A year ago I survived and started living

This is not an easy story for me to tell. Partly because I think I’m still processing a lot of it but also because as they say, time waits for no one and so here I sit on the anniversary of when this journey began having promised myself I would tell my story and I really don't feel ready, but I don’t think I ever will so I’m trusting my gut and taking the leap.

A year ago today, I had the first of what would be six surgeries, followed by IVF treatment and egg freezing, I was twenty six. A week before the first surgery my doctor had found a three and a half kilogram tumour that had enveloped my left ovary and fallopian tube. I called him Bob. No one knew how he had got that big or whether he was cancerous but he had to come out. My doctors were honest, it was huge and they didn’t know how nasty it was so they decided to cut me vertically from my belly button to have maximum access and chance of removing it intact.

I spent the week leading up to the op coaching myself into a positive mindset and refusing to consider the worst. I remember writing that I knew this was a lesson and I accepted that I wouldn’t find out what it was trying to teach me until I had gone through it.
The day arrived and mindful of my parents I stayed upbeat, joking with the nurses, picturing waking up well. One last meeting with the doctors to recap the game plan and I was drifting off into that sinking haze of anaesthesia.

I woke up in agony. My body was on fire, I remember screaming at the people pushing my bed, every tiny vibration was excruciating. They gave me more morphine and more and more until finally I couldn’t feel anything. The next morning was worse, the morphine was no longer working and I was finding it harder and harder to breathe. I was told it was normal, I’d just had major surgery, pain was a part of the plan. The op had gone well, although I had lost my left ovary and tube, they had managed to remove Bob intact without any spillage and sent him off to be tested, but I knew something was wrong. My pain threshold was usually so high - one of the reasons I hadn’t gone to the doctors sooner - so I knew my body was trying to tell me something. Still the physio came and got me out of bed, it was so painful I actually hardly remember it.

By the Wednesday morning I could barely breathe. There is nothing more frightening. I was on oxygen and still being told it would pass. Eventually I threw my toys out the cot and was sent for a CAT scan. Suddenly everyone was rushing, I was told I had a massive internal bleed, my lungs had collapsed and was immediately taken back into surgery. I woke up in ICU with a tube of blood going in my left side and another draining from my right. Over the next few days I came in and out of consciousness, I have flashbacks of machines going off, nurses rushing in and my parents terrified faces by my bed.

Once stable I was taken back to the surgical ward and things seems to be picking up. I’d lost eight kilograms in seven days but wasn’t in as much pain and my breathing was slowly improving. The day before I was due to be released my stomach started breaking out in red splotches. At first they thought it was a reaction to the blanket but it wasn’t, it was an infection. I was put on three different antibiotics to combat it but over the next twenty four hours I got sicker and sicker until I was pretty much constantly dry heaving, which with a wound the size of mine was hell.

The results came back from Bob and I was told it had been borderline cancer; not yet malignant but destined to become so if left alone, just as aggressive and with a possibility of reoccurrence - all I heard was that for now I didn’t need further treatment.
It was Sunday and I realised I was never going to beat the infection in hospital. It’s somewhere you go to have an operation or deliver a baby but it is certainly no place to heal. Think about it, even the air is sick and synthetic, air con being circulated in a building with closed windows. It was finally decided that I would have a better chance at home with a wound nurse far more qualified than the ward nurses in hospital, I wont even go into the way my wound was “cleaned” before I got home, I don’t blame the lovely ladies who were trying to help me, I blame the people who put them in that position without the proper training. Anyway, I was happy, home was healing. My parents, my animals, my friends, they would be my medicine.

Smiling with my feather crown!

My nurse was lovely and did her best, but over the next week my wound began to split open. She did everything to try and stop it, flushing the abscess, cutting away the dead skin but still it opened up until I had a hole about three inches long and two inches wide and deep. It was confirmed that I had a totally drug resistant and potentially deadly infection called MRSA (Methicillin-resistant Staphylococcus aureus). My nurse was confident that with daily care it would heal and the hole would close, eventually. The “eventually” was not acceptable as far as I was concerned, I wanted to get out of bed.

My doctors enlisted a top plastic surgeon who confirmed my fears, it would've taken nearly six months for the hole to close alone. So, I was sent for my third surgery. They cut the rest of the wound open, tried to remove as much of the infected tissue as they could and fitted me with a vacuum drain that I fondly named Val. The next week I went back into theatre to cut away more tissue and replace the vacuum. After three weeks of carrying Val around they finally removed her and closed me up, I’d had five operations and over 10 hours of surgery in four weeks.

With Val the vacuum, up and about.

Those four weeks are still a blur. Apart from when I went in for the operations, I stayed with my parents who nursed and loved me back to health. I’ve blocked a lot of the bad bits out but there were certainly moments of overwhelming sadness and a real fear that I would never stand up straight again, but overall I didn’t dwell, I couldn’t. Instead I remember many blurry moments of happiness and gratitude in those weeks, more so than anything else. There’s nothing like a near death experience to show you how many amazing people you have in your life, and we have many. Despite everything, with the odds stacked against me, I recovered and I have those people to thank for that.
My parents’ strength in the face of their only child breaking right in front of them, was my motivation to breathe, to eat, to live and I clung to their love in my darkest moments. My friends who came over just to hug my mum or nap with me when I couldn't talk. My dogs who instinctively knew how weak I was, lay under my bed everyday, their energies so gentle and protective. I lived for them, for all of them.

I had been planning a huge birthday party for my mum and only had a few weeks after my fifth op to get the final touches prepared. With the help of some incredible friends we managed to pull off a beautiful celebration of love for all that she is and I was strong enough to actually enjoy it with her.
By new year I was dancing again. I’ll always remember that night; emotion and gratitude racing through my veins as a realised the second chance I had been given.

