66. Mutley, meet Max

In the midst of a global pandemic, this week gave me a feeling of optimism – I met Max. Or more importantly, we got the opportunity for Mutley to meet Max.

As usual, a quick recap. After beating breast cancer in 2017, it returned in 2018. Still as breast cancer, the nasty cells had escaped my breast and taken up residence in my brain and my lung and I nicknamed them Dastardly and Mutley, respectively.

At the time, Dastardly was causing more damage in my brain than Mutley was in my lung, so we dealt with him first. After that, other things came up; issues in my spine, a Dastardly puppy in another part of my brain, growth in my vertebrae, a lesion in my hip, and recurrence in my spine. Each of these we’ve dealt with as they arose. It’s not systemic treatment to tackle the overall disease (we’re still trying to find a fix for that) but as things become troublesome (ie they stop me getting on with life) we deal with them in order of priority.

Through all this, it’s been on my mind that Mutley was still doing his thing around my lung, left relatively unchecked. I’ve been having pain around my ribs, my chest bone and side for a while, but my Oncologist has focused on the low-hanging fruit, the stuff which always seemed to be more pressing.

The last such treatment was this week, when I had radiation on my spine, to stop the cancer putting pressure on my spinal cord. During this week’s trips to the radiotherapy team at the VU in Amsterdam, I met Dr Max Dahele, a specialist in Radio Oncology.

Immediately, I felt he took a more proactive interest in my case and he’s been pretty hands-on this week; rearranging equipment to enable me to get diagnostic scans faster, checking how treatment is going and explaining things in detail – not just showing me the scan images, but doing sketches of how my spine is structured, where the cancer is, where they’re zapping it etc, drawing in pictures and helping me understand it much better.

Sensing his expertise and, dare I say it, passion for what he clearly understands really well, I asked him about Mutley, saying I was still having pain around my left lung and asking if there’s a reason we can’t treat it with radiation? I appreciate this is like trying to take out an army with a sniper, but it’s buying me time which, this time last year, my Oncologist admits he didn’t expect me to have, and I’ve proven him wrong.

So on Friday, Max confirmed he had the latest scans and input he needed to have a look at whether zapping Mutley is an option. It’s worth noting that Mutley is not just one lesion – sadly he’s more like a tribe; a couple of big dogs and a few smaller puppies, all living around my left lung. The big dogs are at the bottom (causing the pain under my rib cage) and on the middle side of my lung (causing the pain in my chest). My description of where it hurts matches what he can see these on the scans, and he sees no reason we can’t have a go – albeit recognising we still need to find a broader fix. He therefore gave me names of two specialists he works with, and suggested I could also contact them for a second opinion on the bigger picture, which I plan to do.

My Oncologist has been great to date, but I have started to get the feeling he’s giving up on me – not to the degree of stopping treatment, but the enthusiasm I saw in Max suggested more opportunity than I’ve seen lately, coupled with the motivation (and recommendations) to be able to ask for a second opinion.

This will be a tough time to find resource to try something new or experimental, I’m sure, given that health services are coming under increasing pressure from the pandemic. But I’m not giving up. If Max can help buy me time by helping me keep life as liveable and lovable as it is now, that’ll do for now, while we look into longer-term options. He’s therefore written to my Oncologist (who ultimately ‘owns’ my case) to propose what we can do and, assuming he agrees, we’ll finally start to tackle my lung.

So Mutley – consider this advance warning: you and your puppies may have been having your own little party around my lungs for 18 months now, but watch your backs – we’re coming for you…

#MaxvMutley #Werecomginforya #Wevestillgotthis

#BoxyOut