Radiation Fallout
Long time member of CSN, but have been absent several years. 10 years ago husband diagnosed with stage 4 nasopharyngeal tumor. Treatment was successful in eliminating the cancer but radiation effects over the last 10 years have piled up. Hearing loss, no longer able to swallow so PEG tube feeding, tracheostomy, balance issues, bilateral vocal cord paralysis, losing lip/tongue articulation ability, hypo static blood pressure issues, vision problems. It seems like the radiation damage is ongoing and unstoppable like a slow moving tide I can’t hold back. Looking for acknowledgement that it’s hard and support to find joy. Started seeing a therapist for help in this too. I cross posted this on the caregiver support board also but the Head and a neck board is where I spent lots of time in the prior years because y’all truly get how horrendous this type of cancer is.
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Looks like he got the Rads worse than me. I've been FT-dependent for the last 5-1/2 years, and in June of 2020 was told by 3 different ENT's (the last in Iowa City) that my windpipe opening at the larynx folds is around 20% of the normal size- almost 5 years ago. The issue is blood vessel damage that feeds tissue, resulting in the tissue dying and becoming scar tissue. I did develop glaucoma in '23, but that runs in the family and likely is not Rad-related. Hearing-loss is also a non-issue. And I can certainly relate to the balance issues. Worst of it for me is the constant battle with aspiration to avoid pneumonia- I cough/hack-up bronchial congestion and saliva so much that I carry an overnight denture container for my spittoon when I go into stores, Dr. Offices, etc. Iowa City ENT said Rad damage to my Sinus's and saliva gland is the cause, and have 7 little wastebaskets in my place by chairs and bed to make sure where I spit is not an issue.
I went thru 23 Ops. in my early Teens because of a car accident, so I doubt if this will help you, but the extent of my thinking about what I'm experiencing only extends to 3 sayings, 2 of which from my Teen years of 13, 14, and 15: "Come what may," "That's life. Get used to it," and "How would Butkus deal with this."(not a question, because I know the answer is one of the first 2 sayings)
Other than that, just one day of moments at a time and be thankful he's alive. A lot for you to take on, Barb, but with his quality of life as is…His love for you has to be foremost in his mind.
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Thanks for replying Logan. Most days I’m ok, but it seems only a few people really comprehend how devastating the long term effects of radiation can be. Yes, to fear about aspiration pneumonia and hacking/coughing all the time. I just need to know there are others making this tough journey who can empathize. Our guiding motto is “Every day is icing on the cake” and most days it’s enough. Irony of ironies, my husband was until his retirement a year ago a surgical oncologist and chief medical officer at a cancer hospital- though his specialty was liver/pancreatic cancer not head and neck.
Barb K
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Trust me, I can relate, Barb. That accident when I was a kid resulted in a crushed windpipe @ the larynx. 11/2/68. We were told only 3 hospitals in the US had Drs. who could deal with it, and Rush in Chicago was best. I got the tracheostomy put in the day of the accident in Op. #1 @ the Freeport IL hospital and had for 26 months, by the way.
If there's anything positive I can say about my physical condition, it's about that 20% air passage in 2020. Last year I visited my local ENT and asked him if it's possible the passage is not going to get any smaller/no more damage to my folds will happen? Told him I don't really notice a difference breathing and my blood oxygen level is great UNLESS I do significant exertion. He said it very well might be possible! SO, that equates to Rad damage only taking so much of a toll and then the damage stops. Think it's a different scenario with glands and such- probably only applies to tissue, but that is a Positive.
I'm 70 now, and like my Dad- who lived to be 99-1/2 years old, I find myself reminiscing a lot about past experiences in life all the way back to Grade School. And, of course, as a young man and the gals…You might want to reference special memories with your Hubby to help you deal with the now. Best of luck to you&him, Barb.
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13 year survivor, the after effects of treatment are the worst, and finding decent after care in a 15 minute Dr's appt. is impossible. I just came out of a week stay due to aspiration pneumonia, find myself in full mental ptsd, extreme anxiety, just woke up from a sound sleep , blood pressure through the roof. I was just saying to myself what a hard journey this has been. I have been back on the feeding tube for 3 years, this hospital visit I had all but given up. In desperation I came back to this site that has always been so good, and found others with similar post radiation effects, and now have a direction to go. I refuse to let this horrible disease have any more control in my life, and am now back in the fight.
