I found out I had thymic cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs in July 2019 by accident.
Like many people living with thymic cancer, I didn’t have any symptoms directly caused by the tumoura tissue mass that forms from groups of unhealthy cells, but I knew something wasn’t right. I couldn’t project my normally loud voice, I was easily short of breath and I choked regularly.
Chewing and brushing my teeth were tiring. I live and work in the Northern Territory; my job involves a lot of outdoor work in the heat, mostly with cattle. I’m pretty used to the extreme climate, but I found that I couldn’t cope anymore – my clothes would be completely saturated, my arms and legs would start to shake and then I would collapse with pretty minimal exertion.
I didn’t know at the time that these were all symptoms related to myasthenia gravis (MG); a chronica long-lasting disease that changes slowly over time autoimmune, neuromuscular disease that causes weakness in the skeletal muscles. It’s a condition that is strongly correlated with thymic cancer.
I went to my GP and said there was something really odd going on. He put it down to menopause, suggested that maybe I was ‘a bit out of shape’, not as strong as I used to be, and showing signs of heat stress. I was confident what was happening wasn’t normal, and pretty shocked that menopause could be that brutal. But I trusted his judgement, started some medication and just tried to manage the collapsing and extreme fatiguea state of extreme tiredness or exhaustion, can be physical or mental for the next 18 months without telling anyone, because I was really quite embarrassed about my ‘snowflake’ tendencies.
In the meantime, I had a cardiac ablation to address a heart rhythm disturbance. There were complications, and because of excruciating post-operative pain, I had a CT scan to investigate. They said my heart was normal, sent me home with pain relief and said to see the cardiologist for a check-up in six weeks.
At this follow-up, the cardiologist told me my heart was fixed, and then asked what I was doing about my thymic cancer. I was stunned. When I asked him what he was talking about, he said, “Oh, we didn’t tell you? Yes, you have a large tumour in your thymus, you need to see a cardiothoracic surgeon, I’ll send a letter to your GP.”
I felt like I was given a huge bomb and just left with it.
My GP read the letter and told me that thymic cancers are not a big deal; I should get an opinion, but not worry about it. I couldn’t get an appointment to see a cardiothoracic surgeon locally for another nine months, but I just accepted my GP’s advice once again and put it out of my mind.
By the time the appointment came around in April 2020, COVID had hit and there were restrictions on medical consultations, so it was done over the phone. A very blunt cardiothoracic surgeon told me that I had a large tumour in my thymus that needed removal. He said I would need a full sternotomy (super scary), but because of COVID restrictions I would not be on a surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence list for another six to seven months, and asked did I have any questions?
It was a brutal way to deliver such sensitive news over the phone to a person they’d never met. I remember saying I’m sure I’ve got lots of questions, but you’ve just really thrown me and I can’t think of what they are right now. I was given the number of a nurse to contact, but told that the surgeon would only speak to me again closer to the time of surgery.
I hung up and remember feeling completely dismissed. He had just told me I had cancer, needed a big operation, and then put me on the backburner. I didn’t want to sit there for months thinking about it, I wanted it out.
I rang a few cancer charities for guidance and found RCA. They told me about the support available and took the time to ask me what I wanted and needed. It was a massive relief to talk to someone who was speaking the same language.
They helped me find cardiothoracic surgeons with an interest in thymic malignancy in Melbourne, where my extended family live. I found one with availability and organised a video appointment.
This surgeon was lovely. Finally, I felt like someone had their finger on the pulse – he looked at my scans and told me this wasn’t optional surgery, the tumour had been there too long already. When could I come to Melbourne?
He was kind and compassionate and took the time to answer all the questions I had racing through my head. But more importantly, he went a step further and asked me some screeningtesting for cancer or conditions that can lead to cancer before symptoms appear, also known as cancer screening questions about MG. I told him I had read about my symptoms and thought I might have it, but my GP had not thought my problems warranted investigation. The surgeon referred me to a neurologist for assessment before he would operate. When it was confirmed – as hard as it was to hear – it was a relief to know that I wasn’t imagining the difficulties; my experience was validated. I’m so grateful to that surgeon, because he put me on the right path to diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results.
Travelling so far from home for treatment was hard for my family. I was away for two months; I couldn’t go back and forth as it is a full day of flying and driving to cover the 3000km from my home in Katherine to Melbourne. We live on a big rural property and my husband was taking care of our three children while working full time, and I wasn’t there to help. It put huge pressure on all of them. COVID restrictions meant they couldn’t come to Melbourne to visit me.
Financially, going from two incomes down to one was also a huge change. The initial estimate from the surgeon was that I would need four to six weeks off work, but it ended up being 14 months until I was back at work full time. While I wasn’t earning, I was spending an enormous amount of money on specialists, scans, tests, treatments – it was extremely expensive. That said – I don’t regret going through the private system, I’m just grateful that we could manage it.
The surgery in Melbourne to remove my tumour went well initially. The surgeon said he thought they got it in time, and there was a good chance that my cancer journeywhat a person experiences/lives from the time they think they have cancer would end there. I was discharged and kept improving for another two weeks. I was ready to go home and celebrate!
Unfortunately, two weeks after discharge, my left lung collapsed spontaneously, and my left phrenic nerve stopped working, so I had a paralysed diaphragm. It’s a well-known riskthe possibility that something bad will happen of thymic surgery but it usually happens immediately after the operation. At two weeks post-op we thought I was safe, so it came as a big shock. Around the same time, and then progressively over the next three months, my MG symptoms went from mild to moderately severe. I couldn’t stay awake for long or get out of a chair by myself. I definitely couldn’t go to work. I struggled to lift my arms above my waist so washing my hair, brushing my teeth, even holding a coffee cup was exhausting. Then I had a horrible reaction to some medication, which left me further incapacitated.
The disappointment around this level of debilitation was crushing after the high of the successful surgery. Any choice and control over my life seemed gone.
The overlay of COVID added another layer of complexity to everything with restrictions in the hospital, and then the need to isolate in quarantine for two weeks when I finally returned home. I could not have gotten through all this without the practical and emotional support of family and friends.
Despite the difficulties, finding my treating team in Melbourne that I really trust, who are thorough and optimistic about my long-term outcomes, is an absolute godsend. The specialists work closely together; it was and is a team-based approach to treatment. I felt included in the decision-making and well informed. I’m so grateful for their expert care.
Although I don’t like it, I have accepted that I have a chronic illness that will continue to wax and wane. Treatment keeps me as stable as possible and mostly keeps me out of hospital. My lung hasn’t re-inflated and my diaphragm is still paralysed, but fortunately there was no evidence of the cancer recurring at my one year post-operation scan. I feel like I’m coping well with it, although MG continues to present unexpected challenges.
When I look back on it all, what helped the most were the people who believed me when I had concerns, and my ’village’ who encouraged and motivated me through the worst times, including the RCA Thymoma Support Group. I am very grateful for the people who said “OK, how about I do this to help you?” And those who said, “I know it feels awful, but we’ll get through it.” And we have.