Running like I smoke two packs a day

I've enjoyed getting back into the year. This is the first time in four years that I am not preparing for, or recovering from brain or spinal surgery at the start of the year.

Last time I updated I just had my radiotherapy session for the brain tumour. This remediation worked, stopping the growth of the tumour the surgeon couldn't remove. I had a scan in September 2023 and was given this news by my oncologist. It felt great and I got to celebrate a little with the family. After persistent growth, this VHL stuff was at bay hey?

I got a call later in the day from my surgeon. The first thing she said was "Good news about the brain but did the oncologist talk to you about your spinal scans?".

Spinal tumours. Forget about those.

They had been there since my initial spinal surgeries in 2017/18 and had not grown. Always there but channelling higher order of problems thinking, I had not given these any real consideration.

"Yeah they've grown, and by a fair bit".

All the emotions of feeling elated at good news earlier in the day and now this. I hadn't really processed the news from the morning. It was a busy day, other stuff was happening, but in my mind I was thinking let's work not to get too high, not to get too low. Take each day at a time, reflect on what worked well that day and what I can try better for tomorrow. Same with the news I get, process it as I can

It also forced my hand too, now was the time to start the medication. My work to get it at a reasonable amount had failed. Me vs Big Pharma. As my cousin asked me rhetorically, "What's a life worth? The cost of the drug". I reflect on the privilege of being in this position, but the injustice that for many, this is never an option.

So I started the medication in October. It works to reduce tumour growth, but a side effect is anaemia. It works to starve these tumours of red blood cells, but it works across the body resulting in tiredness, headaches and lower energy.

In November, I also got to meet people in the VHL community who are working together to make this drug affordable to all. I met people with my condition in their 70s which gave me hope for the longer term. Prior to this, I had met one person with my condition, now I have a family of 13. A common theme in our working group was how lucky we are to get the care we get, but also the increasing isolation of every surgery and people just expecting that you'll be alright. It's good to be able to demonstrate this, it's just a lonely road.

Results, so far, are good. In scans on my brain and spine, the tumours all reduced in size by at least 2/3rds after 7 weeks of medication. My surgeon was stunned with the turn around. After 17 years of this condition it was the first piece of good news I've ever had.

I have also been working to fulfil my other goals too. Getting clearer on what I role I'm playing in this world. The writing on Scaling Impact I published on the Portable site as a first version (love your thoughts on it), and doing more reflection of how we can enable change using design and technology. I'm looking to write more on that this year.

Health wise, I'm still at it. Completed 450 days straight of meditation and I'm back to running. Even though the medication makes me feel like I'm smoking two packs a day, I'm hitting the goals I have for myself. Running 15km in one go, running over 140km in January. I'm slower, I stop every now and then, but I'm keeping at it. Take each day at a time, reflect on what worked well that day and what I can try better for tomorrow. That's the take away here I reckon, just keep showing up, especially when it's hard.

I have work to do this year to help get this medication on the PBS (so it can be open to more people), advocate for the VHL community and fulfil my professional goals. I may be more tired, and have headaches now and then, but I am here and showing up as best I can each day.