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Hard12Find, love ya much, you have definitely had a hard row to hoe with this evil disease, and are still dealing with the after effects as evidenced by your recent hospital stay, yet you are still standing.
Dealing with your situation can be a heavy load but please try to hang in there.
I hope you find the strength to keep going.
Our Motto is "Never Ever Give Up" but that can be very difficult to do at times.
I can relate to hopelessness and desperation because in 2019 I had a radical neck dissection and then for many days I experienced a long string of complications and was there for 36 days. I gave up hope after while and was ready to die, talked with a chaplain and figured I would go to a hospice and be dead in 5 days. But God said no for some reason and somehow I got out of there and spent 10 days in a hospital rehab and then home.
So I Just leave it in God's hands, pray a lot and I always figure if I can get through a situation I may be having such as breathing, etc, and get through the day and hopefully tomorrow will be a better day.
Anyway I am so glad for you that you fought through your situation and didn't give up it is so good to have you here on the forum. I agree this is a good site and I am so glad we have a forum like this to share, compare, support, lift up, and help folks just like us that ended up with this evil H&N cancer.
I am glad you are revitalized and now back in the fight.
Wishing you the very best…
Take Care, God Bless
Russ
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Thank you Russ, we have all had a hard road, nice to have folk that understand. love you too brother.
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Recently found this site hope I can find it again. Cancer of right salivary gland tumor. Feb 24, 10 chemos and 35 radiation treatments in remission as of September 24. Dry mouth and swallowing difficult. Pray alot. Wife Bridget has difficulty with it, expects me to return to normal. Went from 160#'s to 108. Can't gain weight past that point. Ask God to guide my steps thankfully do not fear passing away. Still challenging to watch my wife undergoing this stuff. Any advice for my wife? Help. She yells to much doesn't help my stress levels. Help Help Help. Thank you.Bruce
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Welcome yo the club that none of us wanted to belong to. I am a 13 year survivor of SCC of the tonsils, chemo and radiation. I had massive radiation damage to my taste buds, salivary glands, and pretty much the entire throat. My swallow was comprised (dysphagia). About 6 months after treatment I was able to eat soft bland foods by mouth. I had lost around 90 lbs. I have had to struggle with swallowing and maintaining weight, and a myriad of other post radiation issues. as of 3 years ago have gone back on the feeding tube full time. I guess what I am trying to convey, is that even in full remission your cancer journey isn't over, and there is no normal except for the one you wake up to. Take recovery one day at a time, keep the faith going, forgive your wife because being a caregiver is sometimes harder than the treatment. I would suggest you let your wife know that her yelling is stressing you out....
my 2 cents of wisdom.
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Hello, bruce223, and welcome to the CSN H&N discussion forum.
As Hard12Find has stated, we are in the club that no one really wanted to join.
I guess once we get in the club, it's not too bad, but the initiation rights to this club are downright brutal.You don't have exact details, so I see that they found Cancer of the right salivary gland tumor. Feb 24 of 2024.
I would guess you started treatment around mid-March 2024.
I am guessing you finished treatment in early to mid-May.
Allow 2 more weeks because they say once we finish radiation, we are still cookin' for a couple weeks afterward because radiation is cumulative.
After that, it could be a couple of weeks before any improvement is felt.
So my guess is you finished treatment in about June of 2024.
We are now in the beginning of April 2025, so my estimate is you are out of treatment 8 months.
You say you are in remission, but it is not exactly remission. They went in and killed your cancer so you are now cancer-free The cancer is not remitted it should be gone after that Brutal treatment.
If you can get back on and give us better details of the times I estimated it would be good.OK, so you have dry mouth and difficulty swallowing.
These are very common after-effects of treatment that many of us deal with, you are in good company here.So saying you are out of treatment about 8 months you are not past the time of continued recovery yet, it can take up to a year or more for recovery from H&N cancer Radiation and chemo treatment.
