I posted here several months back about my sister who has lung cancer. At the time, we thought it was because of all the years she smoked. She is just 54 years old.

We have since found out that the type of cancer she has is due to asbestos exposure when she was a child in school.

I've very upset with myself. I'm upset with cancer. I don't like the way I'm dealing (no, NOT dealing) with this. My sister lives almost 800 miles from me and said she'd like me to come see her so we can get the things we need to say to one another out in the open. This was last October. I have not gone there yet. I want to. I really do. But I just can't bring myself to do it and I hate myself for it. I should be there for her. I want to be there for her. And I feel SOOO guilty because as hard as this is for me, I KNOW it's a billion times worse for her.

I do speak with her on the phone but I can tell that's getting hard for her now. I called her last night and she couldn't talk to me because she was on oxygen then.

We lost a brother in 2001 to throat cancer that went into his lungs. He too was 54. He was diagnosed in July and he went into a coma a few weeks later. He spent 1 month in a coma and passed away just 7 weeks after his diagnosis. We didn't have a chance to say what we needed to say to one another. He didn't want anyone to know. And I still feel robbed of time with him. So why do I not take the chance I have with my sister to see her and talk to her? I wish I knew.

I've been on other boards for quite some time dealing with issues like my hypothyroidism and my dad's alzheimers. I've gained a lot of knowledge, strength and support from those boards so I am confident that you'll lend your advice and kind words to me.

Is there anyone here who has struggled with this type of fear that I have now? How did you cope with it? Please share your stories with me about how you deal with cancer either in yourself or a loved one. I feel so alone and scared for my sister. I want to be there to hug her, hold her hand, listen to her and help her. But I'm afraid I can't until I can learn how to come to terms with this myself. This fear is consuming me. And my guilty feelings and the depression surrounding it all is unbearable.

Barb

Barb,
I'm so sorry to hear of your struggles. My situation was very different than yours so I probably can't relate very well. I lived 3000 miles from my mom and was naive to how deadly it was. I can say it hit me the first time I went to see her and everyone else was adjusted to her condition. She wanted to take her wig off and I threw a fit. Seeing her bald head made it more real. Then I got over it.
I know this is so hard for you already having lost one sibling but I just worry that she will pass and you will have regrets for the rest of your life if you don't go. You're in a rough spot, either way you decide it's going to hurt.

Hi i read your post and felt real bad for you. There is only one thing you can do, get in your car and go see your sister before it is too late. Like you said it is very hard for you but try being your sister. I recently found out my dad is terminal, trouble is I keep thing of this in ways it affects me, not thinking how he must be feeling. God knows what it must be like but my immediate reaction to your post was if she dies and you dont see her you will never forgive yourself.
goodluck.

Barb,

You know there are things you want to say to your sister, things she wants to say to you. Do you want them to be unsaid?
I really believe that you have to take a deep breath and walk through your fear, go to see her as soon as possible for both your sakes.

God bless you with strength :angel:

Cee

Thank you all for your replies. Of course I know you're right. I do need to find a way to set my own fears aside and go see her SOON. It's a 13 hour drive to her house so if I just make the first step and start driving, maybe I can get through this. I know once I start driving, I won't turn back.

I've never really forgiven myself for not seeing my brother sooner. And I really only had one day to get there 600 miles away. My SIL called me one night and told me he had cancer. The next day I had my brakes done on my car and drove there. By the time I got there, he was already in a coma. He died a few weeks later without ever coming out of the coma.

Ladyj, that's exactly what I'm afraid of. I haven't seen my sister in 4 or 5 years. But I guess if you can get over the initial shock, I can too.

But still I'm so afraid....

I think I just figured something out. I think I might be afraid that it's going to happen to me too. How selfish of me....

