Good thoughts please
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kris, you have every right to be ticked off!!! It is not fair that we get sick! It is not fair to be constantly worrying about each ache or pain ..wondering if this is the ‘one’ that will send us on that awful roller coaster of pain and fear. It is not fair to worry about not having a future…not knowing if you dare to plan for next Christmas. It is not fair to wonder if ‘I/we’ will still be here in 10 years or 10 months!We are all too young. It is not fair especially when the people we love the most and are supposed to love us the most just don’t get it or is it they won’t get it ? that is where the anger comes from for me anyway. They are afraid to share their fear with us I think. I think they want to spare us but dear God by sparing us they leave us so alone don’t they? I know when I worry I would like someone to tell me that they will be there for me and my children and that they will not run away no matter what the news is. We all hear you and we do care. praying for you, deb
Wow Chrissy…could not have expressed my feelings any better than you just did as I sit here in tears. Plus I feel soooooo guilty because the other weekend I actually picked a fight with my husband and apparently said some pretty terrible things that I do not even remember saying and know I would not have said if my head was in a better place. I think the stress of seeing somebody you love go through this terrible disease and be so helpless to alieviate except in doing research finally made me snap upstairs abit. I too am truly sorry for all effected with and by this illness.
KarenWow,
I am just at a loss for words. Chucks had a recurrence two months ago. We been doing gemzar and tarceva for two months now. I am scared everyday. I worry everyday. I think about the future and wonder if there is one for us. We might never have the perfect wedding or get to have babies. I will be ruined for the rest of my life if I lose him. Sometimes I get so angry I forget to breathe. I just want to run away. I want to wake up and be somewhere else. I want to pretend this never happened to us. He’s only 31! Why couldn’t we have had a couple more good years together but nooo… I struggle with happiness. I am jealous of those that it comes so easy to. Sooo…. I think deep down inside we all have those same feelings. Why him! I can think of many others that deserve it more and yet….. they live (it seems like forever) Why us? We were just starting our lives together and trying to live right. All of these thoughts sometimes take me over. I run away to my moms or to the beach to just breathe and cry. I always come back. I am tired of hurting and tired of seeing him in pain everyday. I am tired of worrying everyday. I am tired of my heart aching everyday. I am tired of being on the verge of tears EVERDAY! I am just tired of being tired if that makes sense. I do the best I can with what I have. Keep going… keep fighting…. and keep pushing forward. That is all I have left. I feel everyones pain. I am truly sorry!
Dearest Sophie,
Don’t ever think God would be disappointed in you. He made us, He gave us all our feelings and He understands.
When my Mom died of cancer I actually thought “Why wasn’t it my Dad”.
He is a terrible person. My Mom was like you, she raised us (4) by herself,
working two jobs to keep us in a home and fed. We were very poor but happy.I hate this cancer, When I see older couples together I just cry because John and I will never have that time growing old together but I try to let him know how much I love him everyday.
What you’re going through is normal! Why wouldn’t ANYONE feel the way you do. Only Jesus was perfect.
We ALL love and care for you and grieve for what you are going through.
Our prayers surround you and I pray that God sends his angels to hold and comfort you.Charlene
Sophie… Your not wicked are You? God is great and he loves you dearly doesn’t he? We all think why the hell me, don’t we? Why not that jerk? I’ve given my whole life and what do I get in return? Cancer? death? survival? An opportunity to do something great? Are we assisting God to shed awareness? Is our purpose on earth to help save others? First line of order is , LOVE YOURSELF ! Don’t ever feel gulity for your thoughts. Your not being tried in a court of law. It’s natural for us to ask all the why questions. I’ve been a bad boy a few times in my life, I still ask myself why and never did get any answers. God still loves me as he does you. The world /Earth is a big school, We start learning from the moment we are born and contiune to learn until the day we die. Yes, it gets harder and harder with each and every year because we are smarter and want to know the answers to all the whys in our lives. Unfortunately , God has decided to save the answers until we reach our home meant to be. Live and love for today Sophie, God is right here with us, all the way. I’m glad God is making the big decisions and that I’ve put my trust and faith in him. Where did this come from Sophie? Straight from my heart. Why? Because I care and love my brothers and sisters. You’ll be just fine . why? Because you have a heart that cares and loves as well. Don’t you ever forget it. 91/2 years I have asked many questions with many unanswered, but God’s love tells me it’s okay to be mortal and wonder why? Wow, did I just say all this? I wonder why? Your the best Sophie along with many others who wonder why? I’m not trying to push religion or God Sophie, It’s my personal choice to say, do, and feel the way I want. Others may look too a higher power or universe to obtain their feelings and thoughts, and that is okay as well.
God Bless,
Jeff G.Charlene: You go girl!! I am so proud of you! IF you are that good we could make you our teller-offer!!! AH, it feels so good.
Sophie: Don’t you ever say God is disappointed in you! He is guiding you to help get us on the Oprah show!! And if not her, maybe Montel, but only when Sylvia Browne is on!!! If God was disappointed in you he would have never given you this burden to bare. He has a reason even though we do not know it yet.
