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A note from rebncor - new member - let's show her some suppo


Nick C

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From rebncor:

I am new and not sure I am where I am supposed to be but I am defianely grieving- how in world do people deal with this - it has been 18 months since diagnosis and he is at 114 pounds, weak, shaky, short of breath and now another round of chemo - fistula in his chest that may kill him first. More pills and drugs than I have ever seen We have been together for 37 years - how do I help him and how do I handle the pain - I cannot stop crying and he is still here..... I hate this disease. I cannot talk to my daughters who are 19 and 23 as my pain is hurting them even more. they do not live at home so I think it is easier to not see what is happening - I cannot talk to my husband, my best friend as he is so scared and trying to deal with what his life has become. They say no cure, just some more time.... I know there is no answer but maybe it helped to write it, I don't know what to do anymore...

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Hi rebncor,

Yes, Nick is right, you have found a wonderful group to join. You will find a lot of shared information here and many people who have had their lives changed by lung cancer. You will find a lot of compassion and understanding for all that you , your family and your husband are going through right now. I lost my husband, of nearly 36years, to lung cancer almost 5 years ago. My mom, who currently is showing no active cancer, was diagnosed 3 years ago and has been through two wedge section surgeries and cyberknife treatments.

My heart goes out to you and I do understand your grief , even though your husband is still alive. I too experienced grief long before my husband passed away. The one thing that kept us going was hanging on to the good moments together and the hope that the treatments would put him in remission until a cure came along. There are no two cases of cancer that are alike, but there are enough similarities that the information shared among members can be quite helpful . Most of all, the support given here is priceless. I hope that you will come and share your experiences with us and allow us to welcome you to our group, affectionately referred to as our family. I will check back in and look for your post.

Hugs,

Sue

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I lost my husband to lung cancer after five plus years

of treatment.

My gratitude is for those five plus years.

Yes, it is difficult to go through all the treatments because we love that person so deeply and want them to go on for a very long time.

My love for Bill was so deep that I cannot to this day not cry real and painful tears when I think of him.

There is Bill's take on this to consider.

He said to me. "I have no regrets." What more could he have said then that?

Going through the treatments is a "job." That is what he told me he was doing. I completely went along with that. We would see it through to however long it would last.

Those five plus years were wonderful.

Love,

Barbara

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Rebncor, welcome. This is such a tragic time for you. Do you have any immediate physical and emotional support in helping your dear husband. It sounds like you could use some. I won't be to your daughters' benefits in the long run to avoid seeing their father. Encourage them to make short freqent visit and have some little tasks they can do to help. And do come here and talk to us, every day if you want. It can help to even just talk about the little things that happen each day. It is not shameful to ask your doctor for something to take the edge off your emotions so you can better be with him during this precious time. Ativan and Zanex are commonly used.

Please keep in touch and let us know who treatment is going.

Judy in KW

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ok this might sound crazy, but it helped me in more ways than one in several circumstances. when this hits you and I have walked in your path so I know where your coming from, try this for some relief.

1. Go out side sometime when you can. I used to go at night when stars were out and it was warmer.

2.Just let it all out. Have a long hard heart to heart with God, because He can hear you. yell, scream, ask questions, I even did some mild cursing at him but always apologized when done cause Ya don't want the big guy mad at you so....

but thats it just go outside and complain, ask why, scream whatever you feel like doing. if you keep everything bottled up it will eat you up so get it out of your system.

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Rebncor,

It would be helpful to have someone to talk with who is not a family member. Someone who is not relying on you to be strong. Do you have a friend or a paster or even a counselor?

The primary caregiver has to manage not only the patient's fears, but her own and those of her family. It is hard to be that person.

One thing I discovered with my mom was that I was afraid to talk with her for fear of upsetting her and she was afraid to talk with me for fear of upsetting me. But she really needed to talk about her fears and what she wanted to happen. Once we started talking to each other it was much better for both of us. I was better able to help her do the things she wanted to do and to say the things she wanted to say. She relaxed visably and becase less fearful when she felt free to talk about what she was afraid of.

Susan

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Nick, this is so nice of you to do. I saw her note to you, and am so glad you brought it out for us to respond.

Rebncor, my heart breaks for you and your husband. This disease is so cruel. It was my Mom that died, but the process was so painful. I know it's so much more when it's your life mate, your spouse. Just know that you all are in my prayers.

Judy in MI

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Rebncor -

My heart is breaking for you- but you are getting some good advice, and that is the great thing about this site, people are so willing to give support.

