Cancer patients often talk about calendars. I have no big things on my calendar beyond the end of November. Until now. I ended up in an incredible conversation with a group from Barcelona. When they discovered that I spoke Spanish, I got a dinner invitation. Dying is not an option. I have turn up in Barcelona in September 2025 for an incredible paella. I can live for that.

World Conference on Lung Cancer

After my issues with wound care, I want to share an update about my journey. I was released from the hospital with clear instructions on how to take care of my wound. I also had an appointment to see Wound Care the next week. On Thursday, I received a call about a cancellation. The  nurse offered me an earlier appointment on Friday instead of Sunday. I quickly accepted the chance to see a professional. I thought I was doing okay, but having someone check my wound gave me reassurance that it was healing well.

After the 5K Give a Breath run on June 1st, my life took a bit of a turn and I ended up in hospital for four days. I'm going to recount what happened in some detail and it may be a bit graphic for those who don't live in a medical world. I tell the story as a reminder that immuno-compromised doesn't mean "wearing a mask" or jump to the head of the line in ER. It can be life-threatening.

Life has had some pretty wild ups and downs over the last few weeks.

Beginning with the one of the joys though, I had the pleasure of pet sitting for a friend. I looked after their bubs (a less stigmatized name for pet rats)for a few weeks in early May while they accessed Ioboga treatment for chronic pain.(https://www.nytimes.com/2024/03/05/health/ibogaine-psychedelic-opioid-addiction.html) The bubs provided a lot of cuddles and joy in a busy time. I'm seriously tempted to look into a couple for my tiny space. I do miss having pets.

Scheduling

Planning seemed pretty straight forward but as the weeks passed with no chemo appointment, I started struggling. The low point came on a Friday afternoon when I went for my normal run and after 4K had to stop. I was coughing badly and couldn't stop. I finished the last kilometer hobbling and doubled over. I found myself short of breath on several occasions and it scared me. Is this how I'm going to die? Waiting for a charge nurse and a booking clerk to find a slot in schedule for me?

Three weeks ago my oncologist's clerk called. They asked if I could make a scheduled phone appointment into an in person visit. With only two hours notice there really wasn't time to worry.  I picked up the phone and called my faithful caregiver, Sandra, wondering if she would  take part via phone in the consultation.

When the oncologist walked into the room, he looked at me and said, "We know what that cough is. Osimertinib has not been working at all. Your main tumour is growing and there are two new spots." Not unexpected but still a bit of a surprise.

"Strangely you have more reason to live after you learn that you are dying. There's more poignancy to moments. Joy in my sorrow. Death lingers in even the most innocuous of moments. Enjoy the moments of gratitude. Recognize the beauty and the tragedy in the world around me. There is an awesome amount of grace that I have been extended. The least I can do is return that grace."

 January and February were not quiet months.

Grant review for Health Care Unburdened took over January.   As the only patient on the review board, I was in a unique position to raise questions and concerns about grants. The CMA (Canadian Medical Association) will announce the winners in April and I will have more to say then.

February turned into a scramble to catch up on all the things that had slid into the background. Applying for more conferences, catching up on webinars and reading, and most importantly reconnecting with the others in my life filled my days.

I'm pretty excited about my part in an article on people facing death. As always I'm surprised at what journalists take from my story. But it is pretty accurate. I'm still trying to figure out why I was introduced as the "bad boy of patient advocates."

Advice From 30 people Who Really Started Living When They Found Out-They-Were-Dying