Topic: need help --advice please!!!

I am reaching out for advice to those of you who have done this before.

My husband has stage 4 CC....in liver and lungs.

He is considered terminal.  No one can predict WHEN he will "terminate"
and we are proceeding w/chemo and hoping for the BEST amount and MOST
amount of time possible.

At the moment, he is doing great.  We have heard/read/seen stories where
people with his diagnosis have gone anywhere from 8 weeks (which we've now passed) to 3-4 yrs.  He is young and otherwise healthy.

Unfort. with this *#(&$# cancer, there is no predicting ...well, ANYTHING, it
would seem.

There are some VERY real and very hard realities that we will have to
face upon his death (well I will be the one facing them).

Finances, and raising 4 kids alone, seem to weigh the most heavily on my mind.

These are very real, and very serious issues, that are understandably hard.

I am TRYING to find a way to have "joy in each day" WITHOUT
CONSTANTLY worrying about the future...but I am finding it very hard.

We've talked a lot, put all things in order that we can--but there are some
things that will just plain be hard no matter WHAT we do now.

So my (long winded) question for those who have walked this path is this:

HOW do we put aside all the very real, very hard "fears and worries"
about what is coming and be joyful NOW? today? tomorrow?

How do *I* learn how to not worry every second of the day?

We haven't even hit the "bad stuff" yet (when he's REALLY sick and
not working and all that jazz...)  Those things give us BOTH anxiety too.

Terminal illness is really hard. 

The fact of NOT knowing when/or how long/ also makes it hard to make
any plans past next week ....

I would love some real life advice on what has worked for people ...

Thank you!

Dorien

(I hope I made sense)...

Re: need help --advice please!!!

Dear Dorien, of course you made sense. How Teddy and I got through was by talking, talking about everything and being very open, and then believe it or not we laced it with humor. You don't want to ever look back and feel you did not spend enough time making memories for you and the kids. As for finances I recall that others filed for disability when they could no longer work. I know this sounds weird but I always say when things look like they can't get any worse something always turns everything around and my kids (now in their 50's) said it was true. Not very scientific but somehow it always happened that way. When my daughter got divorced the oldest was 10 and the other 3 were 7, 5, 3. She never wanted to leave home to work until they were much older so she did Day Care at home and she made some decent money. I think she took in 500.00 a week and I am going back 15 years ago. Just remember where there is a will there is a way. So, my bottom line is, things will take care of themselves as you go along and try to just enjoy your husband and family and take it day by day, You will never be sorry for the attention and love you bring your family.

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 thebompie4 Tue, 30 Apr 2013 12:10:30)

Re: need help --advice please!!!

Thanks Lainy for your kind words and advice.

My husband is CONVINCED that everything will work out--he just feels like
it always does!!!

(he's usually right)....
this whole thing just makes me so mad (and sad and mad and sad).

at no one in particular...just that it "happened."

i (in particular) like to be "in control"...so this is especially hard for me.

(since there is no way at all to be in control)

Re: need help --advice please!!!

Dorien,

In my case things went so quickly with my husband I didn't even have time to think about anything.  I kept thinking we would find out what is wrong, fix it and go on.  Less than 2 months later he was gone.  All I can tell you is that things do have a way of working themselves out one way or another, as I found out.  The future will take care of itself and life will go on as it is meant to.  We have no control over any of it, so if you can, please try to focus on the here and now and enjoy whatever time you have together as a family.  I know that's not easy, but if you can live for now and not worry about the rest, you will have no regrets.  My heart goes out to you and your family.  Nothing about dealing with this disease is easy, but I truely believe we learn that we are stronger than we ever thought we could be.  Just take it all as it comes.  One day at a time. 

Love & Hugs,
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.

5 (edited by SusanLane Tue, 30 Apr 2013 19:31:43)

Re: need help --advice please!!!

I ask myself the same questions everyday. My husband told me how it makes him so sad to see me so sad. So I am trying to enjoy our time together and make each day a gift. I hope that is helpful. You are not alone.

