Living with chronic pain

7 Mar

If you know me, you know I’m a cancer survivor. I was diagnosed with osteosarcoma at 21. I consider myself incredibly lucky—while it was far from a fun experience and I faced complications that year, I survived.

I went through 16 rounds of chemotherapy and had a resection of ribs 3–7 to remove the tumor and surrounding tissues and bones to prevent recurrence. My ribs were replaced with Gore-Tex, and I faintly remember the doctors saying my surgery might only last 20 years, but at the time, our only focus was keeping me alive. Thanks to modern medicine, I was able to live a nearly normal life for almost two decades.

When Everything Changed

July 2024.

I woke up one random morning with pain at my operation site. My GP sent me for a CT scan, which suggested a possible recurrence. I managed to get an appointment with my private orthopedic surgeon, who had taken over my case after my original surgeon retired. A PET scan later ruled out cancer, so I returned home to Esperance without any real answers.

The next eight months were a blur of trips to Perth, endless tests, and four specialists. Every test seemed to bring a different conclusion:

"Your surgery is failing."
“A possible recurrence of cancer.”
"You have a nerve condition."
"There’s a hernia at the operation site."
"Your shoulder blade is in the wrong position."
"You have enlarged lymph nodes."

I was offered a variety of medications, but every single one came with unbearable side effects—heart palpitations, nightmares, nausea, dizziness, headaches, and even joint pain in my fingers.

Meanwhile, my referral was canceled twice by WA’s Central Referral System without explanation. This system triages all referrals, directing patients to the correct hospital and specialist. The only reason we can assume mine was rejected is that I had already seen multiple private doctors.

Navigating the Medical System

At the time, I only had extras-only health insurance, which I upgraded to full cover in September. But I had no idea how the system worked (there needs to be more education about private vs. public), and in my desperation, I saw whichever doctor could fit me in—spending hundreds of dollars on appointments, plus the cost of traveling over 700 km to the city each time.

Eventually, I found a doctor willing to operate, only to learn he only treated private patients. When I applied to my health fund, they rejected my claim because this wasn’t classified as a "new condition." Another surgeon told me the surgery was too risky and referred me to a pain specialist instead.

After all the scans and consultations, I still don’t have a clear diagnosis. But one thing is obvious—my surgery site is failing. You can literally see the hole at the operation site.

At times, I wondered if I was imagining the pain since no one seemed to be helping me. Other times, I questioned whether it was a political issue—maybe the surgery was too expensive, or perhaps the materials used weren’t suitable in the first place.

When you can’t get clear answers, don’t have a single doctor overseeing your care, and feel like you’re being passed around the system, it messes with your mental health. Living in chronic pain while trying to run a household and a business is physically and emotionally draining.

I sought help and got a mental health plan, but that process was not quick. On my worst days, I couldn’t access immediate support—it was all by appointment only. I even called the Cancer Council, but they couldn’t offer me assistance because I no longer have cancer.

This has severely impacted my life in ways I never expected. I can’t drink alcohol at all because of the inflammation in my body. I rarely go out at night, and I feel like I’m only a fraction of my normal bubbly self. The person I used to be—social, energetic, full of life—feels distant. Chronic pain doesn’t just affect the body; it takes away pieces of who you are.

After a full day of trying to live - pain level 7 out of 10, body battery 8 out of 100 (Garmin)

Desperation & Looking for Solutions

So far, I have tried over 10 different prescribed medications, naturopathic remedies, TENS machines, physiotherapy, remedial massage, topical pain creams, and both heat and cold therapy. While some of these have provided short-term relief, none can fix the fact that my chest wall is collapsing. Structural pain cannot be masked forever.

Out of pure desperation, I reached out to a hospital in Turkey. They responded within a week, reviewed my scans, and offered a full chest wall reconstruction using titanium and Prolene mesh—a much more suitable material than my current Gore-Tex.

The catch? It costs over $90,000 AUD, and I would need to stay in Turkey for six weeks.

I’ve now reached out to a hospital in Bangkok and a specialist in Queensland who focuses on thoracic surgery, as I want to explore every possible option. At this point, I’m unsure whether the WA health system can provide the support I need.

The Reason I Decided to Share My Story

There are two main reasons I wanted to share my story.

1. To Let Others Living with Chronic Pain Know They Are Not Alone

If you are living with chronic pain, I want you to know you are not alone. I know firsthand how hard it is to find help, but there are things you can do. I also want to create change and advocate for those who don’t have the support or ability to fight for the care they need—people who are sent home and left with nothing but horrific medications that are handed out like candy.

Once I’ve had my surgery, I want to help others avoid going through months of hell before getting the care they deserve.

Chronic Pain Australia (CPA) recently published its 2024 National Pain Report, revealing that 3.6 million Australians suffer from chronic pain. But I can’t help but wonder—is the real number even higher? How many people are living in silence, struggling every single day?

If you’re going through something similar and are waiting to see a specialist, be prepared. You may only get 15 to 30 minutes with them, so make the most of it. I highly recommend:

Writing down your key points and symptoms ahead of time
Having a clear list of what you want to ask
Keeping a printed file of your test results so all the facts are easily accessible

This has helped me immensely.

2. To Highlight Silent Illnesses & Invisible Struggles

From the outside, I may look fine. I mask it well. But most nights, I’m crying on the couch in pain.

Since sharing my journey, I’ve had deep conversations with others who have opened up about their own struggles. And it shocks me how many people are silently suffering with chronic pain, grief, cancer, and mental health challenges—without the help they need.

You truly never know what someone is going through. Unlike a broken leg, these struggles aren’t always visible. That’s why kindness matters.

A simple smile or friendly hello might bring a small moment of relief to someone suffering in silence. We need support, connection, and to feel heard—not lost in a system that often struggles to meet the needs of those with invisible illnesses.

Resources That May Help You

In my research, I have found different tools and resources that have helped me—in particular, the ROOM tool. It has been useful in assessing just how much pain is affecting my daily life. As I write this, I’m currently sitting at a 9 out of 10.

Pain Management & Advocacy

Pain Impact Assessment Tool – If you want to gauge how much your pain is affecting your life, this tool may help.
Check your pain level here

Have your say about your care experience:

Mental Health Support

Getting a Mental Health Plan – If you need one, speak to your GP. You can access 10 free appointments under Medicare.

Immediate Support – If you need help right now, please reach out:
Lifeline: 13 11 14
Kids Helpline: 1800 55 1800
Beyond Blue: 1300 224 636

If you need help, please reach out to someone—you don’t have to go through this alone. Life can be cruel, but I find hope in our ability to support each other through tough times.

I know the healthcare system is complex, and I am incredibly grateful to the doctors and specialists who have taken the time to help me. My goal in sharing this is not to criticize, but to advocate for better awareness, support, and solutions for those struggling with chronic pain.

"Unexpected kindness is the most powerful, least costly, and most underrated agent of human change." – Bob Kerrey

Jayde Guest