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So the elephant in the room and where I have disappeared for the past year: Paraneoplastic Syndrome. If you’ve never heard of it, nor had I. Nor have many Doctors, including ER doctors who look at me like a fascinating alien and potentially their next resident study. It’s complicated, incredibly rare, and so far pretty tumultuous.
In the most simplest terms, Paraneoplastic syndrome is when the immune system has a reaction to cancerous tumors in your body. Instead of attacking the cancer cells, it attacks healthy cells in the nervous system.
I started immunotherapy treatment last October 2023 at Memorial Sloan Kettering, and now continue my treatment at home with a private nurse. Both definitely have their pros and cons, but the most difficult part has been to find a Doctor who is well educated in Paraneoplastic Syndrome. I have been to Neurologists, Gastroentrologists, Neuro-oncologists, Endroconologists, Gynocologists, Dermatologists- You name it, I’ve been there. I’ve turned up to appointments with clinical studies, spent hours on Facebook support groups, researched every symptom and even gone the more holistic route of drinking Celery juice every morning (that one was short lived).
I’ve spent more time in dated blue hospital gowns than trendy outfits. PET-Scans, MRIS, CT Scans, Ultrasounds, Mammograms-you name it, I’ve probably been through it. All in all it’s pretty exhausting, but I’ve been resilient my entire life. From being in the ICU all throughout my adolescence to becoming a single mum at 22. I feel like a cat with 9 lives. And not a boring one I will say that. I’ve teetered on the side of caution, between wanting to share my journey publicly, but not making PNS (not to be confused with PMS) my identity.
With all of that said I’ve blogged for 14+ years and would be doomed if I stopped now due to a little medical hiccup. I’m determined to spread awareness around Paraneoplastic Syndrome and have big plans for the future.
If you feel so inclined, you can follow my personal journey over on instagram @pns.awareness where I share medical updates, treatment plans, scans, and of course random bits and bobs that have nothing to do with anything. It’s been a crazy roller coaster but I’m so thankful for my family who have showed endless love, care and support.
