My mom is 80 and was diagnosed with cancer at the base of her tongue.

I'm so sorry your mom is going through all this! There are different mouthwashes that maybe she could try? I sincerely hope her Pet scan results are good,please keep us updated?

This is a tough time during treatment @jlsdaughter. It does start to improve slowly after radiation is complete. The common rinse is Magic Mouthwash dispensed from the oncologist. It is short term relief but it also helps to control fungal infections in the mouth which can increase pain. You are right, frequency is important.
I also had a script for an oral Lidocaine gel which really gives good relief temporarily but it was long enough to eat and swallow as I did not have a feeding tube.
Don't forget about basics like ice for numbing. She may not be able to suck on ice chips.....too painful, but a soft ice pack that wraps around the neck might really help. I used that every night at bedtime so I could get some sleep. I was 58 when I started treatment and now at 71 I can imagine how much harder it would be to stay strong as we go through this at an advanced age. Keep the nutrition going and encourage some exercise to keep her strength up. She is stronger than she thinks and needs to stay positive. Finger crossed for a good PET scan.
Make sure that when they see the oncologist they take a list of her current issues.

@sepdvm Thank you so much for the suggestions and encouragement. She has always been so healthy until this. I will relay your story to her as it is inspirational!

Hello, @jlsdaughter. Here are some tips I found online. May God bless you and yours.

Navigating Post-Treatment and the Waiting Period
What you're experiencing is often called the "treatment lag." Your mom's body is simultaneously recovering from a grueling, aggressive therapy and still fighting the residual effects of the disease. The body doesn't bounce back instantly; it often hits a new low right after the final treatment before slowly climbing out.

What to Expect Tomorrow (PET Scan Results)
The anxiety around the PET scan results is often the hardest part—it's a massive emotional hurdle. Here are a few things to keep in mind for the appointment:

The PET Scan's Purpose: The scan measures metabolic activity. The goal is for the cancerous areas to show reduced or no metabolic activity, which indicates the treatment was successful in killing those cells.

The "Flare" Phenomenon: Sometimes, the area of the tumor or nearby lymph nodes can show a temporary increase in activity, called an inflammatory "flare," which can be a sign of healing as the immune system clears the debris. Doctors will usually differentiate this from cancer activity, but don't be alarmed if they mention inflammation.

No Instant "Clear" Result: For stage 4 and aggressive cancers, doctors rarely use language like "cure" or "100% clear" right away. They will likely focus on tumor regression and control. Their primary message will be about the success of the initial treatment and the plan for follow-up surveillance. It's crucial to write down every question beforehand.

Your Mom's State: Don't expect the doctors to be surprised by her weakness and pain. They will likely confirm this is normal for a treatment that targeted the head/neck area and may recommend an adjustment to her current pain or anti-nausea medication regimen.

Practical Ways to Help Now
The most critical areas to focus on right now are pain control, rinse compliance, and supporting your father.

1. Pain Management and Energy
Schedule Pain Medication: If her pain is intermittent, it often means the medication schedule is reactive (taken after pain starts) rather than proactive. Work with the doctors to establish a strict, scheduled regimen—for example, taking medication every 4-6 hours, whether she is in pain or not. This helps maintain a constant level of relief, making the rinses and daily movement easier.

Prioritize Naps: Right now, energy conservation is everything. Encourage short, scheduled naps throughout the day, even 15 or 20 minutes. She needs to feel that sleeping is her main job.

Walking is Medicine (But Keep it Small): Even if she's weak, small, supervised walks—like just walking to the end of the hall and back, or slowly circling the kitchen island—are vital to maintaining muscle mass, improving circulation, and boosting mood. Celebrate any small movement.

2. Dental Hygiene and Rinse Compliance
The rinses are non-negotiable because the dental issues, combined with radiation exposure, create a high risk of osteoradionecrosis (bone death) and serious infection, which can be life-threatening. The goal is to make the rinses less unpleasant.

Change the Timing: Instead of just after meals (which might be painful), try performing the rinses 20–30 minutes after she has taken her pain medication, when it's most effective.

Adjust Temperature and Flavor: If the rinses are prescribed with water, try mixing them with very cold water or a small amount of unflavored carbonated water if she can tolerate it. Some people find that a metallic taste is worsened by room temperature water.

Create a System of Accountability: Since she is resisting, make the process a shared responsibility, especially with your father. You could set a timer and create a small ritual around it (e.g., "Dad, can you remind me it's rinse time? We'll do it together."). Sometimes, a change of "administrator" (having you or your sister do it) helps compliance.

3. Supporting Your 88-Year-Old Father
Your father is likely running on adrenaline and love, but he is at a high risk for caregiver burnout.

Assign the "Chief of Logistics" Role: When you and your sister are not there, assign him only one task (like ensuring the feeding tube is running smoothly) and hire outside help for others if possible.

Respite Care is Not Optional: When you and your sister trade off, ensure your father gets a mandatory 24-48 hour break where he is completely relieved of duty. He needs permission to leave the house, see a friend, or simply sleep in without an alarm. This is critical for his long-term health.

Create "Done-For-You" Resources: Instead of asking, "What can I do?", do the following on your rotation:

Stock the Freezer: Prepare his meals and put them in clearly labeled containers that only need a microwave.

Manage Appointments: Take over the task of calling the pharmacy, scheduling the next doctor's visit, or dealing with the insurance company. This administrative burden is immense and mentally exhausting.

From my similar experience, this advice is excellent. Be patient but gently persistent. It took me several months to adjust. Best wishes.

Hello, @jlsdaughter and @thomason,

I agree the thomason advice is great. The only thing I would add is I had my care at Froedtert & the Medical College of Wisconsin Cancer Clinic in WI and there were two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds.

One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record every appointment with every person I was in contact with so I could always go back and play it so nothing was missed. Never had any of my doctors or others and I have seen many over the years not allow it and some actually were glad, so important information was not missed. I have done this in 2008 with tonsil cancer and again in 2024 for my tongue cancer with included a Modified Neck Dissection.

Second, for meds I used this attached pdf to help keep track.

Good luck on the journey.

@roblem Great advice.

@jlsdaughter, how are you and your mom doing?

She passed last Friday. My heart is broken and missing her but I am thankful that her battle is over and she is no
longer in pain.

I am so sorry for your loss 🙏😢 Cancer is such a terrible thing,