I am a cancer survivor. You might know this about me. This is my story.
When you’re in your twenties, you’re filled with a special kind of pig-headed obstinacy about the world. At least, I was. I had all these wonderful, optimistic and sunny ideas about things I wanted to do, how I wanted to help people – especially children and teens. I’d spent some time at a private Bible college earning myself a theological qualification to do exactly that – a major in Christian education. I was really driven and energetic, involved in children’s camps, events, just bounding along with my own youthful energy…. which came screeching to a halt one day when a nursing friend offered to feel my glands because I’d complained of a sore throat. She wasn’t convinced the lump in my neck was a swollen gland. ‘Go see the doctor,’ she said, with a puzzled frown. It’s just a cold, I told myself, but went to see the GP anyway. The family doctor I went to see attended church with me and had rooms in the hospital where my sister had been born about fifteen years earlier. I’m not particularly fond of hospitals – it’s that SMELL, but the day my sister arrived in our family was a really happy occasion for me. So I didn’t mind THAT hospital too much. I’d been there often enough for doctor’s appointments. It was familiar and mostly safe.
The appointment didn’t go the way I expected it to at all. To her credit, my GP was kind and very gentle. She explained the lump at the front of my throat was not normal and she would have to refer me to the government hospital for a scan, seeing I didn’t have a medical aid. She mentioned they’d need to check for malignancy. Malignancy? How did we get from a sore throat to MALIGNANCY in such a short space? She fussed about with a few calls and administrative things, and finally wrote a referral note for me – with a date to show up at a nearby public hospital. I’m not sure what I did when I got home, but knowing myself and the stage of life I was in then, I probably took a deep breath and held on fast to my positivity. That evaporated fairly quickly the morning I walked into the outpatient waiting area at the Karl Bremer hospital a few days later. Just a sea of people, some clearly unwell, and a frightening and overwhelming impersonal admin system: report to the front desk, get your card, wait your turn… and wait and wait. And wait some more. And all you have time to do is stare at your feet, study the floor tiles and THINK.
This can’t be malignant, I am only 28. TWENTY EIGHT. I have plans, I want to see the world, I want to travel, I want to meet cultures and experience LIFE. This place is cold and clinical, the seats are hard, why is it taking so long? I’m all alone. My family didn’t take me seriously when I told them about this. What happens if they find something there that shouldn’t be there?
And I sat and sat and sat. For hours.
Eventually I was called in to see a doctor, and I don’t remember much, but I know I had to return to Karl Bremer a number of times over a period of a few months while they drew blood, did a biopsy (badly), had me return on another day for the results and on and on it went, almost torturously. Have you ever had someone stick a biopsy needle in the front of your throat before? It was TERRIFYING and the young doctor who performed it was visibly uncomfortable and lacked confidence. It did not help matters. The biopsy came back negative. No cancer. I remember one visit, waiting in a room for a doctor to return, wondering if I’d live long, convinced I’d never have children. I felt so disappointed and let down. Life had let me down! Here I was, so young, and trapped inside the public health system, shunted around from one doctor to another, having to wait weeks for the next appointment. The uncertainty of it all frayed my nerves. All I had managed to gather at this point was that I had a lump in my thyroid and they were trying to figure out what it was and what to do about it.
As the weeks wore on, I noticed a slowing down of my energy, my inability to lift up my arms or pick up heavier items. I became increasingly depressed. I had to endure bad, but well-meaning, advice from people around me: ‘Don’t let them cut out your thyroid!’ ‘You need to go on this RAW FOOD DIET!’ and really, all I wanted to do was crawl into a hole and sleep and sleep. I worked half day at the church office, and at lunchtime, I’d go home and do exactly that. Sleep for hours and hours. And wait for my next clinic appointment.
To stay sane and to move the focus away from my physical and emotional misery, I started studying Italian – and I prayed that if God would spare me from this ordeal, I really wanted to realise a childhood dream and visit Italy. I bought a big map of the country and regularly spread it out on my living room floor of my small flat so I could study the names of all the cities. I wrote verb conjugations on cards and stuck them all over the place. I listened to Italian music, watched whatever Italian movies I could find, started writing to an Italian penpal. It was a beautiful distraction.
Finally, after yet another frustrating encounter at the clinic, I argued with the doctor there – because by then, I had realised I was really sick and they weren’t helping me and the lump wasn’t getting smaller. I was on thyroid hormones, but it didn’t seem to make a dent in my wellbeing at all. Exasperated, the doctor finally made an appointment for me for a scan at the main academic hospital. And so I went.
