When I was diagnosed seven years ago with cancer I was only 40 years old, and by all accounts, was nearly dead. It was May 2014 and my organs were in shutdown because the rare cancer I had carried since birth had been so good at hiding, it was very advanced when it was spotted. I had been unwell since getting glandular fever in 2012, I just kept getting sick and needing time off work. Then I had back pain that got so bad it kept me awake at night, in tears, and I was a zombie in the day.
I’m a photographer and carry heaps of heavy gear, so doctors thought it was some kind of sciatica or nerve pain from wear and tear. It kept getting worse but never showed up as cancer in blood tests and scans. The pain in my back got so bad it was like having a knife in my back, twisting around. I had to have an MRI and it hurt so much to hold my back in that position that when it was done I went out to the car and vomited.
It turns out it was cancer that started in my right testicle, spread through my lymph nodes and took over most of my liver. At first they thought I may have had some sort of lymphoma, but it turned out to be much worse. It’s called embryonic germ cell metastatic carcinoma. It’s a very rare type of cancer from when I was an embryo. I was always going to get my cancer, it was a matter of when. Most guys who have it start showing symptoms between 18 and 25, after puberty and if they get it early enough, often surgery is enough to fix it. For me to get it at 40, that was rarer again.
So when I was diagnosed, there was a 70% chance chemotherapy would kill me. I had lots of people tell me I shouldn’t attempt it, I should focus on dying peacefully and without pain.
I needed surgery straight away but my body wouldn’t have coped, so I went straight into an aggressive chemo treatment. It was so risky they started me in the Intensive Care Unit. I spent 133 days in a row in a hospital bed. I had to be in an isolation room.
My immune system was so compromised a germ could have killed me. Anyone visiting me had to wear full Personal Protective Equipment (PPE), and if I buzzed for a nurse they’d come to the window and wave, ‘hi, Joe, coming’ – and they’d glove up and gown up, put their mask on then come in.
Not being able to go outdoors and have sunlight on my skin for more than two months was so awful, and at the end of it I was 40kg, my muscles had wasted away – I was skin and bones.
Rehabilitation was a rollercoaster, it was so hard and so long, and I got sick and took steps backwards for every step forward. After many, many months of rehabilitation my medical team started saying, Joe you’re going to make it. You need to reward yourself.
So in December 2014 my wife Caroline and I went on a cruise. It was fantastic – we had loved cruising together and used to do it all the time, we loved seeing the world. I had thought I’d never do it again when I was diagnosed, so it was the best feeling ever getting on that ship.
I still had cancer though. Chemo had done an amazing job on my liver, but in March 2015 I went to the PA hospital in Brisbane and had lymph nodes removed, and one testicle. It was a nine-hour operation, they cut open my stomach – I have a massive 35cm scar. There were a few major scares where the emergency button was pushed, and doctors came running from everywhere. But I made it, and that was the last of my cancer treatments.
I’ve been cancer-free for more than five years now.
The main reason for me sharing my story is to tell you about Bloomhill and why it’s a brilliant organisation, because it helped me so much. I don’t have a huge awareness message because nobody could have avoided my cancer – it was in me since I was a little boy.
The things I really want to share are about surviving cancer, and for me, Bloomhill was central to that.
It was serendipity, how I came to Bloomhill. Nambour General Hospital rang and asked for my input about the design of the new Sunshine Coast University Hospital’s oncology space. They wanted to know what had worked at NGH in the oncology care I had, and what hadn’t, to help inform this new hospital. My experience with NGH oncology was brilliant: they winged it, but they were doing their best and they were trying to keep me alive, and they did it.
One of my nurses at NGH was chairing this session at Bloomhill, and she was so happy to see me. She said, “Joe you were the talk of the hospital, you united doctors because they had to work on you together, everyone was barracking for you”. So I felt like I was among friends, and the task I was asked to help with was really important.
The property Bloomhill is on is so beautiful, the trees and peacefulness are so welcoming. I really wanted to know more about what it did, and soon I was going there often. I got massage, acupuncture, yoga once a week. I had counselling. I learned about so many things through the workshops they held. I was still really weak – I needed help getting down the few stairs, and a chair at yoga.
A huge turning point in my rehabilitation was seeing the exercise physiologist at the time, Curtis Forbes. He would see me in Bloomhill’s gym at least once a fortnight, and he’d test my heartrate, and blood pressure before, during and after exercise. He tried to really help me get off the walking stick. After about six months I noticed a big difference, and I kept on with it for about two years.
Another great thing about Bloomhill was the feeling of never being judged. There is always that real sense of helping and it extended to my wife as well. She had counselling, and massages. The sense of family is really nice.
Another message I guess I have for people is tell your story. Like I’m doing now. It’s really important for people going through extreme trauma to talk about it. Science has proven how valuable it is to survivors of cancer.
Even if you’re 80 when you’re diagnosed, survive it as long as you can, as best you can. Don’t stop living, too many people give up too soon.
Life is beautiful, and yes I still have my fatigued and cr*p days, where the numerous side effects of treatment really affect me, but I’m full of love for life. I’ll always make time to take my dog down the beach (one of my daily joys), for my photography. And I am always ready to jump on the next cruise ship.