By Pamela Tom | HPVANDME Founder
This Halloween, it wasn’t uncommon to see radiation masks decorated in a defiant, and a little scary, declaration of recovery and resilience. Maybe you saw such a mask. What did you think? Do ordinary people know that this mask is one of a kind, and will never be worn again?
We hear the word, empathy, a lot these days. Being able to understand another’s feelings and walk in someone else’s shoes fosters less judgment, improves relationships, and empathy is healthy.
HPVANDME shares cancer survivor stories with the hope that hearing someone’s journey will give others encouragement, patience, and hope.
Recently I joined a Facebook group called, HPV+ Throat Cancer Survivors and Caregivers. Its members include a spectrum of participants: the newly diagnosed; those about to begin treatment; those struggling with the side effects of radiation and chemotherapy; people who have survived treatment and are struggling to find their new normal; and caregivers who may not endure the direct physical pain of cancer, but must provide essential support.
The group provides a place where people are seeking help and giving help. They are strangers yet uniquely bonded. It’s a brutally honest forum where patients and caregivers ask anything—about everything from excessive mucus and damaged salivary glands to questions about nutrition. It’s also where people learn that they are not alone. It’s an active group. I find myself reading each and every one of the posts, along with the comments.
The posts also serve to remind me that HPV-related oropharyngeal cancer cases continue to multiply. Many people don’t know that HPV+ throat cancer is now the #1 HPV cancer in the US, surpassing incidents of cervical cancer. HPVANDME provides education about HPV throat cancer and encourages immunization against HPV so HPV cancers will be reduced, and eventually eliminated in future generations.
So I thought I would share a few posts … real uncertainty from real people. And in the process of posting and pondering, sometimes real hope becomes certain.
Well folks, I’m not one to brag but I just ate 2 scrambled eggs!!!! Been trying to eat solid food for a year now. It took some time but I got it down!!!! If you are feeling hopeless like I did for several months, please know there is hope, this too will pass.
I have radiation burns on the back of my mouth. Gums are raw and I’m only 14 rounds in. No chemo thankfully. Feels like I’m swallowing razor blades but I’m swallowing anyway. Tylenol only helps a smidgen but I’ll take it. Hang in there. We got this. One treatment at a time.
I don’t know what to do or how to help. He’s so fragile and too sick to communicate well. I ask very minimally to not cause him more vomiting. I need to toughen up so I can advocate for him but I just don’t know if this is normal or should I be addressing this further?
I have a niece who is a radiation oncologist who told me before treatment‚ “We can cure you, but we‘ll put you through hell first.” Which was so true. 5 years out now I am doing great and enjoying life more than ever. It was a long haul, I turned out to be a really slow healer who got worse, much worse, for 9 months before I finally slowly started to heal. But I’m fine now, no side effects I can’t live with, and so happy to be here to see 3 grandchildren born and thriving.
For the first time since my surgery last October, I ATE POTATO CHIPS. I thought I would never be able to. For me, it’s a big victory!!
Potato chips. I bet they never tasted so good.