When reality hits

Chicklette
Chicklette Member Posts: 225
in Head and Neck Cancer #1

So, as I'm sitting here waiting while my husband gets his mask made, I saw the radiation machine and reality smacked my in the face and almost knocked me over. It's becoming more real.  Watching it on TV or reading other people's stories is not the same.  "This is stuff that happens to other people.  This stuff doesn't happen to us."  But the truth is, we are "other people" to everyome else in the world, so that statement actually is true in a way.  Seeing the machine first hand puts things in perspective. And being made to wait alone in the lobby for 45 minutes made me much more upset than it should have. Fighting back tears as I write this in public is embarrassing, really. I'm scared. I'm really truly scared.

Comments

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #2
    Let it out.  Be scared.

    Let it out.  Be scared.  Allow every feeling and then take a breath and another and tell yourself "We CAN do this. We ARE doing this."  This is scary.  Point blank.  It's cancer.  And that word terrifies the strongest of people.  I remember that feeling all too well.  I still feel it.  I will always feel it.  And you will too, but it will lessen and your life together takes over.  Have faith.  If you are a praying kind, then pray.  If not, talk to the Universe. Talk to us.  This is what the forum is for.  Enjoy the time you have togehter in the "old normal" and prepare for the "new normal".  Once it begins it really does go faster than you think.  Just take it day to day and if that is overwhelming then hour to hour.  It's not easy or fun but it is doable.  It is.  We are here for you.  Breathe...

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    getting started

    Chicklette,

    Surprise (I mean that in a good way).  You are crossing over the hump all good H&N members cross.  Reality is not fun, there is no going back and these are serious, life changing events.

    You will adapt and roll with the punches; you must as cancer (side effects) play with different rules. You will get some bad, but not all bad, for this you remain thankful.  Don’t dig in your heals unless it is to fight. Most of the adversity to hit will be manageable and all of us know what you are in for and have suggestions and hints to help you get by.

    For now you are in the getting smart phase and need to prepare for anything which comes your way.  Be prepared, stay nourished and hydrated, keep your team informed and before you know it you will be trying to decide what to do for the 4th of July or maybe Memorial Day.

    Matt

  • mapdan
    mapdan Member Posts: 33 Member
    #4
    Be strong for your husband

    So the journey begins. I was there as well. Scared and thought Holy cow this is happening to me. Guess what. 6 months ago I left that room for the last treatment. 35 of them to be exact. Today I am working full time and doing things with my kids. Granted there are some side effects I am dealing with but it will be over and your husband will go on with life with you at his side. Be there for him. It wont be fun but trust me there is a future. Listen to these kind folks on this site, they have been there and all know how you feel. Best of luck and I will pray for you guys. 

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #5
    You are totally rational and

    You are totally rational and human.  As the wife of a cancer survivor, I can relate to exactly what you are feeling.  The first time my husband went to get fit for his mouthpiece and mask, I went with him and sat in the waiting room and felt the same things you did.  A wonderful older gentleman talked to me the whole time and told me about his journey with radiation.  He spoke with such positivity and strength, that I couldn't help but to draw upon that.  I don't know if he knew what an angel he was to me that day. I never saw him again after that day, but I am assuming he came through just fine.  That was five years ago.  Radiation wasn't easy on my husband.  In fact, it was hell on earth, but he is still here on this earth enjoying food, his family, and life.  You'll get through this one day at a time.  God Bless.

  • Engelsa
    Engelsa Member Posts: 50
    edited April 2017 #6
    I understand

    I had the same type of feelings when my husband was getting prepared to begin treatment. These days of waiting to begin the fight were extremely stressful. Watching the man who is frequently "my rock" go through all of this took my breath away. Fear, complete and utter panic struck me. Terrible thoughts filled my head. What if this, what if that, etc.

    We are not at that "what if" juncture at this time. We are at the beginning of a battle. We will fight, provide support, and go at this as much is required. Think of David and Goliath, Jack and the bean stalk with the giant. Consider the frog who was choking the bird so he could not eat him.  

    We are going to get to the other side of this fight. We will not give up and tremble with fear. What we will do is adapt and overcome. 

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #7
    Fight this Fight

    This is a fight for your husbands life. Its not going to be an easy one. But in 3 months the sun will start shining, the mountains will look better than ever and the sky will be clear. I am speaking from having traveled this path about 6 months ago. The folks on this site are such a tremendous help. Just remember to pack on the protein and the water as often as your husband can. There were weeks I lost 10 lbs a week. The body is fighting so hard for your husband to win this battle and he will. Remember that he will be angry, scared and concerned about you as well. We say some things we probably should not have said through out this process. We are not angry with our care givers but just the disease process. So please take nothing personal as this process proceeds.  But soon the clouds will clear and the will become sunny. Sit back and hold on. You have this! Best Wishes.  

  • Clon
    Clon Member Posts: 20
    #8
    You have a tough role

    My wife and I are in the same fight you are in.  I was diagnosed on March 1st of head and neck SCC with unknown primary.  I got fitted for my mask last Thursday, before that I had outpatient surgery where my port was put in, 6 teeth were removed in preparation for radiation and several biopsies were taken. Each of these steps have made this fight more and more real for me, but I am resolved to take this on and beat it.  My wife is my caretaker. I think each of these procedures have been harder on her than they have been on me.  She has to sit back and watch all of this knowing there is nothing she can do to help.  Once treatment starts on May 1st (35 rads and 7 chemo) I will be tackling the eating, rinses, mucus and all the other charming side effects. As bad as these are, they wiull occupy me and give me some feeling that I have just a little bit of control over my body.  My wife on the other hand will watch me deteriorate and feel like she should do something to fix me, even though she knows she can't. As the caretaker you must accept help, talk it out and make sure you stay strong and healthy, you are going through this too. I don't want to go through all of this, but a big part of me is happy that I am on this end and not on the end of caretaker.  Reality is hitting us too, but like you, we will get through this and come out the other side whole.  

