How I Learned How to Manage My Lymphedema
It was in the in-between when I first heard the word lymphedema.
At some point following my diagnosis, in between scans and paperwork, IVs and tears… somewhere in that chaos, this strange word was spoken by my oncologists and nurses, letting me know I would likely develop lymphedema as a result of my cancer treatment.
In 2017, I was 39 years old. I had just started a new job, had a spunky four year old girl and was knee-deep in a home renovation, when I was diagnosed with stage 3 Triple Negative Breast Cancer.
Fast forward one year later, and I had completed a lumpectomy, four months of chemo, a lymph node dissection, radiation and was nearing the end of six months of oral chemo. I was about to start my return-to-work and things were looking up. I even had some hair. And I had plans! These plans were things I focused on to motivate me through treatment – bucket list things that I desperately wanted to do once I was well, including scuba diving. Then one night I began to notice my left breast was red and sore. It progressively got worse, causing the breast to feel hot, unusually firm and swollen. It took on a very un-breast-like shape and reminded me of a torpedo! I let my oncology team know and was diagnosed with moderate to severe lymphedema of the breast. I remember thinking “Lymphedema of the breast? But… I thought it was only in your arm?” I hadn’t given lymphedema much thought since my medical team first mentioned it. I had been maxed out emotionally and physically and there was no room left to give it any consideration, until now.
So, I googled lymphedema. And as expected, I was confronted with an endless stream of worrisome medical photography. Cue my spiral. “How could this be happening?” I thought. I was just getting back on my feet, and now I had to contend with lymphedema as well as cancer? How would I manage this? I don’t want to wear a compression sleeve! Was my arm going to swell up too? Would I still be able to do all the things I wanted to do? How much more was I expected to take? Would I be able to scuba dive? It all seemed insurmountable and I was so tired. Feeling defeated, I was connected with the Lymphedema Clinic at my cancer centre.
I remember attending my first assessment, where the clinician carefully measured my upper arms, forearms and hands, and did a physical examination of my breast, confirming I did have lymphedema in my breast and very mild lymphedema in my left arm. I was glum and said I had been looking online and asked if what I saw online was my future. The clinician smiled and asked if I saw photos of gigantic legs and and arms? I nodded and she said not to worry as those were worst-case-scenarios and they would step in long before anything like that would occur, and assured me this was a very manageable condition and I would be just fine with some life modifications. I left the clinic with a prescription for compression sleeves, compression bra, and a sense that this might be doable.
It’s been almost three years since then, and in that time I have learned to wear my compression sleeve with confidence. It’s actually been a great conversation starter about lymphedema and breast cancer, and my husband says it looks bad-ass. I have learned what aggravates my lymphedema and what helps it. I have learned how to do basic massage to help move the lymph fluid to aid in the drainage. I started yoga and joined a gym (although currently shut down, I exercise at home), and have also worked with a lymphedema physiotherapist to assist with the fibrotic tissue and fluid my breast – and it has all been completely manageable. I’m as close to the old me as I could ever be. I can be active. I can lift weights. I can work in the garden and I even got to scuba dive with no issues. Now, if I’m a bit relaxed and don’t wear my sleeve, I can begin to see an increase in edema in my arm, which I take as my body’s gentle nudge that I need to wear my sleeve more, so I do and it gets better.
In the end, lymphedema proved not to be the beast I feared it was. Is it inconvenient? Sure. But it’s manageable and I can still do many things I want to do in my post-cancer normal. What I thought was insurmountable, just required me to adapt and form new habits that have become second nature. I am grateful for the relative ease of my transition and attribute this in part to the great support I received from my cancer centre, and to our inner resilience to trundle onward in the face of uncertainly. – Stephanie Rentel