I am new to this support group but just felt like I needed to express myself.  I met my husband when I was 16 years old.  When I was 18 we married and after 55 great years I lost him.  I'm not sure how to go one without him.  He passed away on January 14 of this year which was also his 76 birthday.  For about the last 14 years he had some very major health issues.  He had a triple bypass, lobe of lung removed because of lung cancer, multiple myeloma and gall bladder removed.  He bounced back from all of this.  His lung cancer was gone, his multiple myeloma was in remission and then he came down with another cancer.  In Sept 2015 he was diagnosed with anal cancer. 

We talked with several Doctors and they said this cancer was very treatable.  We decided to go with the protocol for this cancer.  The treatment would be 6 weeks of Radiation with a week of chemo at the beginning of the Radiation cycle and a week of chemo at the end.  The chemo was a very aggressive chemo and he was admitted to the hospital on 12/21 to start a 5 day 24 hour drip of chemo and radiation at the same time.  Since his chemo was done on Christmas Day he wanted to go home.  He was so sick over the weekend that I ended up taking him to the ER the following Mon.  He should never have been allowed to go home.

He had developed three different infections....Pseudomonas, cellulitis and then septic shock.  When I would come in to see him he would get big tears in his eyes and would say " please let me go- I want to go see mom".  At this point he had 8 different specialist working on him.  He was so confused and so tired and in so much pain.  Two of his doctor's said that if he was their father he would let him go.  However, another doctor wanted to continue treating him.

My thought was that he wasn't looking at the whole picture.  He still had this last cancer to deal with and he was not healthy enough to go through that protocol again.

We called Hospice and they said he was eligible to be placed in hospice. We made that decision and he was completely at peace with it.  Four days after being placed in Hospice he was gone. Now I'm thinking that I should have tried to talk him into fighting a little longer.

I miss him so much.  I'm trying to get on with my life but most days I can't stop crying.  Just would like some thoughts on how to deal with the guilt.

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Comment by Marsha on May 19, 2016 at 8:24pm

Morgan,  I am still trying to learn how to navigate this group so I'm not sure how to respond to you.  I hope this does it.    I appreciate your kind words.  I can't imagine feeling like this three years from now.  You must have had a terrible time.  I am feeling just like you stated....I have to move forward and find myself doing things that are way out of my comfort zone.  Things that my husband took care of and I just took for granted.  At times I have felt like a little kid having a temper tantrum.  I want to scream, cry, and stomp my feet for my husband to come home.

Thanks for the support.

Comment by morgan on May 19, 2016 at 3:41pm

Marsha,

So so sorry……It's good that you found us here but not good that you had to.  No one wants to join this kind of site but I believe you are going to need us for your support.

You are very early in your sorrow and guilt is one of the first things that shows up. Having to second guess the "what could I have done differently"  to escape the questioning of "why did it happen now" only compounds the emotional void of "where did he go"?  Nothing prepares us to answer any of these questions.  Questions will become your new best friend. Answers will be elusive. Crying will be standard and often.  

 

Your brain has been hard wired so when you flipped the switch it turned on the light.  Your husband was the light.   All the other times when the switch was quirky the light still flickered.  Now you flip the switch and there is no light.  Your brain (the switch) doesn't know what to do about it.  No light.   What now?

 

Well, now you are going to need us as your candles.  We cannot provide the same amount of lumen but we will be here for you.  We all use each other to light our way.  Some of us have been through the early dark areas.  We know how you are feeling right now.  Confused, lost, probably without matches.  But we have some of those too we share.  

Some of us have extra candles at times too.  Like right now I can share a bigger candle with you.  My path is better lit at this very moment since I have been dealing with rewiring my switch for three years.  But I won't kid you, this is the hardest thing I have ever done and my candle is out a lot. And I don't like it.  Not one damn bit.  But……...

But I am still living and breathing.  And I am coming more and more convinced that we have no control over our lives.  We think we do.  We think we are making decisions and steering our way through this journey but I am not so sure.  My brain conked out big time when my husband died and my switch was major hard wired.  I still can't flip the switch and get much light.  I just have become more accustomed to the dark.  But that is what is so hard.

 

I have said in the past that when my husband died what happened to me was I lost both arms, both legs, went blind and then someone told me I had to go to the supermarket.  This is no exaggeration.  I was dumbfounded.  I was with my husband 35 years and knew him for 55 (long story).  But because I am left behind I am left to reconstruct with what I can muster.  

I have spent hours and hours online trying to get answers.  I keep thinking I am going to read something that will help.  And actually it does.  But the answers are not concrete.  There are good suggestions though.

 

Take baby steps.

Dn't expect too much of yourself.  Only do what you can.  Only what rises to the top of the crisis pile.  

Cry.  Rinse.  Repeat.  

Don't think ahead.  Only about things that might require legal or financial encumbrances. Try to get help with those.

If you have someone who will listen and not try to make suggestions ask them to listen.  For me that meant just being able to cry and babble and they were kind enough to just listen and tell me they were so sorry.

Know you will have some people who will empathize and others who don't know how.  Try to avoid those who cant.  It is self destructive.  It may not be easy to always distinguish but for those who make it obvious just steer clear.  Self preservation.  You will need the energy.

Try to get in a shower.  Run the water over your head and cry. For me it was a really good place to release.  

Don't be embarrassed to cry in public.  

Dont' try to hold back for any reason.  Our brain has hit a minefield.  We are injured.  If crying happens in public (which it did for me quite often for quite a long time) I just stuttered out why I was crying and then sat down somewhere and cried it out.  I've done it even in the small town I live in now.  Probably known as the old lady who cries but that's ok because it's MY truth.

Come here read and write when you want.  You won't feel crazy or quite as alone

Always remember there is NO TIME LIMIT for grief to express itself or think about what we are missing. 

Grief support can be helpful.  Counseling, Faith, groups, family etc but your grief is always personal even with any suggestion.

 

Today is a better day for me.  In fact I am seeing myself moving into a newer phase after three years three months.  I was stuck in a really dark place for a long time but there is no rushing this.  You think you should be "better" sooner.  Don't believe it.  Looking back I was still in shock at year two. Reaity has just started to give me a peek as to what lies ahead. 

You probably have children and family (I don't have children) so you hopefully will have some distractions but it will not fill all your time.  Those will be the rough spots.  Stick with us here and you will find that all of us understand.  

 

Take care Marsha.  I care.  We care……..

morgan

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