Topic: Learning to live after Cholangiocarcinoma

My husband was diagnosed with this terrible disease on May 25, 2012. He went to Heaven on January 28, 2013. His prognosis was 3-6 months so I know we were lucky to get the extra time. But, it wasn't enough!

I am looking for help in getting through this grief process. People who understand. People who have been there. People who won't tell me it's time to move on, start dating, leave the past behind me, but rather, who will give me some tips on how to breath, how to sleep, how to stop crying, how to start crying, how to ride this rollercoaster of grief and survive.

I have to be honest, there are times when I just want to jump off mid-ride.

Re: Learning to live after Cholangiocarcinoma

Gigi, here I am again. Not that what I did will work for everyone but it worked for me.
I used to spray Teddy's pillow with his cologne and just that aroma at night made me feel he was there.
I have always believed in the after life and even more so now. I can not tell you how much comfort I get from knowing he is always around me. I started a journal and in 2 1/2years have 88 entries. When I feel down I just have to read my log to know he is here. If you even partially believe I have a wonderful 1 page sheet that tells one what to look for and he has done so many of those things. We had about 5 songs that were meaningful to us and most of the time he comes to me through these songs. I keep the oldies station on in the car and I tell you he comes not just at any time but at moments like my meeting the kids for dinner, going to the Doctor, shopping. Its amazing. In fact I have emailed it to quite a few of out Members. Thinking...I am going to post it again, now.
There is also nothing wrong with asking your GP for something to take the edge off for you for awhile.
You can also join a grief group or talk to your religious leader if you have one.
Grief is a very personal thing and NO one has a right to tell you when to stop or ask such inane questions of you. If someone asks how long you are going to grieve just answer, until I am done!
Last but not least please do not jump ship! I am very sure that AL wants you to be happy and know what? He probably is not ready for you yet anyway! This I know, our boys want us to live and be happy and give it a little more time, it will happen. Post as much as you need to it does help to hammer away at the keyboard! Sending you an extremely big hug.

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: Learning to live after Cholangiocarcinoma

Dear Gigi,

I have been dealing with this for almost 5 years and all I can tell you is to do what feels right to you.  It's a real rollercoaster ride both before, during and after.  You will have good days & bad and all you can do is deal with it as it comes.  Try to take it one day at a time.  You can always come here for all the help and understanding you could every want or need.  Even just venting helps.  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: Learning to live after Cholangiocarcinoma

Hi Gigi,

I am dealing with the same feelings you are, except it was my 27 year old daughter, Lauren that passed away June 9, 2013. Grief can be so exhausting at times, can't it? I have found that keeping Lauren's memory alive helps me. My husband, Mark, and I meet at the cemetery every day after he gets off work. We have two folding chairs (mine is a rocker) and we sit by Lauren's grave and talk about our day and about Lauren. Some days I cry like a baby when I am there and other days I am ok. I made a photo album of Lauren that we can look at whenever we miss her. We talk about her all the time. When Lauren was sick, we wore wristbands that said Hope & Pray for LPK. I just ordered and received new wristbands that are bright green with hot pink writing and they say Remembering Lauren and there is a pink heart after her name. I got a tattoo on the underside of my lower arm with her name, a heart, and flowers around it. None of this really takes the pain of her being gone away, but it keeps her memory alive. I don't think there is anything we can do to feel better at this point. We just have to go through it and as my husband says every day, Let's just take it one day at a time. I write a blog and that helps to get my feelings out. I was put on antidepressants when Lauren was sick and I am still on them. I can't imagine what I would be like without them since I am a blubbering mess some days when I am on them! This is the hardest thing I have ever had to deal with as I am sure it is for you. Many people on this site have felt the same heartache we feel and they have managed to go on. This is what gives me hope. God bless you, dear Gigi, and I hope to hear from you again.

Love,
-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: Learning to live after Cholangiocarcinoma

Thank you, ladies. I appreciate your feedback. I'll get through this, I know, it's just so hard....

