I thought I was going to die (Image: Susie Fraser)
In the depths of the rainforest of Borneo, I was overcome by agonizing stomach aches.
It was 2013 and I was on my honeymoon. The previous months, I had visited the doctor about my stomach aches and they told me it could be anything, from my age, to hormones, to IBS, but nothing was done.
So as I curled up in the hotel bed, I promised to see a specialist as soon as we got home.
When we got back to London, I went to the hospital.
There the pain got worse and after an ultrasound and a CT scan they gave me pethidine (an opioid painkiller) and they admitted me.
One consultant explained that they thought she had an ovarian cyst and should have surgery to remove it.
I was shocked, but it all happened so fast: I had surgery the next day. Then the doctor explained that it was actually a benign tumor and measured 16x17cm: the size of a pineapple.
They thought it had originated in my appendix and had exploded, causing the cells to spread to the abdomen.
I struggled to grab it all; Sure, I was surprised, but there was a sense of satisfaction because I heard him explain why he had been suffering for so long. An additional surgery was scheduled eight weeks later to remove my appendix and part of my bowel.
Earlier, the doctor explained that although the tumor was not cancerous in the sense that it did not tend to metastasize to the bones, blood, or brain, it did release cells that produce mucin, a gelatin-like substance. It extends through the abdomen and occasionally through the lungs. It could stick and hide between organs and continue to grow until I die or withdraw.
Mentally, it was tough. I thought I was going to die and I felt very low and depressed.
No one told me what my chances of survival were (Image: Susie Fraser)
The specialist, Mr. Moran, explained that he had peritoneal pseudomyxoma.
I had never heard of the condition, let alone been able to pronounce it!
He explained that pseudomyxoma peritoneum (PMP) is a rare cancer that is thought to affect only one in a million people and usually begins in the appendix.
It is usually slow growing and eventually the cancer spreads to the space inside the abdominal cavity.
No one told me what my chances of survival were. It was a case of having surgery and chemotherapy and waiting for it to work, or dying painfully with my organs crushed from within.
The treatment would consist of removing various organs and receiving a type of heat therapy, but we could look and wait for it to get worse before we have surgery.
This would mean having regular CT scans and blood tests to monitor the growth of tumors and the increase in tumor markers.
I felt a little relieved and satisfied: I could freeze embryos, so my choice to have children did not completely eliminate me.
My husband and I wanted children, but none of us had expected to think about it so soon. I was 33 years old and had just gotten married. However, I was very anxious for a major life-changing surgery, so I was relieved to have had time to continue with “normal” life.
I hadn’t realized how long the fertility treatment would take.
I gave birth to our daughter almost two months earlier (Image: Susie Fraser)
I met the fertility specialist in August 2013, seven months after my diagnosis, and we had our first round the following March, which resulted in the freezing of five embryos.
In late November 2014, scans showed that there were tumors in my spleen, lining of my diaphragm, my liver, my omentum, my ovaries, and the lining of my abdomen / pelvis. When I received this news, I was not surprised but disappointed. I knew it meant great surgery sooner rather than later.
We decided to do another round of IVF. Embryo transfer is a numbers game, so we wanted as many in the freezer as we could. This caused three more embryos to freeze.
I had surgery in April 2015 to remove my ovaries and fallopian tubes, major and minor epiploid, spleen, gallbladder, part of the liver, stripped diaphragm and peritoneum: nine organs in total!
The next day I was given a chemo that stayed in my abdomen for 24 hours. It was the worst 24 hours of my life. I felt like I was dying, I couldn’t really see or speak, the pain seemed to tell me that even though I had managed to survive the surgery, the chemotherapy would end.
My vital organs were broken and I spent 11 days in an intensive care unit. It was six weeks before he finally returned home.
I was on sick leave for six months and my strength was completely exhausted.
I had to get used to what life was like without so many organs. Without gallbladder I could not tolerate dairy and high fat foods. I needed HRT because the removal of the ovaries led me to early menopause.
It was a lot to take on, but I felt so lucky to be alive that I only took one day at a time.
A year after my surgery, blood tests and tests showed that there was no evidence of disease.
This was repeated a year later. In November 2017 I was transferred one of my frozen embryos. When I thought about having a baby, I was excited and hopeful.
At the time, I had no idea that pregnancy would have a toll on my body, but having a baby was something we had been waiting for a long time and we were so happy to be able to try to have one.
No one knew what my chances of getting pregnant were, so we tried to stay positive.
We were delighted when I became pregnant, but I suffered from hyperemesis pregnant until week 18, and then a severe swelling because all my abdominal lymph nodes had been removed. I had to wear compression stockings, keep my legs high, and inject anticoagulants.
Then I contracted an infection, which caused me to give birth to our daughter almost two months earlier, in June 2018.
I will continue to make the most of every precious moment (Image: Susie Fraser)
It certainly wasn’t easy, but overcoming such a rare cancer and becoming a mother was something I never dared to imagine possible five years before. So in my darkest days, I try to remember that.
I have started volunteering for a charity called Pseudomixoma Survivor and I am strong enough to hear about people who have survived for years after being operated on like mine.
More: Lifestyle
The other day, I was sitting by the pool watching my three-year-old daughter Jasmine jump into the water for her first swimming lesson.
She came out with a huge smile on her face, fearless and happy, and I felt incredibly lucky, not only to be a mother, but also to have been here to witness such a beautiful moment.
I don’t know what the future holds for me, but I will continue to be regularly monitored and make the most of every precious moment with my husband and daughter.
As he told Rachel Tompkins
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