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I don't know who will read this, but I wanted to tell all who go thru a procedure of either removing part or all of their jaw due to cancer, it gets better with time. My biggest concern when they told me they had to remove my lower jaw was.. "can I still eat pizza?" My care team assured me I would go on to live a full, normal life.

It is a process of coming to grips with a new life. I am here 13 years after my surgery, and I can say I am so grateful to be alive and vital. Sure, my facial structure is not what it used to be, but I am able to smile, and people are drawn to my smile. Of course, it helps that I have perfect teeth on my upper jaw. I had implants put in after a few years when the radiation finally took the last of my good teeth.

My message is.. this surgery is horrifying, it's something that causes us to stop and say, "what did I do wrong". But the fact is, it happened. And we have to make the best of what we have. I love my life and treat each day as an adventure.

For those of you just starting on this path of surgery, or have already had it, I am available to talk. Just leave a private message..or you can ask questions here on the forum for others to learn from.

Cris

Hello KevinJMS,

Welcome to OCF and thank you for sharing your story. I am so sorry to hear of the cancer and your challenges after surgery. In early 2020 at age 52, I had half my tongue removed and a flap from my wrist to replace the removed half, and all my nodes removed on the same side of my neck. I will tell you speech, eating, drinking, took a long time even with half of my original tongue. I had to learn to be very patient with myself. But, over many months, my speech kept improving, today most people will hear a lisp but I am understandable to strangers. And, I find most people very patient when I am not.

Does he have any original tongue muscle left? If he can make noises with it now that is a good sign. Do you have a speech pathologist assigned?

I kept video logs of me reading passages or messages to loved ones. It was good to occasionally go back and listen to them as I would realize I made more progress than I thought. I also kept a written journal. It helped me sort out my fears, anxieties, keep track of questions for my doctors, etc.

I will send you a private message (access under your name in the upper right). Might be good to connect live as it is easier to offer support with a live exhange.

Stay safe and keep the faith,
Nels

Hello KevinJMS,

That was a horrible ordeal, I am so sorry you guys are dealing with that.

Does that mean he has lost the grafted flap too then too? (It kind of seems like that, that the graft was attached to the remaining tongue and the vascular blow out supplying blood to the graft, and then the necrosis of the remaining natural tongue, seems like that's what the graft would have been attached)?

Yeah that's a question for the expert surgeons. It might be a situation where once things are stabilized and the cancer concerns are controlled reconstruction surgery later? Not sure if that's something dealt with semi-regularly at Comprehensive Cancer Centers or if that may be best done at like the top CCC's with a second opinion or consult with someone who says they have high confidence in being able to get a flap back allowing swallowing and speaking in the future.

Sorry I have no experience with anything like that, just wanted to give a response so that you know you've been heard.

That's a rough go of things. Hopefully the both of you have a good support network of folks assisting with things.

Glad he is ambulating well at home at least and trying to get used to the new tubes and tube feeding and all that.

Did the hospital or cancer center have any support groups or social workers or that kind of thing?

I'd be asking all those questions to your surgeon(s) and seeing if there are any uber-experts they might refer him to if it is something they don't normally do.

Hopefully you kind find a bit of peace and solace in each day amidst the chaos and shock, try to carve out what enjoyment you both can.

Praying he finds some healing and good news with treatment progress and future options for a reconstruction.