Just venting

debbiel0
debbiel0 Member Posts: 134 Member
in Head and Neck Cancer #1

Sorry to be a negative nelly, but I need a place to vent, with no judgement.

I am about 14 months post treatment for Scc HPV ( tonsil) . 4 months since feeding tube was removed. I lost 50 lbs at first. Another 20 after I started eating on my own. It is a stuggle to eat. Have to have water to wash down most things. My sense of smell was the main thing that encouraged me to eat. Everything smells soooo good! Taste isn't always what I remember it to be. Some foods are difficult, meat mostly. Never thought of myself as a vegetarian, but ... oh well!  I still have a lot of mucus first thing in the morning and have to pack a water bottle with me all day. 

I keep trying to have the mind set that after what I have been through, a few little things are ok.  As for weight gain. I have a little giggle. A lot of people have said that they werre advised to gain weight before treatment.  No one ever said that to me??? I know I was heavy but really  :)  I don't like the look of me now, I am too thin ( yes a woman has said the out loud) but the up side... my blood pressure is down. 

I have had my share of disappointments along the way. I have always prouded myself as being a person that you can count on, and my work ethic is second to none. Regardless, I lost my job as I was not reliable.... huge hit. So, dealing with the finacial aspect is another blow.  I am looking for a new job, but I am over 60 so it is not easy.

I have a lot to be thankful for. But no one tells you about the little things that can effect your mind. I am scard every time I get a sore throat or cough. The theory that after treatment can play with your mind is  very much my feelings.  

I was first told " we think it might be cancer" in March 2017. Had all the scans, xrays, biopsy's, PET scans, CT scans, MRI's , consults with ENT's , Rad Dr's, Chemo Dr's.. dentists, dental surgery, then 35 rad's and 2 chemo over 7 weeks, five extra weeks in hospital, then I came home ( all treatments were out of town). Follow up sessions with a dietician and speech therapist for 12 weeks. now I am on my own. Everyone has signed off on me. See my ENT every 4 months Rad Dr alternate 4 months.  

Am I crazy, or do we need some sort of transition treatment/therapy. Start to finish, it was 16 months of constant care, then one day ( after my tube was removed) nothing. I am on my own. No check in to make sure I am doing ok. No follow up from my nutritionist to make sure I am ok.  

I know our nurses/specialists are over worked and I appreciate every minute I have had with them!  I just wish I had some one to check in with to make sure I am cooping ok.  No one else I know has gone though this, so are my feelings -  normal? -  a warning sign ?  - or am I just over thinking things?

Life is good. My family is so supportive. My summer was filled with family, babies, boats and golf. Lots of sadness as well, my mom, brother in law, and a good friend did not get through this year on the good side. 

 

Thanks to you all for a safe place to be.

 

 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #2
    debbiel0

    You are right on 100%. The after and the before and the treatment are all things I can relate to. I wouldn't call it a vent you seem very composed and have a great handle on things and your situation. Praying for you that you continue to get better and that you get the job you want.

    You are right there is a void there after it is done and treatment is over there is this period of now what do I do?

    Suddenly you are on your own. No, check in to make sure you're doing ok. No, follow up from my nutritionist to make sure I am ok or anything else I tell you many of us have experienced this so please watch this video I will put 2 links it is about just what we are talking about here. One woman said that after her final appointment and driving home she just pulled over to the side of the road and cried as she was overcome with emotion at a time when she thought she would be glad.

    Please look at this video it is 17 minutes it is great for us cancer patients and it is lost in transition as we transition from patient to now you are done and they talk about how once treatment is done everybody thinks you are done with treatment, everything's ok now back to life as usual and it doesn't work for us cancer patients that way. And in this video, there are comments from the docs as to how this is not addressed properly.

    You can see the video Here---https://player.vimeo.com/video/15988236

    Or Here---https://www.youtube.com/watch?v=YhuqWM3dNAw

    God Bless and Good Luck-Russ

     

     

     

     

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #3
    Thanks. Very interesting.

    Thanks. Very interesting..would be nice to see this information spread. Sure made me feel better!

  • Abk
    Abk Member Posts: 11
    #4
    agreed

    I am 3 years out from breast cancer but can relate to the fears and the need for something transitional. I was offered 2 months pilates or some kind of hocus-pocus stuff but nothing helpful or real. I think an immediate support group of people who can just talk about the anxiety that comes with each doctor's visit or each scan might be helpful or maybe a partner to e-mail as an ongoing friendship might help.

