Radiation Fallout

Barbaraek

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.

Logan51

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.

Barbaraek

https://csn.cancer.org/discussion/comment/1721800#Comment_1721800

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

Logan51

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.

Hard12Find

https://csn.cancer.org/discussion/329101/radiation-fallout

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.

wbcgaruss

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

Hard12Find

https://csn.cancer.org/discussion/comment/1722031#Comment_1722031

Thank you Russ, we have all had a hard road, nice to have folk that understand. love you too brother.