1 (edited by ToniaK Tue, 21 Oct 2008 11:17:05)

Topic: Drained and feeling guilty...

Hi,

I'm new to the board but I needed to vent somewhere and I'm not even sure if I've listed this in the right topic.

In short my Grandmother was diagnosed with bile duct Cancer "officially" on the 13th. We had a strong suspicion on the 3rd when her coloring turned yellow but hung onto hope that maybe it wasn't. She had the bypass surgery on the 13th and the Cancer was found in her lymph nodes and at the head of the pancreas.

My grandmother and I are very close. I'm very lucky to have the relationship I do with her. I always knew that in time she wouldn't be there but for some reason I was still shocked when I was told.

I've been around to help with a lot of things since we found out. For various reasons my aunts and uncles have not. My Mother lives a ways away and can't be here all the time. Because of this I've been around for the meetings with the doctors and getting the paperwork figured out and seeing what she needs. I really do consider this an honor.

However, since the 13th family issues have surfaced that are causing stress in an already stressful time. My Grandmother has opted not to seek treatment for a variety of health reasons. One of her children is begging her too and is trying to get me to do the same. The numbers for her situation are amazingly low for success on any level. She's told me again and again she's ready to go. I can't push her on this. I feel its her choice.

I feel guilty because of my frustrations with the situation. I love my family but this is not the time to be figuring out who was "loved more" or who always felt they were the "black sheep" and who got the better christmas gifts. I could be wrong, maybe it is....

I just want them to be kind to her. She's tired and scared. I want them to be kind to each other too. She held us together and we're going to have to start doing that on our own soon.

I feel bad writing this but I don't know where to go. One moment I'm "ok" and the next I'm an emotional mess that's angry and scared. I'm 28 and married ( no kids yet) and feel bad for my poor husband and my mood swings.

Is ANY of this normal?

Thanks for reading the looooong post.

T

Re: Drained and feeling guilty...

Welcome and sorry you had to come here! These are my own personal feelings but at this time your Grandmother's wishes should be honored. If she states she is ready to go then she should at least be allowed to do that with dignity, peace and hopefully a little more quality time.  Perhaps if you told the family just the way you told us, it might sink in. Maybe you could have a religious leader intervene at a family meeting? I believe that when people make others linger it is for their own selfishness. Yes, I believe your feelings are totally normal. If it was my grandmother, and with the prognosis the doctors have given, stay strong and let the others know that what they need to do now is show love and family caring. Please feel free to vent to us at any time, it helps to write it out!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by marions Tue, 21 Oct 2008 18:19:12)

Re: Drained and feeling guilty...

Tonia....this is a complex situation with many feelings and fears experienced by all family members.  I would run this past Dr. Giles on this site as he is a great support to all of us.  My experience was similar to yours in that when my husband was diagnosed most comments and suggestions made by others were based on the lack of knowledge of this disease but, mainly underlying was the overwhelming fear of the possibility of losing someone so loved by all.  I made sure to research any options possible and then supported my husband, following his wishes, and I never looked back all the while I continuously had to remind myself that this was his disease, his body, and his decisions and realizing the fact that my husband had lost the control over his body and the only thing left for him to control was how he wanted to proceed with treating this cancer.  You are a wonderful support to your grandma and I can imagine how grateful she is to you.  Others may also have some stories to share and suggestions coming your way.
Tons of hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Drained and feeling guilty...

Hi ToniaK...sorry we meet under these circumstances. The club that no one wants to belong to...

As long as your Grandma has got all the information that she needs to hand...who can say that a decsion to progress is right or wrong... i've questioned in my mind the situations of two of my own family members who made very different decisions...one to carry on and the other...not. They were both medically qualified but came up with different answers when facing exactly the same disease with the same prognosis.

Either way... the decision is difficult for her, you and the other family members involved and i feel terribly sad for all of you at this very difficult time. Just try to stay strong and supportive and help her through this...whatever the outcome.

As others on this site  have pointed out to me (in relation to my situation)you honor your Grandmother by respecting whatever decision it is that she has made.

Good luck...

Frogspawn

Re: Drained and feeling guilty...