Re: need help --advice please!!!

oh darla
that makes my heart so sad.

my husband keeps telling me i will be strong enough....sometimes i just
wonder. he has always been the strong one.

i'm so sorry for your loss.  it makes me cry real tears (everything
makes me cry real tears lately!) sad

Thank you SusanLane...my husband has said those exact words to me
as well.  I tell him we all love him, and that's why we're so sad.

I was reading the Last Lecture yesterday by Randy Pausch (sp?) and he says in the book version how after he gave this lecture, he invited his wife onto the stage and told everyone it was her bday and they all sang to
her and he hugged her tight and she whispered the words in his ear, "please don't die..."

it just about killed me...i can't tell you how many times i've said that to my husband.

it's nice to know i'm not alone. 

i will keep working on trying to enjoy NOW.

one day at a time.

Re: need help --advice please!!!

My heart goes out to you.  I have been going to a cancer support group & the pastor who leads it always says, "We are all terminal".  Only God knows the number of our days.  The only way I am getting through my CC is by the peace God gives & all the prayers  of friends & family.  God walks with us through all our trials & tribulations.  The joy of the Lord is my strength!  God bless you !

Re: need help --advice please!!!

Dorien, I too have the same fears and thoughts going through my mine none stop. I deal with a lot of anger, thinking why my husband. This wasn't suppose to happen to us. And trying to deal with all the questions that come from my 2 kids always asking why my dad!
My husband and I have talked about him passing on but when we do its hard for me to believe that it's actually really happening.
All I can say I take everything one day at a time. That's all you can do. I do believe some how some way things will all work out. Even though I have many days I wonder how.
I enjoy every day that I have left with him and thank God for it every day.

Sending prayers and hugs your way,
Michele

Re: need help --advice please!!!

Hi Dorien,
I am stage 4 CC. I have a terminal diagnosis with surgery, chemo and radiation not an option at this time. As for finances. I am in Canada so not sure if it is the same there as here. I have been off work since my diagnosis due to the nature of my work. I had sick leave built up so I went off work on September 12th and my sick leave runs out this May 7th. I applied and was accepted for Long Term Disability and also applied for Canada Pension Disability. I am the one that takes care of all the finances here. So I have everything in order. I have made sure that all of my payments that are due for things like cable, heat, lights etc. are coming out of our bank account as automatic withdrawal. Tis way my husband will not have to worry about bills. I do have life insurance at work so I have the paper work all filled out for that and I also have personal insurance which is all in order. We both have good medical insurance so that is not an issue for us and our health care system is quite different than yours. I took care of all of this as soon as I was diagnosed. I don't want to waste any time thinking or worrying about money. We spend quality time together. we cant afford to go on big trips or anything but we have been doing little adventures as a family that are not expensive. Our oldest son lives in Ottawa and is financially secure. He has a good job, so he will be fine. the other two boys are continuing there studies in University. I don't spend anytime being angry. I figure I have had a good life and I am continuing with it for as long as I can. I think this is life we are here and we are all going to die. I consider myself blessed with the opportunity to have the time to make sure I say what needs to be said and do what needs to be done. Some people get no notice and boom the are gone without being able to say their final good bye's. Am I sad that I wont meet my grandchildren or get to see my children get married of course I am but that is life! Do what you can with the time you have left. Upon my diagnosis I decided at that exact moment no matter what the outcome I was going to be positive and happy for everyday that I have with my friends and family! I can tell you that my husband is having a hard time with this and I have spoke with my Dr. about him and made arrangements for him to speak to a psychologist to help him deal with it all. I think it is important as he is going to be the leader of the family and I have to make sure he is ready to take charge when the time comes. Now I spend my time making sure that I build memories and that everything is in order for the boys and my husband to do what needs to be done to secure their future.
Bonnie

Re: need help --advice please!!!

Dear Bonnie, what a post! I think it should be repeated on this Board now and then. What an amazing woman you are. You hit the nail on the head. When one realizes they cannot change anything don't spend time and waste time on negativity, get your house in order, so to speak, and spend your time with your family in making good memories. If I can just add here, when we got Teddy's final prognosis of 6 months the ONC had it right, timewise. From that point on Teddy used to tell everyone that we were on our honeymoon! That is what I remember most!  Dear Bonnie, enjoy your Honeymoon.

