you can't ask that
...terminally ill (inspired by Kirk Docker's 'You Can't Ask That' series on the ABC.
‘You Can’t Ask That’ is a series of interviews with minorities in Australia.
There are seven seasons, I have watched every episode and love the vulnerability and candid nature of the show.
The show digs in deep and asks people in these “marginalised communities” questions that people onmight be too afraid or embarrassed to ask. Usually filing the question in their head or discuss it with friends under 📁You Can’t Ask That part of their internal filing cabinet.
Some of the communities that Kirk and the show engage with include but are not limited to; Wheelchair Users, Ice Users, Facial Differences, Homeless, Gambling Addicts, Refugees, Former Cult Leaders and the community I am in...the Terminally Ill.
How to watch ‘You Can’t Ask That’.📺
Australia: https://iview.abc.net.au/show/you-can-t-ask-that
US: https://tv.apple.com/au/show/you-cant-ask-that/umc.cmc.2n3gp9bu5vo3knpcgssmc6bua OR https://www.youtube.com/show/SCQvU4654GAzIveWOkJyugYw?season=1&sbp=CgEx
NZ: https://collections.library.auckland.ac.nz/tv-radio/programme/you-cant-ask-that
The reason I am mentioning this is because I have taken the questions from the show and am answering them myself.
They are honest answers about my experience, much like a lot of this substack has been.
🟠 HOLD UP HERE and come back if you need to, I get into honest detail about where I am at.
YOU CAN’T ASK THAT - TERMINALLY ILL w/DUGALD
What are you dying of and how long do you have?
I have an MPNST (Malignant Peripheral Nerve Sheath Tumour) on the T2 of my spine.
This type of cancer is non-curable. Approximately 50% of cases are found in people who have NF1 like me. Of people who have NF1, approximately 8% will get MPNST in their lifetime.
Of those with MPNST, approximately 2-3% of cases have a tumour in their spine. I also have another one that is suggestive but not definitive of being malignant hanging out in the T12 of my spine. From asking my specialists, I am still the only known case of this type of cancer in Australia. In America, there are approximately 200 cases per year. If you do the math based on population, and include the 2-3% approximately of those who have this type of cancer in their spine…….it is rare, very rare.
I was told around 12-13 years old that the tumours in my body from NF1 could potentially turn cancerous one day. I am 31 and have lived this period of time knowing that while it was highly unlikely and most people with NF1 can go on to live a normal length life without any issues. There was a very small chance that what I am experiencing could happen.
I have made the most of it.
When I first got my diagnosis in mid-late 2022 of “suggestive but not definitive of MPNST” I was told that because of the positioning, it could paralyse me, possibly quadriplegia.
As I write this, I am paralysed from the sternum down, I still have use of my arms and hands but I feel a mild numbness in some of my fingers.
I have lost feeling in my bowels and my bladder, I have a catheter inserted and going to the bathroom is a process involving painkillers and a hoist.
The hospital staff are ever so kind and some of the best people I’ve ever met. In moments where I feel I don’t have any dignity left they treat me like a human and I feel my humility and dignity is intact. Thank you.
These days I’ve cried for only one reason. I cry that my family, partner and friends will be without me. I feel I have the easiest role in this whole thing happening to us.
I don’t think what is happening to me is unfair, it is what it is and I accept it. I have surrendered to the experience and have let whatever happens happen knowing I have the best help and love around me.
The moments I touched on above is the other time I have cried. Happy tears of being treated so kindly and with respect in moments that on paper would feel humiliating.
Again. Thank you so much to the nursing staff, you are incredible human beings. How did I get so lucky? **GO TO THE VERY BOTTOM FOR A MORE DETAILED UPDATE OF BECOMING PARALYSED.
I had an MRI recently (September 2024), I was told that I didn’t need to get it but I insisted by saying that this cancer is rare and the medical imaging will be worthwhile for me to know what’s happening, but more so for research and understanding its progression for the future. I have had about 30+ MRIs in my life and this will likely be the final set of imaging to complete a set of 10-15 years of seeing how NF1 progressed in my body. I want it to teach neurosurgeons, neurologists and future doctors about NF1 and MPNST.
Getting this MRI was worthwhile because they found that the tumour in my T2 has fractured my vertebrae…..which explains why I have a pain in my chest.
