Pain After I Am Ned

Dav1965
Dav1965 Member Posts: 132
in Head and Neck Cancer #1

I had stage 4 squamas cell carcinoma on my tongue and inside my mouth along with my neck lymphnodes. I hade all of my tongue removed except about 1/4 in strip on my right side of my tongue. I also had a double neck dissection with cancer in my lympthnodes. I had chemo Cisplatin and radiation. I had 72 or 76 grey radiation that killed my salive gland and thyroid glland.

I was in great shape when i got sick. I was 45 then and now i am 50. I have bad side effects first i have tinnitus but that is ok. My biggest problem i am in constant pain. I mean pain from 1 to 10 a  good 9. I am still on 60mg of morphine in the morning and 30mg of morphine at night. I also take 15mg of oxcodone a day 3 times a day if i need  it. Some days i take 1 oxycodone somedays i take 6 or more.

I also go every month and get pin point injections in different parts of my body along with a toradol shot. Sometime i go every 2 weeks but most of the time it is just 1 time a month. My doctors think i have a bad reaction to Cisplatin. Even with pain medicine my pain is a 3 on a good day and i do ot have many of them. With the cold and rain with meds i am a 4 or a 5.

I do not smoke or drink so the doctors do not know how i got cancer. My 2 questions are am i the only one with this problem and what can i do to make the pain bearable. I now go to the pain clinic but is there anything else i can do to help me.

I am in such pain sometimes i ask God to let me go home. I do not work anymore and all my doctors say that i will never work again. I am a welder or an electrician.

I just can not stand being home all day and my wife working. I believe a man should provide for his wife not the other way around. My wife understands she leaves me some chores and when i get the ist done she will add some more. It might take a week before i feal like doing what she asked me but it gets done eventually.

Any ideas to help with pain? Thanks David

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    #2
    David

    I am so sorry you are experiencing such pain! It sounds like you are trying to work with the doctors to find the right combination of pain control options but haven't found the right painkiller or combination of therapies to counteract the severe pain you experience. I wish I had an answer for you. Is it possible to visit a palliative care doctor that is different from the one you are seeing now? Do they have a "pain team"? I know at the cancer center where my husband was treated they have specialists who are responsible for dealing directly with the pain that comes about from the treatment of cancer.

    Maybe some help from psychology would help too = people can learn to adapt to pain through biofeedback and meditation. It may not make the pain go away but perhaps it may enable you to adapt to it better. Being in constant pain is also a recipe for depression - so please be on the lookout for that too, and reach out for help.

    I hope maybe someone else has some practical suggestions for you. I am sorry I can't help you more.

     

    Barbara

  • wmc
    wmc Member Posts: 1,804
    #3
    I wish I had an answer...........

    David I wish I had the answers that you seek. As for the tinnitus you most likely got that from the chemo. I got mine from load noise and age. There is nothing you can do for it, as it is not real. It is from hair loss in your ear and the frequency it is you no longer hear. It is all in your mind and your mind is creating it because you should hear it. I knew I had it and went and got tested which was just throwing mony away because all they can do is say yes you do have it and we can't do anything. White noise and the machines will not help. On the good side, many have had to get hearing aids because of chemo so you got lucky in a small way.

    As far as your pain I am sorry as from 1 ~ 10, I have seen 11+. I had colapsed lungs and the treatment to keep them inflated was the worst I ever had. I have bone spire in my neck that can press in my nerves so I understand the praying to make it stop. Your doctors seem to be trying to get it under control. They will never make it all gone, there gold is just to get to where you can tolerate it, like a 3 or 4. I would think they might do a fentinal patch and add the Oxycotten for breakthrough pain.

    AS how you got the cancer really doesn't matter, it only matters what you do to fight it. Smokong is the #1; and Drinking is #2; but there is also #3 HPV+; and #4 Acid reflux, which is overlooked but is a factor. and last #5 You just did for no reason that can ever be explained. This is why I say the why does not matter, and can make it harder on you to try to get an answer that just isn't there. I do wish you luck and will keep you in my thougts and prayers.

    Bill

  • josh r.
    josh r. Member Posts: 264 Member
    #4
    Prayers for you David

    David,

    I am so sorry for your pain and despair. I know I am not alone in sending prayers and best thoughts to and for you. I wish I had an answer for your pains. Prayers and thoughts for you. josh r

  • Kenny-
    Kenny- Member Posts: 99 Member
    #5
    Unconventional methods

    David,

    Sorry to hear about your condition. Where do you live? If all methods fail, you may want to try unconventional Eastern ones. A few to name: acupunture, herbal remedies, reiki/qiqong/chi. 

    There's some folklore in them, but I personally know of friends who swear by them that couldn't be resolved by western/current medical doctors. 

    But if nothing else works, you may find that it's worth a shot. 

     

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