Topic: Introduction, hindsight

Hello Fellow Travelers,
I discovered this site a few weeks ago. I wish I'd found it sooner, but my husband's fight against cc was sudden and totally unexpected.

John died Oct. 24 at the very young age of 58. We have two children, 12 and 15. He was diagnosed Aug. 26. In two months time we went from being completely unfamiliar with doctors and hospitals, because we've never had illness in our family, to baptism by fire.

My husband was seemingly healthy, we thought. Now I look back and wonder at what may have been warning signs. Now, as a widow, I am besieged with questions about what John and I went through -- what is this weird cancer, where did it come from, why did it seek out John, did we do all we could to fight it, etc.? I could barely say the name until I found this site.

We were both so innocent that I didn't even realize what death looked like, until it took John. And he fought the cancer to the bitter end, so in two short months I think he barely absorbed the idea he was dying.

There are so many things I could address in this message, that I hardly know where to start: the doctors, the medical facilities, the treatment, the path of the disease, the causes, my husband's good health and healthy lifestyle, hospice, what it was like for him when he died, how this feels like it was as sudden as if he'd been killed in a car wreck, etc.

So I think I'll keep it simple to start with and just say that there is a part of me, after having read some of the posts that you have left, that would like to go back and read through all his medical records to try and better understand what happened. He and I were so overwhelmed and in shock in dealing with the cancer, that it was as if we were being tossed by waves, rather than having any control at all of what was happening.

Sorry this is so vague and unfocused, but I have appreciated the posts that I've read so far and find them very informative, particularly as I try to understand -- looking back -- what just happened to my husband, to me and to our family.

Sincerely,

Margaret

Re: Introduction, hindsight

Dear Margaret welcome to our family and I am so terribly sorry about your husband and yes he was young. None of us know exactly about CC ourselves. It has not been proven yet where it comes from and the worst part is one usually does not know they have it until at a later stage. The best cure is surgery but that does not always do it and many times it rears it's ugly head again. Then again we do carry HOPE as we have some MIRACLES on our Board. The only thing I know for sure are that people on this Board are the kindest, lovable and caring people from all over the world. It will take you  some time to adjust to living your "new normal" but things will ease up down the road, I promise  that. You have 2 children to focus on and please know that John will be all around you and the children forever.

Letter from Heaven  by Ruth Ann Mahaffey

To my dearest family some things I'd like to say
But first of all to let you know that I arrived okay,
I'm writing this from Heaven. Here I shall dwell with God above
Here, there's no more tears of sadness. Here is just eternal love.
Please do not be unhappy because I'm out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said "I welcome you,
It's good to have you back again,
you were missed while you were gone,
As for your dearest family, they'll be here later on.
God gave me a list of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
One thing is for certain though my life on earth is o'er
I'm closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
Together we can do it by taking one day at a time.
When you're walking down the street and you've got me on your mind
I'm walking in your footsteps, only half a step behind
And when it's time for you to go . . from that body to be free
Remember you're not going . . you're just coming here to me.

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: Introduction, hindsight

Hi Margaret,

WOW!  I thought I was reading my own post from 5 years ago.  Your situation sounds so much like ours with just a few small variations.  Jim had just turned 62 and we never even got to the point of hospice as he died the day I was setting it up.    I found this site a few days after he passed and have been here ever since.  Other than that, your post could have been mine.  Our journey was also a short 2 months from active and healthy to gone and I felt much like you and had many of the same questions.  I also felt the need to go through all the medical records, but I must tell you that it was very hard and brought back so much and more of what we went through that I don't think I ever got through the whole thing.  The pages are all still sitting on the shelves in the closet.   I still try to read through some of it from time to time.   

I can tell you that you have found the right place to be.  I learned so much and got so much comfort from all the wonderful loving, caring people on this site and hopefully have also helped a few along the way.  I'm hoping you will stay with us as I'm sure you will benefit from being here.  Here we have all been there and many are dealing with this disease now.  We all understand and we all care more than anyone else who has not experienced anything even close to this ever could.

Going through something this traumatic changes you and is a lot to handle, but although you could never tell me back then that I would be OK, I can tell you this.  You will survive.  Your life will never be the same, but you will be OK.  It took me a long time to get to this point and I still have days I wake up wondering if this all really happened and how I have survived, but it is true that we are never given more than we can handle and that we are stronger than we ever thought we could be.   