Hey Tonia!  I believe it was last week when I let it all hang out! I felt so bad about my negative post, I thought I would never post again.  The wonderful people on this site however, gave me hope and encouragement at a time that I needed it most. I honestly didn't think I could do this for one more minute....but with the awesome support and insight you will realize that every feeling, every thought, you think is crazy is the "norm".  None of us ever imagined dealing with such a monster.  I tell alot of people I wish he had some other kind of cancer because at least there is a cure for every other one! This disease is devestating!!! But, with people on this site and Jesus Christ as Lord....anything is possible.  You are so brave and truly fantastic to be going through this with your grandma and wanting to do as she wishes....stay true to your heart and know that I will be praying for you.

Heather

Re: Drained and feeling guilty...

Tonia,
Vent away.  That's what we're here for.  Sometimes it feels better to get it all out in writing.  And as Marions suggested, you can Ask Dr. Giles anything you want.

God bless,
Lisa

Re: Drained and feeling guilty...

Thanks to everyone for being so wonderful. It means a lot.

Starting the research on her hospice choice today. Looks nice...as far as that kind of thing goes.

The treatment options that were offered are made more complicated by diabetes that has been getting more out of control and a heart condition. The Cancer has spread to her pancreas which makes the diabetes even more out of whack.

They removed her bile duct, her gallbladder, part of her small intestine and lymph nodes. They just couldn't get all of the Cancer out.

Thanks again for everything.
T

Re: Drained and feeling guilty...

I honestly believe your grandmother and you are making the correct and kind decisions. Stay strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Drained and feeling guilty...

Hi Tonia,
So sorry to hear what you are going through...but as you have learned, you are among the very best advisors when you come to this site.  I wish for you strength as you deal with the issues you are facing: this horrid cancer, your families' personal feelings, and your grandmother's wishes, not to mention coping with other medical issues. 

Dad had comlex issues similar to your grandmother's:  diabetes, congenitive heart disease, gout in every joint in his body and then this dreaded cancer.  As his careprovider/daughter, I just stood back and let him control the outcome.  It was all he could control considering the inevitable outcome.  He decided what he wanted to do.  His mind continued to be sharp, up to the end.  We talked everyday together, and then with my brothers and mom.  (In case you were wondering...my mom has significant health issues, as well, and was not able to care for dad.  Dad asked me to be his and mom's health care agent.  I made sure mom was included with everything as she was able to). 

It seems as though you and your grandmother working together.  I'm glad for you that you have each other.  This is a most trying time...especially when other family issues get in the way...but when all is said and done, it is a time that in retrospect I am thankful I was able to share with my dad.
Take care!
Jolene
>  by the way...what part of Minnesota are you from?   I live in Hibbing.

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Drained and feeling guilty...

Hi Toniak!

My Mom has this awful disease, you can read our story under introductions (Cherborg)

I am a Cytologist (Basically I diagnose cancer as a profession).

Here is something I wrote down years ago and it still gives me great comfort even after diagnosing my Mom.

"I believe the way you encounter life is the way you encounter cancer.  The illness will not change your personality nor will you become another person.  However you are offered the chance of putting a different order in the priorities of your life."

Your grandmother sounds like a remarkable woman and from reading your post it appears she is leaving a wonderful legacy behind in you. 

It does help to write your frustrations down or I tend to yell alot while alone in the car...*grin*.

Respect your grandmother's wishes.  These are some of the things she is TRULY in charge of right now.  Having cancer means losing control on so many fronts.  It's such a scary word.

Be kind to yourself as well.  Try and take advantage of as much quality time as you have together.  Above all .....LAUGH!  It can be about anything.  My Dad and I are convinced that "chemo Brain" is really a contagious illness...lol

I have a close friend in the last stages of colon cancer.  He has been collecting "cancer jokes and humor" for the last year.  Not to eveyone's taste but it keeps him in stitches and all of us laughing.

Remember above all.............savor every moment. 

Just some random thoughts  - hope some of them may help.  You and your family are in my thoughts and prayers...........

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Drained and feeling guilty...

