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Lesser Evil - Pain Meds or Eating?

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Need to whine. Which is worse - taking pain meds, or not eating? Took hydrocodone/APAP solution for pain a little while ago. I don't want to take pain meds. At this point, don't need them if I'm just sitting around - only took it just now so I can try to eat. Swallowing food seems to not be worth the effort. But I want to swallow food, at least once a day, even though my taste buds are mostly shot (I can taste some things - like a watered-down version of taste for some things, and yuckiness for others). I have a PEG tube in, so no starvation concerns.

I KNOW everyone loses their taste buds and it hurts everyone to swallow sooner or later when chemo and radiation are in the mix. I did rad 19 of 35 today. I felt like I was letting myself down when it occurred to me today that within a matter of a few days, I've gone to taking in very few calories orally. The pain med isn't doing much, but does cut the pain a little. No "magic" mouthwash, here. I want to swallow, and dread the idea of taking pain meds when I'm already constipated, and don't want to be sleepy and am struggling to get enough water in, and it still hurts to eat, just less. I've already lowered my standards, and am eating things that are bad for me now, just because I can eat them, and they've got calories - no enjoyment.

I just need someone to say "Man up, Pam - I made myself eat what I didn't want, and took meds I didn't want, and I'm glad I did", please. Whining over (for now).

Be well, everyone

- Pam

pk's picture
pk
Posts: 192
Joined: Aug 2009

My husband used his feeding tube to take in nutrition when food was just to hard and caused too much pain to swallow. For him this started after about 3 1/2 weeks of treatment. He continued to use it for about 2 weeks after his radiation and chemo ended. He even used it to take his medications. During these weeks when it was just to awful to eat food. He did try to drink water and never became dehydrated.
You are going through hell and you are not whining. This is the battle of your lifetime. You must have adequate nutrition so use that tube. You also need to take pain medication. It will be easier to keep your attitude in check if you can manage your pain and keep yourself nourished.
Bob ended his treatment the end of Sept., had his first PET Jan 5th and it came back clean, is now eating like a trooper although his taste is compromised, is totally pain free, has his energy back (no more naps for this boy), and has a wonderful attitude.
You will get there too. Just do everything in your power to manage the pain and take in enough calories to prevent tons of weight loss and when you feel tired NAP!!!
Hang in and hang on.
Phyllis

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I can see your husband has a great source of strength and support in you. I appreciate your encouraging words. Sitting here, sipping lukewarm diet "hot" chocolate now. Never used to drink much of it, but it tastes much closer to what I think it should taste like than almost anything else. Appreciate the pep talk - and agree with it.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Take the pain meds. Eat. Drink. Whine. You have the right to.

I've been using hydrocodone for four days following my tonsillectomy and it seems to have done me some good. I will use it again for the radiation, now that I can see how it works. (Listen to me, whining about a tonsillectomy - now that is some quality whining....) You can get through this. You WILL get through this. And, I will be right behind you.

warmly,

Deb L.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Deb,
I need for you to know - the tonsillectomy pain was bigger for me than the 19th day of rads pain is. As always - need to qualify - FOR ME. Thx for the punch in the arm (when I deserve a boot in the butt).

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

This is a battle Pam and these are the sacrifices we make to beat cancer. It sucks, it hurts, but what are you going to do? Roll over. I don't think so. I wont let you.

When my brother had lymphoma (20 year survivor) and went through 25 weeks of chemo and rads he developed a saying that helped him through, "Every day is a good day even if it sucks."

You gotta eat and hydrate Pam. That is what you do now. *Everything* else is second.

Best,

Mick

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Mick,
Thanks. Love the "Every day is a good day even if it sucks". I said from the start that even though I didn't want to take pain meds if I could avoid it, I would if it was the only way to keep swallowing - just need to stick to my guns.

MarineE5
Posts: 762
Joined: Dec 2005

Hello Pam,

You are at the stage that things are only going to get more painful. You need to stay ahead of the pain. I was in week 4 and still hadn't taken any pain Med's, but my Radiation Oncologist told me to start taking the pain Med's. He was right, go figure : ). If you are constipated, then you aren't taking in enough water daily. We need to take in about 64 ozs per day from what I was told. I took a over the counter stool softener called " Colace " once a day and it worked fine for me.

I didn't use the " Magic Mouthwash " that many here have used, I wasn't aware of it at the time. I used the Baking Soda and Salt solution in warm water to rinse/ gargle as often as every 30 minutes if I felt I needed to. It would semi-numb my mouth so I could eat something soft. Soft boiled eggs, scrambled eggs, milk shakes with bananas. I also had the Peg Tube to get that extra nutrition in also.

Vent, whine, or anything else you need to do to get thru this, but try to stay positive and beat the snot out of this Beast.