Mum and I at her party.

My journey to this point had started long before Bob came into my life and I had been in enough therapy to recognise and to a certain extend accept and appreciate that as I improved physically, the emotional trauma was catching up with me.
My dad was diagnosed with Multiple Sclerosis when I was twelve and over the years I had become someone who could always cope, who was strong enough for everyone else and suddenly that ability had been stripped away; I could no longer pretend to be fine when I wasn’t and I could see the blessing in that.

A few months before all of this I had taken a new job in Europe which was due to start in February but suddenly and completely I knew that it was totally wrong. Saying no to people is not in my nature but I knew that doing this - saying no, choosing myself - was the universe’s way of ensuring I had learnt the lesson that was slowly beginning to dawn on me; I needed to look after myself so I could look after those I love. I needed to reconnect to and trust my body and I needed to stop living for fear of disappointing people or being alone. I knew that I had made myself sick and I could make myself better, but I had to change.

I had managed to raise quite a bit of cash for my mum’s birthday so when I decided to turn down the Europe job and instead go to India she came with me. Again, the wonderful souls that we are blessed to be surrounded by rallied around us and made it possible for us to go without feeling like we were leaving dad behind - the humid heat in India was sadly just not an option for him. Since my dad’s illness has progressed my mum has become his primary care giver and we had never really had time just the two of us so it was a very special opportunity.

We spent three of the best weeks of my life healing and exploring and getting to know each other on a level I didn’t know existed. By the end of the first week I knew I needed longer so when mum left I moved to a small homestay in the city and spent the next five weeks coming to terms with all that had happened and finding myself more and more grateful that it had. By the time I left I had done a course in Ayurvedic massage and nutrition and qualified as a yoga teacher. I was stronger than I’d been in years.

Southern most tip of India.

I came home at the end of March with a new found respect for the universe’s plan and a burning desire to find my place. I missed a period and was reassured that my body was just adjusting but when I still hadn’t had one by the beginning of May I knew something was wrong. My experience with the first lot of operations had taught me that my body already had all the answers, I just needed to listen - I wasn’t going to ignore it again. So I called my doctor and finally got an appointment. There on the screen was another tumour, about the size of a grapefruit and firmly attached to my only remaining means of having children which I was told would have to be removed.

It was an incredible experience to observe myself going into fight mode again. We are amazing beings when it comes down to it, so much more able to adapt and evolve than we give ourselves credit for. At the beginning of that day if you’d told me you had to reopen my scar - I still flinched whenever anyone came near my stomach - I would have lost it. Yet somehow my spirit took over and within hours I wanted them to open it, I was on board with the plan and had let go of the sadness and embraced my remaining possibilities. I knew instinctively what this had been sent to teach me. Although I had learnt not to force things I hadn’t yet learnt not to rush them which I could recognise I was already doing with the project I had undertaken since arriving home. So this was my lesson now; slow down and believe enough to let it happen instead of making it happen.

The op went far better than anyone could’ve expected. Not only were they able to save two thirds of my ovary but they found and removed a huge amount of scar tissue that had trapped a part of my bowel to my abdominal wall. The relief I felt to still have what I had by then named Oliver the ovary was indescribable. The next few days in hospital were hard, I developed a virus the symptoms of which were very similar to the beginning of the infection last time but four days later it was diagnosed and I had made enough progress to go home. The recovery was a walk in the park in comparison to the last time and three weeks later I was in the Eastern Cape, practising yoga and slowly building my strength.

As soon as they told me I still had at least a part of my ovary left I had decided to do IVF treatment followed by egg freezing. I want children, my parents struggled to have me and I also want to live a full and healthy life, so I decided to give myself an option that removed the pressure when the time came and also meant that if Oliver should miss behave again I could have him removed without the attached loss of not being able to have biological children.
Anyway, I had to inject myself with various hormones for ten days, the effects were not pleasant to say the least and 4 months later I’m still dealing with some of them but I can feel my body finally normalising again and most importantly, the extraction went well and I now have 7 frozen chances.

I’ve travelled more since all this has happened than I ever had before, in fact I’ve hardly been home. I think on the one hand I’ve been given an understanding of what it means to be alive and make the most of it, but if I’m honest I’ve probably been running away from having to really process everything that happened which is why writing this has been like getting blood from a stone and very cathartic at the same time.
This whole experience has changed my life in every way imaginable and I understand why that change has left question marks that still need answering, but there were some things that changed so quickly and completely I hardly noticed, my values for example shifted the second I started praying in hospital. All I was asking for, on repeat, was a chance to get out of the bed so that I could love, be loved and climb mountains. When it came down to it for me, loving people, having real connections and helping people live fuller lives in the process was all that mattered. That and being alive enough to feel my muscles burn again. That’s what I lived for and that’s what I’ll continue to live for.

It’s taken me a full day to get this out even though I’ve been thinking about it for a long time, it’s much longer than I’d hoped but I couldn’t shorten it more than I have, you wouldn’t have been given the full picture. If you’re still reading, thank you. Why am I telling you all of this? I may not have my life waxed across the board but I can honestly say that I am at peace with the kind of person I am and I know that if it wasn’t for each moment that has led to this one I wouldn’t be that person. And therefore, no matter how hard or how painful it may have been, I have to be thankful. And I am, I thank God that this happened to me every day. I truly believe that I have been given the insight that people get when their lives flash before their eyes, but I get to live. And maybe a part of why I got to live was so that I could share this story and if that can inspire people to live each moment to the fullest, think differently, believe in more, love deeper and live more authentically, I can only say my actual soul will smile.