I don’t know how much longer I have left to live….it might be days, weeks or months.
What should people say when they hear the news?
I haven’t been shy in telling the full truth and I have often given hugs out of comfort for the other person.
I have gone through a process of acceptance of my mortality and that can be confronting for some people to hear about it talked so calmly and sometimes casually.
Some people do not understand when I say that this cancer is non-curable and expected for me to get better with treatment. I have experienced and seen people over the last few weeks a bit shaken up by this. But it is my reality. It’ll be okay.
It is less about what people have said and more that they have said something.
Simple acknowledgement of circumstance is a recognition of my existence and what I am going through.
No one owes me anything and I have learned to drop expectations and be grateful for those who I have around me supporting me through the journey.
Saying “sorry you are going through this” is a perfectly fine and human response. I do like talking about normal stuff; the footy, the weather, work, what you’ve been up to on the weekend. . .It allows me to connect with what feels like the real world while I have been hanging in and out of the underworld of cancer treatment.
I have had some people offer different approaches to how I treat the cancer, some suggesting I don’t treat it at all. I shrug off any discomfort when people offer their advice and remind myself this is how they show that they care about me.
There’s been one suggestion that has been the best though, going to Bali and doing a course of oxygen therapy, whether or not this would have worked...it sounds so peaceful and meditative and I know it was coming from a place of wanting this for me. I almost made it happen A + G, paralysis beat me to it, thank you for thinking of me, I appreciate you both more than you know :)
If you’re unsure of what to say to someone who has cancer. . don’t stress or overthink it too much.
Simply being there and being a chameleon and matching the energy of your friend or family member wherever they are is what helped me most.
Some people came to me thinking they had a duty to ‘cheer me up’ and constantly crack jokes or be silly, this was exhausting when I was tired and recovering from chemo. . . remember, match the energy and if they're tired, be gentle and understanding. It’s your responsibility to simply be there.
Matching the energy isn’t always going to be possible and that is fine also :). If you need to cry, cry. I’ll be there to give you a hug.🫂
Have your relationships with people changed?
I have become so much closer to my family. I love you all so much.
I have become closer to friends that were already close and I have become close to people I didn’t expect to ever be close with.
I have also lost some friends due to me not wanting them around while I have had treatment. I let them know this early on with a text message. They had been friends who asked inappropriate and poorly timed questions about my life and family circumstances over the years. This continued during my first year of treatment and surgery, and they continued in moments when I expected them to be patient, kind and supportive rather than invasive and well. . .rude. If you read this, all you needed to do was be there and be supportive.
It was an experience where I learned to again drop expectations and simply let things exist as they are and not force things. I have been happier since.
This experience is greatly outweighed by the hundreds of people that have stuck by my side and supported me.
Thank you to all of you. You are the reason I have been able to carry through smiling like a madman.
Is the bucket list a stupid idea?
Not at all.
I haven’t had one though.
I have a list of things that I would have liked to have done if I was to survive or not get this cancer though. Maybe this is a bucket list. Does this count as a bucket list?
It’s written down, might share it one day, might not!
If you are interested let me know and I’ll share it with you.
It isn’t skydiving or anything like that though...
Have you suddenly turned to religion?
No. I have had several people who are though, they reach out and offer their prayers for me. This has been a nice thing to hear and given me comfort knowing they are thinking of me.
I had one friend say they believed in prayer bringing on miracles for a cure. I was annoyed when I first heard this because I didn’t feel like my circumstances were considered or they had googled the cancer at all.
Regardless, to me it showed they cared deeply about me and this was their way of showing it.
Do you now live without consequences? Does it make you want to take heroin or skydive?
When I initially got the prognosis of 12 months to live, I felt that I could probably get away with robbing a bank or stealing cars.
But then I remembered I have spine cancer and that I am not as quick as someone without spine cancer, that I would be caught quickly and being in prison while getting treatment would kinda suck so I opted to not to any of that.
I felt fireproof at times. Literally. Imagine if I had gone down in flames or from smoke inhalation...I wouldn’t have gotten to share any of this crazy and surreal year with you.
What’s good about learning you are going to die?
Having a long-range view of death is a privilege.
It makes everything feel like a sweet limited edition moment.
I look out the window for hours and soak up my environment and feel eternally grateful I got to grow up in Melbourne, Australia and have taken great opportunities to make my life great.