So, did your care team set you up with a speech Therapist?
A speech therapist is all things head and neck such as swallowing, breathing, talking, chewing, etc. and can guide you post-treatment. There are some cancer centers and doctors set their head and neck patients up with a swallowing therapist before treatment ever starts and sometimes they have you do a swallowing test for a baseline to refer to. A speech therapist can help you with all your problems but most especially swallowing. There are swallowing exercises to do and you may be a candidate for dilations but first see your care team and have them recommend a speech therapist. You need a professional and probably a swallow test to find out what exactly is causing your problem and approach it the right way. You need to get these issues worked out so you swallow well again and your weight gain will take care of itself.
Swallowing and Speech Rehabilitation for Head and Neck Cancer What happens during a swallow test? Swallowing Exercises | For Patients with Head and Neck Cancer Starting Radiation TreatmentI also have some weight gain recipes I will post in another post below.
In the meantime, buy online someBoost VHC (Very High Calorie) It contains 530 calories per 8-ounce container so drinking 1 or 2 of these a day along with whatever you can eat should start to bring your weight back up.
As far as your wife Bridget having a tough time with this I don't get that, you are the one who did all the treatments and suffering.
Tell Bridget we, head and neck cancer people, have to find our New Normal. Simply because this treatment gives lasting changes, some for the rest of our life and some folks have so pretty profound changes to adapt to while other not so much.
Tell Bridget that yelling and being upset about the process of cancer treatment and recovery does not further recovery in any way so it would be good for her to calm down so you can both be calm and rested and concentrate on the appointments and the things you need to do to start swallowing better again and gaining weight.
I would like to make Bridget aware that recovery from Head & Neck Cancer is a slow process that takes weeks and months, not days and weeks like the cold or flu you sometimes get. You just went through a massive and Brutal assault on your body with radiation and chemo chemicals, and you will recover completely in due time but it takes patience and just trusting in God and praying a lot and working together and taking one day at a time.
Bridget, it is time to stop yelling, calm down, give your husband a hug, and tell him you love him, and he will tell you he loves you, and then go forward to finish this cancer battle and live life to the fullest you folks can and NEGU (Never Ever Give Up)
Bridget, I can imagine how you feel. Take a look at the video below, Kristi's Letter.
This is a letter that the person wrote and they are reading it about the cancer journey they went through either as the patient or caregiver. In this case, she was the caregiver but you can see and see the emotional strain it put on her, and the cancer experience many times will change how you look at life forever. Head and Neck cancer treatments shake you to your core.
Kristi’s Letter – Head and Neck Cancer -- Being A Caregiver -- A Tough Job of LoveAs you were saying in your posting, and I agree, pray, pray, pray, and remember "God Is Your Refuge"…
I hope this all helps in some way.
I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.
Our Motto on Here is NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
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Logan,
Thanks for taking the time to respond. It was such a great feeling to have the cancer gone for my husband, but then after 2-3 years all the radiation effects started cascading. Lately it has been alot….and it was really weighing me (as a caregiver) down. I did reach out here and received some supports, which is exactly what I was looking for. I also had a few sessions with a psychologist which also helped. I think I'm in a better place now - focusing mostly on what we CAN do and spending less time worrying about what might happen in the future and what we might no longer be able to do. I am in awe of anyone who goes through the grueling treatment necessary for head and neck cancer. Hats off to you and seize the day.
Barb
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Hey Bruce,
I am also a caregiver for my husband who had a nasopharyngeal tumor (Stage 4) ten years ago. If she would like to communicate with someone who has dealt with it from the caregiver side of things….I'm happy to email her. I'll send you a DM with my email.
Maybe some of her anger is because she is afraid of what lies ahead. We all express grief, fear, resentment in different ways. She could be pissed off with the cancer, but you're the entity that's there to release that frustration maybe. It's important that as she is taking care of you and helping you through, she takes a bit of time for self care. It seems selfish, but it's important - like putting on your own oxygen mask before you put on child's.
Hang in there. Enjoy what you can each day.
Barb
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