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Sophie51

Newbie spouse of LCNEC patient.

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Hi Everyone, 

My name is Sophie, I’m 51.

My husband has been diagnosed with LCNEC early March. I wanted to share some of my journey, since we don’t have children nor extended family and the feeling of loneliness is crippling

At the same time my husband was diagnosed, my mother was visiting us from Europe and I just discovered she is suffering from the first signs of sun-down and it is impossible not supervise her on a daily basis. She stayed for 4 months. I had to to shield her most of the time about what was happening because her responses were inappropriate and made me feel worse.

I cried a lot for the first few months, even if I showed a strong facade for my husband.

He has finished his Chemo and is on maintenance once a month. He just started a 8 weeks course of radiations.

I felt so happy at first because 50% of the tumor has disappeared ( the Oncologist prescribed a «  soft » chemo regimen ).

But now the daily radiation is kicking my husband’s butt as he would say. He is exhausted all the time, and depressed.He is not the sharing type, doesn’t want to attend a support group, talk to me and I find myself at a loss. It is as if I’m numb. I had so much fight in me at first, even for the both of us, but now, there is this fatigue I’m feeling and sometimes I’m even angry with him because he’s still smokes a few cigarettes a day. It seems I can’t reach him...

is this a normal feeling for a spouse?

Sophie

 

 

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Sophie,

Welcome here. Do I understand your husband is being treated for large-cell neuroendocrine carcinomas (LCNEC)?

Completely understand the energy-sapping effects of fractional conventional radiation.  Unfortunately, there is no way to minimize the fatigue. He will recover after treatment.

My wife tells me that I was unreachable during period of my protracted treatment.  I believe now that the cause was depression and indeed you might seek a medical evaluation of depression for him. I wish I had a magic want you could use to stop his smoking.

Anyway, you are one of us now and while we can't determine what might be your "normal" feeling, we certainly understand the challenges you both face.

Stay the course.

Tom

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Thank you Tom for your answer! 

Yes, he is treated for LCNEC. A death sentence as of 2015,  just not that desperate as of recently, per our oncologist words! He is a direct, quite funny guy and I like it that way! 

he is receiving the same course as Leo here on the forum, and as I wrote, 50% of the tumor is gone and he regained about 12 pounds.

i really think this forum will help me help him *-* 

best, 

So

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Welcome Sophie. i'm sorry to hear about your husband's cancer and the challenges you're facing.  We all respond differently to cancer and to being a caregiver. Your exhaustion and frustration are normal. I hope we can be a support to you. Keep posting and hang in there.

Bridget O

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Sophie,

Like others, I want to welcome you to the forum.  You'll find a great group of folks here that can share experiences, answer some questions and give support so that you don't have to feel alone.  Being a caretaker alone is a very tough road (my wife has Alzheimer's) on its own add to that your husband being ill and it becomes a perfect storm.  Even after your mom leaves you're still worried about her and worried about your husband.  The only advice I can give you is to take care of you!  Let me start by ensuring you know that I'm not saying not to care about your husband, but I am saying that you need to find some time each and every day (it could be 30 minutes...moving up to an hour...then more) when you can be out of the caregiver business.  It can be a walk, a car ride, coffee or lunch with someone (friend, acquaintance), but you need some time for you.  Trust me, prior to my cancer I was running so hard that there were times I could hardly make it through the day and numbness became my defense against all the worry and pain.  If you have any hobby (music, knitting, painting, fitness) find some time to do it.  If you are religious speak to a minister, priest or reverend.  Please find something that gives you joy and make time for it in your life.  Your batteries need recharging.  You have a big responsibility to handle and you need to realize that if something happens to you, then your husband loses care.  But, once he recovers, he's going to want his wife back and you need to take care of her.

This may sound silly, but imagine you see a good friend going through what you have just gone through.  That friend is in pain, tired and overwrought.  You're worried about her and her well-being.  What would you say to her???  I'll bet the words would be gentle and kind, nurturing and supportive and would be stressing how important she is and how she deserves to be taken care of.  Those words are for you...  :)

Stay well, smile, breathe and we'll be here for you.

Lou

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