I just wanted to second what Fillise said about talking- In my case, I am the one with lung cancer, and yes, some days I am very scared. My husband doesn't ever want to talk about it - maybe because of his fears, maybe because he doesn't want to upset me - but I would LOVE to be able to talk openly with him about my fears, concerns, and hopes. It would give me an outlet to let the fears go. It might be just what you both need.

peace

Janet

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Even though I am still "not over" my deep feelings about losing Bill, my heart still coaxes me to come here and read.

Sometimes, there is nothing I can say to help, and the best to offer would be to let everyone know that we are a family - having met under circumstances that none of us wanted - however, being grateful to have the support.

That support is precious and was especially comforting to me through all those moments of sadness, and concern.

What everyone has said about letting the feelings out with someone trusted speaks to the heart of it.

Even yelling up to God, as Randy has suggested, is a beneficial act in releasing some of the stress. That tension is there, no doubt about it, even while braving it through.

This place of understanding is a gift. Thank you, Katie, for all you have done and do.

Thanks to all of you who have the insights to give all the wonderful support.

Just wanted to let you know that I am out of steam with cancer, but my heart still holds you all.

Love,

Barbara

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Thank you all for your loving comments - I have had a hard time responding because I dissolve into tears when I read what I wrote and how you responded. Thank you so much, it does help to know that there is support.... doesn't change anything but does make me feel less alone. I am not sure how I am going to use this forum or what it will do to help me but I am going to give it a try.

This week was a better week for my Corey. A week ago, after a week in the hospital on blood and antibiotics he went to Stanford to have chemo. He was very weak and shaky- had lost over 10% of his body weight and weighed just 114 pounds- he is 5'8" - they refused to do chemo. I was devastated. I pushed and pulled and started a diet dairy for him - made him eat just below the getting sick mark and he finally got into the spirit of it - after months of - 'I'm not hungry', to 'I'll eat anyway....' this week, yay, he gained 7 pounds, is much stronger, - the neurologist put him on anti-seizure meds which was a slight set back.... he slept like he was in a coma and scared me to death for over 24 hours, the oncologist reduced the dose, said he was doing so much better and ordered the chemo. No side effects from that so far except the usually fatigue. So - he is still eating and we are still keeping track and this crisis (one of about a billion) seems to be over. This disease teases and tempts - makes us believe it is better and drops us in a huge hole of despair with each crisis -I HATE CANCER! thank you for letting me vent.

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So glad you came back to check in.

There is a Family member/care giver section too.

viewforum.php?f=12

I know there have been lots of discussion there about getting folks ideas on how to get their loved ones to want to eat and keep weight on. So if you have questions or just post a request for ideas, I'm sure you'll get plenty. I recall ENSURE being a very popular method of retaining gaining weight.

You can also post questions in the general section:

viewforum.php?f=50

You'll get everyone going through there every so often.

Many different areas to check on during your journey.

Glad this week was a better week.

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  • 3 weeks later...

and so it continues..... spent the day at Stanford yesterday - ctscans of chest, abdomen and pelvis - chemo is not working - can't tell if it is cancer or infection in the lungs but whatever it is is def bigger than last time, spot on liver is bigger, spot on adrenal gland is bigger and now a shadow on the kidneys - started new chemo every week for 2 weeks and 1 off - Taxotere - i have never felt so helpless in my life - telling our daughters that his cancer was worse was so very hard. we have to just go on and hope that this chemo will stop the growth and give us a little more time. or even, maybe, we'll get lucky and it'll beat the crap out of the cancer and give us a miracle - again thank you for a place where I can speak - I find it impossible to talk to people about this without dissolving into tears - this writing actually helps, I think, if anything can, it does..................

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Hi Rebncor, I'm so sorry about this latest set back. I so agree with you. "This disease teases and tempts - makes us believe it is better and drops us in a huge hole of despair with each crisis".

It's a stressful cycle of highs for good news, and then big lows for bad news. Up and down. So tough.

Be sure to take time for you. Even a little bit to read a book that is comforting, or take a hot bubble bath. Whatever gives you peace for some moments.

Writing your thoughts out is so therapeutic. So many times, those we love, family and friends, don't want to talk about this. Coming here can help when you need to "talk".

WE'll be here for you.

Judy in MI

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I know that shadows, and spots showed up on Bill's scans many times.

What held me together was just knowing that I had time with him - however short or long.

We went for five plus years with treatents, and it

was not anything but a continuance of keeping him

alive.

What I can say that may help is that both Bill and

I felt that all the time (whatever it was) gave us

a certain valuable time together.

To this day, I do not regret having gone through all

of that with him. I loved him and that was all that

was important.

When he was in hospice, he sat one morning at breakfast, and he said, "I have no regrets."

Those words still ring in my heart and are a comfort

to this very day.

Barbara

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