It takes time, and these are early days for you, but as time goes on try to remember all the good things about your life together and although the rest never really goes away, it will fade some and you will be able to take some comfort in remembering  the life you once had.

Just take it one day at a time.  There will be a whole lot of emotional ups & downs and many set backs, but just keep on taking it as it comes, even if it is just one minute at a time.

Know that I am thinking of you and hoping you are doing OK.  Take care and keep coming back.

Lots of 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.

Re: Introduction, hindsight

Lainy, I have ready your comforting and helpful replies to others and have admired your generosity of spirit. In reading your reply to my post, it was overwhelming in its kindness. I appreciated the poem, which I will keep close, as it's just what I need to hear right now and probably for a long time to come.

It brought me to tears, of course. Well, convulsive sobbing actually, as that's still where I'm at.

The poem touched me because with John's speedy departure and the shock that we were both in, we really didn't get to say goodbye. It was as if we didn't even know what was happening to us. I am only now coming to my senses, I think.

Thank you Lainy,

Margaret

Re: Introduction, hindsight

Hi Darla,

Thank you for your reply. I didn't expect to hear from someone so quickly, especially someone whose experience was just like ours. (Hospice was in our home for a little more than 24 hours).

I thank you for writing the reply and sharing your experience, which also brought me to tears. Perhaps I'll request the medical records, but take my time reading them or not worry about it for years to come, or maybe never. I can see how it would be terribly painful.

I appreciate your labeling this situation "traumatic" because it does feel as though our family was hit by a bomb, and, like you, sometimes I wake up and think that surely it didn't even happen. Yet the world keeps turning just as it was before John died, just not the same for me or him. Like you said, I know I have been changed forever.

I was so encouraged to learn that there is an organization like this, for two reasons: John's battle with this cancer was amazingly similar to that of others, which is helping me understand what happened; and the fact there is a concerted effort to gain information about this cancer so people can fight it more effectively.

Thank you again and I do plan to keep reading the forum, and hopefully some day I can add information that will be helpful. I'm glad, for example, that there is some effort to improve the palliative care, so I may have some comments to make to that discussion.

Thank you again!

Margaret

Re: Introduction, hindsight

MARGARET please don't just read what I am going to write but really take it in! You will never, ever have to say Goodbye! I believe that with real love (Like Darla and Jim had also) our guys will always know what is in our hearts. From now on we are so a part of them and they are so a part of us. I know that half the members here think I am a little old nut and that's OK. All right maybe more than half. I just want to say that I became a believer in the beyond and wowser did that get me through. It all started a week after T passed. I decided to keep a log of all his 'visits' and in 3 years am up to 97. It brings me more comfort than anything else. I always have the grandkids alert too for visits from Papa. It seems to help us all. The other trick is when I am feeling really down I say to myself, "shame on you, you had for 16 years what most never have in a lifetime". That does it for me. I hope you will find some little tricks that will work for you too. Remember its to soon to expect any different than how you feel now. Let me know if you believe and if so I can email you what to look for. Take care and write us as much as you need to, we are glad you found us sorry you had to.

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: Introduction, hindsight

I am a believer, and am counting on that helping me rise above this tragedy.

Like you, I also believe in little miracles sent by my husband. He was a photographer and a writer, first in the newspaper business and then in public relations, and always talked about getting the light right whenever he took a photo.

To my amazement, I've had some interesting and funny encounters with light since John departed this world. I think that has been his ironic and funny way of encouraging me to have faith and carry on.

Please do email me. I find it so beautiful that you have received so many visits from your husband. I'm trying to talk to my children about this. So I'd love to hear about your experience.

Thank you!

Margaret

Re: Introduction, hindsight

Margaret I will email you the Signs to Look for and BTW we are attempting to put a book together of our loved ones who have passed and I will e mail that to you as well. Sorry you have to be aboard but glad you are here.

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: Introduction, hindsight

Margaret,

One more thing we have in common.  We too were in shock and at first didn't see what was actually happening and how swiftly things kept changing.  We didn't get to say a proper goodbye either as we thought we had more time. 

I too am a believer and have had many signs as has one of my sons and also Jim's twin brother.  I have started an introduction and some notes and plan to have enough for a chapter in Lainy's book and hope you too will participate.  It is comforting to know they are always near us, isn't it?  The signs are their.  We just have to be open to them.

My heart goes out to you and your family.  Take care.

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.