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: need help --advice please!!!

Hi Dorien,
I'm writing from a different perspective - a daughter who lost her Daddy way too early (and I was 30 when he passed away almost 2 years ago)!  From day 1, Dad's attitude was "it is what it is" and really focused his time and energy in making sure that we spent quality HAPPY times together, and he couldn't stand it when we sat there and concerned ourselves with the later-ons, and the anger and the sadness.  We actually got into a few arguements because I kept telling him it WASN'T okay and it really bothered me that he accepted it so easily.  Thing is, I'm sure he really didn't accept it as easily as he let on.  I had just had my first child when he was diagnosed, and I know it broke his heart to think of everything he would miss with his kids and grandkids when he was gone.  He chose to help us deal with our grief in that year and a half from diagnosis to when he passed by letting us know that HE was going to be okay, and that he needed to know WE were going to be okay. 
Once I figured that out, my attitude really did change.  I decided it wasn't fair to him to make him feel somehow guilty by always being so upset that he would be leaving us, because clearly it wasn't his choice and was hurting him as much (or more) then it was hurting us, whether he let on that it was or not.  Once I got that through my head, it was easier to face, and we often even joked about it (believe it or not)!  He went to have a family ring made for my Mom out of his wedding band, and when the women asked when he needed it by, he said "well, soon... I don't know how much time I have left", and I burst into tears.  When we walked outside he burst our laughing and said that the tears were perfect, and that we may as well use the "dying" card while we could.  I remember starting to laugh and not being able to stop.  He had that ring in hand 5 days later... ha ha.
Anyway, long post that could have been much shorter, I think it's just so important for us to realize that our loved ones need to know that we are going to be okay.  It's okay to cry, and be mad and be sad, but I think we (or I, at least) needed to focus on helping THEM feel better... they are the ones that are going to have to leave, after all.
Now, 2 years later I am going to be having my second child (due just 3 days before the anniversary of his death), and as sad as I am, I really do know he's okay because he made sure I knew he would be.  You have a beautiful family (I'm obsessed with your blog and instagram, by the way), and you will be fine afterwords.  It won't always be easy, but like others have said, things have a way of working themselves out.  For now, just continue to spend time with him and your kids.  Make memories and know that it's true what they say... the memories will get you through.  Oh, and one thing I wish I had was something from him with his voice.  Sometimes there's nothing in the world I want more then to hear his voice.  Just a thought for your kids.  There are recordable books, and as cheesy as it sounds, I wish I had him read one for each of us while he was still healthy enough.  It's a small keepsake that would have meant the world.

Thinking of you and your family.

Jen

Re: need help --advice please!!!

Dear Jen, my wise little Grasshopper, I miss you! I so love it when you come on. You know darn well Dad is happy, why not? He is eating daily at Teddy's restaurant. I will never forget Dad dreamed about seeing a big table of food when he mmm was it...crosed the street or was it when he turned the corner.  Not sure when he told you about the dream. But we knew didn't we lil Momma? Is that adorable big sister excited about the new baby coming? I just know she will introduce the baby to the PaPa! Please let us know how you are after "birthing" ! Sending your family a ton of love and many hugs.  {}{}{}{}{} I miss Andie too. BTW Teddy has really been making many visits again. Where did the last 2 years go!

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: need help --advice please!!!

Hi Lainy,
I'm on here EVERY day.  Several times, in fact.  I just don't post too often.  Dad talked about the table of food he saw in his dreams, and I'm sure he went directly to have a nice big dinner after telling us he was going to be "stepping off the curb on a very beautiful boulevard to go to the other world", as he put it.  Funny you should mention that, as I have spent the last 2 days reading all my posts about those final moments.  Guess I must have needed a good cry, and that did it for me! 

Katelyn is very excited, and has even decided that baby's name will be Alyssa (which we like and will probably use).  The middle name will be Breh... pronouced "Bray".  It's Dad's name (Herb) spelled backwards.

I will certainly let you know how I'm doing.  So far so good.  Andie seems to be doing well, according to facebook.  She has her moments as I do, but we still chat once in a while about our dear Dad's.  I can't believe it's been 2 years either.  Love the Teddy stories - I haven't had a visit from Dad recently, but would sure love one!  I know he's around though, no way he'd be missing out on getting to know this little babe before she's born smile 

All my love!

