After radiation for HPV neck cancer: Hang in there, it gets better

Kent8692 you are correct, it does get better. These small steps tend to make you appreciate life as never before.
I am glad I went through the process. Would I do it again? I don't know the answer and hope I never have to answer that. It is life altering in some ways. The healing is far slower than anyone can imagine.
I always loved it when someone would say that I look fine, as if I were ever 100%. Inside I might be screaming. The years go by.
Good healing to you and I hope you get close to where you once were health wise.

Sounds like you are making good progress for only 9 weeks out Kent.
That's great to hear.
20 weeks out from tonsil and lymph node cancer here and mostly back to normal.
Fatigue has gone away and sleeping normal again.
Noticing some occasional tightness
in the neck which seems to go away with physical work .
My jaw on one side ached for awhile but that has mostly passed.
I'm getting comments like you are skinny or you've lost weight
which are both true. Or "are you OK ? " Yes thank you I feel fine.
I didn't have any excess weight to start with so losing 10-15 lbs shows I guess.
And the recovery beat goes on. Keep up the fight !

Good afternoon ,
During your 9 weeks were you ever in need of pain medicine ?

Yes, the first two weeks I was hurting….I took an occasional oxycodone and other times I took a couple of Tylenols. I tried to avoid pain meds, but sometimes I just had to use them…

About 4 weeks into treatment I asked for pain meds.
I said I don't care what but needed something very small due to swallowing difficulty.
Tylenol was too big and mostly useless at that stage.
Ended up getting oxycodone and used that as needed for about 2 mos.
I was grateful for the relief and it also helped with sleep which my body needed desperately.
Don't be afraid to ask for pain meds if you need it.

@kent8692, I expanded your title to give others hope as they go through radiation. How are you doing now as you approach almost 3 months? What is one thing you wish you had known?

@colleenyoung I am doing “OK”. Slow progress, but progress I’ll take…just had a follow up with my team and had a scope down my throat, doctor said no visible signs of cancer remain, so I’ll take that win. Going in for a CT scan next week…

What do I wish I had known? Hmmm…I always felt pretty alone on this journey, a lot of the “why me?” thoughts in my head. But I just ran into an old friend this past weekend who had the exact same cancer and treatment as me. And he mentioned another mutual friend who had the same deal just last year. So I’m not special, lol. And somehow it was reassuring
….

I think in most cases, it should be “Hang in there, it gets tolerable”.
Don’t get me wrong, certain side effects improve dramatically over time like taste buds and ability to swallow in my case, but others you just have to get used to. Like the chronic dry mouth, lymphedema etc. for example. I am forever grateful for the treatment I received and the fact that I am still here one year out. I still have metastatic disease that I am dealing with and I am on Keytruda every 3 weeks. “Scanziety” is always an issue, but I have learned to deal with it through counseling, family and groups like this. I wish everyone the best and keep the faith.

@scottmcf1431, you are correct, the new normal is tough to live with. But the ability to live and grow older is a blessing despite the changes. I also have metastatic SCC, in my 15th year now since original surgery. Libtayo, which works via the same pathway as Keytruda has squelched my last metastasis which was to kidney and lymph nodes in 2020. Now 3 years off the immunotherapy and still no recurrence (knocking on wood). Keep your positive attitude and enjoy life each day. Wishing you wellness.