How to move on post head and neck cancer

amyruhlz

Hi Everyone,

Hoping for some advice for my husband. He had mouth and tonsil cancer the end of 2021, he was 43 at the time. He had surgery to remove 1/3 of his tongue, the tissue on floor of his mouth, all his teeth and 4 lymph nodes. This surgery included skin graphs from his arm and thigh to replace the tissue in the floor of his mouth and a trach tube which has now been removed. He finished his treatments in mid 2022, 5 radiation treatments a week for 5 weeks and 5 rounds of chemo and thankfully he is now cancer free. However he is left with anxiety, social anxiety and depression. He always says the cancer took so much from him. He can no longer eat majority of the foods he used to eat, he feels self conscious about the scars on his neck from the surgery, he cannot taste foods the way he used to and has a hard time talking clearly sometimes and people think he is drunk when he makes a phone call. He lost a lot of his muscle during his treatments and has not been able to put weight back on. He also doesn't have the strength that he used to have and doesn't think he can continue his profession as a carpenter that he's done his whole life so he has lost that too. How do people get past the depression and social anxiety and re insert themselves back into society? He doesn't like having to tell people what he went through to explain his scars and lisp. Did anyone find anything that helped post cancer?

wbcgaruss

Hello, amyruhlz , and welcome to the CSN H&N discussion forum.

Your husband has certainly gone through a very major treatment regimen.

I have said many times that till you get through Head & Neck Cancer treatment it shakes you to your very core.

You will never be the same again mentally as well as physically.

Some are affected much more than others.

Some have less treatment some more.

But we all end up at the same place.

Treatment and recovery is over, it’s time to move on and live.

Get back to life as it was before cancer in as close a way as possible, work at it, and don’t take no for an answer.

So your husband has anxiety, social anxiety, depression, he can’t eat the same foods he used to eat, he has scars on his neck, foods don’t taste the way they used to, he has a hard time talking clearly, lost muscle and weight during treatments, he doesn’t have the strength he used to, he doesn’t think he can still do carpentry work (I don’t know why)

I am typing this and I am saying check, check, check, yep, yep, yep, that’s me and a whole bunch of other people on this board.

I would say pretty much fits in the normal H&N treatment and recovery and leftover issues that are considered normal, par for this course.

In other words, there is nothing unusual with his circumstances he compares to quite a few of us.

So how do we get going again?

Well, I’ll tell you #1 the roadblock you had sitting in front of you before that had you frozen in your path called cancer has been removed.

Bee Thankful for the doctors and medical provisions we have today and the Blessings God has given you.

Remember on that diagnosis of cancer there was a big wall in front of you blocking living, well it’s gone.

The #1 thing you needed to do before anything else was beat this cancer and you did.

So now what?

Well, get back to living of course.

Sure you have issues and scars and challenges but it’s time to get going.

You need to set your head right and treat each problem and obstacle as an opportunity not an insurmountable problem and to move forward and get better at everything not a problem or issue.

You need to get up each day and make up your mind to do just a small thing or things and build from there, I understand, this treatment devastates you, man it beats you up, but don't let this dip in the road keep you down. get up and do one little thing. You are starting from the bottom so there is only one way to go and that is up and better every day.

One fellow in the video I am going to post said about recovery, "You just want to crawl in bed and stay there and not get back up, but you have to take those baby steps to get out and make it better, make the day count even in one way. Even just the littlest things like folding your laundry, like that can be the win for the day".

I went through treatment, I can relate to this guy, He Inspires me…

Mark’s Story

https://www.youtube.com/watch?v=XGdTatBCH7g

Of course, it will not be the same but make it as good as your body has the ability to make it.

You say...”However, he is left with anxiety, social anxiety, and depression. He always says the cancer took so much from him. “

Cancer can only take what you let it have.

You have beaten the beast.

