I struggle with this thought constantly. Yes, I am alive, but it came at a major cost. Surviving is more than fundraisers, pink tutus and tiaras. I see so many pamphlets filled with beaming faces and shiny bald heads. No wonder a lot of people think breast cancer is no “big deal” and “totally treatable.” The whole October Breast Cancer Awareness Month, also dubbed at times as PINKtober, really makes me furious!!!!
Only approximately 10% of women get the type of breast cancer I had – invasive lobular. How many women know what the most common type of breast cancer is? How many women know about metastatic cancer?
My quality of life is about 30%. Is that truly surviving? Is that even thriving? My horrible fatigue and often debilitating pain is constant. I get spurts of energy here and there. My whole routine in life will never be the same. I’ve had to learn to walk without feeling my feet thanks to chemo induced peripheral neuropathy (CIPN). I still have trouble buttoning my clothes, putting on earrings, bracelets and necklaces. There’s no cure for this side effect or even a clear understanding as to why some women are susceptible to this or why the pain and numbness goes away for some and not for others.
I’m so ANGRY because none of my doctors or even my social worker at the cancer center prepared me for survivorship. None of them informed me that my quality of life might not be 100%. They do NOT get it!!! I’m in medically induced menopause, so zero sex drive. Will I ever get enough energy to date again?
That is why I call myself a warrior because the battle is ongoing. There is no rest for me.
So, while I embrace this Thanksgiving, I’m not exactly in a “thankful” mood. Life was already tough pre-cancer. Now, it often feels unbearable.
Until next time,
8 thoughts on “Thankful for surviving???”
Great post and true. There’s no one to put humpty dumpty back together again after the cancer treatment process. And why isn’t there a field of medicine that deals with the broken cancer survivors? We survive yet we are fatigued, aching, hairless, depressed from hormone blockers, living between the stress of four month petscans, and this is it…..at least your alive they say. There should be better than this with the billions that have been raised.
I absolutely agree, Judy! They are so concerned with getting the cancer out, that no one is preparing us for any damage being done to our bodies. All that money being raised and still no b ettet post treatment options either. I was afraid to speak out about all this.
One thing I worry about is that no one ever mentions chemobrain. Writing down important information before chemotherapy would have been so helpful. Making a ‘cheat sheet’ about everything from passwords to preplanning other’s birthdays, important anniversaries of family, etc. Why does no one warn us that we are about to lose our short term memory ? and (at least for me) so many nouns…
I am totally with you. My hair has grown bzck, but I will never be the same. People don’t get it. I have never had so much daily pain.
True, Life will never be the same. I’ve found I get much more out of life than most of the people who haven’t been through a chronic disease. Living one day at a time makes it much more intense for me. I wish I had the opportunity to take life for granted but instead each day I fear will be my last. Hodgkins Lymphoma, Breast Cancer and Congestive Heart Failure (from chemo) Survivor/victim.
Boy, can I relate to everything you have said. Sometimes I chastise myself for wallowing in self-pity but dang it, THIS IS HARD! I finally stopped working in March and have applied for disability. I totally felt unprepared for the “new normal”.
Thank you for your blog which I only discovered today.
I too had invasive lobular (IIIC) and can relate to everything you said.
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Thank you for taking the time read it! You’re not alone!!! Reach out anytime.