“Growing up, I was always terrified of getting ill, and even worse, someone I love getting ill. It would often consume me. I used to share a room with my two little siblings, and I remember being eight years old and checking to see if they were breathing throughout the night. There was one thing that scared me more than anything, and that was cancer—I couldn’t even say the word.
At 13, I started to get pain around my abdomen. This went on for about 6 months. I was back and forth to the doctors and had to stop doing all physical activity, including dance which I’d just started competing in. At first, they thought it was growing pains, but something in me knew it was more than that. It felt like the things I’d been worrying about were happening to me.
Eventually, after the pain got worse, a scan showed I had Polycystic Kidney disease, a condition where cysts fill the kidneys, enlarging and scarring them, and eventually leading to failure in the future.
My teenage years went on, my kidneys were stable, and pain meds helped me live a normal life.
Then I was hit by something else, something I’d always feared. I was diagnosed with cancer at 17.
The thing is, this time it was completely unexpected.
I was making a cup of tea for me and my mom when she started looking at me funny. ‘What’s that shadow on your neck?’
I put my hand to my neck and there was a huge lump. You know what, after all that, cancer wasn’t my first thought!
The next day in the doctor’s office he went through the possible causes and put the lump down to my thyroid. He said he’d make an appointment for me to see a specialist, but it could take a month or so.
In the meantime the lump grew, it grew to the point where I couldn’t bend my neck down. I had an appointment with my kidney specialist the same week. He went through all the usual checks, and before I left, asked if there was anything else. ‘Other than this lump, no problems.’ I explained. Well, something didn’t sit right with him because within a few hours, he had sent me to a bigger hospital to have a biopsy on the lump.
This was on a Friday, and I was told to see the hematology for the results on Monday. The funny thing was it still hadn’t clicked. I remember getting a hematologist and gynecologist confused. I spent the weekend wondering why they were sending me to see someone about my vagina because of a lump in my neck!
My mom, on the other hand, had her suspicions. Deep down she knew it was cancer, but she was praying it wasn’t—too scared to say to me until we had the results. I didn’t know she had spent her weekend crying in her room.
So, Monday came, and I realized as I sat in the waiting room that I was in a blood clinic and not a gyno. As we walked into the doctor’s office, my mom started to cry, and it was all a blur. Honestly, all I remember is him talking about hair loss, life expectancy, chemotherapy, and an operation. ‘So, what is actually wrong with me?’ I asked. ‘It’s blood cancer. You have two tumors in your chest, 23cm and 8cm. It’s called Hodgkin’s Lymphoma.’
I couldn’t talk, I couldn’t cry, all I could think was HOW did I miss this.
My treatment was full on. I had four different types of chemo every two weeks for 6 months. I lost my hair, I went down to 84 pounds, I had a tube in my neck and one in my hand, I had sepsis, and I came close to dying. It was a hard fight and turning 18 wasn’t how I’d ever imagined entering adulthood, but it changed me. I grew on so many levels. I gained self respect and attitude. Cliché as it is, you really do realize that life is too short.
So, at 18 and in remission, I booked a one-way flight to Asia with my partner. Even whilst traveling the most beautiful countries in the world, it was hard to be carefree. Cancer always weighed heavy on my mind. There was a lot of time to think about what I’d gone through and a lot of time to worry about it coming back. Then, the pains started. I had excruciating stomach cramps I can only explain like labor pains; I could even see my stomach contracting. They were happening daily, and I was scared and felt helpless without my doctors behind me.
My auntie who lived in Australia booked me a flight from Indonesia. As soon as I got there, I had an appointment with the gynecologist. I had an IUD put in before I left to travel. My chances were next to zero of getting pregnant so soon after chemo, but I wanted some control over my periods. She took a look, and was between my legs holding my IUD. It had collapsed in and was half out of my cervix. My body had spent the last 6 months rejecting it and contracting it out.
The pains stopped and life went on. I found a job in Australia and started to find my care-free self again, but there was one nagging thing. It had been two months since my IUD had come out and I still hadn’t stopped bleeding. I was feeling dizzy and exhausted. That night on the phone to my mom she said, ‘You can’t be pregnant, can you?’ ‘Of course not,’ I laughed. She told me she just had this feeling. I promised her I would do a pregnancy test and that was that.
Next thing I know, I’m in the doctor’s office with a positive pregnancy test and a little 10-weeks fetus flickering on the screen next to me.
