Support for Caregivers of Head and Neck Cancer Patient

paff
paff Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
My husband was diagnosed with oropharyngeal cancer in August. He underwent a neck dissection in September and finished 35 radiation treatments and 7 chemo treatments one month ago today. He had a PEG tube put in and is still using it. He hasn't had any food, and VERY LITTLE fluids, by mouth in about 9 weeks. His throat is still extremely sore. It has been a terrible ordeal for him. And, naturally, it's been very stressful on me as well. I'd like to know if there are any support groups out there for the caregivers of cancer patients. Sometimes, I just feel like I need someone to talk to who can relate to my situation. Thanks.

Comments

  • be4man
    be4man Member Posts: 18
    #2
    Welcome paff! I'm fairly new to this forum but already feel comfortable here. I hope you will too. As far as specific support for caregivers, I'm not sure but there are several here and not just patient's.
    Before I was diagnosed this past summer, I have taken care of my husband with heart disease for over 15 years. He's had open heart, aorta femoral bypass, carotid clean out and 17 stints from heart to renal. We've spent a lot of time in a hospital through the years. I used to say I'd rather be the patient than the caregiver due to the stress, emotional pain and fear. Now that I have experienced the other side I take it back. I can only imagine the frustration and the uncertainty of trying to help a loved one with this miserable cancer and more miserable treatment. I will tell you that if it weren't for my sister's dedication and my husbands love even though he has no clue of how to help, I would not be writing this today.
    I hope you'll feel free to get " it" off your chest here. Help and understanding are essential to your well being. You need only to ask.
    You have to take care of you first to be effective for him.
    Barbara
  • BugHunter
    BugHunter Member Posts: 152
    #3
    http://www.acscsn.org/Forum/Discussion/thread/view?msgid=144564&msgrid=14

    I found this in the disscussion forum here, hope it helps ya! And even though most in here are survivors, PLEASE feel free to lean on us for help and support as we all know how dang important a good caregiver truely is!

    BILL
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    It may seem rough right now, but your husband will pull through this, paff, with your help. Re support for yourself as a caregiver, you might look into the chatroom on this site. It is open to survivors AND caregivers, and there is a consensus there that caregivers are veritable saints.

    You will find, once you get used to it (if you have not been in a chatroom before...and I had not) that the people are friendly, informative, and compassionate.

    If you decide to go there, you may be surprised to discover that the talk is not all about cancer. It is, in fact, apt to be about life.

    As a head and neck cancer survivor (half of tongue replaced, radical neck dissection, same number of rads and chemo as your hub) I find the room a great place to be with people who understand what you are going through.

    Best wishes to you and your husband!

    Take care.
  • cuzzy
    cuzzy Member Posts: 15
    #5
    I'm the patient rather than the caregiver. That role has fallen to my husband, who retired two years ago only to find himself caring for an invalid wife. Our entire lives have been wrapped up in doctor appts, tests, etc. since my surgery in May...and although radiation was finished 5 months ago, I'm still not well...can't eat properly, have issues with lymphedema, am exhausted most of the time. He has been so patient, but I know it's really hard for him...this wasn't the retirement he'd thought he'd have...nor did I. It's also really difficult to go to a cancer support group since this type of cancer is so different from cancers in other parts of the body...it carries a whole set of issues that other caretakers don't face...I don't know what to tell you since my husband has noone that he can talk to, but wanted you to know that as a caregiver, you're not alone. (I had a radical neck dissection and radiation, after having had two tongue surgeries a few years back)
  • MLC53
    MLC53 Member Posts: 109
    #6
    There is another cancer support site with lots of forums. http://www.oralcancerfoundation.org

    You can sign up there and then go to the Caregiver / Co-Survivor Forum to get caregiver support. You will see forums for all other issues of oral cancer as well. Good luck!
  • Deb333
    Deb333 Member Posts: 6
    #7
    Hello Paff - I am a care giver also for my husband who had cancer of the thyroid and trachea (very rare). He had major surgery in Nov. 2006 and 6 weeks of radiation treatments. It has been a terrible ordeal for him also and I am VERY stressed out all the time about this. I can relate to your situation and I need someone to talk to also. He also had a PEG tube in and a very sore throat.
    Feel free to contact me. Maybe we can help each other.

    Thanks
  • cereeed42
    cereeed42 Member Posts: 1
    #8
    Wow I am so glad to find this web site. I have been needing someone to to talk for support. My husband was diagnosed with maxillary sinus cancer in Aug. 07. He has been through 3 surgeries and 7 weeks of radiation. He is getting ready to have his 4th surgery next week to try to reconstruct his eye socket and tear duct. He had to have all his teeth pulled. I have gotten no help from his older adult daughters. I had to take intermitant FMLA to take him to his treatments and take care of him. I missed so much work and gave up alot to take care of him. I would do it again in a minute. He is my heart rock and soul. I love him with all my heart. I have been there and stayed right by him in the hospital. However where does the support from me come from. I don't eat certain foods in front of him cause he has no teeth and I don't go no where cause he won't go out in public cause his nose runs constantly and he has no feeling under his nose. His eye runs constantly and he has constant pain. Am I being selfish for wanting sometime to myself. I used to go to bingo before this happen. I am wanting to have 1 evening to myself a month. Please let me know if that is being selfish. I am so confused and don't know what tomorrow brings. By the way he has a PET scan scheduled next month. We are all new to this so any support we can get we would love to have. Thank you!

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