Plantgirl

Let me echo Kelly's advice about painkillers and go a step further. Better living thru Chemistry, I disregarded all those namby pamby labels and most definitely augmented the opiates with some beer (with the full blessings of my ENT and RO).
Unlike the PEG wars, there simply aren't enough patients who go without painkillers to have a debate. And of course, no caregiver wants the patient to suffer needlessly. Addiction as a result of oral Cancer TX is a chimera, a boogeyman of puritans, which is why competent doctors are [quote]very agreeable to giving me as much pain meds as i want today when i saw him [/quote] just as you experienced. Pain will hinder your healing.
Okay, radiation has issues, so here is my advice: Get a TSH blood level test NOW before any radiation. Why? While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level went down to 3.04 on 25 mcg ,2.17 on 50 mcg and now 1.73 on 75 mcg. Without a baseline TSH, you won't even know what is "normal" for you.
Keep the faith
Charm

Try rinsing your mouth with a combo of 16 oz warm water with 2 tsp baking soda and 2 tsp salt. If that burns, decrease the salt to 1 tsp. Rinse several times per day.

Another thing to help with pain is something called magic mouthwash. There are several different variations of this medicine. The MM I had was made of malox, lidocaine, and benedryl. You swish it around in your mouth for about 15 seconds then spit it out. That would be good for short periods of time, like when you want to eat. It lasts about 15-30 minutes max. This is by prescription so ask your doc.

Mouth pain is the absolute worst pain! Sure hope you begin to feel better very soon.

Radiation is good in making sure it's gone for longer, or never comes back. It helps to eliminate microscopic cancer cells. I had it after surgery, even though I didn't really want it, and went through hell when i had it, but now i am glad i did.

I would suggest you use whatever pain meds you can get, but use them as prescribed, and don't go off of them altogether, you have to be weened off so you don't go through withdrawal stuff.

Also, if it's just that you don't like taking pills, the fentanyl patch is a great alternative, and took a lot of pain away when i was in radiation that the pills just couldn't touch!!

If you have any questions about radiation, let me know! It's not the same for everyone. Some skate through with little to no problems, and others like me just go through hell and get every symptom and side effect on the list, even the ones they say you won't get, lol.

I will be thinking of you and hoping that this all goes smoothly!!
I do have to say, i am a bit jealous that so soon after surgery you are able to eat and swallow again, very lucky .

If you are having radiation for sure, eat as much as you can now and keep doing it till you can't. Radiation almost always makes it pretty much impossible or at the least very difficult to eat and get nourishment. I lost 45 lbs from radiation alone and 25 from surgery, and it wasn't good weight loss, all muscle! So exercise to keep up muscle function and eat as much as possible,

Wow 45 lbs? Dang...I lost 15 from the surgery and Ive been eating quite a bit, though Im really not that hungry. Thanks for the tips on the painkillers. I will definately look into the Fentanyl patch because Im really tired of this pain. It just never goes away and with the radiation Im afraid it will just get worse.

Hey all,

I'm new here as well (1st surgery less than a week ago), but noticed Charm's comment above: "there simply aren't enough patients who go without painkillers to have a debate".

I guess I'm in the minority in that I've used only minimal painkillers. Hated the opiates, and so was sent home from hospital, rather amusingly I think, with children's tylenol. Since it's liquid I can ingest it.

I'd love to discuss this with others, since I feel like it's not a common choice. Since I'm new, I wanted to make sure...is the appropriate thing to do for me to start a new thread elsewhere?

:^) Rahel

Hi Rahel,

I hated the opiates too. After being on them for awhile you really build up a tolerance and I feel they start to just mess with your system. If you need them you need them of course. How are you feeling after your surgery? So sorry that you had to go through it.

Kate

Rahel

No problem at all in starting your own thread to discuss going thru this ordeal with minimal painkillers. It'll be interesting to read. Many OCF posters accepted painkillers with trepidation and disliked the effects of opiates yet still did them.
A word of caution: don't make the mistake I originally did of carelessly using words that gave an unintended slight and or insult to those who chose differently. If I could go back in time, my PEG wars posts would make it clear that every patient who goes thru TX deserves a medal whether or not they had a PEG.
Charm

Hi Charm,

Thanks for the guidance - I will indeed start a separate thread for the discussion. And thanks for the word of caution. I *certainly* didn't mean that any one way is better than another! Just seeking to process my own experience. (If anyone took offense at my post, please accept my apologies.)

Talk to you on another thread...

Rahel

Rahel

Looking forward to it. BTW, there was absolutely nothing offensive about your post, my caution was proactive. Turns out our female caregivers are fiercely protective of their mates (Step back Sara Palin, these are the real Mama Grizzlies) so any innuendo that a TX choice means they weren't "tough" triggers passionate responses. I thrive on conflict but the very fact that you even asked what was appropriate rather than just doing it indicates a greater sensitivity (although I do feel bad later and have to apologize when I give into my Alpha Male macho mode.)