Love, Barb

Hello Barb,

PLEASE TAKE MY ADVISE AND GO SEE YOUR SISTER!!! My father passed away from Mesothelioma (cancer caused by asbestos) on Nov. 9, 2006. My entire family is devastated. We now know that this particular cancer is the worst one to have. Trust me, your sister needs to see you. We were by my dad's side until his last breath. He was so scared and wanted to live so badly. He told us he didn't want to die and if there was anything we can do to help him. I was so angry and unrecognizable from never sleeping and always running. Running to give him whatever he needed. Trying to help make him comfortable. Wishing that a miracle would happen and save him from this horrible disease. That never happened. He was so handsome, tall and charming. Seeing him deteriorate was the worst thing that I have experienced in my entire life. I miss my dad so much. I have to believe that he really is in a better place. No more pain and suffering. I am so sorry for you and your family. I hope you go see her and share everything you need to with her. Stay strong and always keep your faith........

Sunshine913:angel:

Barb, I have to agree with Sunshine-Go see your sister or you will be so sorry if you don't! All I can say is be prepared-be strong. Chat with her about everything that you did as kids-about all the good-fun and bad times growing up-it'll make it easier. My thoughts and prayers are with you. Cherie

Barb. I too agree go see your sister. I think at the end of life more people regret the things they did not do then the things they did do. Do not spend your life with regret. Keep in mind things are often worse in our imaginations then they are in real world. You may have an enjoyable visit with your sister recalling all your shared memories.Your being there will support your love for her so how could that be wrong? If you are afraid you can not be strong well it is ok to break down and cry as your sister will see it is out of love that you feel that way. What ever your fear is,rise above it and go see her as you will not regret it. Take care and have a good trip. JanMarie

Thank you all so much for your replies. I was afraid to tell my husband that I want to take that trip. I finally got up enough courage to tell him a couple of nights ago. He and my sister in no uncertain terms HATE one another so I thought it would be an issue for him. We only have one vehicle and to be without it for about 4 days is not making him happy. But oh well....I have to do what I need to do for my sister and myself.

I have thought a LOT about what you all have said and I knew already in my heart that you're right. I'll find a way to get there and I'll go toward the end of the month. I'll have a week off of work then.

Please keep my sister in your prayers. You all are in mine.

Love, Barb

Barb,Go see your sister as soon as possible! Because If you don't,you will regret it for the rest of your life! Not to sound harsh,but it's the truth. Take care...

Thank you all SO MUCH!!!! You've given me the courage to face this with her. I am renting a car this Friday and driving the 800 miles to be with her.

She called me today and asked what I was doing. I said I was getting ready to make a trip. She asked me where to. I said "To see you!"

Her doctor has advised her to start chemo ASAP. She said she didn't really want to do it but she might give it a try. She hasn't decided yet. I suppose we'll talk about the options but I'm not going to pressure her. She's under enough stress already and it is ultimately her decision. She said that since I was going there, she might take the ride back with me if she's feeling good enough and go to Northwestern in Chicago to see what they say. She used to work for a doctor there when she lived here. She'll stay with her son while she's here.

I've read your posts and re-read them so many times. I've also looked at other threads. I don't feel so alone anymore and the paralyzing fear is all but gone. I'm actually getting exited about the trip and I'm feeling very hopeful.

I don't know how I would have gotten the courage to see her if I didn't have you all to nudge me! :)

Thanks again!

Love, Barb

Barb, I will pray that you have a safe trip and know you will not regret it. How nice that you can bring your sister back and that she can stay with her son as family is so important in a time like this.

If she is going to check out Northwestern you must be somewhere around Evanston? My Mom grew up in Evanston and my Grandma lived there from her late 20's until she died at 103. She lived a few blocks from the football stadium.I have fond memories of that area.

I am glad to hear that you will not pressure your sister about treatment as you are right it is her decision, too many people forget that and try to force their will on people during a medical crisis. Your sister is under enough stress already. Best of luck to you on your trip. I am sure your sister will be so happy and so thankful. Bless you JanMarie

Hi Jan!

I do know Evanston. I live about 40 miles from there. It's very nice. When I lived in Chicago, we used to go there to the lake in the summertime and sometimes go shopping at Old Orchard mall in Skokie. I love that mall.

