I am many things. I am a husband, a father of three beautiful children, a brother, a son, a friend and a rare cancer patient. I was diagnosed on Christmas eve in 2009 at the age of 25, a newly married man.

I started getting some headaches in the month or two before. They were getting progressively worse. Then, one morning I woke up with vertigo and I was vomiting. I was feeling quite unwell, so I decided to visit my GP. She was a bit concerned about what was happening, so she organised a scan of my head.

I can still vividly recall getting my MRI done and afterwards, the radiologist bringing me into their rear, dark rooms. He had a picture of someone there with an obvious, very large mass on their brain. He started talking to me and it didn’t even click. I was just looking at this picture of this brain, and he was talking, and I remember interrupting him to ask, “wait, is this actually me?”

He sent me straight to the hospital after that. It was just around the corner and as I walked to my car, I remember looking up at the sky thinking “is this it?” I didn’t know anything about brain tumours at all.

I ended up having the tumour surgically removed in January. Initially they thought it was benign, but when they looked at it under the microscope they found it was a very rare malignant cancer – anaplastic meningeal haemangiopericytomas. My surgeon who had 30 years of experience under his belt said he hadn’t seen many of them in his whole career. He told me it was a malignant lesion, with a high risk of it coming back and a high risk of it spreading.

Getting a diagnosis of cancer is a very traumatic but hearing that you have cancer and there is not a lot known about it – that there’s no rigid guidelines of how to manage it and that your doctors don’t really know what’s available for you – is another level of difficult.

Along the way, I’ve picked up a lot of important people who have helped me with my diagnosis and managing how things come along, like my Radiation Oncologist, my Oncology team and advocacy groups like RCA. When options are very limited, finding answers is not something you can do on your own.

After my second round of radiotherapy, my cancer did come back and it did spread to different parts of my body – into my shoulder, my lungs, and it came back in my brain.

I was fortunate to find a surgeon who was happy and able to take on further surgery that others had not wanted to do. In July 2017, I underwent my third craniotomy including the removal of a major sinus in my brain. It was a successful operation, but just like my last, it would come with bad news.

Five weeks after the surgery, I was diagnosed with Smart Syndrome, a stroke-like condition which left me significantly cognitively impaired. I lost vision in my right eye, I couldn’t read, I couldn’t speak, trying to solve very basic problems was extremely difficult. After a lot of determination and intensive rehabilitation, I learnt to talk, read and think all over again. But it has had long-term cognitive impacts on me. My ability to learn new things has been significantly affected. But I feel like there has been improvement, even though my specialists still tell me that they continue to see some deficits. Therefore I haven’t been able to return back to work as a dentist. It’s difficult, but if it wasn’t for the surgery and radiotherapy, I wouldn’t be here today.

Advances in treatments over the years has helped me to continue to improve. I still can’t believe that when I was first diagnosed, we talked about options with my oncologist and there basically were none. It felt like we were left on our own, trying to piece together a plan. But now, as time has passed, other options have popped up and this has really made a big difference for me, such as the promising clinical trial that RCA found for my condition which involved genetic testing.

The stress before a clinical trial is the highest stress I’ve ever experienced in my life. There’s no worse feeling than knowing there is something potentially available that could really help you, but you may not be able to access it because you don’t meet certain criteria. Waiting for the response is horrible. There are no words to describe it.

That’s the issue with me and my condition, and other patients who have rare cancers. Companies aren’t making these drugs for people like us, they are making them for the more common cancers because that is a bigger patient pool for them to go out and support. That’s why we rely on organisations to advocate for us to gain access, to make applications on our behalf.

I was eventually accepted into the trial and they took a bit of my cancer tissue that had been removed back in 2009, and tested it for any genetic abnormalities. This was a new concept for me, I hadn’t heard of genetic testing before and I wouldn’t have if RCA did not tell me about it.

The test found that my particular cancer had a genetic defect found in a type of skin cancer, the idea being that if I were to take that skin cancer drug that I could potentially get a response.

I continued on the trial for almost a year. The skin cancer treatment showed promise at the start, but my Oncologist wasn’t happy with the way it was tracking so I stopped. It was difficult for me to unpack because the science was just so exciting.

Another immunotherapy-type drug became an option after this, which seemed promising. It would come at a huge financial cost for me and my family though, because the treatment was not funded for my cancer on the PBS. My parents sold their house, my wife returned to work when our youngest was just 14 weeks old, and my in-laws sacrificed superannuation to try to keep up with the high price associated with trying to keep me alive.

While we were busy generating the funds to pay for this option, I was fortunate enough to be accepted into an immunotherapy clinical trial. It was a godsend to be able to access that trial and not have to pay for it. This meant we didn’t need to go ahead with the self-funded drug, so the money my family raised is now put aside to help pay for any treatment that I may need later on down the track. My parents say they have no regrets about what they did to try and support me, and I am really grateful to them.

Having a rare cancer is consuming – not just for the patient, but for everyone who loves and cares for them. I am so grateful to have such fantastic support around me, but it’s hard to ignore the toll it takes sometimes.

I am still undergoing immunotherapy and I continue to try to fundraise to help with covering the still significant cost. We need a little more time to see whether this treatment is working well enough for me, but the longer I can stay on the trial the better.

However, if it doesn’t work out, we’ll see what else is available. I definitely feel buoyed by the fact that if I get bad news today, there are still options available, there’s still hope, there are still people out there looking out for me – whether they are in the medical circle, the advocacy circle or the family circle."

It’s not easy. Dealing with my kids and my current condition is one of the most difficult things I’ve had to do in my life, it’s hard to know exactly what the right thing to do is. My oldest is nine and my youngest is three. They are acutely aware of what’s going on, they know when dad is really upset, and they can see that dad looks a little bit different to some of the other dads – I’ve got a big scar on the back of my head, I have all these marks on my back and lots of incisions. It has been difficult to know how to balance keeping them informed and protected. But I try to be strong for my kids, I try to be strong for my wife, and I try to stay focused on the positive things in my life.