Some thoughts about breast cancer treatment and a few publications and projects from this year

It's been another doozy of a year. A big thanks to you all for your endless support, kindness, and encouragement.

When I was first diagnosed with breast cancer, and knew the road ahead would be bumpy for a bit, I stepped back from many of my work roles to focus on treatment and recovery. At least that’s what I said, but ‘focus’ was not really something I’ve been able to do much of the last few months. It’s just been a matter of getting through each thing, without much capacity to do much else. I’ve been here before, it’s reminiscent of those early chronic pain years, when all I could do was get through each day, each hour, each minute, each moment.

But you forget what it was really like until you’re in it again.

I had radiation treatment throughout November 2024, It was a stressful and strange time, having to stay in a hotel near the hospital during the week, but we were able to come home on weekends. On November 9th we were graced with this sunset. Life is always filled with both beauty and pain, anxiety and joy, worry and gratitude.

The fog of radiation anxiety

I definitely forgot. When I found out I had to do 20 radiation treatments, and because those treatments were a minimum of a 3-hour round trip drive from home we decided we’d stay at a hotel near the hospital, I thought to myself, ‘oh, I’ll be able to catch up on reading and will write a ton’. As though we were going on vacation, with nothing to worry about, nothing but leisure awaiting us.

I got exactly zero writing done during that month. And barely even read. To be honest, I don’t really know what I did to pass all that time! It didn’t help this was all during the election here in the States, too, and that the results did not go our way.

What filled up my brain and drowned out most other things was daily radiation treatment, for which I had to hold my breath because my breast cancer was on the left side. Now, it didn’t sound like a big deal to hold my breath for 15 or 20 seconds at a time, as the machine moved around me to zap my boob, but it ended up being a big fucking deal. It’s not like you just hold your breath any which way, it has to be the exact right amount each time. If you take in too much, you have to let a little out, if you take in too little, you have to take in a little more.

None of that time dialing in your lung inflation counts toward your zapping time. Even knowing that I could hold my breath for much longer than was asked of me, even knowing the machine would shut off if I took more breath in in panic, or let all my breath out in panic, even knowing all these things, I was an anxiety-ridden mess each day. (Mostly on the inside though, of course I was fine when asked.)

I only really realized just how anxious all this breath holding was making me when I found out after my 15th session that my next 5 sessions were ‘boosts’ that were more targeted, so I wouldn’t have to hold my breath. I almost danced a jig. I was elated. I told John we had to celebrate, which we did by ordering Jet’s Pizza for dinner. My next five sessions were a friggin’ breeze in comparison. It was amazing.

Peer support for the win, again

Now, you may be thinking, it can’t have been that hard. I know! I thought so, too! Until I had to do it. Especially when the patient waiting area was busier than normal, or things were running late, and I felt the added pressure of not fucking up my breathing, which only delays things further, for everybody. (If you panic breathe, or just let a little too much in or out, the machine shuts off automatically to prevent zapping your lung or heart, which is great, but also means you have to do it again, so the machine has to reset, and all that jazz. For each session I’d have to hold my breath like 8 times, to plenty of opportunities to panic!)

I mentioned this one day in the waiting area, and how ridiculous I felt for being so anxious about the breathing thing, and a beautiful thing happened. All the patients in the room validated my experience, my anxiety, my guilt, my very being. One gentleman looked pointedly at John and said ‘wait until it’s you in there having to do it.’ I hope that never happens, and John has been nothing but supportive, but I was so damn grateful he said that. All the other patients chimed in, too. I don’t even know if they had to hold their breath, it didn’t matter, it’s friggin’ stressful to go through this shit, and they all had my back. Even if I panic-breathed and made their wait even longer. I’m so grateful to them all.

The best peer supporter there ever was. Coco was such a champ as a hotel dog/princess for a month! Love this girl so much.

All this to say, I haven’t written much because I couldn’t think while going through treatment for breast cancer. And I appreciate all your support through this time. If you remember, last year was also a doozy, and I’d promised to get back to more writing this year. Sorry about that!

While the breast cancer diagnosis derailed work and writing for a bit, I was a part of some cool things this year, including a few projects and publications I want to share.

ENhancing TRUST in Pain Evidence (ENTRUST-PE)

One thing I’m super proud of is the ENTRUST-PE Framework that we published this year. There’s a white paper, fact sheets for various people and institutions in the research ecosystem, a video, and a call to action, which was recently published in The Journal of Pain: Enhancing the trustworthiness of pain research: A call to action.

ENTRUST-PE Research Ecosystem

For all of the resources, including information sheets and the white paper, check out our website at entrust-pe.org or see our project on the Open Science Framework.

