When You Think Of Head & Neck Cancer Recovery, Think Of The Sloth

wbcgaruss

H&N Cancer Recovery is the Sloth of recovery.

It's not the Jaguar of recovery it's the Sloth

Sloths have an extremely low metabolic rate, which means they move at a languid, sluggish pace through the trees. On average, sloths travel 41 yards per day—less than half the length of a football field!

And that is exactly what Head & neck Cancer recovery feels like, a languid, sluggish pace that feels like you're getting nowhere fast.

And you are right in a sense that it feels that way, but make no mistake you are recovering and it is a sure and steady recovery.

Take Care, God Bless

NEGU (Never Ever Give Up)

Russ

Chillg8r

MY SPIRIT ANIMAL, I LOVE IT!!! 😂

Nj1962

This is exactly how I feel!I had a partial glossectomy July 31st, 2024 and recovering at home right now. It’s only been 4 1/2 weeks and some people I know think I should be feeling much better. Yes, I feel somewhat better but it’s still painful and fatigue and agonizing. I read about head and neck surgery recoveries, and it takes months and up to a year or so to really feel yourself again. I’ve had several surgeries in my life, but this one is at the top of the list of the most challenging and difficult to recover from. thanks for listening, Nancy

wbcgaruss

Hello, Nj1962, and welcome to the CSN H&N discussion forum.

Hello Nancy, you are in the right place, the folks on here know how long it takes to recover and how Brutal head and neck cancer and treatment is.

At 4 1/2 weeks you are certainly not recovered.

The people you know just don't understand, all you can do is explain it to them and be patient with them.

I am glad you have a grasp on the fact that recovery from H&N cancer treatment is a slow process but a sure process. A good many people that go through this are expecting a much quicker recovery. I think they relate it to a bad cold or the flu, something they have already experienced. I am glad my care team was quite emphatic about telling me to prepare mentally and physically for my treatment and emphasized how tough it would be. My radiation nurse told me straight out that I may as well figure on a year of my life to go through treatment and recovery and she was spot on.

You still have pain and fatigue and agonizing but bear with it, it will be gone one day. Make sure you take pain medications if you need them and stay ahead of the pain it makes it much more bearable.

I see you have noted that compared to other surgeries you have had this H&N surgery tops them all. I think you will find this is the popular consensus H&N treatment is the worst. But thank God we have the treatment abilities we have nowadays.

I have seen it said on this forum many times that people will comment to the H&N cancer patient hey your treatments are over, the cancer is gone everything is back to normal now right, why do you say you don't feel well yet, and don't have the strength and stamina, it's been a while, you should be recovered by now.

What they don't realize is things will never be back to normal for the H&N patient, there is now a new normal to adapt to and get used to, and though recovery many times brings a lot of the old self back I always say nobody comes back 100% there is always a compromise on lack of saliva, taste many be off a bit, and other things.

I am going to post a couple of videos that may help you and the first one has some parts in it you can relate to like your treatments over you should be ok. This video highlights the post-treatment and recovery, not that long but meaningful and from the heart. You can see and feel the emotions in these people in the video and to me it is inspiring.

Lost in Transition -- After Cancer Treatment Ends

https://www.youtube.com/watch?v=u90dYwZT7oE

And the other one that inspires me is a fellow who had cancer but it was not H&N but his story still inspiring to us to push on and carry on…

Mark’s Story - Hodgkin Lymphoma

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

Also a very short video bonus just for fun…

The New Normal After Head & Neck Or Other Cancer

https://www.youtube.com/watch?v=kf7khaZQnpM

And lastly, I have compiled over time some amazing stories and very inspiring right on the subject of glossectomy and I will post the links and info below.

Glossectomy, larengectomyAmazing Inspiring Stories

Also along the way in my travels, I have come across three amazing ladies who have had glossectomy and one has also had a laryngectomy top of it. I will post links to their stories below and I think you will find these ladies inspiring, amazing, and enjoying life, I hope it helps you or others who read this posting.

Kate Brown...

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

Jeannie Hopper...

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

Jeannie Hopper...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

And then there is Sonya...

HI! I'M SONYA...theGlossectomy Girl

Check out her web site, up at the top you can click onsubjects or view dropdowns of subjects such as a Blog, vocalization,nutrition, etc. An amazing active woman.

https://www.glossectomygirl.com/about

https://www.glossectomygirl.com/blog

I hope this helps

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.

Our motto here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

Crystal, LitlCJdoll, one of our alumni now passed, had a great knowledge of medical terms and info and helped many on here and she always said the below statement…

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.

kinji

I'm not attempting to be disrespectful here, but I find that not all people go through the same experience with cancer treatment. Not everyone has a brutal time and gets radiation only to the neck and gets through it pretty well. Some if this may depend on their health prior as well as age. I don't agree with placing up posts that place a such a negative view on everyone that will go through treatment. It scares people before they even go through treatment.