Jen

Re: need help --advice please!!!

Oh, Jen, I LOVE the Babies name and especially Breh, what an idea. Maybe Dad is resting up as I was told recently that it takes weeks of storing up the energy to contact us and we should be sure to say thank-you to them everytime they come. When I look at my log I do see that some time goes by...no Teddy and then he converges on me. Bless you and your family you are just the tops! And please let us know when Alyssa Breh arrives.

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: need help --advice please!!!

Oh Jen...thank you so much~ for some reason what you said REALLY
touched me and resonated.

i am bawling like a baby--doesn't take much these days! HA!

I am laughing TOO, because every once in a while Kyle will say, "Well
if I have cancer, I may as well play the cancer card!" 

thank you thank you ! 

thank you all of you (not trying to leave anyone out)--
and I SO love the idea of recording his voice, it is something that will
dim w/time (our memory)--and my husband has THE BEST voice--I remember
when we were dating I loved just talking to him...very calm, quiet and
soothing!

Thanks for the tip! smile

Re: need help --advice please!!!

Well, I can't say I'm happy I made you cry (although a good cry is as soothing as anything else sometimes), but I AM glad I was able to give you another perspective.  That's the thing about this amazing group of people.  So many of us follow a similar path, but we all get something different from it.  It's good to hear other peoples thoughts, and somehow it helps to know you really (REALLY) aren't alone.  Once you are here, you can be guaranteed that someone you have never met will be thinking about you and praying for you and your family at any given second of every day.  It's a pretty incredible gift. 

As for recording his voice, do it sooner then later.  We bought books for Dad to record, but he suddenly went from okay to confused and they never got done.  Actually, that's not true - near the end he did read part of Twas the Night Before Christmas and we listen to it on Christmas Eve, but... it's not his voice.  Not the voice I remember from my childhood.  It's a tired voice.  It could be from meds, or high bili levels or just being too tired from chemo, etc. to focus, but it can happen suddenly, and then it's forgotten about.   

Thinking about you all!

Jen

Re: need help --advice please!!!

So nice to hear from you, Jen. I am wishing you all the best as you get ready for the arrival of Alyssa Breh. Please let us know how everything goes!!

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: need help --advice please!!!

Hi, Bonnie,

You are truly a different and courageous woman;even in sickness, you still plan for your family's future with such forward looking attitude and healthy mind set.

I have to tip my hat to you.
God bless you and your family.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: need help --advice please!!!

Thank you for your post here, Bonnie. You sound in a similar circumstance to me - my youngest is 15. I took a lot of comfort in your words and advice. smile

Re: need help --advice please!!!

Hi.  I read your blog and follow you on Instagram.  You have a very special gift with your writing.  I went back and read every post and sobbed.  Everything you are going thru I've been there twice now with CC.  Considering my two experiences on dealing with this cancer I should have a lot to offer on how to cope but sadly I don't. My brother was diagnosed in March 2012 with terminal stage 4 CC.  The journey was ROUGH!!! He was healthy and only 45!!!!!! He was very very strong.  I can only tell you that if I had to do it over again I wouldn't change a thing.  We worried, we cried (boy did we cry) we were angry, frustrated and more than anything worried about the future considering he was the rock of the family.  And obviously the main financial provider.  However one thing we always did was put our faith in God.  God didn't let this happen but he will get you thru it.  We never stopped believing in a miracle.  We didn't receive his healing here in this earth but we have survived.  Everything has since fallen into place and although we miss him so much we think back on the wonderful time and we know he knew how much we loved him!!!  Feel free to email me at any time if you have questions or just need to vent! We all here know what your feeling!

Much love and prayers. I think of you guys daily!

Annie
apkpnther@yahoo.com

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.

21 (edited by hercules Sun, 05 May 2013 04:43:04)

Re: need help --advice please!!!

dear Dorien,  my heart breaks for you and your family, and it is difficult to not let what you hope for distract you from what you have. God bless, Pat

Re: need help --advice please!!!

Thank you Annie!

Thank you Pat.