  • SuzJ
    SuzJ Member Posts: 446 Member
    #5
    VCU

    Maybe it's because they are a teaching hospital?

    After treatment I went once a week, bloodwork every time, then, stepped down to once a month, then once every three months, with all 3 of my Drs, so ENT/June MedOnc/July, RadOnc/August and so on. 

    Now I am down to a visit with all every 4 to 6 months, but call immediately with concerns.

     

    My Primary Care is running blood once a month.

    That said, I am like you, I take care of others first, being helpless sucks. As per your job - you should have been covered by FMLA - or depending on your state, disability. Might want to fight them on that.

    I found that, it went like this, I got Cancer, I fought, I fought a lot, I made it to the other side, Now im "clear" but boy am I depressed. I have a bad case of "why me's" and "why not me" and... you name it, its in thefe.

    Here is a good place to vent, we are the few people who will actually understand. Unless you've walked a mile in our shoes, you have NO idea what it's like

     

    Oh and a cancer diagnosis, is a disability, might want to look into that.

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #6
    SuzJ said:

    VCU

    Maybe it's because they are a teaching hospital?

    After treatment I went once a week, bloodwork every time, then, stepped down to once a month, then once every three months, with all 3 of my Drs, so ENT/June MedOnc/July, RadOnc/August and so on. 

    Now I am down to a visit with all every 4 to 6 months, but call immediately with concerns.

     

    My Primary Care is running blood once a month.

    That said, I am like you, I take care of others first, being helpless sucks. As per your job - you should have been covered by FMLA - or depending on your state, disability. Might want to fight them on that.

    I found that, it went like this, I got Cancer, I fought, I fought a lot, I made it to the other side, Now im "clear" but boy am I depressed. I have a bad case of "why me's" and "why not me" and... you name it, its in thefe.

    Here is a good place to vent, we are the few people who will actually understand. Unless you've walked a mile in our shoes, you have NO idea what it's like

     

    Oh and a cancer diagnosis, is a disability, might want to look into that.

    Thanks to everyone for the

    Thanks to everyone for the support!  I am in Canada, so things are a bit different here. In British Columbia, the cancer agency is outstanding. They have been so wonderful. Arranged everything , treatment wise, with the best team ever!  I cant say enough about the incredible care they gave me. Thanks for the heads up on the disability aspect, that willl be worth investigating. There is a law here, that a person can not be let go while on medical leave. I could fight it...but do I want to go back to a potentially  uncomfortable enviroment? Is it worth it? When the bills come due..yes.. when I am enjoying visits with  my new grandson..not so much.  Something good is just around the corner, I am sure.

    I enjoyed a nice sunny day today, can ya tell ?  Everything looks better!

     

     

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #7
    Abk said:

    agreed

    I am 3 years out from breast cancer but can relate to the fears and the need for something transitional. I was offered 2 months pilates or some kind of hocus-pocus stuff but nothing helpful or real. I think an immediate support group of people who can just talk about the anxiety that comes with each doctor's visit or each scan might be helpful or maybe a partner to e-mail as an ongoing friendship might help.

    I agree. An email/text/old

    I agree. An email/text/old fashion penpal  buddy would be very helpful.  There are all sorts of breast and prostate cancer support groups in my area. Nothing for H&N..makes me think I might have to find a way to forgo a paying job and get something going.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    No follow-up??

    ....that seems strange. You DO need follow up....bloodwork, scans, ENT,  etc.  Make an appointment with your ENT, and let him be your “go-to“ Dr.  It was a weird feeling to be SO doctored for so long, then poof...set off to sail on your own....at first it was a relief going through a whole week with no Dr. appointments, but then I remember feeling “hey, remember me?  I’m the sick one”. 

    The fear...or in my case...absolute panic...when I’d get a sore throat, or something would pop up in my mouth...took a toll on me till I learned the one week rule....give it one week to resolve, before hitting the fear mode. I suffered horribly mentally....I went from a normally calm, easy going person to a neurotic, fearful mess....it was a snowball effect....and took three years. My Oncologist put me on an antidepressant/anti-anxiety med....10 days later I woke up as my old self...what a frigging relief!! Do not be afraid of meds...they can truly help get our old selves back.  Not being in a state of constant fear and riding waves of PTSD allows us the chance to not only see the positives in our lives, but to feel them also....to live them.  Trust that things will get better....because they do.

    p

     

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