ENTRUST-PE, Journey of a Research Paper

As you can see in the research ecosystem and Journey of a Research Paper images above, Patient & Public Involvement and Engagement is a core value for ensuring the trustworthiness of pain research (and health research more broadly). I’m really stoked to have been a part of the team that developed the framework, and will be even more stoked if it is shared widely by all of you who are interested in trustworthy research, which must include people with lived and living experience of pain and/or caregiving for people with pain from the communities this research is meant to serve.

Osteoarthritis Papers

I’ve had the good fortune of working with some incredible author teams this year, particularly in the world of osteoarthritis. Huge shoutouts to Dawn Richards, Jane Clark Samantha Bunzli, Naomi Simick Behera, Melanie Brown, and Ben Darlow for bringing these papers to life, and for valuing the bringing together of scientific and lived knowledge. These two papers are both open access, too!

The first, published in June and led by Naomi, was How Does Osteoarthritis Education Influence Knowledge, Beliefs, and Behavior in People With Knee and Hip Osteoarthritis? A Systematic Review.

Figure 2 from the paper: Recommended strategies for osteoarthritis education impact.

The second is a narrative review of how we make sense of osteoarthritis (we being both patients and clinicians), which was led by Ben, and is a wonderful complement to the above systematic review. Making sense of osteoarthritis: A narrative review was just recently published online and will be in the January issue of Osteoarthritis and Cartilage. The author team, led by Ben, included three of us with lived experience of OA (Dawn, Jane, and me). Pretty cool, right?

Fig. 3. Infographic – key actions clinicians can take to support people to make sense of OA in ways that encourage participation and support goal attainment.

PXP: For Patients by Patients

In August, Alex Haagaard and I presented at the Science of Team Science conference on going ‘Beyond Co-Production: Patient Partners Leading with Researcher Allies Supporting Them’, all about our experience with PxP.

Alex and I were also part of the authorship team, led by Dawn Richards, of the peer-reviewed open access paper Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners.

PxP has been such an amazing initiative to be a part of, as it is truly patient-led, with amazing support, resources, and funding from our allies in academia (particularly Karim Khan and Hetty Mulhall).

Figure 1: PxP Inputs and Outputs. An overview is provided of the human, financial and operational resources as well as the expertise, insights and skills that went in to PxP 2023. The various outputs include the 3-day conference, a community, and learning and resources

I also wrote a few blog posts for PxP this year: PxP: Partnering to Make Research Stronger, One thing I’d like to see changed as a result of PxP, and Confidence in Building – We Got This!. I highly recommend checking out all the other blog posts, including Alex’s post What social determinants of health actually do within the scope of a person’s life, and Oluwafemi Ajayi’s Clarion Call for Africa to Embrace Patient Inclusion and Patient Engagement in Healthcare Research.

PxP is an amazing initiative. I’m so grateful to be a part of it!

One last paper from 2024…

Last but not least, and not open access (if you want it just hit me up and I’ll get it to you), is a commentary I co-authored with my friend and fellow co-chair of GAPPA, Blair Smith. Patient engagement in pain research: no gain without the people in pain. We wrote it in response to the recent comprehensive review, Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations.

I am so heartened so see so many recent recommendations and guidance for involving patients/people with lived experience in pain and medical research. In addition to the IMMPACT recommendations, and of course our recent ENTRUST-PE Framework, this year the World Medical Association Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Participants included ‘Meaningful engagement with potential and enrolled participants and their communities should occur before, during, and following medical research’ for the first time in its 60 year history (better late than never, I guess!).

I know I’m biased, but I do love the commentary Blair and I wrote. It’s a brief read, so I hope you’ll give it a glance, yet in those brief paragraphs we tackle everything from compensation to using anti-racist research frameworks, but if you just want a summary, I’ll share my favorite paragraph (PWLE stands for People With Lived Experience, we address how this is an imperfect term, yet it’s a pretty well established one so it’s what we used):

Just as scientists and clinicians are experts in the methods and treatment and bring a wealth of experiences, knowledge, and expertise to a research project, PWLE are experts in the experience of pain, seeking care, and managing their pain in their day-to-day lives, and their “way of knowing pain” is valid and invaluable. By bringing scientific knowledge together with the knowledge gained from lived experience, better research questions may be asked, even at a molecular or mechanistic level, and more innovative and transformative treatments may be discovered. The expertise of PWLE can therefore help direct and measure the real-world impacts of pain research, which can and should extend beyond clinical pain research to include basic science and preclinical research.

Blair Smith and Joletta Belton, Patient engagement in pain research: no gain without the people in pain.

That’s all folks!

Thanks so much for being here, it means the world to me. I know it was a strange and hard year for many of you, too. I see you. I’d love to hear updates from you, and look forward to being in community in 2025.