Not everyone has the same stage, the same cancer, the same health, age, etc. Why cause unnecessary fear?

kinji

I would also like to add that the super thread needs to be updated due to the fact it has a ton of broken links.

wbcgaruss

Thanks very much, kinji for your input.

It is agreed not all cancer treatments and cases are the same. When I personally answer a posting I may say certain things about cancer that do not apply to all cases but many times add that "all cases are different". I understand along with others on here that cancer treatments are not a one size fits all kind of process. In answering and discussing of cancer and situations on here it is not possible, usually to answer from every angle and situation it would be too cumbersome. That is why we ask questions like location, staging, test results, etc. to give the most accurate answer we can as just average folks using our cancer experience to help others.

You are correct not everyone has a Brutal Time with cancer treatment but years of experience have shown many of us here on the H&N forum that many times it is the norm when treating this kind of cancer in this area because it affects so many life functions like the taste, swallowing, saliva, dental health, breathing, hearing, sight, etc. I have seen H&N treatment commented on as the worst and most difficult of any cancer treatment because of this. Of course, this is only an opinion. I agree it depends on many things that have a bearing on it like age, health, health history, and prior cancer if applicable as to the person's treatment and outcome. But stressing how Brutal this treatment can be and giving folks the worst-case scenario to prepare for I think is the best approach because it generally is considered as such by most who have endured it. This way they are prepared for the worst and if they get a much easier journey and outcome so be it.

There is no interest in and we are not instilling fear in anyone, just preparing them for all the possible bumps in the road ahead. Also, I believe the diagnosis of cancer itself carries its own proclamation of fear along with it because many people are not aware of the advances in cancer treatment and still as it was in the old days, not really that many years ago was considered a death sentence when you got it and I think that belief is mostly alive today.

I recently had an individual tell someone on here in a private message that they were thankful that we told them how difficult treatment can be and the difficult recovery period and the extended length of it because they were not hearing that from their doctors, it was as they said "candy-coated" and were starting to go through it and were starting to experience rough and extended effects from their treatment and did not realize the whole scope of the situation till they read about it on here and were glad they now knew the possible effects they might encounter and what to look for.

And, yes kinji, the Superthread could use some attention, any volunteers?

Wishing You The Very Best

(NEGU) Never Ever Give Up

Take Care, God Bless,

Russ

kinji

Please don't state "God Bless" to me. I find it disrespectful. [Content removed by CSN Support Team.]

As far as the super thread, why aren't you helping? I see more posts by you than anyone.

wbcgaruss

kinji, Thank you for your response it is greatly appreciated.

Take Care, God Bless,

Russ

Nj1962

https://csn.cancer.org/discussion/comment/1717882#Comment_1717882

Thanks so much for the reply and supportive information. It really helps when someone can relate to what you're going through as they have had similar experiences. I will certainly view the videos you've posted. Nancy

wbcgaruss

You are certainly welcome, Nancy.

I hope you will continue on to a completely healthy recovery, cancer-free.

Wishing You The Very Best

Take Care, God Bless,

Russ

Mavish

https://csn.cancer.org/discussion/comment/1717905#Comment_1717905

https://csn.cancer.org/discussion/comment/1717905#Comment_1717905

I actually want to hear real stories and not the sugar coated. Here we are the people who understand eachother. But also I understand you. For example, my husbund found this group for me, just after diagnosis. At that time, there were times tha I feel oberwhelmed with the information. I asked my husbund to find out information for me so I dont get to learn more than I am ready to process. When I am ready I access the group myself.

I am so apretiate the Russ's presence in the group. He is one of us who keeps the group actlve and lively.

My suggestion to you just dont access when you are not feeling that you can handle. Just hearing the C word alot to digest.

Wish you a luck in your cancer journey

I

SuzJ

Don't think of it as cancer. Name it. (An ex's name works) It's ok to be mean to it. :)

kinji

https://csn.cancer.org/discussion/comment/1717925#Comment_1717925

I didn't want sugar coated stories either. However, each person is different. There are people that have just received radiation to their Larynx with no chemo and worked through most of the treatment, didn't need a feeding tube or PEG, and weren't in severe horrific pain. I was one of those people. My throat was sore when swallowing but I was able to swallow throughout the whole treatment. All the radiation was below my jaw.

I hear people saying it's so awful getting fitted for the mask as well, and it literally feels like a facial. It is surprising how many people are claustrophobic. I guess if people expect the worst then they will be pleasantly surprised when it's not as bad as some others have had to experience. Like I said before, It has a lot to do with if you've had surgery, where the cancer is and if you are always getting chemo.

I have also had surgery and that was tough. It was a lot worse than going through radiation.

kinji

That's a nice idea. Especially if the person that gave you HPV knew he had it due to 2 other woman getting it from him, and he proceeds to give it to me and lie. Yes, I blame him and will if it takes my life.