My Best to You and Everyone Here

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

MarineE5,
The water's making me crazy. Until Monday, I was getting in at least 70 ounces a day. The last three days, it's really gone down - but I'm getting back on that horse. I've got some disease-beating to do.
It gives me a boost every time I see posts from "old" survivors like yourself - reminds me of the important bit - the goal.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Take the pain meds. I was not even going to get a PEG tube before my radiation. Thank God I changed my mind. I really thought I would be able to fight through the pain and eat and drink. That did not happen. There came a time when there was no "manning up about it." I could not eat or drink by mouth. I was on 75 mcgs of Fentanyl, and the pain was ridiculous. I could not take anything else for break thru pain because I was out of it, and felt like I was going to od. They did not want to give me more Fentanyl, because I am a smaller girl. I finished radiation 5-15-09 and in September I remember my RO looking in my mouth saying, he could see why there was still no way I could possibly eat. My mouth was still a bloody mess. I started to try to eat in October and the pain was still so bad. Turns out I could not swallow because of the stricture. I was down to less than 2mm high up in my throat from radiation. I am doing better now, but my point is....sometimes you just have to do what you have to do. I thought I would be eating normally by now, and was going to be eating all these healthy foods, veggies and very low sugar. I am living on ice cream and protein drinks, bananas, boost breeze, and back on PEG Tube. I don't even like ice cream, but I cannot eat enough calories trying to get down food. I am trying different things every day, and trying to get back to normal.

Yes, keep trying food every day, but use the PEG, take the pain meds, that is what you got it for. I am really hoping that you can keep eating all through your treatment. My heart goes out to you, I know how bad it sucks to go thru.

One thing I had a problem with was lack of potassium, and lack of fibre to keep things moving along so to speak. I would put through my water, 4- 6 cans of Nutren, and 6oz prune juice, 1 Activia yogurt, 1 banana baby food, and one sweet potato baby food. All through the tube. If something was a little thick, I would just thin it down with water.

I did have to have IV fluids two oe three times during rads. I wanted to make myself eat what I did not want. I just couldn't. Sometimes you can't. It's okay. Keep trying, but do not ever feel badly if you cannot. Just keep your head down and plow through, day by day. You are not whining, and even if I thought for a second that you were, you have every right to whine. It sucks. We are here for you. You can whine to me any time. I am up all night, bug me anytime. LOL

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Pam,
I am just starting this journey and I had a tonsillectomy and dissection. Several other things happened during the op but I have never been one to take meds, just don't like pills. Heard Deb comment earlier about her tonsillectomy and whining, but that is the worst I have ever been hurt in my life. How's that for whining? I see from these posts that it will probably get worse, and I will get through it, but I learned from the op that I WILL take my meds. I WILL stay ahead of the pain, be it to eat, swallow or just cope. I think I am a fairly tough guy, but I know this will tell me I am not all that tough. I just cried before I got the peg and port because I was scared and really losing control of what happens to me. I do not cry. Strike that, I do NOW!!!. So whining, you're not doin so bad are you, just listen to me! Hang in there.

Regards.
Steve

Pino Tea
Posts: 6
Joined: Feb 2010

I am also just starting on this journey. I have had 16 sessions radiotherapy out of 30, left neck side only. My throat is not yet as sore as it was when I had my tonsil removed, just the roof of my mouth starting to get sore, so my problem isn't the swallowing yet but the disgusting taste of everything. I am really struggling to find anything palatable. Scrambled eggs and omelettes seem to be the only thing I can tolerate. The hospital gave me some drinks called Fortijuice which are 300 calories each but I am even struggling to drink those. They also told me to up my medication from Paracetomol 4 times a day to now include morphine. However as I am still managing just with the Paracetomol I think I will put the morphine on hold until I need it as I will not be able to drive once I start with that. Also the morphine causes constipation. This might be a little too much information but I honestley can't remember the last time I 'went'. Definately over 9 days ago! The hospital have given me some Senna and some other stuff in a sachet but still no movement. Think it must be all those eggs I am eating. However, that said, I am not feeling too bad at the moment. I have a problem explaining to people about this taste thing. They say things like 'have you tried pasta, rice pudding, soups', but I just can't explain what the taste is like when it hits the back of my throat. I've heard 'cardboard' mentioned but I can't even associate it with that.

Best wishes to everyone.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Oh, goodness - yet ANOTHER reason for me to be grateful - I'm upset because I've only been going twice a week - 9 days would make me insane. I hope the Senna brings you help - I'm starting the softeners today.
I know how you feel about people (who do not/have not had cancer) offering helpful hints on eating. It's kind, but useless. I know that pudding is soft and oatmeal is bland - I can't describe to them what I'm dealing with effectively. I know you should eat just because you need to, not for taste. I can't explain how it feels like my body doesn't recognize some foods as food, I think.
We're halfway finished with rads - keep working it, Pino Tea.

staceya's picture
staceya
Posts: 705
Joined: Jan 2010

I agree, everything seems to taste awful. I am grateful that I can swallow.
Does anything taste good to you?

