I was diagnosed with squamous cell carcinoma in Aug of 2016 (never smoked and not HPV related) and had a partial glossectomy and reconstruction surgery last September--I was curious if having a tracheostomy is standard with this surgery as I suffered the worst while in the hospital from not being able to communicate and the suctioning of the trach every 1.5 hour or so plus, it took several weeks to heal after leaving the hospital. My stage was determined after surgery to be stage 4 as there was some lymph node involvement, however, I refused radiation & chemo in spite of strong pressure from MDs--and am extremely glad I did refuse.
Post surgery, I'm being monitored quarterly via quarterly MRIs. and my last MRI results in March were clear, happily.

In spite of my minimal post surgery issues (mainly upper neck numbness & pulling from the dissection), I find I have had a hard time finding an OC support group in the Boston area. I have no family or support network and as a result, I've been experiencing a lot of loneliness and depression. I do go to SPOHNC meetings but they only meet every 2 months and it's a presentation by a speaker, not a support group per se. It's been rather frustrating but I do the best I can and just learned about Cancercare.org a NY based organization that offers free counseling and online and/or telephone support groups run by oncological social workers...

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Welcome to OCF! Its always great having survivors who have ben successfully treated to join our ranks.

The only in person group for oral cancer as you have already found out is SPOHNC. Many have found our online forum works very well for support. We are around 24/7 and the best part is anonymity. Your identity is protected, you only reveal what you want others to know. OC is a brutal and life altering disease for many patients and caregivers. After what we go thru, its not surprising that depression is very common.

I think you would greatly benefit from being part of our small nonprofit organization. There are several survivors I can think of off the top of my head around your area. We have a wonderful team of volunteers from both the dental community and members of our group that host a yearly oral cancer awareness screening and walk. Im enclosing a link to our events page so you can check it out and maybe join up with them. I have found over the years by giving back to help others is the very best way to help them avoid the pitfalls I fell into when I was sick. It also helps me to see past those terrible times and enjoy a fuller more productive life.

OCF Events 2017

Many thanks, Christine. I added my signature--and yes, I do know Kerri and have met Margaret as well when I first reached out to the online forum last September prior to my surgery but unfortunately, they both live quite a distance from me and they lead extremely busy lives whereas I'm retired so we don't see one another.
I do know about the free oral cancer screenings this month--thanks to Kerri--and have signed up for one in my area.

Great job on your signature! Thank you!

Small world!!! Ive know Kerri thru this forum for many years. We finally got to meet a few years ago at their OCF event where I was their speaker. Shes a great girl with a wonderful family. Her children are just adorable. I met Margaret even longer ago, maybe back in 2008? We were in NY auditioning for something for TV on OC. Both ladies I feel close to just like all the OC survivors Ive met over the years. Together, we are all bonded by a life changing horrible disease we have all endured and fortunately survived. To me, these people are all like my long lost extended family. Thru OCF, I have friends (family) all over the world. I can only hope you can build similar relationships. But, knowing so many OC patients/survivors and caregivers I feel confident you can bond just as easily as I have. Theres plenty of them in your area but finding them is not always the easiest thing to do. Theres also a great dental professional (Laureen) in the Boston area that may know of other survivors you could get together with. Kerri could put you in touch with her if you havent already met her.

Starwolf -

You didn.t mention if the partial glossectomy left you with a speech impediment. If it did, that may hold you back in starting or joining conversations. Interactions with other people are essential in maintaining a positive mental outlook. Isolation can also lead to depression.

I was an extrovert with many friends, coworkers and a fairly large extended family.......

After my second diagnosis and the subsequent surgeries and treatments, I was left with speech issues that were compounded with trismus. Out of a large pool of friends, two or three interact with me regularly today. I am lucky to have a wife and kids that are grateful that I'm alive and are not outwardly concerned with my speech issues and appearance.

Now I'm more comfortable at home with a good book.

I guess I trying to say is whatever your issues are now, you have to accept them as your new normal. Build on it.

I do understand how easy it is to become depressed and frustrated with life when communication is a problem. You have to fight the depression / frustration actively. Become focused on something other than the cancer or aftereffects from treatment. Try something different. Pick up a hobby. Start exorcising.

Good Luck