  • mapdan
    mapdan Member Posts: 33 Member
    #9
    Clon said:

    You have a tough role

    My wife and I are in the same fight you are in.  I was diagnosed on March 1st of head and neck SCC with unknown primary.  I got fitted for my mask last Thursday, before that I had outpatient surgery where my port was put in, 6 teeth were removed in preparation for radiation and several biopsies were taken. Each of these steps have made this fight more and more real for me, but I am resolved to take this on and beat it.  My wife is my caretaker. I think each of these procedures have been harder on her than they have been on me.  She has to sit back and watch all of this knowing there is nothing she can do to help.  Once treatment starts on May 1st (35 rads and 7 chemo) I will be tackling the eating, rinses, mucus and all the other charming side effects. As bad as these are, they wiull occupy me and give me some feeling that I have just a little bit of control over my body.  My wife on the other hand will watch me deteriorate and feel like she should do something to fix me, even though she knows she can't. As the caretaker you must accept help, talk it out and make sure you stay strong and healthy, you are going through this too. I don't want to go through all of this, but a big part of me is happy that I am on this end and not on the end of caretaker.  Reality is hitting us too, but like you, we will get through this and come out the other side whole.  

    Good Luck to you.

    I am 6 months out like Sprint Car Dude and I took the same treatment as you 35 rads and 7 chemo. I had HPV tonsil cancer. You can and will do this. Do this as a team and keep pushing. There will be some tough times, very tough times, I am not going to suger coat it. You will survive this. I am 6 months out sitting at my desk working full time. I map agriculture fields for a living and was out on an ATV all day yesterday mapping and enjoyed it very much to be working and living life. So set some goals and prepare for an adventure. Good luck and I will pray for you guys. 

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #10
    Clon said:

    You have a tough role

    My wife and I are in the same fight you are in.  I was diagnosed on March 1st of head and neck SCC with unknown primary.  I got fitted for my mask last Thursday, before that I had outpatient surgery where my port was put in, 6 teeth were removed in preparation for radiation and several biopsies were taken. Each of these steps have made this fight more and more real for me, but I am resolved to take this on and beat it.  My wife is my caretaker. I think each of these procedures have been harder on her than they have been on me.  She has to sit back and watch all of this knowing there is nothing she can do to help.  Once treatment starts on May 1st (35 rads and 7 chemo) I will be tackling the eating, rinses, mucus and all the other charming side effects. As bad as these are, they wiull occupy me and give me some feeling that I have just a little bit of control over my body.  My wife on the other hand will watch me deteriorate and feel like she should do something to fix me, even though she knows she can't. As the caretaker you must accept help, talk it out and make sure you stay strong and healthy, you are going through this too. I don't want to go through all of this, but a big part of me is happy that I am on this end and not on the end of caretaker.  Reality is hitting us too, but like you, we will get through this and come out the other side whole.  

    Wow. Sitting in my classroom

    Wow. Sitting in my classroom holding back tears... thank goodness it's nap time and my students can't see me.  You just hit the nail on the head.  As a caregiver you push your feelings of fear and fatigue and whatever else you feel.   I felt guilty for feeling tired or angry or completely scared out of my mind. But I was reminded by the wonderful people on this forum that I needed to take care of me too.  It's such a tough journey.  It's tough for the patients and also for the caregivers.  They go through physical and mental, we go through the emotional and mental aspects.  Maybe sometimes physical too...  But Clon, you just voiced what we, the caregivers feel.  It is more than humbling to watch my husband who is my rock, the healthy one, the more positive one of us :), fall apart. And fast.  All of a sudden I was shoved into a role that I wasn't prepared for and I needed to adjust immediately.  But there are really beautiful moments that came from this too.  I grew up even more.  My faith has increased ten fold,  I appreciate my life and the life I have with my husband more than I can ever put into words.  We have been blessed so many times in big and small ways.  Our kids showed us that they are mature young adults and have given us so many wonderful distractions over the past 7 weeks.  The best part is that we are loved and cared for by so many.  I joined this forum and this has been 100% my lifeline.  This has been the BEST therapy/healing group.   I know our road with this disease will be a part of our lives but I am praying that this will soon be a faint memory.  Being a caregiver is tough but it is also a experience that no one can EVER take away.  

  • Chicklette
    Chicklette Member Posts: 225
    #11
    Thank You

    I'm glad I started this thread and cannot thank everyone enough for validating  my feelings.  I am still scared, but I feel so much better after reading these wonderful replies.  We will get through this.  I am confident about that.  I was saying to a friend this morning that if my husband were feellong sick or was in pain, this treatment might not seem so difficult mentally.  But he feels great.  It sounds like an oxymoron, but he is healthier than ever and feels fantastic... other than having this cancer.  I know many are in the same boat (i.e. No symptoms other than a lump on the neck).  Just seems so hard knowing that in order to get better, he has to get so sick.  It kinda makes your head spin.  Thank you all for your support.

  • SuzJ
    SuzJ Member Posts: 446 Member
    #12
    Chicklette

    thats exacty how I felt, healthy, blood wotk numbers were the best ever.

    Its the great unseen

    If It wasnt't for my 3 rd head, I'd never have known 

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