Forum Discussion

melclarity's avatar
23 hours ago

Survivorship: The Part We Don’t Talk About — But Should

I’m 11 years post my second breast cancer diagnosis, and I’m grateful every single day to still be here. I work five days a week, I show up, I contribute, and I keep moving forward. I’m proud of that. But I’ve also learned that survivorship is far more complex than anyone prepared me for.

After Taxol, 5‑FU, and a DIEP flap, I now live with: permanent hair thinning, weight gain, early menopause, neuropathy, hand‑function issues, all‑over body cramping, heart failure, cataract, blocked tear ducts, damaged veins, and numbness from nerve damage.

I’ve adapted. I’ve rebuilt not just physically but mentally/emotionally. I’ve learned to live in a body that’s different from the one I had before. But here’s the truth: we don’t talk about this part. Not with friends. Not with colleagues. Often not even with each other.

We carry the long‑term effects quietly. We push through because that’s what survivors do. We’re grateful — deeply — but gratitude doesn’t erase the challenges.

I’m sharing this to encourage honest conversations. Because survivorship is real work. Because so many of us are navigating long‑term effects in silence. Because speaking up helps others feel less alone.

If any of this resonates with you, your experience is valid. We can be strong, grateful, and resilient — and still tell the truth about what survivorship really looks like.

2 Replies

  • I confess I have never been too keen on the term survivorship, in relation to cancer. Lots of people do survive, and in the main, because they have had treatment. One could easily apply the word just to life itself - we survive loss, heartache, disappointments and so forth. And sometimes those are experiences that scar and sometimes they are experiences that mould. 

    I finished treatment (mastectomy, chemo, herceptin and 10 years of hormonal therapy) with lymphoedema, peripheral neuropathy and an arrhythmia. Mostly these have caused little dificulty, until lately. Exacerbated by a leg injury, I have now got some mobility problems. I am also 14 years older!! And if my experience is anything to go by, one's body simply doesn't bounce back the way it did when I was younger - even when I was in my 60s! 

    Before breast cancer, I was accustomed - indeed never thought about it - to be healthy. I was accustomed to a body that did what I wanted. Comments on BCNA have reminded me how many people experience cancer as yet one more bodily malfunction to cope with. And whose remnants of that experience will be much worse than mine. So yes, treatment may come at a cost, but I'd be wary of putting anyone off treatment because of the potential longer term outcomes. At least some of mine are the result of living longer - and possibly one of the most rewarding and interesting periods of my life. 

  • melclarity​ 

    Lovely to read your post, so honest, a reminder that the remnants of treatment remind us what we went through!

    Me, leg pain lives on!  Goodness it drives me nuts!

    A thoughtful post to allow others to realise, it happens but we are still here!

    Take care