Wonderful to read and hear from you Jo! I appreciate you sharing your experience with radiation - I didn't know about holding you breath! I felt anxious just reading about it! I'm glad you were able to stay at a hotel near the treatment center, that would have been a lot of driving. Looking forward to reading some of the papers/projects you included. Love the emphasis on people with lived experiences leading and directing research, especially having patients lead with the researchers as allies - it just makes sense! Looking forward to reading more from you when you have the time and energy to write!
Thanks so much Dorota! I appreciate your kind words, support, and encouragement more than I can say :) It's been quite a ride these last few months. I look forward to writing and reflecting more this year. I have one cool manuscript in the works already, and we'll see what else comes along! And, as ever, I really do hope to post more here this year lol!!
Hi, I just want to thank you for sharing this post and your publications.. as well as gracefully continuing to pursue writing and research despite the challenges.
As a PT who works with people in pain daily (and recently saw many cancer patients who suffer from pain due to side effects of radiation or chemo), I appreciate the opportunity to learn from others and get a better understanding. Experiential learning is so important, and getting feedback from patients has been the most valuable tool in teaching pain management. There is still so much to learn on this journey, and I would appreciate any further recommendations.
Thanks so much for your comment, kind words, and curiosity, Dorette! Much appreciated. And thanks for sharing how learning from patients has been so valuable for you, that is wonderful to hear.
My breast cancer experience has been so different than my chronic hip pain experience, and I do hope to write more about that in the new year. One thing that really stands out to me, though, is that all the pain and symptoms I experienced with breast cancer were the result of treatment, not the cancer itself. I had two surgeries (lumpectomy and lymph node removal, then 3 months later an oophorectomy) and a month of radiation, all of which came with their own pains, discomforts, restrictions, worries, healing.
It's also intersting to me that with my chronic hip pain, especially in the early years when things didn't make sense, I was so worried about it being something serious and that worry came with a lot of baggage and problems. It wasn't until I had a better understanding of pain that those worries were assuaged. But with the breast cancer, something serious WAS happening, yet I'd had no symptoms at all. My tumor was found on a routine mammogram (which I am so grateful for!). So I had immense pain and nothing seriously wrong, and no pain and something seriously wrong! (well, no pain until treatment, at least!)
And one thing I've learned is that even when your cancer is treated successfully, it doesn't really go away. There's a shadow cancer that hangs over you, with worries of recurrence or metastasis always lingering, following you around. At least for me right now. I recently read some of Audre Lorde's writing about her own breast cancer experience, and how it metastized but wasn't diagnosed until years later (for her, into her liver). I read about that in her book of essays, Burst of Light. She also wrote The Cancer Journals, about her breast cancer experience, but I can't read that yet. Maybe this year!
I recommend reading those sorts of stories, though, to get a better understanding of what people experience. Lived knowledge of pain, or anxiety, or disease, or being a complex human experiencing complex things, is so valuable and such a necessary complement to scientific knowledge.
If that speaks to you, I also recommend exploring the qualitative pain literature. Some older papers may be good additional reads, too:
A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies:
Beyond these couple, Fran Toye and Tamar Pincus (who I co-authored the above papers with, respectively), have some great stuff out there. Tamar has created some great videos, too, that could be shared with patients that I think are wonderfully done, such as this one, called Pain and Me: https://www.youtube.com/watch?v=ZUXPqphwp2U
I also recommend Peter O'Sullivan's work, particularly if you work with people experiencing low back pain, such as the RESTORE trial: https://www.restorebackpain.com/
I think those are good places to start! I'd love to hear your thoughts about any of them, too, and to continue the discussion if that's of interest to you! And if these particular recommendations don't resonate, I'm happy to offer other suggestions as well.
Thanks again so much for taking the time to comment, and for all you do alongside the people with pain you see daily. Happy new year to you as well!
Thank you, I am definitely going to work through all these links and I'll get back to you.. I appreciate sharing more about your own experience as well.. it is so helpful.. have a beautiful day!!
A great article Jo. I am so glad that your treatment is finished. I had no idea about the "breathing' bit and the difficulties involved! The article that you and Blair wrote is excellent!!
Thanks so much, Mary! I do love that article (I may be biased lol). I am two weeks out from my last surgery as of today, so I'm very grateful to have the two surgeries and radiation behind me now!
I miss you my friend. I hope you have had some peace and joy over the holidays. I know it's already 2025 there, I hope it's off to a good start! Much love my friend.
Sorry! I didn't realise that you still had another surgery to go! Good luck and I hope it all goes well. Miss you SO much. We must have a catch up with the others when you are ready. Much love from me too. ❤️
Let's catch up soon. I'm feeling good. I meet with my oncologist January 8th, and then Ben Darlow will be here for a week (the 12th-19th), so maybe sometime after that! Love you my friend.
