I thought I'd feel better by now

Marty36
Marty36 Member Posts: 84
in Head and Neck Cancer #1
I have had, I realize, very unrealistic expectations of what my recovery would be like. 13 months after my diagnosis, I've had three surgeries, two rounds of radiation and two rounds of chemotherapy. Yet, somehow I thought I'd feel better than I do. What was I thinking?

Now, it's the edema/lymphedema which is getting me down. Pain and swelling in my neck and throat (cut out 44 lymphnodes in surgery 2). I'm doing PT and seeing a lymphedema OT. My tongue still hurts from where the Cyberknife and three surgeries were focused.

I guess I kept hoping that once the treatments would be over, I'd be better. But it's just slower than I thought. I work full-time and maintain a personal life. But eating is more of a problem, talking is more of a problem, I'm continuing to lose weight and I'm just in sort of a dull, constant pain. I came to the unfortunate realization that if took a Percocet during the day, it made the day go better. But I'd really hoped to be off prescription pain meds by now (I try to only take at bedtime), even though the Cyberknife just ended a couple of months ago.

I know I'm not alone, but I just needed to vent.

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    Wish
    I wish I had some inspirational words for you, but I don't. 13 months is really not a long time in the big picture. It sounds like you had double of all treatments. It takes time for the body to heal, we went through a lot. I am battling lack of energy and getting dizzy. Going to see about getting lab work done. If you are working and having a life, sounds like you are doing pretty ok. Pain is not fun.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    you are not alone
    Marty. I am four months out now. Was doing about 70 percent solid food, went back to liquids a few days ago to give myself a rest. Mouth feels like it has been sandpapered. Off painpills but still on magic mouthwash. I am glad to be alive, not frustrated at the moment. Thought I would share some optimism with you. Oh, speech is so-so still, maybe forever. Cheers, man.


    Pat
  • Ingrid K
    Ingrid K Member Posts: 813
    #4
    Marty, please don't be so
    Marty, please don't be so hard on yourself. You are back to work FULL TIME.... that alone is truly amazing after such a short time. As others have said, it takes time. It does get better, but it does take time. It's never fast enough though when you are the one in pain. I am 18 months out and still take hydrocodone occasionally, especially due to the amount of swelling I still have.

    If you haven't found it yet, look on the SuperThread for the instructions for massaging exercises for the swelling. They help a lot.

    I think that you are doing great. It doesn't sound like you have a feeding tube, so you must be eating OK. Start off with easy to chew and swallow things, and keep trying new things. Every week you may be able to eat something that you couldn't eat 2 weeks earlier. Just stick with it, and you will see improvement over time.

    Keep up the good work !
  • Marty36
    Marty36 Member Posts: 84
    #5
    Ingrid K said:

    Marty, please don't be so
    Marty, please don't be so hard on yourself. You are back to work FULL TIME.... that alone is truly amazing after such a short time. As others have said, it takes time. It does get better, but it does take time. It's never fast enough though when you are the one in pain. I am 18 months out and still take hydrocodone occasionally, especially due to the amount of swelling I still have.

    If you haven't found it yet, look on the SuperThread for the instructions for massaging exercises for the swelling. They help a lot.

    I think that you are doing great. It doesn't sound like you have a feeding tube, so you must be eating OK. Start off with easy to chew and swallow things, and keep trying new things. Every week you may be able to eat something that you couldn't eat 2 weeks earlier. Just stick with it, and you will see improvement over time.

    Keep up the good work !

    Thanks for your support
    Yeah, I've never had a PEG tube and have continued to eat through the whole process. The swelling and dry mouth (plus limited tongue mobility) just make eating a bit more of a challenge. I keep at it, but eating has largely quit being fun.

    Part of the challenge is that after each step of the process, I've been able to return to work largely full-time. Except for the first six weeks when I was recovering from surgery, I've been able to work (even during the first rads/chemo and part of the second rads/chemo). In some ways, that's often what discourages me. I feel like if I can be productive and well-enough to get to work, why don't I feel better?

    But it's important to remind myself (ourselves) that we've been through a lot and the healing doesn't happen over a matter of days and weeks, but instead months and years.
  • katenorwood
    katenorwood Member Posts: 1,912
    #6
    Marty36 said:

    Thanks for your support
    Yeah, I've never had a PEG tube and have continued to eat through the whole process. The swelling and dry mouth (plus limited tongue mobility) just make eating a bit more of a challenge. I keep at it, but eating has largely quit being fun.

    Part of the challenge is that after each step of the process, I've been able to return to work largely full-time. Except for the first six weeks when I was recovering from surgery, I've been able to work (even during the first rads/chemo and part of the second rads/chemo). In some ways, that's often what discourages me. I feel like if I can be productive and well-enough to get to work, why don't I feel better?

    But it's important to remind myself (ourselves) that we've been through a lot and the healing doesn't happen over a matter of days and weeks, but instead months and years.

    Takes time
    Hello,
    You sound like you're right on track..working full time. Holy molie, you have it goin on ! Every BODY is different...and if you realize this things will start moving forward. I personally think you need to stop beating yourself up, and know it's o.k. to take time for you ! Warmest regards, Katie
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    feeling better soon
    Hi Marty36,

    You have been around the bend and back, it is no wonder you want to feel better soon. You do say (feeling better) is going slower than you expected, so, maybe you are getting better. By managing to work full time you’ve layered on a whole more complicated level of trying to feel good and then trying to control the pain with and without drugs is a daunting task.

    You sound like you are doing as well as expected considering everything. Maybe, you are right and just needed to vent. If you are progressing to your doctor’s satisfaction, you are probably ok.

    We are each lucky that those around us can’t see us venting. I would have smoke billowing out of my ears (at times).

    Best,

    Matt
  • Paintslinger
    Paintslinger Member Posts: 70
    #8
    You have every reason to vent
    Marty36,
    A lot of people can't even relate to what you're going through right now. I had it rough (see Post-cancer blahs) but I did not have to go through what you're going through. You're going through this and it still seems like you're maintaining a positive attitude. You're a better man than I, Gunga Din! Just remember IT WILL GET BETTER and good luck with everything.
    Sincerely,
    Paintslinger

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