Newly DX - Caregiver

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

Hello All,

     My husband, DH, was recently dx with SCC/hpv.  He had a biopsy Thursday and results today confirm what the doctor thought.  His tumor is large, 4.7cmx4.5cm.4.2cm - about the size of a golf ball they said. There is also one lymph node involved. It is hard for him to swallow and difficult to understand him.  He is being treated at Johns Hopkins as we are only about 35 minutes away.  He has a pretty good attitude about the whole thing, trying to mix in humor.  Calling it an extreme diet and when I ask him to do something (take out the trash, he'll laugh and say "no, I have cancer, you do it"  then laughs a bit more and says he's going to be playing that card a lot.  I worry a bit that he isn't taking it seriously but, I guess it will get serious quickly enough. We have two children, a daughter in High School and a son who just started college.  We've not said the "C" word to them yet but I'm pretty sure our son has figured it out. I understand my DH will be going through 7 weeks of radiation and chemo at the same time.  I guess that's the standard protocol.  

     Not exactly sure what we should be doing at this point.  Just waiting to go in and meet the oncology team, PET scan and mask fittiing. I went out and bought a recliner on Sunday - we get it on Wednesday - as I've read it is very helpful for sleeping during treatment and recovery.  Wish I could do something of substance...

 

Melissa

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2017 #2
    Welcome

    Melissa,

    Welcome to the H&N forum, sorry that you are here, but just knowing you bought a recliner moves you up on my list.

    You may lack knowledge currently, but you will learn fast and learn a lot (we all did).  Everyone has a beginning, you are there now.

    Some recommend taking lots of notes, taking someone with you, asking questions.

    Always, be prepared. Have all items recommended by your team (mainly meds), but there are others.

    Start drinking water and swallowing, it is easy to do and can be critical.

    Don’t worry about the humor; it often helps more than it hurts.  If he jokes with them too much, they will just turn up the juice (kidding).  He will be serious, I can almost guarantee.

    Now, today and tomorrow, enjoy yourself, eat  out, tell the kids (it is hard to keep secret), try and relax, you will be on autopilot soon.

    Matt

  • pmsakom
    pmsakom Member Posts: 25
    #3
    Thank you Matt!

    Thank you Matt!

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #4
    Just Rest

    You are about to get bombarded with an incredible amount of information in a very short time. I am in the health care field and was getting lost with the over load. The best thing is to just support his decisions and remember we get a little grumpy from time to time. Its pretty overwhelming for us patients too. If he is capable, now is the time to start putting on weight like a champ. Good Luck.

  • soonermom
    soonermom Member Posts: 155
    #5
    Caregivers

    I found it helpful to write down everything.  We were both overwhelmed and often needed to refer to the notes.  

  • SuzJ
    SuzJ Member Posts: 446 Member
    #6
    He sounds

    Like he has a wonderful attitude :)

     

    Its a huge learning curve, take it one day at a time.

     

    Sounds like hes trying to protect you with humour:)

  • rsp
    rsp Member Posts: 103 Member
    edited September 2017 #7
    Neighbors?

    My husband was diagnosed almost a year ago with SSC/hpv.  He was also treated at Hopkins, and we live about 30 min. outside the city.  If there is ANYTHING you would like to ask, please feel free to PM me.

    My husband does not get on this site, but I found it to be my saving grace throughout the last year.  I have gotten so much wonderful information, and I feel like I have made many friends.  If you go back and read the old posts, you will learn a lot.

    Get ready for a long journey.  I agree with soonermom...Get a notebook and write down EVERYTHING!  Every appointment, what was said, weight, blood pressure, any changes, etc.  I also used another notebook to keep track of medication.  I would sit down every Sunday and write down a medication schedule for the following week.  My husband would keep track by checking the meds off as he took them.  

    Your husband is really going to need you.  Having support is so important.  My husband gave up driving after the first week, and I drove him everywhere for the next 6 months. 

    So glad you found this site.  You will learn so much here.

    Again, please send me a private message if you would like to ask me anything about our journey. (We also have two children :))

    **Great move getting a recliner; my husband slept in our recliner for months.

    Renae

     

     

  • Sinus2016
    Sinus2016 Member Posts: 36
    #8
    Humor is good

    Humor is a great release and drives a positive attitude, as long has he joking see it as a good sign. 

    Regarding your kids, I found it important to tell my kids, be transparent as all of you will need to support each other. Beside you may be amazed how well your kids come together and strengthen the family bonds.

    Wish you the best and would like to join the cheerleader team!

  • Sinus2016
    Sinus2016 Member Posts: 36
    #9
    Oops

    Goofed by hitting submit twice

  • mskitty137
    mskitty137 Member Posts: 73
    #10
    Hi, so sorry that you've had

    Hi, so sorry that you've had to join this group. But, you will find a tremendous amount of support and guidance here. My advice, from one caregiver to another, is make sure you have someone to support you. There will be times that you will need to vent and that someone can't always  be your husband. Vent here, vent to a friend,  vent to a therapist. Just don't bottle it up.

    Lots of hugs! 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    I swear....the hurry up and wait part at the beginning

    drove me crazy.  Like you, I wanted to DO something....something more inventive than getting a good recliner (which I did :) ), and buy Ensure and Aquafor (which I also did).  This is the time for him to eat all he wants, rest as much as he wants....and make all the jokes he wants.  His attitude is GOOD, and attitude is half the battle.  

    p

  • Klingels
    Klingels Member Posts: 78
    #12
    Advice

    I agree with the other posts. Enjoy this time before treatment with family and friends. Hopefully, he can enjoy some favorite foods. 