Wonderful to read and hear from you Jo! I appreciate you sharing your experience with radiation - I didn't know about holding you breath! I felt anxious just reading about it! I'm glad you were able to stay at a hotel near the treatment center, that would have been a lot of driving. Looking forward to reading some of the papers/projects you included. Love the emphasis on people with lived experiences leading and directing research, especially having patients lead with the researchers as allies - it just makes sense! Looking forward to reading more from you when you have the time and energy to write!
Thanks so much Dorota! I appreciate your kind words, support, and encouragement more than I can say :) It's been quite a ride these last few months. I look forward to writing and reflecting more this year. I have one cool manuscript in the works already, and we'll see what else comes along! And, as ever, I really do hope to post more here this year lol!!
Hi, I just want to thank you for sharing this post and your publications.. as well as gracefully continuing to pursue writing and research despite the challenges.
As a PT who works with people in pain daily (and recently saw many cancer patients who suffer from pain due to side effects of radiation or chemo), I appreciate the opportunity to learn from others and get a better understanding. Experiential learning is so important, and getting feedback from patients has been the most valuable tool in teaching pain management. There is still so much to learn on this journey, and I would appreciate any further recommendations.
Happy New Year!
Thanks so much for your comment, kind words, and curiosity, Dorette! Much appreciated. And thanks for sharing how learning from patients has been so valuable for you, that is wonderful to hear.
My breast cancer experience has been so different than my chronic hip pain experience, and I do hope to write more about that in the new year. One thing that really stands out to me, though, is that all the pain and symptoms I experienced with breast cancer were the result of treatment, not the cancer itself. I had two surgeries (lumpectomy and lymph node removal, then 3 months later an oophorectomy) and a month of radiation, all of which came with their own pains, discomforts, restrictions, worries, healing.
It's also intersting to me that with my chronic hip pain, especially in the early years when things didn't make sense, I was so worried about it being something serious and that worry came with a lot of baggage and problems. It wasn't until I had a better understanding of pain that those worries were assuaged. But with the breast cancer, something serious WAS happening, yet I'd had no symptoms at all. My tumor was found on a routine mammogram (which I am so grateful for!). So I had immense pain and nothing seriously wrong, and no pain and something seriously wrong! (well, no pain until treatment, at least!)
And one thing I've learned is that even when your cancer is treated successfully, it doesn't really go away. There's a shadow cancer that hangs over you, with worries of recurrence or metastasis always lingering, following you around. At least for me right now. I recently read some of Audre Lorde's writing about her own breast cancer experience, and how it metastized but wasn't diagnosed until years later (for her, into her liver). I read about that in her book of essays, Burst of Light. She also wrote The Cancer Journals, about her breast cancer experience, but I can't read that yet. Maybe this year!
I recommend reading those sorts of stories, though, to get a better understanding of what people experience. Lived knowledge of pain, or anxiety, or disease, or being a complex human experiencing complex things, is so valuable and such a necessary complement to scientific knowledge.
If that speaks to you, I also recommend exploring the qualitative pain literature. Some older papers may be good additional reads, too:
A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies:
https://academic.oup.com/painmedicine/article/22/6/1333/6159703?login=false
Patient-centered consultations for persons with musculoskeletal conditions: https://pubmed.ncbi.nlm.nih.gov/36494862/
Beyond these couple, Fran Toye and Tamar Pincus (who I co-authored the above papers with, respectively), have some great stuff out there. Tamar has created some great videos, too, that could be shared with patients that I think are wonderfully done, such as this one, called Pain and Me: https://www.youtube.com/watch?v=ZUXPqphwp2U
I also recommend Peter O'Sullivan's work, particularly if you work with people experiencing low back pain, such as the RESTORE trial: https://www.restorebackpain.com/
I think those are good places to start! I'd love to hear your thoughts about any of them, too, and to continue the discussion if that's of interest to you! And if these particular recommendations don't resonate, I'm happy to offer other suggestions as well.
Thanks again so much for taking the time to comment, and for all you do alongside the people with pain you see daily. Happy new year to you as well!
Thank you, I am definitely going to work through all these links and I'll get back to you.. I appreciate sharing more about your own experience as well.. it is so helpful.. have a beautiful day!!
A great article Jo. I am so glad that your treatment is finished. I had no idea about the "breathing' bit and the difficulties involved! The article that you and Blair wrote is excellent!!
Thanks so much, Mary! I do love that article (I may be biased lol). I am two weeks out from my last surgery as of today, so I'm very grateful to have the two surgeries and radiation behind me now!
I miss you my friend. I hope you have had some peace and joy over the holidays. I know it's already 2025 there, I hope it's off to a good start! Much love my friend.
Sorry! I didn't realise that you still had another surgery to go! Good luck and I hope it all goes well. Miss you SO much. We must have a catch up with the others when you are ready. Much love from me too. ❤️
Let's catch up soon. I'm feeling good. I meet with my oncologist January 8th, and then Ben Darlow will be here for a week (the 12th-19th), so maybe sometime after that! Love you my friend.
I will put the wheels in motion! Love you and more good luck for 12th - 19th ❤️