Wednesday, May 4, 2011

A Memory I can Face Now

This will obviously take far more than one post.  At least this is a start.  We all would love to be able to heal the person we love.  In fact we try so very hard to help in every way we can.  Meanwhile...

Nothing is more frightening than finding out your husband has a form of cancer that has a very low recovery rate.  Especially without a stem cell transplant.

The next frightening event and a close to beating your chest in absolute fright wanting to scream out loud pain,  is  the treatment.  After going through all the treatments for such a long time, fighting along side your husband, laying by his side in his bed while chemo is dripping in and holding him because not only are you frightened, so is he.  He needs your strength.  After all this, just to have the next wave of dilemma's hit you.

Oh watch someone you love go through such intense pain and illness and you can do nothing.  You are powerless when all through the relationship you were the one able to put the band-aid on the boo-boo and make everything better.  All you can do is hold them closely and tell them you are there and love them so much and Thank-you for being brave for me, it must be so very hard.  

The mayhem of frightening crash carts come flying in. You find yourself cornered in one small corner of his room.   All you can do is peer on in sheer fright while all the hustle and bustle is happening.  He yells your name and wants your hand.  You cannot reach him.  You cannot interfere nor get through the mayhem because they have to do their work.  So all you can do is yell across the mayhem letting him know, "I'm here, I Love You, I am holding your hand, hang in there."  The pain this makes you feel, and you feel like you are failing as a wife.  The stabbing feeling in your heart grows deeper and you want nothing more than to collapse but can't.  Day in and day out, this is your life.

 Then after all this to be told after all the hope you had, nothing more can be done, you are going to die.  I say you because when they are actually saying it to your spouse, it is the same thing as saying it to you.  It is a sharp stabbing pain taking your very breath away, putting you on your knees and puts you into a limbo of shock and not knowing how to react.

You want to show incredible strength to that wonderful man who unfailingly was so strong through all the horrifying and painful treatments.  He went through each day with "I'm going to beat this for us honey."  So, you do not cry although every part of your body wants to scream and say, "O GOD no.  I don't want to lose him."  But he tried so hard, and it isn't his fault.  You don't want him to feel as if he failed you.

I really feel the need to address this topic.  I feel more comfortable talking about it now.  For those of you who have arrived at this post because you are dealing with a spouse who has cancer, please do not be disheartened.  All cancers are different.  Many individuals recover and can live happy lives for quite sometime before it comes back or may not come back.  Which is what I greatly hope for you.

The fighting puts your system in overload.  After all the major paperwork and fighting it took to get clearance for stem-cell transplant.  All that just wait to find a near impossible donor due to the protein not just DNA.  The match has to be matched by 10 protein markers.  For a good transplant your donor must have at least 8 of these protein markers before transplant is considered.  That my friends is incredibly rare and unusual to find  person who matches.  We knew he had a low chance at this, but we agreed to try.  So began our new life.  Our tragic and frightening life.

This is what can happen, hopefully it won't for you, but in case:
  • First you are called in and given options for a cancer with little options.  You try to be optimistic.
  • Next you meet with Social Workers and begin the process of adjusting and what will be needed.
  • Then you meet with the financial department.  If you don't have payment up front or guaranteed you have to fight tooth and nail like a momma bear to get treatment for your husband. 
  • You resign from your job to take on the care of your spouse, while still trying to maintain two households.  One in the town where you are receiving treatment, and your actual home town where you live.  
  • Not only are you learning to care for your husband and show all the strength you can muster, you are dealing with your own immune system issues.  This truly wipes a person out.  Physically and emotionally.  If you have family to help, excellent.   If not, watch yourself.  No one else will.
  • If you don't have family to help, get all the training, all the classes all the groups you can possibly get to.  Learn, and then learn more.  Engross yourself into learning all there is to know including how to read blood tests. 
    Corner nurses and say, "I would like to do this for my husband, would you show me."  If you come up against resistance, politely let the nurse know, "Either you can teach me through your expertise how to nurse my husband, or choose not to, but when you people are done and all is said, who has the responsibility of the remaining of his life?  I do.  You'll drop him in my lap and say, okay we're done." 
    Leave the room and let that nurse think about it.  Most oncology nurses quickly see what you are saying.  I learned how to care for my husband the way an RN can do.  This came in very handy.
The oncology floor you will be on, many many others are just as frightened as you.  Group where they are.  Eat in the waiting room with them.  Strike up conversations.  A tight group is formed and we each help each other as much as we can.  This is your greatest support group ever, for they do know.  We cry when one of our spouses pass, we cheer when tests results come back clear, we pray when chemo has put our spouses in a state of danger and possibly dying.  We hold each other when they show back up because of complications. We learn from each other.  This will be your new and closest family even though you have family.

Enough heaviness for this post.  More will come along.  I feel its important to know that many of us understand the pain.  A long lasting pain.  Actions can be taken to help you through this, but sometimes, it doesn't work for us the way we want.

I hope I can share enough information to help you through your time.

1 comment:

  1. OMG! I am so inspired by this. Keep it up. Inside information from an insider is so valuable. I wish I had known about resources like your blog while Gwen was going through treatment. The caveats you give in your last two paragraphs are so timely.


Welcome to "A Widows Perspective."
Please come in and make yourself at home. Your comments are appreciated.