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Staceya,

Nothing has tasted good for days now for me. Most things are tasteless, or I get a hint of taste (like you take a cup of fruit juice and add 7 or 8 cups of water to it), or I get an alien taste. I've found a few things that I can taste - don't know why. Sugar Free Hot chocolate is close to "normal" (but NOT chocolate candy - huh?). Strawberry preserves still has taste for me (just weaker) - same for chicken chow fun (I couldn't taste spaghetti with red sauce, but could taste chicken chow fun - i dunno). I seem to have more luck with flavored waters than with food. A fellow patient at the radiologist's told me canned pork and beans has taste for him - I bought some to try. What about you, Staceya? I'd be interested to know what foods people can taste the longest.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Steve,
I told Deb - the tonsillectomy pain (only the right one for me) was worse FOR ME than the just-over half-done-rads pain. If I'm not trying to swallow, the pain's not much. But reading your post, I remembered the ENT nurse telling me after surgery - that I HAD to begin the pain meds at a certain time, and could not miss a dose. I even set alarms so I wouldn't mess up the schedule. I didn't like being sleepy all the time, but it did make things easier on me. I've always been tough and sturdy (ooh, sounding a little macho for a woman now), and took it as a personal insult that my body would want pain relief, I guess.
And, Steve - I'm not a crier, either but I can admit (here, not to my family) that getting the PICC and PEG hurt my heart, even though I knew they were the right things to do. I felt like they made my status a "patient" official and undeniable, and public.
So, I'm stepping out on the path like a big girl again - others posting here made the path easier - I take advantage of that,and appreciate it. You follow me on the path, but your assistance goes before you - thanks.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

I think I'm going to come at that one from a different perspective. I'm going to have to. I'm already scrawny; I' think I'm down some 5 or 10 pounds from stress, worry, and the tonsillectomy. I see the PICC and PEG as tools to facilitate my status as a SURVIVOR. Hell, I'm already a patient. And, I'm already pretty public. I've been sniveling in front of just about everyone.

Deb L.
Proud sniveler

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Deb,

The 1st surgery took 16 pounds from me. I am 6-2 and weighed 232. Down to 216. Was able to gain back 4 pounds before port and peg. Bought a scale Tuesday 2nd surgery Wednesday. Now down to 209. 210 is just about right for me. So while I had it to lose, hindsight is 20-20
on this one. Glad I opted for them, hope I don't need one of them. And so the battle rages on!! Consider all options, but you choose. We are fighting this monster together!!

Sniveling but not Cowardly,
Steve

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Steve, it is really alright to cry. I'm sure all of us have. In fact, my last treatment was 10/22/09 and I still cry. I still get scared and I still have questions. Under normal circumstances, we we're all strong, but cancer changed our game plan. So please, cry when you need to. Consider it as cleansing your body of unwanted thoughts. I pray God is with you and everyone here and that He will bless you/us with the strength to carry on. I also pray that He will heal you/us of this cancer forever. God Bless everyone.
Deb

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Sweetblood,
I do have to admit - I was whining. I wouldn't feel bad about whining, but I really have been "lucky" during my treatment. I have not suffered nearly as much as the average head and neck patient, it seems. My doctors say I'm withstanding treatment better than most all the other patients (I still have one guy to beat - he's out of treatment).
I'm embarrassed to admit - reading posts about people like you (people who have such a harder road than mine) actually help me with my attitude - I tell myself I'm lucky and should be grateful. Thanks for propping me up.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

We all do a little whining sometimes, it helps in the healing I believe just to get it out of our system. Everyone reacts differently to the treatment some are able to eat and others need a little help with the pain meds, I am like you Pam I hate taking anything I don’t need. I took radiation treatment twice and did not have a PEG either time; the only way for me was to eat to stay alive. I had to be forced to eat, and to this day I have no idea how my Wife was able to make me eat when I did not want too. I can really get mean some times and found out that she can get meaner really fast, I just thank God she was there to help me along the way.

What ever works for you taking the meds or not taking the meds, there is no right or wrong when you are going through treatment, the goal is to get you passed the treatment and in the healing phase.

Take care

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

God bless you, Pam. I can't help with your questions but wanted to say that it is ok to whine sometimes. I don't believe one of us could say we've never whined, so if it helps you, GO AHEAD AND WHINE!! You have our permission....lol. Good luck with the eating and may God bless you.
Debbie

Skiffin16's picture
Skiffin16
Posts: 8105
Joined: Sep 2009

LOL, I was so grumpy one time that I griped at my wife because she was making too much noise taking a fork out of the drawer....

She kept me in line though, and you quickly learn who takes care of you in those situations when even the best of your friends don't seem to be there for you anymore.

Sometimes you get to the point that you have no humility any longer...that's when you true frineds are there for you.

I found out that my best friend and companion was defintiely my wife.

I guess instances like these do truely test the level of friendships that you have or think you have.

I have one friend, that still won't talk with me or communicate any longer because of me having cancer. It hurts knowing that you have someone that feels that way. And in all fairness I can understand his logic, it doesn]t make it any easier though. Shortly after I was diagnosed his father passed away. So somehow he relates me and cancer with the memories of his father.

JG

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