recovery after 35 radiation treatments

@sepdvm

I plan on including a therapist during my next appointment with my oncologist in 2 weeks. Just to join this group was a HUGE step for me. I am making strides to better daily nutrition by increasing calories and protein. I am 11 days past my last treatment and that feels like a much longer time while I deal with the eating problems. I use the Magic Mouthwash but hit and miss with it. I had no clue that recovery would be so long and what it would do to my body. I had planned on retirement in Dec but as much as I need my work structure for support and escape from this nightmare I will probably delay that. The goal I have with my medical support team is to get away from the medications. I am supposed to return to my office the first of Nov hopefully my body will be strong enough. My family is worn out with my journey and complaints of the recovery process. Then my son might be dealing with blood cancer and is going through testing now. This has been a more than difficult year with huge problems like I said my life this year could be a soap opera.

@56tburd

You are correct there must be a better way to treat this it is barbaric. I have started just trying to manage each day it's too disappointing to plan, hope and fail. Just joining this support group was a huge step for me. I never expected to deal with mouth cancer being a non-smoker and this has been a massive shock. I miss food so much and just hate losing the ability to taste and eat. I do not adjust to change well and this has certainly shocked my world.

@sandy8043

I will look for them on my next trip to Walmart. I use the Bioten spray now with limited results. I do not not adjust to change well and just joining this support group was a huge change for me. I have the mouth magic but limited success with that. I never expected being a non-smoker to ever deal with mouth cancer. Dealing with this each day has really impacted me. I am glad I can still work to escape for a few hours focusing on work and not my condition.

@dragonfire I'm not a,smoker either. I used the Everclean Blue Listerine which I have read was not good because it killed both good and bad bacteria and may cause more problems than it solved. Whatever!

I had proton radiation in 2011. I lived on ramen noodle soup with egg mixed in (became egg drop soup). After 5 years of painful sores I underwent 6 weeks of hyperbaric chamber therapy which helped. My tongue never fully healed and now I have a growth on it. I agreed to removal of the tumor but no more than that. No digging into it to cut chunks out. The tumor consists of "bizarre cells" caused by radiation. My mouth has never fully healed. Hope you do not suffer this and get back to normal shortly. Best wishes.

@dragonfire I am so sorry to hear about your son and hope that he has a good result from his testing. You have been hit so hard with your own diagnosis and treatment, losing your dog, and now facing this prolonged recovery. It is easy to see how overwhelming it all is. Be strong, have patience, and know this is a temporary situation that does get better.

@sepdvm

I appreciate your help since patience is not a strong point with me. I am 12 days from my last treatment and it already feels like months. I have contacted my doctor again about the mouth ulcers. I had blood come out twice while doing my mouth rinse with salt and soda. The bleeding actually seemed to reduce the felt swelling. It just seems every day only baby steps my pain has come down some but these mouth sores bother me a lot. I made a difficult decision Saturday after the doctor told me Friday I have some weeks ahead before I can eat real food that was crushing news. Since then I have added this support group, milk shakes, protein powder, more creamed soups, jello, short walks and neck stretching techniques I found online. I was told I needed to increase thinking positive so this is what I have changed so far. I hope I will continue to improve but I miss food so very much since cooking is a major stress relief for me. I am trying to reduce my medicine slowly as instructed by dose and hours. I don't know what I would do if I could not work half days. I do not go out in crowds due to germs I don't need any more problems than I have. I am still angry that my body left me down especially since I eat healthy, exercise and seem to be in good shape for my age. I have always consumed cancer fighting foods and then I get this. Yes, losing my dog hurt a lot still brings tears to my eyes spent 14 grand trying everything to save him and failed at that to. First I lost my dog and now going through this health nightmare. I have constant communication with my care team to ask questions when I have concerns. I will never have patience like others have but trying the best I can during this extremely difficult time.

I have had so.luch radiation with two cancer diagnosis. Nasalpharangeal in 2021 and tongue 2024. This has me now to the point that my scar tissue is so bad it's hard to move my neck. I no longer can swallow not even my own spit so I'm still on a feeding tube. I currently had to have a tooth pulled and hope this heals well . Because of all that radiation my jawbone is more brittle. I had 22 lymph nodes removed on my left side of my neck although there was no cancer detected in there. It was more out of precaution. My neck feels like a tree trunk and like someone is choking me all the time. All a side effect from radiation. So no this has not been pleasant at all and healing takes a long time and I will never be the same. The thing is I'm grateful to be alive and I am determined to enjoy it. I do that by staying positive and enjoy what I can. And yes they really don't tell you ALL those side effects from so much radiation for one it's because they don't really know it either. I have manual drainage massage and myofacial massage 3 times a week. Speech therapy and physical therapy. It keeps me busy and does seem to help a bit. My advice to you is learn to live with it and work around it. You will be okay. Stay positive.