STRAYING BEYOND CANCER ISSUES AND OVERSHARING

FOMC
FOMC Member Posts: 25 Member
in Head and Neck Cancer #1

Folks,

I just wanted to say that the majority of posts I've been reading here lately have gotten far away from the "normal" issues we discuss about having Cancer, before and after treatments, and how our recovery is coming along.

I'll use myself as an example by saying that for the last couple of months I've been packing on the pounds, not exercising as I should, had a cough and felt like I was getting the flu.. The reason you all haven't been privy to this is because these things have NOTHING to do with my Cancer or the after effects. 

It's not gonna help anyone coming on this page to read about a cold I'm having 3yrs and 10 months AFTER my battle.. Has nothing to do with their current situation and what they are/are not facing.

Keep fighting the battle,

Jerry 

 

Comments

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited October 2021 #2
    Aspiration pneumonia

    Hi Jerry,

    Dear, i the Reason I have had 5 ( five ) Aspiration Pneumonias since my cancer diagnosis, --- and never once had it before cancer, not once---- is because my Swallowing is severely damaged.... I am 109% dependent on tube feeding, and I aspirate because of that too. I surely had no need for tube feeding Before I had Head & neck cancer... And I didn't Aspirate directly into my lungs, as all of my swallow studies show that I do now.

    But.... If it makes you feel better, I will stop posting about my lung disease ..  I now have permanent damage from  aspirating, and they cannot fix it. All due to head & neck cancrr, 100%.  Swallowing and breathing are totally connected.

    I have had 5 recurrent tumors and a New Primary after radiation.  Again, if it makes you feel better, I can surely wait until my next cancer tumor recurrence to post here.  

    I'm having very bad chest pains tonight and am stopping here.

    Take care, Jerry.

     

    Crystal

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited October 2021 #3
    Well Sometimes

    We are not exactly sure if it is or isn't related to post-cancer effects so it may be put on here and it turns out it isn't exactly cancer-related but people are trying to share and support one another and provide information that may be helpful to someone now or in the future.
    I think people also want to use the site in a relaxed manner and just post and say hi and here's what's going on with me and how's everybody doing and happy Halloween.
    People get done with their treatment and are years out but this forum means a lot to them and they don't always want to stop here just to talk about the heavy subject of cancer.
    As far as I know, there are no hard and fast rules here on the forum for posting that it has to be strictly cancer-related.
    We're sorta like a family here in a mild sense of the word and as a family, you don't just talk about cancer.
    So my 2 cents is hey we're your extended family here if you have something to share feel free to do it.
    Wishing everyone good Blessings and a happy Halloween.

    Take Care-God Bless-Russ

     

     

  • wolfen
    wolfen Member Posts: 1,324 Member
    edited October 2021 #4
    Just My Opinion

    If a post's content upsets you, DON'T READ IT.

    The family of this forum helped save my sanity after losing my husband and daughter to cancer. I am forever grateful.

    And Happy Halloween back atcha, Russ

    Nuff said!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited October 2021 #5
    I kind of like hearing about

    I kind of like hearing about the non cancer stuff. Everyone on here is far more than a tumor recipient.  Some people fish, some garden, some sew, some cook even when they can't eat.  I wish people posted more but it's hard to post when you don't feel good.  

    Everything doesn't have to be doom and gloom all the time.  Hey it's the internet.  You take what you need and leave the rest.  Scroll baby!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited October 2021 #6
    Pages upon pages...

    Pages upon pages...

     

    Guilty as charged your honor!

     

    Mine was kind of long and contained a lot of unrelated info. I was trying to keep it all in one place because I never could figure out how to search for posts by one particular user and to me, doing that is a pain anyway.

     

    There is a UK HNC forum and one of the users did a blog.  His blog helped me tremendously and I think I handled things much better from reading his blog.  I let my post get too long but that was because I wanted it all in one place and I tried to document my treatment and hope I may have helped others. Some people did thank me for posting but I suppose I should have just put it on the about me page.

