HPV Status

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  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #22
    yensid683 said:

    to hpv or not to hpv.....
    I can understand the resentment that some could feel for those who's SCC is hpv+, as the common wisdom is that is is a more survivable version of this awful disease.

    I also understand that there can be resentment by those adversely effected or still deep in treatments when one of our family can trumpet their NED.

    I recall when, during the worst of my treatments, when I felt so terrible and thought that life would be a continual living hell, I read these threads and posts and heard so many people bring good news to these pages of their NED, of their recovery, their first forays into the world of eating real food and I felt jealous, but at the same time I felt that I couldn't wait to join them.

    Their stories, comments and the posts in reply gave me hope that I could beat this, that one day I too would be able to eat those foods that I so love, that I too would feel normal again, that I'd be able to hold my wife and we'd be able to plan on more days, weeks, months and years together.

    I'm making progress, I'm NED (just), but still dealing with saliva and swallowing issues, and eating real food is limited to a few items, but I look at it as "I'm EATING". I'm alive, I'm able to participate in life, I'm able to be with my family and my friends. I celebrated my NED with a vacation and I don't feel bad about it, I'm hoping that EVERYONE on these pages gets to do the same thing, yet I'm pragmatic enough to understand that not all of us will.

    Cancer is an absolutely horrible disease, it strikes people who don't deserve to face the trials and tribulations that it brings, but I'll celebrate every one of us who beats the beast, no matter how it happens or why.

    I pray for all of us, the new to these pages, those deep in treatments feeling so terrible (and their caregivers) and for those of us who're moving out into the sunshine again. Life is worth living, no matter how much of it we have

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  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #23
    Skiffin16 said:

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    My opinion....
    The last thing in business you want at upper management are "yes men" (these are poeople who agree with everything the CEO or those in charge say...and never play devils advocate).....I would imagine in terms of this site and our medical doctors we too don't want "yes men" ...in other words we want knowledge but we also want individual experiences.

    I always appreciate statistics, facts but I also very much appreciate individual experiences and especially those stories of "beating all the odds" ..the human spirit and will to live is an amazing thing. I use the stats and medical knowledge to be informed and try and get the most proactive /aggressive medical care I can....and if the news is bad or alarming then that old famous movie where the guys says "Dang the torpedos" is the attitude I try to take on .....

    I have no doubt everyone on this site cares for and is always concerned about each other ....and if I too ever say anything that hurts, discourages or offends....I hope I would be given the benefit of the doubt that was not my intention.

    I sometimes feel concerned about telling people I"m out cutting wood or hunting or feeling good bc someone just posted bad news on here or is in pain....it breaks my heart when my online family is hurting and it makes me happy when others are doing great ....I think often times I get upset or angry (maybe frustrated is a better word) bc I feel that hurt and helpless feelings.

    The news lately with Katie, KT TEacher, Barefoot Bob / Mike luv4lacross, Denis, Nick and so many others weighs on me daily (hope if I left someone out they know I care) ....but I think too my experience with cancer has led me to a new group of folks I can relate with. I never was sick hardly a day in my life until my dx. Flash back one year and I have had the cancer dx, emergency gallbladder removal, hernia surgery, the recent nodes in the lungs scan and ganulated glass that we will have to monitor closely (rescan in 6 weeks)...but I refuse to give up or give in. When I am down or concerned I not only turn to you all on this site (pm and public posts) but I also turn to my family and my God.

    I have a strong desire to not just go on with my life once recovered, now that i have seen the pain and suffering of such a group as H&N I want to help them......I can relate....I want to give back those who have helped me .....

    I truly hope to get the local thrift store going in the next year......I want to provide gas cards to those in our community who must make the long trip to Boise (100 miles away) 1 or 2 times a month ...I want to help with coordinating rides and doing other things with volunteers...our local community spends a ton of fund on McPaws (local animal shelter) which I don't begrudge and I am happy ...but I see a HUGE human need and though I love animals too .....I care for poeple more.

    We had a great amount of support (unsolicited) from family and even my co-workers and the ownership whom I work for....I want to pay it forward. :)

    Best,

    Tim
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #24
    hpv vph hpv vph
    Hey, I am HPV+, I took Erbitux and I am starting to eat (again, finally, never thought it would happen) and I want to talk about it. I also want my old voice back, my old neck and tongue (minus the cancer), my whiskers, but not the extra weight.

    I do not know any of you, but I recognize many of your writing and for the most part enjoy the diverse content of the posts. Some of the information is way over my head (thank you for Longtimesurvivor), but most I can figure out (to some degree). Many times when I read someone’s response to a post you can tell that person understands what is being asked and really nailed the answer.

    The only posts that really bug me are the advertisers that swoop in unannounced and push all the new threads down. As for HPV, let the controversy continue.

    Matt

    Erbitux is (can be) hard on Liver

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