Re: Introduction, hindsight

Margaret....You already have received a warm and loving response from Lainy and Darla.  I too would like to welcome you to the club no one wants to belong to, but is glad to have found. Time does not take away the pain of the loss however; time does allow us to accept it better.  So glad that you have found us.
Hugs,
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: Introduction, hindsight

Lainy,

I for one do not think you are an "old nut".  If you are, then so am I.  smile

Like you, I also take a lot of comfort in knowing that I had something a lot of people never had or will have in the relationship that Jim & I shared for so many years and for that I am grateful.  However, that said, I will repeat what I have said many times before.  I just wanted more.  Selfish huh?

Love Ya,
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: Introduction, hindsight

Margaret, Welcome and sorry you had to find us. This site is amazing because people get it, people who haven't "walked a mile in our shoes" think or try to get it but real can't grasp how CC takes you from normal to hell in moments. Sometimes it is hard for me to post on this site because I am 7 months from my 5 year cancer free mark which means  I won while so so many aren't. The reason I am posting is because of your comment about "like a bomb exploded and life keeps going on". Surviving cancer should mean sunshine and lollipops but life isn't as simple as it should be, so I sought therapy and it was such a major help. My therapist after crying and being in a state of awe over my story, held my hand and said "Cathy you have PTS, what did you expect ". Margaret, I can't express enough how much talking to some one who really had no majic pill or cure helped, because she got it. Margaret, I have a feeling you would have the same diagnose.
Margaret my heart breaks for you and and your family, and I can only offer my prayers, love and support, keep posting.
Cathy

Re: Introduction, hindsight

Hi Margaret,

Welcome to the forum although I am so very sorry to read what you have gone through.  I'm not surprised you have so many questions after such a short space of time.  Can I suggest if you are going through medical records that you have  someone that can take the time to explain what is in therefore and translate it all into terminology that you will understand.  I don't mean to patronise you by saying that but medical jargon is a whole other language and when giving information it has to be given in a way that you will understand, not the medical professional giving it.

Clare

In the stars now . . . .

Re: Introduction, hindsight

Margaret,

I'm so sorry to hear what you've been through.  My heart goes out to you and your family.  I can relate, as my husband, John, is 54 and officially diagnosed on November 1.  We also have young children - 9 year old twin boys.  We are currently exploring all treatment options, clutching onto any ray of hope we can find.  This disease is so terrible and so quick, it does make your head spin.

I just wanted to welcome you to the site and add my support and love to that of the wonderful people here.  Feel free to email me if you'd like to talk.

Mary

Re: Introduction, hindsight

Hi to all of you who have replied. You are all such wonderful, loving and caring people. It brings me to tears to read the messages.

Thanks to those of you who are diagnosed with cc. You are very sharing that you reach out to me. Strangely, this disease hit my husband so hard and fast, I don't think he even actually knew the official name of it, or if he did, he hadn't had any practice saying it, nor did I. My husband also had a very bad case of ascites -- another word I don't think he knew, nor I. I've only this week begun to read about it.

As I may have mentioned, I'm now trying to read these forums to figure out what happened to John (I don't think it's right for me to claim his battle as my own -- my wonderful husband is the one who paid the ultimate price and was so courageous and brave through all of it. My challenge through this has been a different one.)

Cathy, the PTSD has been an enlightening comment -- I hadn't thought of it that way. But I think it's absolutely true. I'm happy for your success in battling cc!

Also, Clare, I definitely don't think your comment to get help with the medical records is patronizing. When I read the forum messages and see how much knowledge all of you have about your cc or that of your loved one, I'm just amazed and very impressed. My husband and I didn't know any of this, and he was a very intelligent, well-read person.

Darla, Lainy and Marion thank you too. And Mary I am thinking of you with your husband's recent diagnosis and your young sons. I'm asking God to wrap his arms around your family.

When I was so in shock trying to help my husband and not even knowing who I was or what was happening, I tried to tell myself that my hands were those of Christ's — I just let him take over my body and use it for the loving care of my husband. Some days that was the only way I could function. I know I must sound crazy. But that's the way it was.

One question about a common theme that I see in these posts -- cc is a roller coaster. Why is that? I can honestly say that's how it was for our family. I told my sister one day that every day brought a fresh round of chaos. Do other cancers not behave this way? Is this unique to cc?

Again, thank you for your love and caring. You are in my prayers!