The nurse who prepared me for the scan at the nuclear medicine department was a complete sweetheart and was kind and made jokes. I was a tiny bit horrified to watch the iodine they’d injected me with snake its way along a vein in my arm. I looked away, I felt sick. I don’t even remember how I got there, because I know I was alone, I had no one with me – so someone must have dropped me off, I didn’t have a car at that stage. The scan itself was a horrifying exercise in fighting claustrophobia – this big white THING hovering over you, big enough to crush the life out of you. The results did not take too long. The doctor in charge, factually and without sentimentality (which I was actually grateful for), pointed out the areas he didn’t like. I made him explain it to me again and again. It looked like cancer.
A diagnosis. The axe had fallen, and now… well now I was in significant trouble. And I was only TWENTY EIGHT. I was sent for another biopsy, this time it came back positive for cancerous tissue. And then things picked up a little in pace. They had ascertained the growth was on the left and was 2cm in diameter. I was scheduled for surgery.
Then, suddenly, everyone in my world ‘woke up’ and started worrying about me and started coming along to my appointments and helping out. I felt it was too late. I was so angry.
My first surgery … it’s even difficult to write about it now twenty years later. The hospital ward was not clean, the toilets were filthy. I had to bring my own bedding. I was terrified my few belongings would go missing. I remember the day they took my glasses from me as they wheeled me off to theater. I remember lying on a very slim operating slab, that they couldn’t find a vein in my hand for a drip and went after one in my foot and the pain of that. I was so scared, frightened out of my mind. I was too young and I could not understand or absorb half of what I was going through. All I could think was, I did something wrong and that’s why I have cancer. I ate wrong. My lifestyle must have caused this. Something. Me? I am to blame for this.
When I woke up, I knew something wasn’t quite right. I choked on the food they brought me. I couldn’t speak, my voice was hoarse. I just wanted to go home, I just wanted my bed, my familiar things. I was sent home eventually but with a follow-up appointment with an ENT because of the hoarseness and inability to swallow. I lived off drinking yoghurt for six weeks until my next surgery. Because, yes, I had to go back for them to remove the rest of the thyroid, but I’m skipping the ENT appointment.
The ENT appointment, yes. On the one hand, it was an interesting visit – he sent a small camera down into my throat. But no one had warned me not to eat anything before the visit because of the anaesthetic they use. He showed me the visuals on the screen, but after an initial bit of interest, I just didn’t want to see it anymore. I felt traumatised. I had somehow thought the surgery would be an end to my miseries and I sensed they were far from over. I went home and, well, I didn’t even make it to the toilet fast enough before throwing up violently all over the bathroom floor. I cried and cried. Once again, I was all alone, I could hardly eat anything, and here it had all come up plus I had to clean the mess myself.
Then, the pathologist’s report came back – definitely cancer. A ‘well-differentiated follicular carcinoma’. One thing I realised is that if you can name your challenge, define it, give it a label, you can do something to wage an intelligent war against it. So, I contacted the local CANSA office and they faxed over a thyroid cancer brochure. This was before the internet was an actual thing. I learnt of the different kinds of thyroid cancers and I read up on treatment options – radioactive iodine and isolation for a week. A friend of the family was the social worker attached to the cancer ward at the hospital I’d had my surgery at. I reached out to her and asked if she’d show me where you stayed while you had this treatment. I was trying to be brave, and honestly, I had no choice. The luxury of a collapse just wasn’t on the table. I couldn’t fathom how I would cope with a week’s isolation, I already felt so isolated.
I was scheduled for a second operation. And believe me, this was even more terrifying for me than the first – because, now, I knew what was ahead of me. This time round, however, the senior doctor in charge of the head, neck and mammo clinic did the surgery and when I woke up from it, I knew instantly he’d done a very good job. I could swallow my lunch (to this day I don’t put my lips to drinking yoghurt).
I had a follow up consultation with all the doctors that had worked on my case a few weeks later and the news was so momentous: come back for a check up in six months. That’s it! No radioactive isolation room! Why? Well, being only TWENTY EIGHT counted in my favour in terms of a prognosis, plus the fact that I was female. I felt elated that God had made me a girl. And when I told my father who had been waiting outside, I was so thrilled, I just rattled it all off, all this good news. And walked off down the corridor and realised a few seconds later he hadn’t followed me. I turned around and he was slumped against the wall, crying. I was so shocked. I’d never seen my father cry in my entire life, not ever. ‘I thought I was going to lose you,’ was all he could say.