Hugs with friends and family are felt with x100 more feeling.
The TLDR is....everything becomes sweeter.
What don’t you worry about anymore that you used to?
When you have terminal cancer, most problems you hear about or think of in your head simply change to minor inconveniences and the solution becomes pretty simple….everything is temporary, don’t worry about it.
There’s some more on this here.
In saying that though, writing has helped me process things, there are still a few moments and things that bother me. I am quick to make sure that they are shuffled to the back and forgotten about. If they do stick around in my head, I know that it is something that really matters and I write about it and talk it out with those close to me.
Not serious but kinda serious: I don’t wear shoes anymore. I guess that’s not something I worried about before but I am in a hospital bed full time and will be until I die….so no more shoes. I’ve worked from home the last few years though and probably only wore shoes 30% of the time the last few years. I feel lucky to have the freedom of grass on my feet these last few years. I don't know why I've included this, one less thing to think about during the day I think? No this doesn't really deserve to be included.
Are you scared?
I have been writing, journaling and talking with friends and family openly about this.
I am welcoming my mortality with love and am making the most of my time alive smiling.
When it does eventually come, it will be temporary and whatever pain I am experiencing won’t last long.
I’ve met this experience with humour too...it is inevitable when you have terminal cancer. The darkest of humour comes out. This is a light example 👇🏼
The nurses in hospital are very considerate and when I have had visitors have come to me afterwards and asked if I wanted to limit the time they spend with me if I feel too uncomfortable asking them to leave.
My response is “I do a really good impersonation of a tired guy with terminal cancer, if they don’t get the hint to let me rest we’ll work out a signal but for now I am okay”
I've also had a few people say “it's always the nice people that get cancer and die young”. I respond with “we are actually assholes, we just disguise being nice really really well”. (i am joking,..I think I’m a nice guy.)
How do you want your funeral to go?
It’s a surprise. But I do want this song to be played.
I had a friend misheard or misunderstand a few weeks ago that I wouldn’t be having a funeral. I will be my friend (don’t worry). I raised my eyebrow confused at this misunderstanding and also why you were bringing it up hahaha, it was an awkward “don’t worry I am having one” followed by a little chuckle, there will be one and you will be invited. 😂
I have instructed my family to take their time though. So when it happens, it won't be the following week.
There is no rush, I love them and they can hold it whenever they are ready. Be there for them and share stories.
If we had legal euthanasia would you do it? And when?
In Victoria and most states (if not all), it is legal.
I have been through the process and the kit is with me now.
I don’t know if I’ll utilise it though.
When the time feels right I will go however I need to go.
What do you wish you could live to see?
Probably a strange answer….but it’s the first thing that has come to my head. All the rail and road infrastructure our government has budgeted for and has started building. If it does come to fruition. It would be cool to see Melbourne like this.
This is just a wandering thought that I’ve written in spontaneously too. . .it might change and I’ll add to this later if anything else comes up. I think I’ve been surrounded by all the train line work at Peter Mac Cancer Centre and this is why it has come up, I’ve seen it change over the last few years with each appointment and treatment I’ve had.
I also wish I got to see all my little cousins grow up. This piece is about my partners niece, but it also applies to you E and A. As well as all of my cousin's children in Australia, UK and NZ. Your uncle Dug is proud of you no matter what you do.
Most importantly I will also miss seeing family and friends grow, and experience life events with them all.
In summary:
31 years old
Neurofibromatosis Type 1 (NF1). Rare condition 1 in 3000ish people. No genetic history of it in my family.
Approximately 24,000ish people in Australia live with it to varying degrees. I have it relatively mildly compared to others.
Dugald. Rare name.
MPNST in/on/around my spine.
Approximately 50% of people diagnosed with this cancer have NF1.
Of people with NF1, approximately 8-10% of people with get MPNST.
Of people who get MPNST 2-3% have it located in their spine.
Treatment:
Radiation #1: November/December 2022
Laminectomy #1: February forget the date 2023
Laminectomy #2: January 2nd 2024
Chemo (5 rounds of dox/ifos): February 2024-May 2024
Radiation #2: August 2024
Palliative care: August/September 2024
I am now a paraplegic and could be a quadriplegic before I die. Call me Devilishly Disabled Dugald if you wish.
