Hello all

ERomanO
ERomanO Member Posts: 323 Member
edited June 2022 in Head and Neck Cancer #1

It was late Nov the last time I strolled through here, just after my 3 1/2 year checkup. Last month, on May 19 (my birthday), I had my 4 year checkup and all is well. I saw my ENT and as nurse practitioner on this visit, and I'll just see a couple nurse practitioners in Nov. I've been a little confused as to how long the 6 month interval visits go, but I guess it's one more year. Then I'll see my ENT or a NP once a year, starting in 2024, for another 5 years. I could stop going after this year, if I wanted, and I don't think any of them would argue that decision, but it can't hurt, so I'll continue.

As for continuing side effects, I still deal with a little dry mouth and neuropathy, but I've gotten used to dealing with each. I try to have some water handy anytime I eat dry foods, and I still use gabapentin to stave off the neuropathy, although I can often go through the better part of a day without taking any. I find that the best thing for dealing with neuropathy is staying busy (that way I just don't have time to focus on it) and my life has been super busy they last few years. That likely will not change for a while.

Blessings and best wishes to all as you go through life's post Tx journey, or for those of you that have recently joined this club that we'd rather not be a part of.

Comments

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #2
    https://csn.cancer.org/discussion/325279/hello-all

    Hi Ed,

    Glad to hear all is well with you. It will be 4 years for me on September 16, 2022. If you recall, we went thru treatment around the same time. All is well with me. Only issue I really have is some clicking sound in my right ear. It comes and goes. Actually, it was gone for about 6 months and then came back

    I used to go on this site daily before they changed the format. I do not like this new format at all. I find it very hard to follow everyone and for me it just gets frustrating trying to see what is going on with everyone. It seems like a lot of the folks are not participating as much as before. I find myself coming onto the site maybe every other month now because of the new format. What are your thoughts on this?

    My wife and I are on our first long motorhome trip since retiring. We are on the road for 5 months. We were one of thousands that got evacuated out of Yellowstone Park last week. We were not in any danger. Currently in West Yellowstone and going back into the park on Thursday to Fishing Bridge RV Campground.

    God Bless,

    Rick

  • ERomanO
    ERomanO Member Posts: 323 Member
    #3

    Hi Rick,

    Yes, I do remember our [almost] coinciding treatments, and I'm glad everything is going well for you. My neighbors bought a Coachman class B RV in 2020 and have been on the road a LOT. They were also in Yellowstone when the heavy rain began and left the park the day before the evacuation commenced. My girlfriend and I are going on a structured tour in Sept, with Yellowstone being the final destination. We're hoping that the southern loop will still be open for tourists at that time.

    I really don't mind the new format at all. I find that the comment box works better than the previous version. There are several music discussion forums that I browse regularly, and they have all undergone software changes. Those changes are more drastic than at this site and disliked by many. I also don't spend as much time here as I used to, but it isn't because of the software change. It's because I'm just so incredibly busy. I play guitar and work with a girl singer, and sometimes 1, 2 or 3 other musicians, and we are extremely busy play at wineries, pubs, country clubs and special private events. It's something I've done all my life and find myself play more now at age 66 than most of my life. Who knew?

    Be thankful that you have been spared many of the side effects that many face. I only have a couple (dry mouth and neuropathy), and they have just become part of my life. I don't even notice them for much of my day. Part of that reason is because I'm so busy. When I'm busy I don't notice those side effects. I suppose the dry mouth is the most noticeable, but it's easily remedied. I've never heard of a clicking noise from chemo, I'm assuming. I was told that hearing loss can occur, but that hasn't changed. The only hearing issue I have is tinnitus, but not from chemo. I've had that for 25 years now, and I also tend to not notice it most of the time.

    I probably should sign my name because my online ID is deceiving. My initials are, in fact, ERO, and my middle name is Roman, which is Ukrainian for Raymond (and yes, I spend hours each day keeping up on the war over there), but my first name is not Ed.

    All the best to you!

    Eugene

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #4

    Sorry Eugene. Don't no why I said Ed. Chemo brain most likely. As soon as you reminded me I knew my goof. I new your name was Eugene. Glad all is well and your doing your music. I have several campground reservations in Yellostone Park. Will be there until July 29. My wife and I do a lot of fly fishing.

    Rick

  • ERomanO
    ERomanO Member Posts: 323 Member
    #5

    No worries, Rick. I can’t remember the names of people I see somewhat regularly. Maybe it’s chemo brain. Maybe a combination of that and age 😉.

    On top of the side effects from rads and chemo, I’ve been dealing with eye issues in the last year - cataract surgery, which caused severe inflammation, which caused glaucoma, which caused vision loss in my right eye. After two surgeries to address the glaucoma, the eye pressure is finally under control. Now it’s a waiting game to see if I regain any vision in that eye. Fortunately the vision in my left eye is good, but having one bad eye messes with my depth perception and balance to a degree. Combine that with treatment side effects and life can be a little challenging. But I deal with it.

    My neighbor likes fly fishing, too. So you may have seen him out there 🙂.

    Eugene

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #6

    Well, I am glad you folks got through your treatment well and are enjoying busy lives, so good to hear. ERomano I hope your vision returns well in your eye and all is well. I have just gotten my first cataract done with the second one next week. I know you mentioned your eye situation before but you seemed to attribute your problem to the cataract in some way not an eye pressure issue. But so glad they got it resolved and hopefully full sight abilities returning soon. Rick glad to hear all is well with you also. As far as the new format on the site goes it was just something to get used to because it is layed out differently. It is all here and more and I feel now that I have gotten used to it I feel it is improved in a number of ways. Just move your pointer to the drop downs and click around the site and as you get familiar with the new layout you may like it. If you have any specific questions about the site post them and we can give you some answers and hopefully make things easier and good for all.

    Wishing You the Best

    Take Care God Bless-Russ

  • ERomanO
    ERomanO Member Posts: 323 Member
    #7

    Thank you, Russ!

    The issues in my right eye stemmed from a traumatic injury I had 27 years ago. Had I not had that injury I may not have had the cataract problem or the inflammation and glaucoma. But such is life, right? My doctor has been totally noncommittal when it comes to regaining my vision in my problem eye. But one of the technicians, after checking me in and doing a preliminary vision test, said in a very quiet voice "It'll come back". I said "What? My vision?" and she said yes. She could not say anything officially, because that can only come from my doctor. But I figured that she has seen many cases like mine and speaking from experience. I remain hopefully and cautiously optimistic.

    Eugene

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