Somehow, I had dodged a very big bullet and to be honest with you, I still don’t get how or why. It wasn’t exactly plain sailing afterwards. I struggled for many years with energy and to get the right dosage for the thyroid hormones. I also lost my singing voice. Completely. I can’t explain the grief of that to anyone. I could no longer be part of the singing at church, such a vital and central part of my faith-expression. We discovered that my left vocal cord was semi-paralysed as the cancer had grown on to the laryngeal nerve and they had had to shave it. I choked often – on liquids mostly and many times when that happened, I would think it was my last moment here on earth. I missed singing so much, so so much but one day I heard a radio interview with Dame Julie Andrews who was undergoing surgery for vocal polyps and finally felt I could identify with someone in my pain and loss. It was like a warm hand reaching out to comfort me. I felt less alone.
For many years I felt unwell, though. I could never lose weight and without describing the detail of all the poor health choices I made, I eventually got to grips with a low carb lifestyle and fasting. BOOM! Stuff started happening! Medical problems I had for years started clearing up. My energy picked up, because I discovered the wonder-vitamin that is vitamin B! My vitamin D deficiency got sorted (send me an email, I’ll introduce you to the doctor who turned it all around for me). But the biggest miracle I have saved till the end to tell you. I’ll just come right out with it.
I got my singing voice back. After 21 years.
There’s a little-known medicine called LDN, that in large doses is used to treat heroin addicts coming off their addiction. In smaller doses, it has a whole host of health benefits and initially, my clever doctor prescribed it for me to help me establish a better sleep pattern so my over-busy brain could switch off earlier at night. After two or three months of taking it, one day I suddenly had such a desire to just belt out a song. And I did. And I was shocked at what came out of my mouth! For over two decades I have not been able to handle what came out of my mouth that was supposed to pass for singing, it was just too terrible. Plus, I never regained the vocal range I’d had before. And here I was, actually holding up a melody! I sat down at the piano and I could sing a song from start to finish without any strain. A few days later, I sang happy birthday to a friend via voice note for the first time since my 20s. I cried and cried. It was like finding the lost love of your life again after so many years.
Turns out LDN aids nerve regeneration.
Others don’t get to be as fortunate as me. Some people are diagnosed with cancer and die within a matter of weeks. Some of them are also too young, some are old, quite a few are middle-aged. Some are sick for years on end and have to endure the hardships of chemotherapy or radiation treatment. Many years ago, I helped to write a cancer support email series, which you can still find online, so if you know someone newly diagnosed, send them to this link: https://isurvivor.org/
I think it’s important to remember that cancer is NOT a punishment for something bad you did. Life in its brutality (and beauty) comes to everyone on the planet, good and bad. So many people who are diagnosed with the tougher, late-stage stuff often die in denial – and that’s something you should not do, because even in that bleak moment you can have precious moments that will comfort those left behind for years to come. Think of them. Accept your diagnosis as quickly as you can, and then get organised – dominate your struggle. Do not just meekly suffer along – and I don’t mean put on a happy, false face neither. Cancer is serious business. Consider all your options, and strongly consider a low carb or keto diet – cancer thrives on the sweet stuff. It’s now too late for a so-called ‘balanced’ diet (what IS that, anyway?). Accept the help that is, well, helpful. People around you feel small and helpless and if they come with takeaways (even if you want to hurl at the sight of them), say thank you. Let them do stuff for you. Now is not the time for pride. But also clearly articulate how people can be of help, PRACTICALLY. People around you DO love you and are also struggling to understand this blow that has been dealt to you.
You may or may not survive your cancer, none of us get out of this life business alive anyway – yet you always have the choice how to live out your remaining time, whether it’s another two months or another two decades. Choose your attitude well.
I asked my doctor for recommendations to cancer resources online, here’s a list:
Cancer Websites:
Cancer Tutor
This one is text-rich, full of wisdom, but a little tough
Chris Beat Cancer offers a free 7 day introductory tour of his full-fledged programme. He is very warm and friendly.
https://draxe.com/health-category/cancer/
Dr Josh Axe has an accessible and visually appealing way to deal with the basics of cancer’s at-home treatment.
Green Med Info has nearly 5,500 articles on alternative treatment of cancer listed. This site is for the more scientifically minded, who need to see solid research results underlying alternative therapies.
Mayo Clinic has extensive cancer info for the conventionally minded.
The Truth About Cancer (TTAC)
https://thetruthaboutcancer.com/
Documentaries and informative blogs about matters relating to cancer. Can be overwhelming, but still worthwhile.