Thanks for the prayers. I'll take all I can get. :)

I am still a bit worried about seeing her for the first time since her diagnosis. I'm still worried about what to say but on the phone, I manage ok. I guess I'm worried that I'll look at her and see how much she's changed. I don't want to give her an "oh my God" look. I guess that's silly because I think she'll be glad to see me regardless of the way I look at her. I haven't seen her in several years so we're long overdue.

Love, Barb

Barb, Just be yourself-how about stopping at a nearby florist and getting her a bouqet of flowers or even a lovely scarf to wear-if she is still having chemo it would be so nice to something like that to wear! I remember my mom loved the ones we got for her! Have a safe trip! Cherie

Barb,
So happy to hear you are going on your trip and will work thru the emotions that come with it. You have made a big step already and honestly when you get out of the car and see her I am sure you will just embrace her and the rest will just come with the visit. My thoughts and prayers will be with you. When I read your posting it reminds me of a lot of stan's friends. His best friend from Jr. High cannot come to terms with it. We have some other friends that are like that too, and it is so sad. Then we have friends that we did not realize how truly wonderful they were! I know it won't be easy and I am sure you will be full of emotions on your drive, but don't try to let it overwhelm you on the drive over as I am sure it will all be fine. Make sure to bring some music to soothe you on the drive over to your sister's place.
Have a safe trip and excited hearing about the beautiful smile you will put on your sister's face!
Kim

Barb,I do know the Old Orchard Mall in Skokie as my Grandma and her twin sister use to take us shopping there all the time!

I will be thinking of You on Friday. Have a good trip and don't worry once you get there it will all fall into place. My mom was bald during part of her treatment but she never looked bad where someone that had not seen her would say "Oh my God" and I am sure your sister is the same. Most of the people that came to visit my mom when she was still getting chemo thought she looked good and could not believe that her cancer was terminal .To be honest my mom was kind of cute bald, she did not think so but she was , she had a nice shaped head.

I willl send lots of positive thoughts and prayers your way. JanMarie

Barb, Are you packed and ready for the trip to visit with your sister? I'm excited for you and her getting together. Have a safe drive there and home-be sure and let us know how everthing was. Enjoy your time with her! Cherie :)

Hi everyone!

I just got back last night. I can't believe what has happened these last few days.

First, I want to tell you that my sister looks and acts the same as she always did with the exception of her little green buddy (oxygen tank) that she's attached to much of the day and night.

Here's the part I can't believe. She was told about 6 months ago that she had cancer and she had about 1 1/2 years to live. She decided a few weeks after her diagnosis that she would get a second opinion. After 12 biopsies, it was concluded that what she has is probably not cancer at this time. They've recently discovered that she has cystic fibrosis and she's had emphysema for a few years now. She had more x-rays of her lungs and it shows worsening cloudiness in her lower left lung. Now the second doctor thinks she has a lung infection and wants to start her on three weeks of intervenous antibiotics. They still want to start her on chemo "just in case" but she says no. Who could blame her? Not me.

And to top it all off, I went down there to help her. She was upset that her house wasn't clean so I was going to do spring cleaning for her. Well, I got there Saturday evening and we just sat and talked. Sunday morning, I dropped something and went to pick it up and now I have a slipped disc in my lower back. Some help I was! ;) But it was good to have our sister-to-sister talks like we used to.

After all is said and done, there may be some lawsuits. My sister and our families were put through an awful lot of pain and stress with the first diagnosis which turned out to be incorrect. But I'm just happy for now that my sister has a chance to live longer than was predicted.

And to anyone who is facing cancer, get a second opinion if you haven't already.

My back can't handle this computer chair anymore so off I slowly shuffle to my recliner.

Love, Barb

Barb, I am glad that you had some nice sister to sister talks with your sister, See going there wasn't as bad as you imagined it to be. Sorry to hear about your back.Ouch! The drive back home must have been tough.