    I noticed not a lot of people post on the about me page though or on the forum.  

    But I am very thankful for all the people who do post here even if it's unrelated to my cancer-everyone is different.  People who post about what's going on-when I read their posts I kind of had an idea what to expect and I wasn't completely terrified when I went in for surgery and then chemo and radiation.  

    I am very grateful for the information I received from this and other HNC forums.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #7
    So, I got this message below
    So, I got this message below from my Pulmonary doctor, who is a Teaching Fellow ( I'm at a School of Medicine).

    I am being Admitted again, this is 3rd time since June..

     

    As to the subject here,.... I can say that someone like me, and some others here who have had cancer several times....or have Recurrent HNSCC ( and my surgeon wrote in his Notes after my 5th tumor, which was inoperable " She has malignant disease which is not curable")).------ and those of us, including Caregivers who have been through Metastatic terminal cancer with someone, to the very End------------ We Know quite a lot about this disease. A lot more than I ever wanted to. Think about it, me a Stage III and I just watched my Stage IV boyfriend die from it...

     

    There are others here who have had it Once. Maybe recently or many many years ago. ( when treatments were a little different). But here, they are lauded and looked to as if they know it all. Kind of strange but whatever...

     

    I have been through / am going through Recurrent HNSCC. One way or another, its gonna take me outta here. And I just went through years of it, with a man with Metastatic HNSCC, to his death, while simultaneously going through my own. I'm only 3 + years out.

     

    Hey, I can very very very easily delete my account here and check out. I don't need any more grief and strife and frankly utter BS, in my life.

    Going to the hospital in just a hit tor my infusion and as you can see below, I now have to pack my suitcase, because I'm also going back in as Admission for this new pneumonia. Read about this infection on CDC website. Its a killer and resistant to antibiotics. I gotta right back sonehow.

    I miss Randal. With him, I had such sweet and great support. Rest in peace, my brave warrior...

     

    This below from Dr. Meier:

     

    Hey I apologize for not being able to get in touch about this sooner! I've been on nights since last Wednesday in the ICU and haven't had a chance to address my inbasket messages. I can try to give you a call this evening once I get back to the ICU to see how you're doing and we can try to figure out how we can get you admitted without having to go through the ED (I'm not sure it's possible given how full the hospital is but I'll check into it).

     

     

     
  • Russell8
    Russell8 Member Posts: 7 Member
    edited October 2021 #8
    Bye going to find a support

    Bye going to find a support group online

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited October 2021 #9
    Thank you for the information

    Thank you for the information. I do appreciate it.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #10
    IKR?

    IKR?

  • donfoo
    donfoo Member Posts: 1,773 Member
    #11
    Wow, things have changed

    Hey guys!

    It's been awhile since visiting as my battle was over in 2013 but I check in from time to time and always happy to see familiar faces. I'm looking for Matt's how you doing annual list to check in but I came across this thread that startled me a bit as it had a tone which I never saw back in the day.

    What has changed? When I was fighting the beast, there was a singular reason we were brought together at CSN and that was to better understand this disease we or family or friends might have or did have and wanted to get information and share problems. Most of the conversion was pretty related to HNC medical treatment and side effects and such but there were many posts where people simply shared what they ate. Often times that was a big deal initially but even after time when patients began the journey to their new normal, many non cancer specific posts were found.

    Maybe I'm jumping into something I'm misreading or have no context but I do hope it is OK for folks like me to simply drop in and say hi and share something about life that offers patients in the jaws of the beast that offers some hope that life does get better.

    Well, no need to make my own post! I hope you all, new and old, just know there are so many good outcomes these days, take each day as it comes, one step at a time, and you will cross the finish line!

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #12
    Thanks for checking in

    donfoo, 

    I am glad you stopped by, haven't seen you for a spell. I hope you are well. You didn't really walk into anything major as the Discussion Board isn't a straight line on the road we take. It has curves, hills and valleys. 

