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Still Have Pain! :(

Irishgypsie's picture
Irishgypsie
Posts: 333
Joined: May 2010

Hi, Folks! Happy labor Day! I wish I could be celebrating with a nice cold beer! But I will have one next year. Anyway, as some of you may know I am about 10 weeks post treatment today!
1) Energy level is getting there I ride my bike near the beach; haven't been going to the gym as much.
2) Taste is great I would say I am at 50% right now I can taste peach yogurt, chocolate brownies, hamburger, hardboiled eggs, had some steamed clams with butter last week!
3) Facial/Neck swelling comes and goes and not much neck stiffness from surgery.
4) Depression is up and down but I am managing; looking do buy a yellow lab pup! :)and keeping busy with friends when I can but I still get sad missing the old Charles!!

Overall I think I am doing well. However I am still having pain in one area where I received the most radiation on my right side back of mouth. It hurts every time I swallow. I want to get off the pain meds; but then some days it hurts too much. 15mg oxycodone TID (3 times a day) I would say some day 5-6/10 on pain scale. The ent and radiation doc both scoped me and both said not to worry but I'm still healing.
I know some of you guys like Mark (Kimba's husband; he is two weeks behind me and is off meds! I'm a little worried; I have always been a quick healer. Could I be over doing it on the food. Should I just be drinking and eating soft stuff still! I worry I may have to get HOB Hyperberic oxygen treatment if this doesn't heal!! :)

Charles

rush1958's picture
rush1958
Posts: 204
Joined: Jul 2010

Charles,

Hang in there! Sounds like things are going OK.

I'm about 10 weeks out myself. I still get a sensation of something like a popcorn husk is caught in the throat where I had the most rads too. It's not really painful, but it's noticable.

I'm not sure that I'd want to compare pain level with anyone else, because we're all so different. I had the oxycodone for pain during treatment, but I never had to use it. My throat never really got sore.

Rush

rmkbrad
Posts: 177
Joined: Dec 2009

My pain went away for the most part after about 12 weeks. It just stoped pretty quick, hang in there it will get better.

Brad

miccmill's picture
miccmill
Posts: 248
Joined: May 2010

Just to illustrate how different everyone is, Glenn took himself off pain meds at about 3 weeks but his pain was so bad DURING treatment that he was sent to a Palliative Care MD and given Methadone. That was the only thing that made his pain tolerable.

Don't know why it went away so quickly after treatment ended.

We're realizing now how long the recovery period is going to take. Even though he doesn't have pain, he's got extreme fatigue and eating is a chore thats going forward really slowly. Food still trying to "go down the wrong way" etc.

Joanne told him the other day that he wasn't anywhere near ready to be cleared for dentures, even though he didn't have direct radiation to his oral cavity. That's when we realized this recovery isn't quite the same as recovery from surgery.

Hondo's picture
Hondo
Posts: 6122
Joined: Apr 2009

Don’t worry we are all different and will all heal different. I am 8 years out of my first treatment and just getting back on the pain meds. So much lost of bone mass and nerve ending exposed in the head, I too don’t like taking the pain meds and I take them only when needed. Living with pain and meds is all part of the deal.

Great Idea on yellow lab, that will keep you busy for quite sometime

Skiffin16's picture
Skiffin16
Posts: 8173
Joined: Sep 2009

For a long time several weeks or months even actually, I'd have various ached, pains, stiffness an swelling, I still do on occasion. I did have one area that bothered me for a very long time, and still does, not pain, just irritation. It's like a pop corn kernel in the back of my tongue. It neve shows up on scans or scopes, but use to bother me a lot.

You know as well as anyone that it's a long slow road and everyone is different. But on that same note, if it's bothering you enough, see your ENT for scopes. He should be your actual expert as for the throat.

Labs, can't remember if I told you or you picked it up. But I'm (my wife and I) are lab people. We ha a black female (Ebony) for 13 years until she passed....very hard, we still think of her daily. She'll always be a part of us.

We now have two 3YO chocolate lab sisters, Kali, and Jasmine. They are both spoiled rotten and hugely affectionate. Definitely were my two top care givers, Shelley my wife being #1.

Any advice you might need with them, let me know. Along with the other lab people on here.....

Best to you buddy,
John

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Hang in there HOSS! You are doing great. My radiation was focused in the nasopharanx area, so my soreness is internal to my lower throat just past my vocal cords. I'm two months out of 40 Rads and just finished Chemo this past Friday. I am very sensitive to acidic foods, it burns like the dickens...apple sauce burns to give you an idea of my sensitivity. Is your pain a muscular pain or is it a burning sensation from different types of food? Mine feels like I have open soars, but is getting better week by week. I am off pain meds but we are almost at the same point with all of your highlights. I wanted a nice glass of Johnny today but I wouldn't even attempt to smell it, lol. I'm off of my feeding tube and on the Ensure diet with soup. My limitation is due to my burning still and pain meds do not tame it whatsoever.

Good luck sir!

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

I love the report from the doctor that you are doing so well.

I am truly amazed that you are able to taste and swallow as much as you are. I personally believe you are doing wonderful.

The pains will slowly go away but they will be slow. Radiation slows recovery approx. 6 times slower that before treatments. I am headed towards 15 years post treatment and still recover slowly. I had two teeth pulled 18 weeks ago and still is barely healed over. My ENT and oral surgeon said this is all normal and will take many more months to partly heal and may never fully fill in. An average person takes 2-3 weeks to fully heal.

I am not an HBO fan. Back in 1996 my doctor told me never to do HBO and said he would not ever put me in. He died 7 years ago and his partner is now my ENT. 2 plus years ago I had dead skin and infection on my pharynx and told me I would be fine with HBO and antibiotics. In 12 years prior I did not have cancer revisit my body. Well 3 months after HBO I had cancer back on my tongue. Gee I can only use some common sense and think HBO was the cause and several doctors agree. I do not recomend HBO esp. this soon after treatments.

10 months ago I took in a British Yellow Lab, he has changed my life, he is always wagging his tail. I suggest getting one.

Keep us updated on your progress please.

John

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi Charles,

Ditto Rush and Hondo, everyone recovers at their own pace. So not to worry about comparing yourself to others. Have faith in your docs. I'm with you on wanting that nice cold beer!!! Cheers

Jimbo

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

Hey Charles,

Don't worry about it yet. With me, I am now going through physical therapy and the pain can be quite tough at times. They sacrificed a nerve that goes to my shoulder and it sometimes really hurts. As far as after treatment, I took meds for as long as I needed them. So right now, just keep on keepin on and it will get better.

Best,
Steve

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