    Tell your kids. My kids are the same age. They were invaluable as help when he needed extra care and to share with the driving. My husband stopped drivng the second week of treatment, and just started driving last week. That makes a total of about 3 and a half months.

    I had a calendar for all of his appointments. I also kept notes on medications and side effects. I wrote down potential questions for his health care team. I was his voice for many weeks as it hurt his throat to speak.

  • pmsakom
    pmsakom Member Posts: 25
    #13
    phrannie51 said:

    I swear....the hurry up and wait part at the beginning

    drove me crazy.  Like you, I wanted to DO something....something more inventive than getting a good recliner (which I did :) ), and buy Ensure and Aquafor (which I also did).  This is the time for him to eat all he wants, rest as much as he wants....and make all the jokes he wants.  His attitude is GOOD, and attitude is half the battle.  

    p

    Thank you Phrannies!  I do

    Thank you Phrannies!  I do feel like I should be doing something.

    Melissa

  • pmsakom
    pmsakom Member Posts: 25
    #14
    mskitty137 said:

    Hi, so sorry that you've had

    Hi, so sorry that you've had to join this group. But, you will find a tremendous amount of support and guidance here. My advice, from one caregiver to another, is make sure you have someone to support you. There will be times that you will need to vent and that someone can't always  be your husband. Vent here, vent to a friend,  vent to a therapist. Just don't bottle it up.

    Lots of hugs! 

    Thank you Ms. Kitty.  This

    Thank you Ms. Kitty.  This board has so much information it is so helpful!  I just know that when I have questions I will get an answer.  Yes, I have a small group of friends who are like sisters and they will be my rocks as I am for my DH.  

    Melissa

  • pmsakom
    pmsakom Member Posts: 25
    #15
    Sinus2016 said:

    Humor is good

    Humor is a great release and drives a positive attitude, as long has he joking see it as a good sign. 

    Regarding your kids, I found it important to tell my kids, be transparent as all of you will need to support each other. Beside you may be amazed how well your kids come together and strengthen the family bonds.

    Wish you the best and would like to join the cheerleader team!

    yes, humor IS good - part of

    yes, humor IS good - part of the reason I married him was his sense of humor.  Our son is coming home from college this weekend and I am hopeful that my husband will tell them then.  I am not pushing him as it is his battle but I thin, as many of you sugges, they will step up to the plate and be very supportive.  

    Thank you!

    Melissa

     

  • pmsakom
    pmsakom Member Posts: 25
    #16
    rsp said:

    Neighbors?

    My husband was diagnosed almost a year ago with SSC/hpv.  He was also treated at Hopkins, and we live about 30 min. outside the city.  If there is ANYTHING you would like to ask, please feel free to PM me.

    My husband does not get on this site, but I found it to be my saving grace throughout the last year.  I have gotten so much wonderful information, and I feel like I have made many friends.  If you go back and read the old posts, you will learn a lot.

    Get ready for a long journey.  I agree with soonermom...Get a notebook and write down EVERYTHING!  Every appointment, what was said, weight, blood pressure, any changes, etc.  I also used another notebook to keep track of medication.  I would sit down every Sunday and write down a medication schedule for the following week.  My husband would keep track by checking the meds off as he took them.  

    Your husband is really going to need you.  Having support is so important.  My husband gave up driving after the first week, and I drove him everywhere for the next 6 months. 

    So glad you found this site.  You will learn so much here.

    Again, please send me a private message if you would like to ask me anything about our journey. (We also have two children :))

    **Great move getting a recliner; my husband slept in our recliner for months.

    Renae

     

     

    Hi Renae, Amazing coincidence

    Hi Renae, Amazing coincidence.  I am sure I will pick your brain a lot in PMs....once I figure that out, lol. Like your husband, mine won't get on here.  He doesn't want to know anything more than what the doctor tells him.  But he trusts that I am learning it all so we're prepared.  

    I knew to take notes but hadn't thought of weight and BP Or meds.  we expect to meet the oncology team tomorrow - DH's case is being presented today.  Wish us luck. 

    Melissa

  • pmsakom
    pmsakom Member Posts: 25
    edited September 2017 #17
    SuzJ said:

    He sounds

    Like he has a wonderful attitude :)

     

    Its a huge learning curve, take it one day at a time.

     

    Sounds like hes trying to protect you with humour:)

    Thank you SuzJ!  Yes, the

    Thank you SuzJ!  Yes, the learning curve is crazy!  So much to know, I just want to be as prepared as possible.  

    One day at a time, yes...

  • pmsakom
    pmsakom Member Posts: 25
    #18
    soonermom said:

    Caregivers

    I found it helpful to write down everything.  We were both overwhelmed and often needed to refer to the notes.  

    Thank you.  Yes, we feel so

    Thank you.  Yes, we feel so ill prepared.  The doctors ask if we have any questions and we feel like we should have these thoughtful questions on the tip of our tongues but they aren't there.  I think it just all happened so fast-getting into Hopkin, not the mass.  I'm sure we will get 'better' at this.  

  • pmsakom
    pmsakom Member Posts: 25
    #19
    Sprint Car Dude said:

    Just Rest

    You are about to get bombarded with an incredible amount of information in a very short time. I am in the health care field and was getting lost with the over load. The best thing is to just support his decisions and remember we get a little grumpy from time to time. Its pretty overwhelming for us patients too. If he is capable, now is the time to start putting on weight like a champ. Good Luck.

    Thank you SCD!  So far any

    Thank you SCD!  So far any information has been gleaned by me searching on the internet.  I'm sure that will change in a few days.  For now, we are just continuing on like normal.  Fingers crossed!

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