July 7th, 2017. The day I was diagnosed with cancer.
To tell my story I have to jump back to 2015. Almost two years before I was diagnosed with cancer.
I had been unwell for some time. Not really sick, just unwell. Always very tired, problems with eating and just generally not feeling my best. My GP eventually diagnosed me with Hashimoto Disease which, in hindsight, was the first step in saving my life. As part of the treatment for Hashimoto I had blood tests every three months to check my thyroid levels. These blood tests showed a rising red and white blood cell count which concerned my GP enough that he sent me to a specialist Hematologist. I attended my appointment with the Hematologist and he wasn't concerned about my blood levels. He didn't think they were at all high. As I was walking out of his office, he stopped me and said, almost as an afterthought, that he should do a chest xray and ultrasound just to be sure everything was ok. That is the defining moment of my cancer experience right there!
I had the tests done and returned to the Hematologists office for the results about a week later. To my doctor's and my surprise there was an 'incidental finding'. A cyst, near my pancreas that shouldn't be there. Apparently, the size, density and shape didn't indicate anything sinister but my specialist thought we should have it removed. He referred me on to a general surgeon. My general surgeon didn't want to remove it so he referred me to a pancreatic surgeon. The pancreatic surgeon didn't want to remove it until he knew what it was so he sent me to an Endoscopic surgeon and finally a date was booked to remove cells from the cyst, endoscopically, for testing. From GP to Hematologist, to Pancreatic Surgeon, to Endoscopic Surgeon, to surgery day took 9 months. In total, almost two years of being unwell and not knowing that cancer was growing in my body. Cancer was trying to tell me it was there, but neither myself or my doctors were making the connection.
A few days after the endoscopy, I received a phone call at work. It was the hospital, confirming my appointment with the Oncologist. WHAT???? Did someone forget to tell me that I had cancer? This definitely is not the best way to find out you have cancer. It messes up your day, leaves your feeling sick and makes your cry a lot, so if any Oncologists are reading this, PLEASE do not tell your patients they have cancer this way. It simply isn't a nice way to find out.
Less than 24 hours later i was, sitting in the waiting room of the Cancer Care Center at the Mater Hospital Brisbane. Ironically, the building I was sitting in was the very same building i was born in. Possibly the same room. The Cancer Care Center was in the building that once was the Mater Mothers Hospital. I remember thinking "I was born in this building and I might die in this building". Your mind is not kind to you when you are thinking about cancer.
The waiting room was full of cancer patients all at different stages of treatment. Some with no hair or looking terribly sick. Most were much older than me. Cancer is an old person's disease isn't it? All i could think was, the doctors must have it wrong. I'm not sick and i'm not old. I had a few digestive problems and was tired all the time but that was normal for an almost 50 year old facing menopause wasn't it?
Then my name was called. The next 15 minutes are a blur really. I heard the words 'You have cancer' but then my thoughts sped through all those questions. Would I loose my hair? Am i going to die? How will I work and earn an income? I was single and didn't have a partner to support me. Who will look after my kids if I die? Will I loose my job? None of that really should have mattered in these first few minutes but it was all i could think about. When I finally started listening to the doctor again she said we would start chemotherapy treatment next week. I went into a silent panic mode. No! That's too quick. I'm not ready!
Five days later and I found myself in a chemo chair with an IV drip in my hand and a bag of chemo drugs filling my veins with "toxic" medicine. To say I was scared is an understatement but there was no choice. I wanted to live and i would live! I have to thank my oncology nurses Lisa and He. Their reassuring words got me through that first day. Although my fear never left, I felt safe knowing they were looking after me.
Treatment goes on for a long time and as the months pass the oncology team become almost family. They were there when I celebrated and when I cried. Their hugs were as important as the chemo. I can never thank them enough for looking after me. They are angels in disguise.
36 infusions of 'toxic medicine', five surgeries (minor and major), 24 hours in a coma, blood clots in both lungs, a pneumothorax and too many blood tests and scans to count, and i am now classed as 'no evidence of disease (NED)'. I'm not sure whether to say i am lucky or blessed. Maybe a little bit of both. I am very happy to be alive. To have more time, hopefully decades, with my family and friends is wonderful. So yes, i am both blessed and lucky.
Once chemo treatment was over, I started thinking....
How could I help other cancer patients and their family, friends and coworkers. When you are first diagnosed it is hard. There is so much to remember and everyone is talking a language that you don't understand. I'm still not sure I know what neoadjuvent means? Your family and friends are in shock and not sure how to react. Some will reach out to support you and others will appear to have taken a long holiday where there is no network because you never hear from them again. Everything is confusing and everyone copes differently :) And why do certain cancers get support and help and gifts and aids and have access to multiple support organisations and websites for information and other cancers, well they get nothing. Why?
Isn't cancer ... cancer?
As I was no longer working I had a lot of time to think about this and I was sure I wasn't the only cancer patient thinking about the differences in the world of cancer. And this is where the first thoughts of Cancer Warrior Australia started.
I wanted to create a place where cancer patients could find information or links to organisations that offered support for the cancer they were dealing with and a place where gifts could be purchased for cancer patients that were thoughtful, inspiring and practical. No fruit baskets or chocolate bags but practical gifts that would be helpful.
And Cancer Warrior Australia (cWA) was born.
I have plans for cWA. Visions, some so big i may never reach them but I will try. To me, every cancer patients is special. They have been through more than most people will in a lifetime.
Cancer Warrior Australia will always create awareness for all cancers and all Warriors, Survivors and Supporters.
I created this video early in my treatment. It was about the first part of my cancer journey. I hope you enjoy it.