Shocked wouldn’t even come close. In my heart, I knew this was something special. I got pregnant spontaneously on the IUD after chemo. Looking at that little flickering heartbeat, I already knew something very special was going to come of it. My health took a big dive after finding out I was pregnant. My kidneys couldn’t take the added pressure, and my body just couldn’t handle it so soon after chemo.
I needed to be close to my family, so my partner and I made the decision to fly back home.
Things progressively got worse. I was 20 weeks by now and already on a high dose of blood pressure tablets. I was constantly dizzy and seeing stars, and my bump wasn’t even showing yet. Each doctor or midwife I saw moved me on to the next. My blood pressure was still high, but I was 24 weeks and my bloodwork was OK, so I was always sent on my way. By 27 weeks, my blood pressure was dangerously high. My blood was showing leaking protein and kidney and liver problems. Finally, they started to take me seriously.
So, I was admitted on bed rest in our local hospital 45 minutes from home with the plan to control my BP and get me to 34 weeks, giving the baby a better chance of survival. But within a matter of days, things got a lot worse. I had been in the hospital a few days now and had a scan booked early one morning, so I left my room and headed to the scan room down the hall.
I sat there alone as the two sonographers were doing their thing. I could see them measuring the baby’s legs, head, and arms. I could also see the measurements coming up on the screen as 21-22 weeks. The baby wasn’t moving and the ladies were whispering to each other. All I could hear was, ‘She’s stopped growing.’ ‘I can’t see the heartbeat.’ ‘No hope.’
I jumped off the bed half way through the scan and ran through the hospital back to my room. I sat on the floor and cried. I was shaking, scared, and confused. I called my partner and then my mom to tell them she hadn’t made it whilst trying to comprehend what on earth had just happened. An obstetrician came in clutching a scan photo with the sonographer who was looking for me. She told me we needed to do another scan to be sure of what was going on.
She took me into a side room where she discovered a faint heartbeat and I watched my little girl start to move slightly on the screen, very jittery movements. She explained I had severe preeclampsia. The flow through her cord had reversed and was now going from her to me. She was basically starving of oxygen and had slowly been for weeks. She was no longer growing and I was, in theory, being poisoned by my own placenta. We didn’t know if we had minutes, hours, or days, but we knew we had no more. I was told she would weigh no more than 1 lbs.
Later that day, I was rushed from my local hospital in an ambulance, at exactly 12 midnight on New Year’s Eve to a bigger hospital 4 hours away where they have a specialist unit for the tiniest, sickest of babies. We were told if Nellie had any chance of survival, I would need steroids and magnesium pumped onto me to strengthen her lungs and help her underdeveloped brain get ready for delivery. Ideally, this happens for 48 hours for maximum impact.
I wasn’t allowed off my bed, and I had to stay on my right side to help the cord flow and not to compress it. It was the most agonizing, painful, intense 30 something hours of my life. Then early on the morning of the 2nd of January, the decision was made to deliver.
It was so rushed that I could feel the cut, however, it was the worst of my worries. I was hardly conscious as my blood pressure was so high. Nellie was born to Dancing in the Moonlight and a big rainbow covered the hospital that morning as she let out a little squeak before being rushed off to intensive care. I remember very little of the next few days. I spent the next 3 weeks recovering in hospital. I’d gone into liver and kidney failure and was having mini seizures.
Nellie was a teeny tiny 1 lbs 6 oz. She spent 3 long months in two different hospitals and 8 months connected to an oxygen tank. Unsure if she’d ever walk or talk, she fought chronic lung disease, two brain bleeds, sepsis, and had multiple blood transfusions and countless other obstacles.
Now she’s 5 and as bright as a button, she has an absolute heart of gold, she’s the most inquisitive person I know, and just an all-around glimmer of hope and light!
I completely lost myself along the way. I’ve been on medication for anxiety ever since. I think I’m just always waiting for the unknown because I know how unexpected life can be. That is a curse and joy in and of itself. I’ve since discovered pole dancing, and it’s been a huge step in my finding some self respect and self love, trusting my body, and regaining my youth.
Since then, I gave birth to a beautiful second daughter. I may not be the luckiest, but I am truly blessed to be a momma to two little girls.”
This story was submitted to Love What Matters by Georgia Sage. You can follow her journey on Instagram. Submit your own story here.
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