept saying before this “it’s not cancer, stop being dramatic”. My Mum just cried. It was hard to wrap our head around something that wasn’t like normal cancer, not found in scans or bloodthe red bodily fluid that transports oxygen and other nutrients around the body work, and it’s not staged. We tried to make it fit into the common cancer scales and it didn’t fit, like trying to force a square peg into a round hole. My ex-boyfriend said I “need professional help, I don’t know what to even say to this”, and I didn’t hear from him again. Given that I was so far away from my family, it was very hard for all of us.
When I got home, I did what I do best, I researched it. Being a rare cancer, the information was few and far between and a lot of it was outdated. It scared me, at 27 to read that long-term survival was considered 5 years. All the research was hard to believe and understand. I followed my Mum’s advice weeks later and contacted the hospital, asking if there was anyone I could speak to who had had PMP. Through the hospital I met some other patients. Amazing people who got me through the next two years of surgeries and scans and tests. We talked on the phone, we met in person for coffee. They became like family. They understood in ways no one else could. I talked to friends (or people I thought were friends) and they couldn’t understand, couldn’t wrap their heads around it. I lost “friends” because they didn’t know how to pick up the phone and say something as simple as “how are you”. They didn’t know how to talk to me, so they didn’t. If they can’t talk to me or help me through such a rough time in my life, what type of friends are they? They weren’t – that was my conclusion, so I axed them out of my life. The worst part of having a rare cancer is the “I’ve never heard of that!” or “is that a real thing?” Horribly, I even overheard one person I worked with (behind my back of course), say “I doubt it’s even real, I bet she’s just making it up”. Who would make up this horrible disease?!
But other friends really surprised me by stepping up and being amazing. One friend would calm me down when I was focusing on superficial things (sometimes the treatment, the surgeries, the sheer enormity of the whole thing was too much so I focused on stupid things like having scars and what clothes to wear). He would tell me I was being stupid and would calm me down like no one else could – and he didn’t even live in Australia at the time! Another friend sent me messages a lot and sent care packages with stuff for after I was through this.
In addition to getting closer to these existing friends who stepped up, I found myself gravitating more and more towards other cancer patients. When my doctors told me I had to move home with my parents as I would be unable to look after myself after my MOAS (in PMP circles, our big surgery is called “Mother of All Surgeries”), I would recover and build my strength by going for walks with a neighbour who was also recovering from cancer.
I talked to my PMP family in Brisbane, and got very close with PMP Survivor Charity in the UK. They helped a lot too. Sadly, being part of that Facebook group was helpful but also scary as you heard of so many deaths.
I’m now looking at 5 years NED (“No Evidence of Disease” – no such thing as remissiona reduction or absence of symptoms in disease, can be partial or complete for PMP patients), I find I still highly value the friendships with my fellow PMP patients. I love my little PMP family. And sadly, it continues to grow. I help as many as I can through it. I have been contacted by a number of newly diagnosed patients, and I talk them through it, just as my PMP mates did for me.
And my friends who stepped up when I was sick? They are like family now. We are closer than we ever have been and I will never forget how much they helped.