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Not sure what to say... 
Started by Tsunami living
24 Jan 2018, 9:48 PM

Hello everyone, I have struggled with starting to put anything in this forum. I have struggled for a long time with finding help for myself. My wife has stage four neuroendocrinologie carcinoid. Some say she is the lucky one as she now feels the pains and problems of the top 10% because 90% of those who have this are already dead.
The system where I live leaves it hard to find somone with a common situation. I was invited to speak to a lady who’s husband died a few years ago, but only after one visit she called it off because she had not been at piece with her husbands death and talking with me brought it all back. Next I tried a professions. The first one had piles of files four feet high in her den/office, her daughter was home sick stomping around above us, her cat was in heat growling looking through her French glass doors at me and the therapist spent 40 min out of our hour making sure she had all the paper work filled in so she would get paid... I never went back. I was lined up with a fellow who’s wife passed away... in 1978. He was 88 years old now and remarried for 20 some years.
Next my wifes oncologist set me up with an out of town therapist. I looked her up on a site that reviews Dr,s by their patience and she did not fair well because of her failure to communicate with her clients, but I gave it a try and emailed her my situation. Then I heard nothing for two weeks and sent another which it took her more time to respond. It just got worse from there, so I gave up on finding trying. It has been six months later now and I am lost and tired from these disappointments.
There is lots of conversation about ladies and how they deal with their husbands death or dying but for a number of reasons not a lot for husbands losing their wives. My wife and I both have medical backgrounds which as you all know sometimes makes you see too much in test results etc. My wife is in her 40’s and is amazing. We communicate a lot about all aspects of the cancer and test results what’s next about us. But I find there are things I try and understand but don’t. There are feelings and thoughts that come up and then disappear again. I know everybody’s situation is subjective and individual to them.
  I really struggle with the anticipatory grief. I show my love for her in the things I do and say but more and more her pain is so great with the neurological part of the cancer is so strong a hug hurts too much to do. I am trying to understand what she needs or is going through but much of it she does not know either.
I have read many articles but you all know our combined experiences out weighs the words in all the books written. 
Thank you for taking your valuable time to read this, any insight would be appreciated  
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Reply by Debbieo
06 Feb 2018, 9:42 PM

Tsunami living. I just started on this chat room and although I don’t have any experience with your wife’s type of cancer, I can relate to your cry for help.  My husband has esophageal cancer and has just finished his chemo and radiation.  Surgery is the next step for us.  I am heartened by the love you are able to show one another in this horrible situation.  You must cherish that above all else. I feel like cancer has robbed me of my husband and his affection as he has closed in upon himself and refuses to talk to anyone about his disease or feelings.  I have also had a million different feelings, sometimes in one day, and I grieve the loss of what was.  Our relationship will never be the same and that is frightening.  I understand how you feel about not knowing what your spouse is going through or feeling.  I tend to want to “fix” things and in this case that is not possible.  It leaves you feeling helpless and afraid. Please know that there are others out there going through similar situations and try to gain strength from the love the two of you share.
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Reply by Tsunami living
08 Feb 2018, 12:48 AM

Thank you Debbieo, for your kind words. thank You also for your time and energy and most of all courage. I do believe like you said we are robbed of our loved ones too early. We are hopefully left with enough greatfull memories that cast a long shadow over the resulting sadness, anger, frustration, lonleyness and loss which we have been forced to hide. Hide in ways when someone who really is just asking about your spouse but does not want to hear the reality of it. The good friend that looks at your spouses feet, the roof or the walls anywhere but in their eyes because they are lost for words. Hiding the great day you are having from your spouse only because they did not have a good day and you don’t want them to feel worse. Hiding your bad day and putting a smile on your face to bring up your spouses spirits. We do this because of love for our spouse or family member. We do this for respect of who they are and have been. 
There is no grand prize, no cheering crowd or parade in the end. In the quiet moments at the end we are left with something so much better. The knowledge we have laughed and lived and loved hard as we could to show and give the respect we would want to our loved ones we would desire.
I may at times disagree with how my wife deals with some of the aspects of her illness. I too am a person that tries to fix things. But I know I can not make her better or the pain less. I know she loves me even at moments when the pain is the greatest and she too does not want to talk. 
All that I am left with is the faith that these actions will lead to peaceful acceptance one day of all that has come to pass.

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Reply by Debbieo
09 Feb 2018, 12:22 AM

Hi.  I understand so well, about hiding aspects of your life from your spouse and from friends and family.  I too feel guilty about feeling joy when I sing at the top of my lungs and dance in my kitchen and feel crazy just for a minute.  It’s something my spouse cannot share, good thing he is a bit deaf!  It is hard to put on a happy face when you are feeling not so happy yourself.  Who props you up?  Friends ask how you are, but no one really wants to hear the truth, the actual bald truth.  Do you journal?  You write so beautifully you should definitely keep a written record of your journey.  Who knows, in the future it may help someone else.  Keep the faith.
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