    I read the posts here almost daily, but seldom reply since my journey is a bit outdated to what people go thru now. I had Surgery to remove the tumor on my tongue which involved removal of part of my tongue, radical neck disection followed by radiation. Chemo was the backup plan by my Surgeon and Radiation Oncologist. I did not have the Robotic Surgery like many get now. 

    I do like to read some of the other things people post here, like what Skiffin would do, talk about fishing, or some others about golf, jogging, woodworking. It gives everyone a goal to achieve, some normalcy, a target to reach. I remember some people made it their goal to run a Marathon and actually do it. Others returned to the mountains to ski. Not everyone returns to the normal they had before cancer, we hope we do, but may settle for the dreaded "New Normal" we often hear. 

    As Wolfen mentioned earlier, if something doesn't interest you, skip over it. I have done it in the past and will probably do so in the future. We are here to connect and offer helpful hints when asked. Some can't get out of the house after surgery and aren't able to express how they feel to none cancer patients, we have walked a similar path, so they can lean on us. 

    Be Well, My Best to You and Everyone Here

  • SuzJ
    SuzJ Member Posts: 446 Member
    edited October 2021 #13
    Kinda nuts

    We NEED to talk about everything. It's the talking about little stuff that you may not think means much, is what gets everyone answering. Either no, your imagining it, dont google it, ask your Dr, etc.

    This is a support group, we are here to SUPPORT one another. Not cut each other down.

    You all kept me sane, and answered all my dumb questions, with things my Dr hadn't thought to mention.

    Everyone, do not stop sharing, if I can help, I'll chime in.

    You are saving my sanity anyways :) I have my 29 y/o son on crutches, totally no weight bearing. He's been like this since August, and will be till Christmas. I AM A PRISONER!! :)

  • Logan51
    Logan51 Member Posts: 468 Member
    #14
    Ozy

    This site has a Chat room for non-C stuff like gardening and cooking, etc. You should check it out. That's where non-C things are discussed. I've been on the Forum for 11 years now, with a couple different names, and info helping others with advice and support from experience, and especially helping Newbies to the H&N C experience with their questions, is what this Forum used to be all about. You help others with the info and experience advice or suggestions. Typically, the Heading of the Thread would be about the issue One has. We've all been thru the same ringer to varying degrees with typical H&N tx, everybody is different, we all have or had our individual battles to fight with the help of our C Med team and longterm side-effects, and Jerry is right about what's on the Forum now is not as much like it used to be. 

    And Wolf- that's what I do, and why you don't see any posts by me on many threads.

  • Logan51
    Logan51 Member Posts: 468 Member
    #15
    agree

    Back in the day Skiffin used to talk about fishing, with pix about what he'd caught off the coast of Florida, for instance. Probably did so to show others what life was like for him, post-tx. He took over the Superthread from Sweetblood, and then Matt replaced Skiffin. Mostly, though, was questions and advice.

    Several people, later, would give a snapshot of their history with each post, and that can get annoying- as in "We get it. What's new?" That info is what your Profile page is for, rather than repeating more than the basics of your history, if you do, in a senetence in discussion. I can't remember any who had pages upon pages of their C tx ordeal- like they're the only one who went thru a 1st round with all the unpleasantries. I'm sure their intentions were good, but all our journeys are somewhat different with the difficulties. Was more updates and questions between '09-'13, along with lessons learned that might help others.

    But this is a H&N C Forum, so anything directly related to said and post-tx is definitely appropriate. For instance, I met with the GI Dr. today, post Dilation, then failed swallow test, to hear him tell me I'll be FT-dependent for life due to Rad damage to my esophagus. The lesson: be aware of photon tx and talk to your Onco team to prevent longterm side-effects like that, e.g.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #16
    Oh my god your poor son. 

    Oh my god your poor son.  That's got to be just breaking your heart.  I don't care how old they are I hate when my kids are hurting.

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