I'm Angry!!

Barbaraek
Barbaraek Member Posts: 626
edited December 2015 in Head and Neck Cancer #1

Ok, I usually don't get mad... but yesterday I was sooo angry. As some of you know my husband is a cancer doc himself and is now 3 months post tx. for SCC nasopharyngeal tumor. Like many of you has xerostomia - dry mouth - and so far produces close to zero saliva.

On top of all that he has been through this year, it was time to take his surgical re-certification Boards - a five hour exam administered in a standardized testing center. He has to recertify every 10 years, and wow, weren't we so lucky to have it fall on the year that he fought for his life.

Understandably they are very strict...no cell phones, backpacks etc. Having seen my kids take the SATs etc. I told him that sometimes they restrict water bottles..so his secretary called and was told, yes - you have to bring a doctor's note to have a water bottle.

So day of test: he has 2 forms of id, and a doctor's note and a clear plastic water bottle with no writing on it whatsoever...and they DIDN'T LET HIM BRING IT IN!!! Non-negotiable.

How are you supposed to concentrate on test questions when your mouth and throat feel like the mojave desert?

Ok - end of the story...I've calmed down (a bit) and he said they were able to take breaks every 90 minutes at which time he was able to get a drink from the water fountain. But honestly!

we now return you to your regularly scheduled non-ranting forum...

Barbara

 

 

Comments

  • swopoe
    swopoe Member Posts: 492
    Argh!

    I am frustrated for you! I hope he did great on the exam though!

  • the_wife
    the_wife Member Posts: 184
    Poor guy. I'd be mad, too!

    Poor guy. I'd be mad, too! Permission granted to rant. No doctor notes required! Sending hugs to you, Barbara!!!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    water please

    Barbara,

    Sorry for your husbands inconvenience,  there should have been a path to allowance.

    Shortly after treatment, during my major period of dry mouth, I was required to take a reconnaissance hike (on the Oregon coast) of about 5 miles.  Carrying my water bottle and popping some Xylemelt tablets in, I was very (amazingly) fine.

    They work for me and I am still drinking lots of water every day, at almost 4 years.

    Good luck,

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    CivilMatt said:

    water please

    Barbara,

    Sorry for your husbands inconvenience,  there should have been a path to allowance.

    Shortly after treatment, during my major period of dry mouth, I was required to take a reconnaissance hike (on the Oregon coast) of about 5 miles.  Carrying my water bottle and popping some Xylemelt tablets in, I was very (amazingly) fine.

    They work for me and I am still drinking lots of water every day, at almost 4 years.

    Good luck,

    Matt

    Matt, thanks

    the water bottle, laced with a tablespoon or two of aloe juice helps him a lot. The xylimelts - not too much as they cause nausea for him. We continue to try different products and he is enrolled in a study that simulates acupuncture to improve  xerostomia but so far 9/24 sessions in, no change. I'm still hoping time will yield improvement.

    Barbara

  • Hondo
    Hondo Member Posts: 6,636 Member
    There is always someone

    I know the feeling; I was on my way home from San Francisco but ended up having problems at the Airport Security there, I had letters from doctors about needing to carry water with me at all times and no drinking from public water fountain. But this one security guy was a real butt and would not let me through, I told him I been trading all over and not one of the other air ports gave me any problems once they read the letter for my doctor. All he said, if I want to get through it will be with no water. It was lucky for me there was a newspaper stand right after I went through that I could get a bottle of water. I just hope and pray that people like that never have to go through what we go through just trying to survive in a un-normal world.   

     

    Tim

  • wmc
    wmc Member Posts: 1,804
    I would be mad as hell

    Having water in a clear bottle sure can't have the answers on it. Now to make it even worse it was doctors, who should have some compasion and understanding what Cancer people go through. I think he handeled it way better than I could of, or would of. I would most likely been removed by security.

    Bill

  • the_wife
    the_wife Member Posts: 184
    wmc said:

    I would be mad as hell

    Having water in a clear bottle sure can't have the answers on it. Now to make it even worse it was doctors, who should have some compasion and understanding what Cancer people go through. I think he handeled it way better than I could of, or would of. I would most likely been removed by security.

    Bill

    Compassion

    The thing is, it's not only about compassion, it's about the law. Whatever happened to so-called ADA reasonable accomodations? Cancer is a disability. It's hard though, because you don't want to make waves when your job is at stake. Too bad we have to be the ones accomodating everyone else vs. the other way around. There are certain things an employer or we as a society must and should do for those who are disabled and yes, cancer survivors are covered under that category by law. It all looks good on paper, but then you have to almost be a lawyer to even know you have certain rights to begin with. Just like...they can't fire you if you have / had cancer. Ha! Been there, done that! They don't actually fire you, they just make it too miserable to work there....and so it goes.

    Oops, sorry got off track. I guess I have a little soapbox, too! 