And here is a lady who has beaten the beast and bounced back to defy all odds. Though they do not have the same cancer it is still a cancer battle we can relate to and be inspired by…

‘Just never give up’: message from a cancer survivor

https://www.youtube.com/watch?v=MmbDV32lSyw

“He can no longer eat the majority of the foods he used to eat “

Just be glad you can at least eat and count it a blessing even if you can’t eat what you used to you just have to vary your diet now, there are several that I know of on this board that are on permanent feeding tubes for the rest of their life. They would be so thankful if they could have what you have.

“He feels self conscious about the scars on his neck from the surgery”

Hey me too pal but that’s not going to stop me from getting out and living and going to the store or gatherings of people, auctions, spring happenings right now or anywhere else in public and it shouldn’t stop you either, after all we’re not the only ones in this world with a few scars.

“He cannot taste foods the way he used to “

Hey, me too pal, and about 98% of the H&N folks on this board, that is one of the most common leftovers from treatment. Here again your taste is a bit off but be glad you can eat and taste something.

Besides that your are still early out of treatment and may still get more of your taste back as well as improvements in other areas. People have reported improvements in taste and other areas as far as up to 2 years post-treatment. You are not at 1 year post-treatment yet so there is time. Stay positive, always look for improvement and work at it, and never think negatively. You have a choice either look at the + plus or the- minus.

“He has a hard time talking clearly sometimes “

I am in the same boat and have vocal cord issues, many on here likewise, but so be it, I can still talk it’s just different, sometimes I have to repeat myself and work a little harder at enunciating my words more clearly. I do whatever I have to do to communicate, speaking, emails, texts, it all works. If they think I am drunk, fine as long as we get business done. Here again, be thankful there are some on this board that can't talk or talk above a whisper

“He lost a lot of his muscle during his treatments and has not been able to put weight back on. “

Here again, this is a rather common situation with H&N cancer treatment where you lose muscle and weight but eating all you can of high-calorie high-fat foods will slowly put the weight back on along with drinking something like Boost VHC (Very High Calorie) one or two a day along with all you can eat. You see you had a battle on your hands to beat this cancer and now you have a recovery battle to make a comeback and restore yourself. Nobody said it would be easy, they told me it would be really tough many times and they were right but I didn't know how tough until I went through it and found it was the toughest thing I ever did in my life and I bet you feel the same way too. I spent 36 days in the hospital last time and lost weight and you can imagine the muscle loss also. The only way you are going to get your muscle back is get back at it, work in the yard, around the house, in the house, do the things you have been putting off it is good recovery therapy, exercise, lift weights, go to the gym if there is one near you even temporarily to build back up and get back to work as a carpenter, you still have the skills and are a very young man yet with a lot of working years ahead of you. Start by talking to your employer and see if they will work with you and do half days to start. If not maybe a different employer with a lighter work would be more fitting for you now. This whole cancer thing is full of changes so you have to be flexible and roll with the changes and be adaptable, life is good.

“He doesn't like having to tell people what he went through to explain his scars and lisp“

He is not required to explain anything to anyone, but sometimes people will ask because they are just curious and that’s how we learn. If asked tell them all about it and how you defeated cancer, and what a great care team you had that you would recommend to anybody and tell them how you fought and pushed through cancer treatment recovery to get where you are today and inspire them and tell them how God has blessed you with renewal and a new lease on life and how you will never look at life the same way again nor take it or your loved ones for granted ever again.

And lastly, any issues he has can be worked on by a speech therapist or other professionals to improve wherever he can.

And here is a story that relates closer to yours, and you can find inspiration in these people and if they can do it they are telling you you can too…

Jeannie Hopper

Half of my tongue is gone, but I couldn’t be happier

https://www.mdanderson.org/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

My advice to other patients: Focus on today

https://www.mdanderson.org/cancerwise/oral-cancer-survivor-s-advice-to-other-patients---focus-on-today.h00-159303045.html

Kate Brown

Life After Tongue Cancer and Total Glossectomy

https://www.ucsfhealth.org/patient-stories/kate-brown

I hope this helps.

Our Motto Here Is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.