Meet others living with Head & Neck Cancer: Introduce yourself

Hi everyone,
I am a 50 yo female (Arizona) who has lived with oral cancer for 21 years. I never smoked nor used chewing tobacco and it is not HPV related. I have had 22 surgeries and in addition have done topical chemo, chemo shots and immunotherapy. I have had a partial glossectomy, lost 6 teeth and am finally accepting (20 years later!!) that I am chronically ill. I am a Mayo patient and have been for the past 10 years. My care team is wonderful. I am incredibly fortunate to have a caring family and a great support system of friends. I am generally a positive person and try not to pity myself. I always say that everyone has their own thing that they have to deal with and this is just mine and that it could always be worse. I am on here because I have really been struggling lately with the loneliness that accompanies chronic illness and nobody understanding what you are truly going through. It will be nice to find others who potentially feel the same way.

You can send me a message anytime you need to talk or vent.
Cancer for sure can alienate us but we have to remain social for sure!

MOJO

Hi everyone,
I am a 50 yo female (Arizona) who has lived with oral cancer for 21 years. I never smoked nor used chewing tobacco and it is not HPV related. I have had 22 surgeries and in addition have done topical chemo, chemo shots and immunotherapy. I have had a partial glossectomy, lost 6 teeth and am finally accepting (20 years later!!) that I am chronically ill. I am a Mayo patient and have been for the past 10 years. My care team is wonderful. I am incredibly fortunate to have a caring family and a great support system of friends. I am generally a positive person and try not to pity myself. I always say that everyone has their own thing that they have to deal with and this is just mine and that it could always be worse. I am on here because I have really been struggling lately with the loneliness that accompanies chronic illness and nobody understanding what you are truly going through. It will be nice to find others who potentially feel the same way.

Hello @jgraz17.
That is what Connect is all about, supporting others and offering a safe place to share your thoughts with others who have similar experiences. Your age of onset is rather shocking, and it makes me wonder if you have any family history of SCC? Since my dad passed away from oral SCC, and my mom had skin SCC removed twice from her leg, I have assumed that my head and Neck SCC starting in my ear had a genetic component. My dad was a recovered alcoholic and smoked for 50 years so we know his predisposition, and my mom was a sun worshipper living in Fla so another good reason.
It is true that others have no idea about the suffering you go through with each surgery, procedure, treatment, and scan. Not to mention the day to day things you live with like dry mouth, swallowing, eating and speech issues, and changes in appearance with nerve damage, etc, etc. You are fortunate to have had a good support system all these years as that is all important. I have metastatic SCC for 13 years now, but it all started at the age of 58. Because of my family history I avoided alcohol and smoking and even sun exposure after my teenage years but my career as a veterinarian did expose me to x-rays. Whatever the causes, which we will likely never know, it is what we live with, as you said. I can tell myself that this is better than being dead, and perhaps there is a purpose for cancer patients to pave the way for new treatments so fewer people will have to suffer through this.
Once you pass through the Why me and I just want to go back to the way I was stages, forward is the only direction to face. At the suggestion of my surgeons early on, I made short term goals and have now passed so many of these! Looking ahead and making goals has given me a more positive attitude and helped me to appreciate each day in my life, each moment appreciating nature, each family member or friend that I can help......so many things. I wish so much that I was not on this cancer journey, but it has brought a different outlook to my life and the way I live each day. Please share your thoughts and feelings here on Connect. It might help your loneliness to meet others who know your struggle.

Hello all, I’m just joining this group almost 1 year after surgery for squamous cell cancer of the right cheek that metastasized to the facial nerve, parotid gland, anterior cervical lymph nodes. A skin graft was used to cover the defect from involved cheek skin
I received proton beam radiation and cisplatin chemotherapy for this last summer then last fall a metastatic tumor was found in my right upper lung and now I’m receiving cemiplimab iv treatment every 3 weeks which causes some side effects but otherwise is responding very well. I appreciate all the support that you provide to each other and decided to join in.
Gene