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Hormone Therapy - this counts as hard!

Shared with gratitude to the original author, Kylie Dahl. Expressing what so many of us feel but aren’t always able to put into words.

“No one warned me that this part could hurt like hell.
I’m on Herceptin and a hormone blocker, and the joint pain is relentless. Hands, hips, knees, shoulders, back, feet stiff, aching, screaming first thing in the morning like my body’s been hijacked overnight.
And here’s the part that messes with your head
People think treatment gets easier once chemo ends.
It doesn’t. It just changes.
There’s no drip, no chair, no obvious “proof” you’re still in it just a body that feels older, slower, heavier, and angry for no clear reason.
This pain isn’t weakness.
It isn’t complaining.
It isn’t me being dramatic.
It’s what happens when you rip hormones away from a body that’s relied on them for decades and expect it to just cope.
Some days I move because I have to.
Some days I rest because I need to.
And some days I’m just bloody over it.
I’m told it can get better with time and I’m holding onto that.
But until then, I’m done pretending this part is “fine”.
If you’re on hormone therapy and silently struggling, hear this
You’re not imagining it.
You’re not failing.
And you don’t have to suffer quietly.
This counts as hard.
And I’m saying it out loud.”

💛

Comments

  • missymoo
    missymoo Posts: 20

    So true. The dirty little secret no one talks about :(

  • marshy1
    marshy1 Posts: 20

    So true Hope2025. I had to stop Tamoxifen, joints, my head, eye pain was beyond awful.

  • missymoo
    missymoo Posts: 20

    @marchy1

    Sorry about your difficulties. It's interesting to me that you had eye pain as well. My eyes went super dry and it felt like someone was pressing their thumbs into my eyeballs. I also experienced extreme photosensitivity to the point that I had to wear sunglasses indoors if any lights were on. All this after only 5 days on the drug.

  • hope2025
    hope2025 Posts: 5

    @marchy1, Powerful drugs do powerful things— I have dry eyes & sometimes blurred vision, too.

    I'm all about sunglasses!!!

    💛

  • orleans
    orleans Posts: 4

    Yes! Thank you!!!! Most people don't get it, but breast cancer is just never really over! Has anyone experienced cranial/facial nerve sensitivity/pain on AIs? I'm five years post-diagnosis. Tamoxifen for 3 years, then hysterectomy due to hyperplasia from Tamoxifen. Switched to Letrozole. Terrible fatigue, muscle and joint pain, etc. Now, in the last five months have also developed ocular migraine (I think), occipital nerve pain, facial and cranial nerve sensitivity/pain. I think it's due to the Letrozole and/or lymphedema in my face/head (which I think can happen as well as in arm after axillary node dissection). Scheduled for head MRI next week. Anyone experience anything like this? I just joined in here but sending strong thoughts to all of you, who I know will understand the range of the impacts of BC. Thank you!