HPV+ tonsil cancer

Teresa00 Member Posts: 2 Member

I was diagnosed with HPV+ tonsil cancer, which also involved two lymph nodes, in October. I finished chemo (Cisplatin) and radiation treatments in January. I had Pet scan in April which showed NED. Having cancer made me feel so alone, and isolated from everyone else around me. I came here to find other people who have been through the same situation. It makes me feel better to know that I'm not alone. It has been rough going through the brutal treatments, and fear of "it" coming back. Now, I'm trying to eat again, which hasn't been easy. I still have peg tube. I can't wait to get it removed. I believe I could eat more if food wasn't so disgusting. I feel like life will never be the same again. I'm still dealing with weakness, fatigue, and neuropathy but definitely better than I was. I just want my taste and saliva back. I know everyone is different, and it will take time. I just miss my old life. Would love to hear how long it took for others to get their taste back. It gives me hope.


  • wbcgaruss
    wbcgaruss Member Posts: 1,975 Member

    Hello, Teresa, and welcome to the CSN H&N discussion board. I will try to address the things you are wondering about and help in some small way I hope to let you know you will be a cancer Surthriver, not just a survivor. First of all, cancer does isolate you to some extent for a variety of reasons. People seem to stay away from you when you have cancer but your true friends are still there. I understand all that, before I got cancer myself I didn't know how to react to it properly. So if you have any friends that were a bit absent and they are starting to see you again just forgive them and welcome them back. Cancer is tough for us to deal with for us that have it and for others around us also. Even so, we feel isolated because of the treatment schedule we are on and then later we don't really feel up to socializing when the effects of treatment settle in.

    You are correct it is rough-going, brutal treatment, and with the fear of cancer coming back you are feeling the exact same thing that all of us went through.

    As far as eating again, it will come but it takes time. Eat small amounts as much as you can. Some people say go out to a smorgasbord or restaurant that lets you pick from many different foods and try small amounts to see which you like best for now. Your taste is apparently not back properly and makes things taste odd.

    You may not be exactly the same again but hopefully very close to it. There are many on here who have varying degrees of getting back such things as taste and saliva. Some have gotten a lot back others not as much. It depends on the individual, their cancer location and size and the treatment strength they had, and such things as to where the radiation fields were applied.

    You will be dealing with weakness and fatigue probably for a bit yet but you will continue to improve and you will get your energy and strength back. Remember you went through probably the worst cancer treatment, they say treatment for head and neck is the worst and hardest on people and it also affects so many things vital to us in one area such as swallowing, breathing, saliva, etc.

    So you are only 4 months out of treatment. Keep in mind that recovery from H&N cancer treatment is measured in weeks and months and many do not feel they are fully recovered till they hit the one-year mark or a little longer sometimes. My estimate of recovery from the treatment based on my experience and what I have read is 8 months to a year just so you have a time frame. Also, keep in mind each case is individual so some recover quicker and some take longer. In my case, I remember my radiation nurse telling me before treatment started that I might as well consider a year of my life dealing with this till I get through treatment and recovery and get to the point of feeling recovered. And she knew cases from dealing with them and she was right on in her assessment for me it was a year for treatment and recovery. But you will get there just be patient and go through each day.

    I probably had a feeding tube for 5 months, again it varies by each individual. Some have them for less time some much longer. The important thing is that it is your helper, friend, and lifesaver for now and can be easily removed when not needed. Do not have it removed till you are ready. My care team would not remove mine till I could maintain my weight for two weeks by eating alone.

    I have neuropathy also from the chemo. There again it is a matter of time to see how much you end up with down the road but it's still early. My treatment was in 2013 so what I have of after effects and leftovers from treatment are at the levels where they are and will not change.

    I know you want your taste, saliva, and your old life back and you will get back to your mostly old life but I think you will find like many of us that it isn't quite exactly the same. I always say if you go through H&N cancer treatment nobody gets off scot-free. You may not get 100% of your saliva back, or the neuropathy may not go completely away, or some other little thing may affect you and we just adapt to dealing with it and call it our New Normal. This is not so bad considering the alternatives of not treating your cancer.

    They treated your cancer and got rid of it. Just find comfort and strength in that and don't think about or fear getting cancer again. Before you got cancer you probably didn't think about it so don't give it any of your time post-treatment, move forward, think positive, thank God, and enjoy life.

    Our motto here is NEGU (Never Ever Give Up)

    I will post a video below to help you. It is of real people just like you and me talking about their experience and they speak from the hearty and since you went through treatment you will relate to much of what they say.

    Wishing You the Best

    Take Care, God Bless-Russ

    Video-Lost In Transition

  • Teresa00
    Teresa00 Member Posts: 2 Member

    Thank you, Russ, for the encouragement and support.

    God bless