Must go and help my 12-year-old who has a cold. ~

Margaret

Re: Introduction, hindsight

Margaret our roller coaster was named because we can be on the highest high and then drop to the lowest low in diagnosis, treatment and outcomes of scans and oh, just everything to do with CC. I always say CC is only for the brave and the strong. No matter what though this is the most caring, loving, kindest, bravest and smartest club (family) the world over. From patients to caregivers no one is ever too busy or too ill to help another member. I truly believe that if we ran the world what a glorious place it would be.

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: Introduction, hindsight

Amen to that Lainy.  smile

Margaret, if you stick around you too will know more about this disease with the strange, hard to pronounce name than you ever though you could or would want to know.   I do think it is unique in so many ways from other cancers as  you never know what to expect.  How it will act or react to anything.  It is very unpredictable.  Not only is the cancer a roller coaster ride, your grieving will be too.  With many ups & downs.  It goes with the territory.   I am beginning to see that many of us that have dealt with this more than likely have a form of PTSD.  What we went through and are going through is about the most traumatic thing I can imagine.

The good news is that in the 5 years since my husband passed away I have seen much improvement in both diagnosis and treatment of CC.  There is more knowledge, better treatment and also more successes. Unfortunately it comes too late for our husbands, but hopefully will help others in the future.

Hope your 12 year old feels better soon.  smile

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.

Re: Introduction, hindsight

Margaret,

I missed these earlier posts. I think we were at my in laws, who don't have internet. I'm so sorry about the sudden loss of your husband, John. I ran across something you posted tonight and looked at your earlier posts.

I have to tell you, you are the first person I've seen here from the Dallas area other than me.

While I haven't lost a spouse, I lost my 48 year old brother in March 2011, very unexpectedly. Not cholangiocarcinoma, but, unknown to us, he had been diagnosed with type 1 diabetes (in his 40's). Unknown to him, he had acute pneumonia and the combination was fatal and fast. I had a police officer show up at my door to tell me he had been found dead in his home in Lake Tahoe and we had to wait on his autopsy. I only tell you this to say that I understand sudden, unexpected loss and the completely unreal ways your life changes as a result.

Several things helped me walk through those early days. One, a friend told me grief is a process, not an event. That is so so true. Second, I did have signs from him and I believe they were to let me know he was okay.  Third, it helped me to talk about him, a lot.

So, if you ever want to meet for coffee and talk, I am here.  I'd be happy to meet you at a mutually convenient place. Your husband was only two years older than me.

Lisa

Impatient patient.

Re: Introduction, hindsight

Margaret....100 Questions & Answers About Biliary Cancer written by Dr. Ghassan K. Abou-Alfa, and Dr. Eileen M. O'Reilly (husband and wife) and funded by the Cholangiocarcinoma Foundation may help you in the quest of understanding this disease.  Please know that it is free for download.
http://cholangiocarcinoma.org/bookorder-ebook.htm
Hugs and love,
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: Introduction, hindsight

Thank you Marion! I'll definitely download the document and give it a read.~
Margaret

Re: Introduction, hindsight

Margaret. God bless you and your family. My husband has terminal CC and was given 6-9 months at time of diagnosis three months ago. We have hospice care now. I feel so bad that you didn't have a chance to say good-bye. My husband and I talk about what things will be like after he is gone. It is very hard but he finds it comforting that after 43 years I will probably be able to go on without him. I am crying as I type these words because we have been together since we were kids and I don't remember much of my life before him. But like Lainy, we are very spiritual people and believe that we will join God in heaven when we die. But my silly guy tells me all the time that I should look for signs that he is here with me after he dies. And I surely will. Take care. Nancy

Re: Introduction, hindsight

Hi Nancy,
What a sweet note. Thank you for posting. I'm so sorry that you and your husband are even facing this. I'm so glad for the two of you that you have your time together. I can surely understand why typing that note made you cry. It's making me cry too.
It's wonderful you have had your 43 years together, and met when you were kids. I can only imagine all the growing up you did together, and wonderful times, and learning how to be a couple together. My husband and I had that also, and I was so looking forward to being old together.
The two of you are blessed to have one another. Taking care of my husband was an  exhausting, chaotic time, but a time that I treasure so much. It was a sacred blessing to be with him.
I know this is very hard, but I can't help believe that your memories of now will later be reassuring because of the conversations you've been able to have.
Like you, I believe I'll join God in heaven too, and the fact John is there already makes me look forward to being there.
I'm wishing you all the best, and peace and comfort for your husband. Please continue to let us know how you are doing. I send a warm embrace to you and your husband from the depths of my heart.
Margaret