I have to say I am a bit confused, Cystic Fibrosis? ( not pulmonary fibrosis?) CF is usually caught as a baby or young child as it is something you are born with not something you develope later in life. I have met a two people that were diagnosed as adults but they had been misdiagnosed as children and were told they had asthma or digestive problems ( depending on the mutation to their CF gene) and spent alot of their life sick. Was your sister sick alot before all of this? Did she get alot of lung infections? Have breathing trouble? Have trouble gaining weight due to digestive problems or problems with her pancreas? I am talking from childhood up until now.

I am also confused how it could go from Mesothelioma ( which is the cancer caused from asbestos) as I would think it would take a positive tissue culture to be so specific about the type of cancer to CF and emphysema and why it would take 12 biopsies to decided this? Do you know if any of those biopsies were sent out to Mayo for a second opinion? Did they actually test her genes to see if she has two CF genes? If you have one gene you are a carrier but you must have two ( one from each parent) to actually have CF. Is there any known CF in your family?

It just really sounds confusing and is hard but not impossible to believe that such a huge mistake could be made, remind me not to go to your sister's doctors! Anyway I am so glad you made that trip as even if this is CF your sister will need your support as CF is also a horrible disease that keeps progressing.

A co worker/friend's 19 yr old daughter has CF and soon may be faced with deciding on a lung transplant in an attempt to save her life for now. She has both the lung issues and pancreatic digestive issues that most have so has to eat a zillion calories a day to keep from loosing weight . It is really a terrible disease.

Hope your back starts feeling better real soon.JanMarie

I am glad to hear your sister doesn't have cancer. Im also glad to see you in a good mood again. God bless you, your sister, and the rest of your family. :)

Janmarie, I'm really confused on this too. We have no way of knowing if there was any CF in my sister's family because she is adopted. We do know her half brother doesn't have it. He was also adopted into our family.

I don't believe the biopsies were sent to Mayo but I am surprised my sister didn't insist they send them there. She had surgery at Mayo many years ago to remove 60% of her stomach. She had bleeding ulcers so yes, she has had many problems with digestion but seems to be maintaining her weight pretty well.

The doctors she has now think that she has a lung infection that will require a 3 week stay in the hospital hooked up to intraveinous antibiotics.

Nothing with my sister has ever been cut and dry as far as medical diagoses are concerned. She's had one kidney removed, 60% of her stomach, an ovary, her gall bladder, her spleen and I'm sure I'm leaving something out. She's diabetic and has had 2 heart attacks.

I'm looking back at your questions now.

Did they actually test her genes to see if she has two CF genes? If you have one gene you are a carrier but you must have two ( one from each parent) to actually have CF. Is there any known CF in your family?

I don't believe they tested her genes but I'm not positive.

Was your sister sick a lot before this?

Oh yes. Lots and lots of stuff as I've said.

Have breathing trouble?

Yes for several years but especially the last few years. She also has pain in the area of the lung that shows the cloudiness. She has an estimated 40% breathing capacity. She is on oxygen and it is set at 4 (5 being the max).

Have trouble gaining weight due to digestive problems or problems with her pancreas? I am talking from childhood up until now.

No. Not really. Except for when she had bleeding ulcers.

This is really frustrating to her with these doctors. The doctor who misdiagnosed her was her employer. She's an RN. She quit that job two weeks ago and the doctor doesn't understand why. DUH!!! Aside from the fact that she has to haul an oxygen tank with her and her energy level is WAY down, she just doesn't want to work for a doctor she doesn't trust anymore.

Thanks to everyone for the well wishes and prayers!

Love, Barb

You need to turn all your feelings over to the Lord. My daughter is 41 years old. She has a nine year old. She has it in the lung mets to the brain. I'm not saying it is easy. It's not easy on anyone. I have had to turn it over to him.I could not make it one day or one hour without him. I dread the day that thing are bad. Right now she is holding her own. I hope this helps

Betty