Hi Friends,
It was good for me to read these posts. I have been guilt-ridden for the past six months because I have had these same feelings. Why me? I’ve been a good person. I don’t lie, cheat on my taxes or steal. I worked hard to teach my students instead of just collecting a paycheck. I raised my daughter by myself and put her through university by myself. I’ve been generous to family members because I love them. I don’t drink or smoke. I have been planning for my retirement so hard and everything is just screwed up. I see these people who do everything wrong and have no work ethic or morals, but I have cancer, and they don’t. I have felt like such a wicked person for having these feelings, and I have felt like God looks into my heart and sees this envy and jealousy of healthy people, and he is so disappointed in me.
Sophie
I know what you mean about the anger part. John is so sick and we’ve really had a LOT of things (bad) happen in my immediate family in the last 2 weeks I just blew up.
It suprised me that I had so much anger going on. I went on a rampage!
All the fear, anger, anguish and just all the bulls__t that was happening just poured out. Tell you what though I feel cleaned out by telling my family that I had more than enough to handle and by God they better back off and grow up.I say TELL THEM! I don’t care if they want to try and be upbeat. Tell them to read your post. You have the right to talk. You have the right to be held and soothed. You have the right to be ANY WAY YOU NEED TO BE !!!
With lots of love, hugs and prayers,
CharleneI know what you mean about the anger part. John is so sick and we’ve really had a LOT of things (bad) happen in my immediate family in the last 2 weeks I just blew up.
It suprised me that I had so much anger going on. I went on a rampage!
All the fear, anger, anguish and just all the bulls__t that was happening just poured out. Tell you what though I feel cleaned out by telling my family that I had more than enough to handle and by God they better back off and grow up.I say TELL THEM! I don’t care if they want to try and be upbeat. Tell them to read your post. You have the right to talk. You have the right to be held and soothed. You have the right to be ANY WAY YOU NEED TO BE !!!
With lots of love, hugs and prayers,
CharleneI just got some diazepam from the doctor on night duty to relax me and hopefully calm me down. I only have 4 days worth, just enough to get me a time with my regular doctor. The nurses were appalled that I hadnt received any information on the scan, only that the fill in doctor said I needed an appointment to discuss it. Heartless beast. But hopefully in a couple hours I will relax enough and the edge will be gone. It is not a solution, just a temp fix. I will be making an appointment with the psychologist asap. Luckily I just dyed my hair last night so all the cc induced grey hairs are now hidden and even if I dont feel fresh, I look it. And Peter, it is red again.
Kris, I’ve been thinking and worrying about you, wondering what was taking so long. I’m running late for a phy. therapy appt., but just wanted you to know I’m thinking of you and praying for the very best news. I’m not trying to minimize how you feel because I’m right there with you. I just want to share that when there are delays and miscommunications at Charlie’s doctors and I get all worked up and sure something’s wrong, so far, they’ve turned out to be just human error or carelessness. So, I have gotten a little better about not driving myself and everybody else crazy. I don’t know if that will help, but I hope you get some relief soon from the pain and worry! Sending love and hugs.
Carol
We do understand where you’re coming from. My horrible ex-husband was an alcoholic and smoked three packs a day. His goal was to live till age 50.
I want to live till I’m old and gray and 85! I’m only 45 years old! Why do I have cancer and he doesn’t? I never smoked because I didn’t want to get cancer
I drank moderately but never got drunk.
I excercised and took care of my body.
Sometimes life just aint fair.
Kris – DEMAND to see your doctor ASAP!
Dear Kris,
I am stunned that doctors can be so heartless. I suppose a medical degree does not make a person empathetic OR sympathetic. But it seems like it should be a requirement, a class you have to pass, or they won
Hang in there is tough to hear but…when Teddy had his PET Scan the end of June the doctor was also on vacation and no one would tell us anything. Guess what? There was nothing surprising. So, you never know. Stay strong! As for family not wanting to face this brutality, perhaps you need to let them know it is not helping you. That you need to be able to talk about this not hide from it.
Maybe have them read some of the posts on here and to educate themselves for what you are going through. I can’t let down in front of Teddy or he thinks he failed me but we talk a lot about it! Heck, it consumes our lives. Like you are taking charge of your life right now, you need to also take charge of how you want those around you to perform. Its about you, NOT them. We care and you can tell us all the time!Big hugs to you, Kris. I’d love to say to wait and try not to let your mind run down the rabbit hole, but I am 100% positive I would be having similar thoughts if I was in your shoes. I offer you all my prayers from across the ocean, and every good thought I can muster.
These cholangio doctors (or any doctor, for that matter), while extremely smart and amazingly dedicated, just sometimes don’t get it. They appear to completely ignore the patient’s perspective, and it is cruel. We try and talk to them about it, but they just never seem to fully grasp the anxiety and stress that comes with waiting, and how much of an impact it has on the patient’s health. And for 3 weeks!!! Wow. Again – big hugs.
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