"When you have a rare disease, you face two battles: one is the illness itself, and the other is living in a world where so few people know what you're up against."
I always prided myself on being unique for not following the crowd and marching to my own beat in life, but I would never have thought of myself as being 1 in a million. Yet, my diagnosis at the end of 2020 made me 1 in a million. This is my story...
In March 2020, my fiancè and I decided to postpone our wedding due to the pandemic and our immediate families residing in the U.K. Instead, we decided to try for a baby. We were still trying to get pregnant six months later, and in October 2020, we visited the fertility clinic. Our specialist started her investigation, which included blood tests, various analyses, and a pelvic ultrasound for me. My pelvic ultrasound revealed complex fluid spread all around my abdomen. Our specialist recommended a C.T. scan to rule out a rare form of cancer. Unfortunately, instead of ruling out this rare cancer, on 3rd December 2020, I was diagnosed with PseudomyxomaPeritonei.
Pseudomyxomaperitonei (PMP) is a rare cancerous tumour that grows slowly and causes a build-up of mucin (a jelly-like substance) in the abdomen and pelvis. PMP often starts in the appendix but can also begin in other organs like the large bowel and ovary.
Immediately following my diagnosis, I was referred to a leading specialist in this form of cancer in Auckland. The initial consultation was heart-breaking. The go-to treatment for this type of cancer was debulking surgery and heated chemotherapy. The debulking surgery would last between 12-20 hours and has coined the nickname 'Mother of all Surgeries' (MOAS). It would include the removal of my appendix, spleen, gallbladder, ovaries, uterus, and possibly part of the bowel if the disease spreads there.
After the debulking surgery, patients had 90-minute heated chemotherapy. We were devastated. I had next to no symptoms as this is a slow-growing cancerous tumour. This procedure would leave me infertile, and our chances of starting a family were non-existent. Our immediate families were on the other side of the world and had no chance of coming over due to the ongoing pandemic.
Fortunately, my specialist listened. He listened to our wishes, he took advice from other specialists overseas, and we started my fight against this terrible illness with an initial biopsy surgery on Christmas Eve, 2020. Luckily, I was allowed out on Christmas Day at lunchtime.
In early January, I had a colonoscopy which fortunately ruled out any spread of the mucus to my bowel. The biopsy was sent off to pathology, and the cancer grade would determine my subsequent treatment.
Meanwhile, we had applied for a critical purpose visitor visa for my Mum to come over to support us. Immigration N.Z. was swift to grant this visa with the supporting documents from my specialist. Gaining a spot in MIQ was the biggest hurdle. A month after my biopsy, we received the good news that my cancer was low-grade. This meant we had more options.
My specialist here in N.Z. contacted his former colleagues in the U.K. who had more experience with this type of cancer. They recommended trialing a smaller surgery first, which involved the removal of the appendix, suctioning out the mucus, a wash down inside with saline solution, and a much shorter recovery time in hospital.
This smaller surgery took place in February 2021 and was successful. It gave us a chance to preserve my fertility. However, this type of cancer will reoccur if it has places to come back to and if any cancer cells were left lingering in places in my abdomen, so for many years, I will be on 'watch and wait,' which kind of feels like I am living on borrowed time. Watch and wait means ongoing blood work to check my tumour markers and regular C.T. scans.
I had my six-month check-up in August 2021 and my one-year check-up in February 2022, both of which showed 'No Evidence of Disease' (NED). My Mum was able to join us just before my more minor surgery and stayed here in N.Z. for a year supporting us.
In November 2021, my fiancè and I completed our first round of IVF, and we had one healthy embryo frozen. We are currently completing our second round of IVF, an emotional rollercoaster of a journey in itself.
I will always be grateful to my specialists, the doctors and nurses here in N.Z. who went above and beyond to help cure me and give me and my fiancè another chance at having our own children. Likewise, we are very grateful to Immigration N.Z., who went out of their way to make sure we understood the process and submitted the correct documents to smooth my Mum's visa process.
Every time a check-up comes around, I feel that 'scanxiety'. I don't know what the future holds for me, but I have learned to take each day as it comes. Inspirational quotes helped get me through each day, so I thought I would share a few to encourage others out there who are facing a rare disorder.
"We don't know how STRONG we are until being strong is the only choice."
"One day, you'll tell your story of how you overcame what you're going through now, AND your story will become someone else's survival guide."
PMP is my story, and it will be someone else's too. My understanding is that in N.Z., there are 6 of us living with PMP, so the stats are pretty accurate- 1 million.