     

  • Barbaraek
    Barbaraek Member Posts: 626
    the_wife said:

    Compassion

    The thing is, it's not only about compassion, it's about the law. Whatever happened to so-called ADA reasonable accomodations? Cancer is a disability. It's hard though, because you don't want to make waves when your job is at stake. Too bad we have to be the ones accomodating everyone else vs. the other way around. There are certain things an employer or we as a society must and should do for those who are disabled and yes, cancer survivors are covered under that category by law. It all looks good on paper, but then you have to almost be a lawyer to even know you have certain rights to begin with. Just like...they can't fire you if you have / had cancer. Ha! Been there, done that! They don't actually fire you, they just make it too miserable to work there....and so it goes.

    Oops, sorry got off track. I guess I have a little soapbox, too! 

     

    Evidently...

    the letter had to be submitted in advance and cleared by the testing institute. Just bringing a letter to the test facility is not adequate. Unfortunately, this isn't the information that was relayed to my husband's secretary when she inquired about accomodations. I guess next time we'll know better...but since he only needs to recertify every 10 years we will

    A) be so happy that he is still alive and kicking 10 years post, it won't matter...

    B) his salivary function will have improved enough so that it doesn't matter

    C) Both A & B

    D) he will have retired and won't need to take the test

    E) All of the above

     

    Couldn't resist a little humor!

    Barbara

  • MrsBD
    MrsBD Member Posts: 615 Member
    Barbara, I love your sense of

    Barbara, I love your sense of humor! It's too bad your husband had such unsympathetic testers. I've been pleasantly surprised by how accommodating some places have been. Recently at special exhibit at the art museum,  the security guard was disposing of all food and drink as visitors entered. When I explained my situation, he let me keep my water bottle. It would be nice for everyone to be like that, but as we've said before, people just have no idea what we deal with unless they've experienced it themselves. If nothing else, cancer teaches us to have empathy.

  • wmc
    wmc Member Posts: 1,804
    Barbaraek said:

    Evidently...

    the letter had to be submitted in advance and cleared by the testing institute. Just bringing a letter to the test facility is not adequate. Unfortunately, this isn't the information that was relayed to my husband's secretary when she inquired about accomodations. I guess next time we'll know better...but since he only needs to recertify every 10 years we will

    A) be so happy that he is still alive and kicking 10 years post, it won't matter...

    B) his salivary function will have improved enough so that it doesn't matter

    C) Both A & B

    D) he will have retired and won't need to take the test

    E) All of the above

     

    Couldn't resist a little humor!

    Barbara

    ...."F"....

     Option "F"    The ones administering the recertification will remove their head out of their colon, long enough to do the right thing, then they they may reinsert it back to it's happy resting place.

    Bill

  • the_wife
    the_wife Member Posts: 184
    Barbaraek said:

    Evidently...

    the letter had to be submitted in advance and cleared by the testing institute. Just bringing a letter to the test facility is not adequate. Unfortunately, this isn't the information that was relayed to my husband's secretary when she inquired about accomodations. I guess next time we'll know better...but since he only needs to recertify every 10 years we will

    A) be so happy that he is still alive and kicking 10 years post, it won't matter...

    B) his salivary function will have improved enough so that it doesn't matter

    C) Both A & B

    D) he will have retired and won't need to take the test

    E) All of the above

     

    Couldn't resist a little humor!

    Barbara

    E!

    E) All of the above!

  • jackflash22
    jackflash22 Member Posts: 524 Member
    CivilMatt said:

    water please

    Barbara,

    Sorry for your husbands inconvenience,  there should have been a path to allowance.

    Shortly after treatment, during my major period of dry mouth, I was required to take a reconnaissance hike (on the Oregon coast) of about 5 miles.  Carrying my water bottle and popping some Xylemelt tablets in, I was very (amazingly) fine.

    They work for me and I am still drinking lots of water every day, at almost 4 years.

    Good luck,

    Matt

    A question

    what is Xylemelt tablets, I get a dry mouth that makes it very difficult to swallow, do they make your mouth moist...

  • Barbaraek
    Barbaraek Member Posts: 626

    A question

    what is Xylemelt tablets, I get a dry mouth that makes it very difficult to swallow, do they make your mouth moist...

    Xylimelts

    are something you can get over the counter in Rite Aid or CVS. They are like a mint or candy with slow release of xylitol which is supposed to help with dry mouth. My niece is a dental hygienist and she sent some for us to try. It seems to be hit or miss - works for some individuals, but not all.

    Barbara

  • Flyfisherman
    Flyfisherman Member Posts: 23
    Barbara,  good for your

    Barbara,  good for your husband!  I finished surgery, chemo and radiation for base of the tounge cancer in June and I am DRY DRY!  I don't think I could go 15 minutes without water.  I almost always wake up every hour to 1 1/2 hours each night for water.  Kudos to him for getting through it!

     

    I hope that he did well!

     

    Best Wishes.