Re: Learning to live after Cholangiocarcinoma

My mom left us almost 4 months ago.  I miss her everyday. I still have the sweat shirt she wore the last. I have it hanging on my stairwell. I keep it covered so I don't lose her scent. Work keeps me busy.  My dad is trying hard to keep it together, but he has his moments.  He dreams about her a lot. He says in his latest dreams, my mom keeps leaving and he chases after her.  He says she is probably trying to give him a message to let her go and live his life. He is now living by himself and everything in the house reminds him of mom.  It is hard, but take it day by day.

Anna

Re: Learning to live after Cholangiocarcinoma

Oh My Anna, I so agree with your Dad. On the other hand 4 months is not long at all, trust me, you will know when it is time to start living a new normal. It comes on gradually, very slowly. Nobody says you have to put everything away that was Mom, keep what ever makes you comfortable. I am almost to year 3 without Teddy and knowing he is still around me is what has got me through. I think Mom is also showing your Dad that she is healthy and happy. I hope he keeps on dreaming. I used to sleep in Teddy's Tee shirts until the Grandkids wanted them! All in due time, all in due time.

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: Learning to live after Cholangiocarcinoma

P.S. Anna I also kept bottles of Teddy's cologne and sprayed it around now and then!

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: Learning to live after Cholangiocarcinoma

Gigi,

I don't know where you are in Texas, but if you are in the Dallas area, I'm happy to talk to you (well, really, I'm happy to talk no matter where you are, but if you are Dallas we could sit down sometime).  I lost a sibling 2 years ago (not to CC, but it was very sudden and unexpected).  I posted some of what I did on oceangirl's thread a few minutes ago. 

The other thing was to find something that meant something to me to do.  For me, since my brother died of complications of diabetes, I got involved in doing the JDRF Ride to Cure.  At the time I signed up for the 2012 ride, I hadn't been on a bike in years, but I signed up way in advance and I had something to do and focus on - training.  And fundraising.  My sister and I raised over $9000 that first year.  I did the 2013 ride the week before finding out I had this.  But, being involved in that community helped me tremendously. 

I don't know if there are any events like that - even local walks - for cc.  It's such a small number, maybe there aren't, but you know, the squeaky wheel gets the grease, so maybe it's time to make some noise and create an event.  That's how Koman grew.  From one tiny promise to a sister.


There is definitely something helpful about wearing a favored article of clothing.  I'm still wearing my brother's watch. 

I'm so sorry for your sudden loss.  In my experience, the people who talk about closure or who say it's time to move on don't know what they are talking about.  There's no closure here.  There is, however, trite as it sounds, the passage of time that lets fewer tears leak out and more smiles at happy stuff.  There are grief bombs, that come from nowhere, along the way.  You just have to ride through them the best you can.   Don't feel bad if you feel paralyzed one day or if other days, your brain is, at best, a big blob of oatmeal that can't be stirred. 

You might read The Year of Magical Thinking by Joan Didion, who wrote it after her husband died, very unexpectedly.  It's about that first year as a widow.  I read it after my brother died.

My thoughts are with you,

Lisa

Impatient patient.

Re: Learning to live after Cholangiocarcinoma

Gigi- my husband is still with me but there is still a grief process that goes on knowing I will lose him at some point. NO ONE has the right to tell you how to grieve since every one grieves differently. Helen Kubler Ross talks about the 5 stages of grief - denial, anger, bargaining, depression and acceptance. I always thought this was pretty accurate for grief. Everyone goes through the stages,  you don't go through them in order, you can revisit a stage and go through more than one stage at a time. Everyone deals with it differently from the person who removes every trace of their loved one in days to the person who leaves things unchanged for years. What you do for you is absolutely right for you.
I write....for me mostly but I have worked on writing "our" story about this journey....and I cry....of course when no one is looking.
You may look for a local bereavement support group....most hospices have one and you don't necessarily have to have had someone on hospice to utilize it.

Hang in there and we are always here for you.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Learning to live after Cholangiocarcinoma

The Cholangiocarcinoma Foundation supports the 2013 National Tandem Walks for Bile Duct Cancer.  You may read up on it in our blog (The Loose Leaf Notebook)
http://cholangiocarcinoma.org/wp/?p=307

Of course, we would love to see it extend to numerous other locations.  Please let us know if you are interested in attending or starting a similar walk in your area.  We will help you through it.

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