Your Body Is Giving You Information. Listen to It
One of the things I have learned through my own experience with cancer and lymphoedema is that nobody knows your body quite like you do.
That doesn't mean we know more than our doctors, nurses or lymphoedema therapists. We need their knowledge and expertise.
But they don't live in our bodies.
They don't necessarily feel the heaviness that wasn't there yesterday. The subtle tightness. The pulling. The tenderness. The strange sensation that is difficult to describe. Or simply that feeling that something isn't quite right.
And sometimes, particularly after cancer treatment, those things can be overshadowed by a much bigger question:
Is the cancer gone?
Of course that matters enormously. Cancer specialists have an incredibly important job to do, and their focus is understandably on treating the cancer and helping us survive it.
But survivorship doesn't end when cancer treatment ends. There can be an aftermath.
For some of us, that aftermath includes lymphatic disruption and lymphoedema.
And this is where I believe we need to take some responsibility for our own bodies — not responsibility for what has happened to us, but responsibility for becoming an active participant in what happens next.
Don't dismiss what you feel simply because nobody else can see it
Lymphoedema care understandably relies on things that can be assessed and measured: circumference, volume, bioimpedance, tissue changes and visible swelling. Those measurements are important.
But the person living with lymphatic disruption may experience changes before those changes are obvious to somebody else — or before they are significant enough to show up in a particular measurement.
Sometimes what the patient is feeling can be just as important as what somebody else is seeing.
The journey of one woman who has shared her experience with us is a powerful example of this.
She knew something wasn't right. She continued looking for answers and ways to manage what she was experiencing rather than accepting that this was simply something she had to live with.
That takes confidence, particularly when the person standing in front of you has far more medical knowledge than you do. But advocating for yourself doesn't mean rejecting medical advice. It can simply mean being prepared to say:
"I know this is what the measurement says, but this is what I am experiencing."
And expecting both pieces of information to matter.
Take responsibility for knowing your own body
I believe there is a difference between being treated and being an active participant in your own health.
Ask questions.
Learn about your lymphatic system and how your treatment may have affected it.
Notice changes in your body.
Understand what helps you and what doesn't.
If something doesn't feel right, speak up.
If the first answer doesn't address what you are experiencing, keep asking questions.
And where appropriate, explore your options with the health professionals supporting you.
None of this means that patients should diagnose themselves or manage lymphoedema without professional guidance.
It means recognising that you are an important part of your own healthcare team.
Your lived experience is information too.
Because survivorship should be about more than surviving
For a long time, success after cancer was understandably measured primarily by survival.
But as more of us live longer after cancer treatment, the conversation needs to extend beyond simply being alive.
How are we living?
Are we comfortable?
Can we move freely?
Are we managing ongoing effects of treatment?
Are those effects limiting the lives we are prepared to live?
And do we feel that someone is listening when we say something isn't right?
Perhaps one of the most important things we can do after cancer is learn to trust that voice inside us again.
To pay attention.
To ask questions.
To advocate for ourselves.
And to take responsibility for understanding and caring for the body that has already carried us through so much.
Because nobody will ever experience your body quite the way you do.