My tumour has fractured my vertebrae. Making some breaths a bit more difficult than others. It also hurts to open my mouth wide. I still feel my heart beating and that will to live is still on my sternum.
As of today, Sunday 15 September at around 2 pm...I feel a slight numbness in my hands and writing this has been physically a bit more challenging than other updates.
There have been times when it has been hard.
I am proud to experience this with a smile on my face.
My tumour is smiling and so am I.
I was built for this.
Live with spirit, love and kindness.
You can endure more than what you think your body and mind are capable of.
Dugald.
**
The update of how progressing from being able to walk to being paralysed needs it’s own space from the above.
Where did we last leave from?
...stealing taxis and radiation or something like that right?
Ok. So since then we engaged in assistance with palliative care at home. Being at home and out of it on painkillers and slowly becoming more paralysed each day with reduced movement and mobility. I recall the pal-care team coming over with a walker and eventually a hospital bed that was set up in my room.
The walker was needed and as each day passed I relied on it more and more. Slowly leaning and putting more weight against it.
I remember about a week ago I was having a chat with a friend on the phone, about writing and where I was at, and then a friend came to visit. I was so out of it on painkillers and in pain that I couldn’t focus on chatting, I told him that I needed to go to hospital and to get my mum Liz.
I called my nurse consultant, Dev, who gave me instructions on where to go to get assessed. We reached the hospital and I got assessed and ended up where I am writing to you from now, the palliative care ward at PMCC.
I remember leaving the house and looking around thinking this might be the last time I see this place. I have loved where I have lived and I have a photographic memory of every room, so I didn’t feel the need to be too sentimental about it all.
Each day I have become more and more paralysed in my legs and up to my sternum. The feeling is like being at the beach and burying yourself in the sand. My legs are very heavy and due to the fracture in my vertebrae, my neck movement is limited.
When I realised that this was coming on and it was very very real. I did not panic. I felt a warm glow of ease and felt very grateful. Since my initial diagnosis in 2022 and being told there was potential for me to become paralysed I ensured I stayed active. I have always been an active guy but the motivation to squeeze as much out of my body became higher.
Over the last few years, my movement was much more limited to what it was before, it has taken adjustment but I found that walking, cycling and pilates were the best types of movement for my body considering my neck and the location of the tumour. Eventually, cycling and pilates became too painful so we were left with walking, which is fine, I love walking.
Since my initial diagnosis in 2022, I have:
Completed 120+ pilates classes.
Walked over 6 million steps
Approximately 5100km (3000km + of these have been conscious ‘im going out for a long walk’ km)
1000-1200km of cycling
I remember my last long walk that lasted 1.5hrs and then eventually my last walk that barely lasted 10 mins about 3 weeks ago. . .it was a moment I realised that we were heading to the next stage.
I lay in my hospital bed, unable to move my body and felt incredibly grateful for how much I squeezed out of my body. I know that this paralysed and possibly quadriplegic state is permanent but due to my prognosis, it is temporary.
Losing feeling in your bowels and bladder is something else. You have to surrender to the experience, resisting it was not on the cards for me. It would be very uncomfortable emotionally and physically to not accept the help around me.
I briefly mentioned the hoist when needing to go to the bathroom. . . I cannot walk and the hoist is used to place me into awheelchair.
These were some of the rawest and most literally naked moments I have ever felt. In a bathroom, paralysed and in a wheelchair, medicated on strong painkillers trying to make a bowel movement that was painful across my whole body. I caught myself staring at myself in the mirror laughing and smiling (covered in sweat and vomit from the nausea) at where I am in my life, I was thinking “Just go with it, this is where we are now, you are in safe hands. You are built for this”.
Dear Dugald,
After our chat at the surgery a few months ago I am sad to read your blog, but glad you have good spirits and the love of your family friends, and partner.
In our household, your bravery is confronting, and particularly for the blokes, hard to accept or even talk about.
I think about the happy times and the great conversations we have had.
Peace be with you Dugald.
From a person who is not that religious. The words seem not adequate, but appropriate.
Love you Dugald.❤️
I have loved reading your posts Dugie. You have filled me with so many emotions and I have laughed and cried, but mainly laughed. Your writing talent was clearly inherited from your beautiful mum. I am looking forward to my next read. Sending love xx