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

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.

Hi jgraz
I am 72 yo and had nasopharyngeal cancer treatment - IV stage, with radiation and cisplatin treatments. I went through all the feeding tube, weight loss, mucus in mouth, hearing loss, loss in taste. After a couple of years, I was almost back to norm - with only issues of dry mouth and have a carry a bottle of water with me at all times, and a hearing loss - with hearing on my left ear completely at '0'
But in mid-2020, I suddenly had problems with my speech and swallowing was more difficult - with food getting stuck in my throat and having to give it a hard cough to get the food out. Diagnosed with late effects of radiation - dysphagia, dysarthria and severe neck fibrosis. Was told by my medical team at Princess Margaret Cancer Centre that my situation would never improve and that i might have to get a feeding tube to survive (to this, I am definitely against a feeding tube - and would opt for MAid).
Because of my issues with speech, hearing loss and swallowing (especially in public where I am not comfortable in having to cough up food stuck in the middle of throat). And find it frustrating having to explain why I am slurring and having people tell me that they can't get what I am saying. With hearing - missing out of conversation (even with hearing aids) and not able to follow the flow of conversation.
With all these issues I am having and facing - I tend to isolate myself (I live on my own). This is because I feel that if I can be 'ok' on my own and not have to explain over and over again as to why I am not able to talk, eat and listen - I might be more at peace on my own.
Not sure if this is a good move on my part and am doing my best to take a day at a time - and take whatever comes next!!
Hear you - it's a sad and lonely journey!!