Tonia,
First of all, my heart goes out to you and always know that you are a great support to your grandma and you both are so lucky to have each other. I have not posted very much on this site, although I visit it often. I am coming up on one year of losing my wonderful husband to this horrific disease. I remember people giving advice and questioning why Jacques did not go for the chemo/radiation route. I was at every doctor appointment and was by his side each and every time he was in the hospital and constantly researching and asking questions. Jacques and I would discuss options at length. I always knew what his wishes were and I followed them to the end. I do not have one regret about any of "our" decisions. I miss my Jacques more and more each day and my life is forever changed but I am so fortunate to have so many wonderful memories, and some of those memories were in the final weeks of his life. Enjoy each and every day you have with your grandma and don't look back and never ever feel guilty. Just let her know how much you love her.
Love from NH
Barbara

Re: Drained and feeling guilty...

Hi Tonia,

I have to agree with everyone else. You & your Grandmother are doing fine, even though it may not always feel like that. Just follow your heart & know that you are doing your best with the circumstances that you have been given. I think that Barbara says it best. Don't look back & never feel quilty. Just enjoy everyday & take it one day at a time.

Barbara,

I am thinking of you as you come to that one year point. I am almost at 2 months since losing my husband Jim & wonder if & how I will be dealing with things by the time I reach that point.  I do agree that this is a horrific disease to lose your spouse to & that my life has also been changed forever. I too am thankful for all the memories of our life together. I will always miss him and will hold him in my heart forever.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Drained and feeling guilty...

Dearest Tonia,

Never feel guilty. You are your Grandmothers Angel. You do what you must to protect her and follow her wishes.

I too know the anguish of having family members fighting about everything.
I suggest you talk to your Grandmother about doing a will. That will settle everything for everyone.

My Husband John is near death. He is only 53 and he fought a long 3 year battle with every kind of tratment available BUT every one was worse than the cancer.
He finally sat up a few weeks ago and said he couldn't do it anymore. The treatments were creating such unbelievable pain he just could not take even one more day of chemo.

If your Grandmother doesn't want treatment she MUST be listened to. It is her choice to do what she feels is best for her. This is her life and she has the right to choose no treatment.

God bless you. There seems to always be one person in everyones life who steps up and decides to be the caretaker. I want you to know you will be blessed for doing this. You and your Grandmother will grow closer and closer as time goes on. Cherish every minute you have with her for you will come to learn a valuable lesson in caring for her and in her passing.

With all my love and hugs,
Charlene

Re: Drained and feeling guilty...

Hello Charlene,

I have been reading posts on here since my Mom was diagnosed, I finally bolstered myself to join as I am having such a hard time with this. Your postings made me cry, your love for you husband is so evident, your devotion breathtaking. He is a lucky man to have you, I really mean that, my Mom always tells me that feeling loved is the only thing that gets her through this dreadful ordeal.

I am also the caregiver to my Mom. She was misdiagnosed many times before they finally got it right, they even told her the mass was probably a hemangioma! By the time they finally diagnosed CC, she had a very large tumor. She has recently had a resection, I know we're lucky, I see many people don't even get that option, but her surgeon told us this isn't a "cure" but a way to extend her life.

Can I ask if your husband had the resection? If so, how did he fare afterwards? She is not quite two months post op and not feeling that great; still lots of pain around the incision, trouble digesting food, depression.

I worry about her all the time, she is just so special to me. My greatest fear is watching my dear mother die a painful, prolonged, premature death. Reading your postings, as well as others, makes me feel not so alone and gives me new ways to support my Mom. Thanks to you all.

Re: Drained and feeling guilty...

Nikki,
As you probably have already realized from reading all the different posts, CC treats everone differently. It is hard to know what to do & what will happen next.  So many have been misdiagnoised as it seems to hid & is a very silent sneaky cancer. All you can do is take things one day at a time & do the best you can do with each day. Enjoy whatever time you are given with your Mom & remember that it is important to respect her wishes and that she is comfortable & without pain.  Good luck to you & your Mom. My thoughts & prayers are with you.

Charlene,
I often wish that we had known sooner about Jim's cancer & that he could have been treated more aggressively & had more time, however, after reading your post I wonder if his passing so quickly wasn't a blessing in disguise.  After reading how hard the treatments were on him it may have been better that Jim passed in 7 short weeks. It has really been hard on me, but at least his pain was not pronged.  I guess sometimes we must weigh quality of life over quantity. I feel so badly for you & John and what you are now going through. Know that you are in my thoughts & prayers and that I along with everyone else on this site are here to help & support you at this difficult time.

With hugs & love to all of you,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.