Grand Plans
I had grand plans today. After going through breast cancer surgery a couple of months ago, I had signed up to host a Pink Ribbon morning tea today to raise funds for further breast cancer research. I was really looking forward to doing some baking, to going in to the university where I work and seeing everyone with some treats for morning tea and then maybe even hosting a virtual morning tea online as well. But well, things did not go to plan and I haven’t done any of these things. I also had to cancel some other commitments I had booked in today. And I am struggling with this. So much.
Overcommitting and underdelivering
Overcommitting and underdelivering has been something I’ve frequently struggled with throughout my career as an Occupational Therapist and particularly when I was teetering on the edge of burnout. Historically, I’ve considered this to be related to people pleasing and taking on too much (you know if you ask a busy person to do something…), perfectionism, time blindness, task switching difficulties and struggling when novelty wears off (hello, neurodivergence). It’s long been something I’ve disliked about myself and something I have been working on for years. Setting better boundaries. Communicating more clearly. Progress not perfection. All the things! Even in my post burnout life, I’ve had to work on this because as an OT, OT mentor and someone who loves delivering education and training, there are so many opportunities to be involved in the OT profession- and I want to do it all!
But, since my cancer experience, I’ve got to say that I’m struggling with over committing and underdelivering more than usual. Because my capacity has changed and it fluctuates. My baseline capacity is less than it was and my capacity to do things changes weekly and sometimes daily. And the relationship between what I do and how I feel doesn’t feel logical or even related. Yesterday I had a wonderful full day of mentoring and cooked a new recipe for dinner. Today I have a severe pain, brain fog and everything is an effort. There are times I can do things physically, but the mental fog makes any cognitively demanding things (like marking and report writing) feel like an insurmountable mountain to overcome. There are times when I find a zone of focus and can concentrate and do deep work, whilst physically my shoulder, neck and chest ache. Other times, I feel like I want to go out but when I get dressed nothing looks right and I feel sad, lose all motivation and energy and stay home on the couch doom scrolling. Or I can get dolled up and go to the Allied Health awards, with significant emotional energy used to wear a dress and consider using or not using a breast prosthesis, and expend physical capacity walking around in heels- and enjoy the night immensely (and crash at home the next day as I would always have done!). It’s disconcerting to your sense of self I think, to not know or be able to predict how you might feel from day to day.
Reflections on duality
I have reflected on some of these challenges with an OT who reached out to me after hearing about my breast cancer experience. And she expressed beautifully about the duality that exists in breast cancer survival. It’s one of the hardest things about the experience- that two things are frequently true at the same time, even though it feels as if that it should not be that way. It means living with uncertainty. It means there is increased load to adapt to what a week, day or moment might bring because things change. It means that joy can be mixed with sadness. Gratitude sits alongside frustration.
For me, this looks like
- Having capability but not capacity. Knowing I am capable of many things (including baking pretty pink cupcakes and going into the office) but not having the mental, physical or emotional capacity to do that today.
- Being grateful to be alive and feeling sad, annoyed, irritated and frustrated at the experience of living. I am so grateful that I found my breast cancer early and that I “only” needed surgery and it’s been pretty fucking annoying and inconvenient to have this experience that I didn’t want or ask for and that has been so full on. I am also so grateful that I had a successful surgical outcome, but the recovery journey has been unpleasant, drawn out and much more than anyone prepared me for. I am grateful to not have to have chemotherapy or radiation therapy which I know are invasive and have difficult side effects. But hormone therapy isn’t a walk in the park either. I am grateful to have had a partial reconstruction at the time of surgery but grieving for the change in my body and how my clothes fit and feel.
- Feeling privileged to be a health professional and be able to navigate the health care system (and grateful to have the health system we have in Australia) whilst also being frustrated at the limited information there was about aspects of my recovery and having to navigate so much of that independently- and angry about what this means for others with less health literacy or financial resources.
- Happy to not need to see the surgeon for 12 months and to be cleared to participate in rehabilitation, strength training, exercise and to no longer have any restrictions on lifting or reaching. And frustrated that it’s not remotely easy to get back into any of those things with an extremely deconditioned body and where all of that feels extremely hard and effortful.
- Impatient and frustrated with my body and with myself for struggling. And yet knowing that I want, need and deserve self-compassion and grace. Because, as I say all the time to clients and OT’s that I work with, it’s hard because it’s hard. It’s not hard because I’m doing it wrong. But yet, that too is hard to accept.
What do you want and need?
One of the questions my supervisor always asks me is “What do you want? What do you need for you?”. And as I write this, that is going through my head. What do I want? What do I need? Why am I writing this?
I am absolutely not writing this because I want anyone to feel sorry for me or sad for me. Yes, it’s been shit but I truly am grateful to be here. Absolutely 100%. I thank God for the gift of life and for the surgeon and health professionals that make this possible. But I do think that there is a piece beyond gratitude for survival. Because that’s the minimum. And frankly, it sucks that it’s still the case that every day 9 Australians die from breast cancer.
I think for me, it’s about being seen, being heard and being acknowledged and understood. And it’s about saying that I see, hear and understand that this could be the experience of others. That by expressing this and saying it out loud, that we could all extend compassion to anyone else whose capacity might fluctuate or are coping with challenging situations and the duality that comes with that. Because it’s not easy to understand and it’s not easy to go through!
A gentle call to action
So, even though today I did not host a Pink Ribbon morning tea, if this has resonated with you in anyway at all, please consider donating to my fundraiser. 1 in 7 women will be diagnosed with breast cancer in their lifetime, there are still too many deaths from breast cancer and fundraising helps researchers develop new and targeted treatments with less side-effects. And if you donate today, I promise I’ll owe you a cute pink cupcake in the future and when I have capacity, I will 100% deliver this to you!
Also, I would love to encourage any women reading this to please please please check your breasts! The only way that I discovered my breast cancer was through a self-examination. I am so grateful that I chose to check my breasts that day and picked it up as the lump was small. I also had two other tiny, undetectable lumps and a large spread of pre-cancerous cells. If I hadn’t found the lump when I did, then it is highly likely to have spread to my lymph nodes with much more serious consequences.
I am under 50 so wasn’t scheduled for regular mammograms but you can actually have one in your 40s now through the Australian BreastScreen program
If you aren’t sure how to check your breasts, please see the information sheet at the bottom of this page.
Some final thoughts
Since sharing my experience on social media, I’ve had a number of OTs and other health professionals reach out whose lives have been touched by breast cancer or are going through breast cancer themselves. I am really happy to hear from anyone who would like support or just to connect. I am absolutely not an expert and my “journey” is not going to look or be the same as anyone else’s. But I have had so much support from other OTs who are cancer survivors which provided me with reassurance and just a gentle sounding board for frustration, angst and feeling all the feelings (looking at you Bronwyn Paynter– for whom I’m beyond grateful as well as the beautiful OT who reached out to me directly). It would absolutely be my privilege to be a safe space for anyone else in the midst of it all themselves.
And finally, I am back at work with OTs delivering OT mentoring and supervision as well as education, teaching and training. I am taking it easy and dealing with my fluctuating capacity as I’ve described but I am back at work part-time. I’m not accepting clinical referrals yet but still have a few ongoing clients who know and understand my circumstances and have accepted my reduced capacity graciously. But I think this experience has crystallised for me, more than anything else, that OT mentoring and supervision, teaching and training is what I love doing and where my heart, energy and passion lies. So please reach out if that’s something you’d like to explore.
