diagnosis

written between 8 january - 15 january, 2024. notes, thoughts and how I am going to approach the next few months after cancer diagnosis.

Heads up, sad and heavy update involving illness below.

I am sorry for whatever state this update finds you. It is heavy to read and am sending you a hug to comfort you if you have lost or currently experiencing anyone going through something like this.

I have written this so many times, changing words and rearranging paragraphs.I have felt every single emotion possible in the last week. I have wanted to sound as though I am feeling strong, I have wanted to sound as though I was going to be sure I was going to beat this thing, I have wanted to sound as though I was casually wiping this away like sweat on my forehead. At the same time, I wanted it to sound vulnerable but not too sad. I'm getting tired from feeling 10 emotions in a minute and it hasn't even been a week...so here it is, in its raw and vulnerable form.

For 31 years I have been living with Neurofibromatosis Type 1 (NF1), a genetic condition (in my case I am the first in my family due to spontaneous mutation of egg) that causes tumours to form on nerves, under the skin and deep in the body – affecting 1 in every 3,000 births or about 2.5-2.75 million people worldwide. It is a condition that impacts people to varying degrees, I have been living with it mildly until recently. These tumours can turn into malignant tumours, which are called Malignant Peripheral Nerve Sheath Tumours (MPNST).  

Back in mid-2022, I had been feeling a tightness between my shoulder blades that I thought was a muscle knot or strain from exercise. I had been getting massages to try to ease the pain and it would go for a while and then come back. I then went and saw my specialist, Professor Kate Drummond (Director of Neurosurgery at Royal Melbourne Hospital), and we did some scans and tests. We saw a tumour that showed it that was suggestive but not definitive of being an MPNST. In November 2022 I completed 6 weeks of radiation therapy. I left each session feeling like I had a radioactive glow around me, it was a weird feeling. This was followed up by surgery in February 2023. The tumour was too close to the spine to remove it all and they still weren't able to say if the tumour was malignant or not.

Fast forward to mid-December 2023 after some time of increasing nerve pain in my right side I saw my specialist again after getting some expedited scans. The news was that the tumour had grown back (rapid recursion/significant growth in medical terms), increased in size and was compressing my spine....which explained the nerve pain.

On the 2nd of January, I had another surgery, a laminectomy, to reduce the pressure on my spine with the tumour being sent off to pathology. On the 8th of January, 1 day after my 31st birthday, Professor Kate Drummond along with her resident Bee, shared with me that the tumour was indeed a malignant peripheral nerve sheath tumour. My scans had also shown another tumour with similar characteristics on my T12. I have had conversations since I was about 12 years old with specialists that this day might come, living for 18-19 years knowing something like this might happen has changed how I have lived my life, maybe a bit more on that another time.

These are non-curable tumours (this doesn't mean it isn't treatable), they occur in 1 in 100,000 people in the general population, half of these being people with my condition and then within my condition only 8-10% of people will get them. In the US there are only around 200 cases a year and MPNSTs only makeup between 3-10% of all soft tissue sarcomas.

When I first heard the news, I was devastated, shattered and heartbroken. I could feel my heart breaking and my body going into shock. I went back to my hospital bed, laid down, placed my hand over my heart, deeply breathed in and out and felt parts of my life and memories flashing before my eyes. I felt a warmth go over my body, it was surreal. Every bit of tension, annoyance, unresolved grievance or issue I had been holding in my subconsciousness/ in my body had dissolved and it felt like I was in ecstasy. It was a beautiful moment where I realised the only thing that matters now is love and connection.

Afterwards, I called my partner and my mum. We were anticipating it and we shared a few tears over the phone. By coincidence my friend who was in the area popped in for a visit, I shared the news with him as we walked around the corridors of Royal Melbourne Hospital and the bridge to Peter Mac Cancer Centre

In the days following, I was discharged from the hospital and had follow-up appointments with the team at Peter Mac Cancer Centre. I have had moments where I am closing my eyes and seeing beautiful memories that make me feel like I am just in a bad dream and opening my eyes remembering what lies ahead.

I am shattered that one day I could be leaving behind a life filled with love. Knowing that our death is inevitable is one thing in life, knowing that its certainty could be closer than I want holds another level of gravity in my heart.

Despite feeling shattered over these last few days, I have also felt so incredibly grateful for all that I have been able to do, the people I met, the places I've been and the people I have befriended and loved along the way. I have had moments of serenity where every moment feels special, it is an intense happiness.

This isn't the end though. The realistic side of me accepts what lies ahead, the stats aren't great, but I remain optimistic that we'll be having a beer in 5 years looking back at this and having a laugh about that time I kicked a rare tumour's ass. We'll give this treatment a go and see what happens, I am driven to be the outlier and make doctors scratch their heads wondering how I am still alive. My friend shared with me that we can transcend this notion of "incurable" and transform it at the very least into "manageable" and perhaps even "reversible". It's been a helpful idea to remind myself of.

This week has been a whirlwind and I'm slowly finding the beauty and humour in the little things again. I said this above and I'll be saying it again lots of times to myself and others, all that matters now is love and connection. I want to spend time with people having heart-to-heart conversations and in nature.

I wanted to share my experiences to bring awareness to Neurofibromatosis Type 1. If you would like to read and understand more, head to ctf.org.au or just google it. If you're asking "What can I do for Dug?" this is a great start. It would mean a lot to me if you did. I don't know what being an advocate for a cause or a group of people going through the same thing means, but I want to be one for others living with this condition that has led to this malignant tumour. If anyone has any ideas on how I can share my story more widely, get in touch.

Lots of friends and family have already reached out, offering the world and lots of love. I can't wait to connect when we do. You all mean the absolute world to me. I have felt an increased level of closeness to you all.

With all this ahead of me, I have no choice but to lean into the wild ride ahead. There is no winning and there is no losing, there is only existing and feeling everything as it comes. There will be lots of happiness and light in all this craziness.  

"Let everything happen to you: beauty and terror. Just keep going. No feeling is final." Rilke