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What wonderful news for you and your family! I believe this is an answer to the many prayers made in your behalf.

You and yours will continue to be in my thoughts and prayers!

Hugs,
Pam

JToro,

I know it’s a hard decision but from my point of view, the unknown is sometimes worse than reality. I believe your children would imagine the worst if you went outside the home. I know you want to protect and shield them but sometimes we can teach them so many more things by allowing them to experience the less comfortable times.

You are already showing them that you are LIVING with cancer NOT dying from cancer. You are so strong and will leave two precious legacies whenever that time comes.

I’m older but I wouldn’t ever give back the experience of being with my Mom when she died. It was such a precious moment and I truly believe she went from our hands to God’s.

Just trust yourself and your instincts. You are an amazing Mom and you will do the right thing. You also know your children better than anyone. Maybe talk with them and see how they feel. You are also in the best place to gauge how they are handling this.

I guess I’m just trying to tell you not to close any doors and go with your gut. Mother’s intuition is usually right.

Hugs to you and yours!

Pam

Hi Rick,

I too struggled with this question concerning my Mom’s CC. I didn’t want to make Mom think about this before it was necessary nor did I want my Daddy having to cross this bridge.

So what I did was go to Hospice and sat down with them and asked them what did I need to know. I’m in the medical field and I knew we were getting close to the point that I thought they could be helpful. (such things as a shower chair).

They were amazing. They took my information and started a file on us. So that when the moment finally arrived, everything was pretty much done.

I know you aren’t in NC but here is the Greensboro link.

http://hospicegso.org/index.php?option=com_content&task=view&id=42&Itemid=58

There is tons of great information here including a section on how to know when the time is right.

I would suggest you just make an appointment and go and explain where you are and ask for their suggestions. They will not press their services on you or pressure you in any way. You would gain their insight and would be able to make informed opinions. You would also be able to guide your family in making choices.

I know how hard this is to think about. I believe knowledge is power.

Hang in there!

Hugs,
Pam

Hollie,

I am picturing my Mom welcoming Sophie home. I am so sorry for you and your family. I’m glad she is no longer suffering.

All of you will be in my thoughts and prayers.

Hugs,
Pam

Steve,

So sorry you’ve had to find us. I’d like to weigh in on the issue of your wife not asking for a prognosis.

I am a Cytologist and was in the unenviable position of diagnosing my Mom with Stage IV CC with mets to the lungs. Obviously I knew immediately what we were facing and how rare this cancer was.

I was upset and somewhat annoyed that she would not ask the prognosis and a few other questions when meeting with the oncologist. She was on her third visit before she told the oncologist to “hop up on the exam table” and then surprised me with a list of questions she produced from her purse.

As her illness progressed, I was cleaning up her computer one day and discovered after her inital CT scans when CC was first suggested, that she had bookmarked pages about CC. I also found note papers in her desk that she had scribbled on while learning to spell cholangiocarcinoma.

I finally asked her about this. I asked if she already knew the information and the prognosis why she didn’t confirm with the doctor until after the 3 visit? Her answer was she didn’t want to make the diagnosis “real” for my Dad, sister and me. She said she felt as if she could protect us from reality for just a while longer until we had grown comfortable “dancing” with cancer. Mothers!!!

You mention your wife is a nurse. Speaking as one in the medical field I guarantee your wife has someone (probably a Pathologist or Surgeon) she trusts and has run this by. I can promise you she more than likely knows everything she doesn’t want to know about CC.

My Mom was very computer savvy at age 76 and was still working full time by choice at a demanding job. I’m sure your wife has checked all of this out on a computer somewhere.

Give her some time. She may be protecting you in her own way. Cancer is insidious in that you are no longer in control of anything. She may be exerting control over what she can. Nurses are realists and intelligent. She will find her own way in dealing with this. Be supportive and by all means be there. Kris’s idea of a psychologist or therapist is an excellent one.

We are all here for YOU. You can always vent, unload, and anything else you want to do here. We have VERY broad shoulders and someone is always on the board. We are all on this journey together just at different “stops” on the way.

Hugs to you and Nancy.

Pam

Isisman,

YOU HAVE EVERY RIGHT TO CRY AND BE ANGRY ABOUT THIS!!!!! Your life has also been turned upside down and you are doing it all!

Being a caregiver is hard, sometimes thankless work!!!! I’m sure you are beyond tired, sleep deprived, scared, angry and at the end of your rope!

Is there any extended family that could help you or at least give you some time for yourself? How old are your children? Can they help more? Do you have friends or church members that could help?

I agree with your husband that the first rule for caregivers is that you have to take care of the caregiver FIRST!!! That’s easy to say but hard to implement. You have got to find some help and relief for you.

Please don’t ever feel you can’t vent here. Please let us know how things are progessing.

sending hugs (but wish it were helping hands for you!)

Pam

Rick,

I wish I could make all of this just go away for you. You’ve had to process a lot lately. The scan read incorrectly and now the insurance people. Along with a thousand other issues I’m sure! I think you’ve earned the right to be sick and tired of being sick and tired!!

Give yourself permission to just let it go for a moment! You’ve earned the title of Superman in my mind. You are an amazing man, husband and father! You’ve taken care of everybody and everything and kept a smile on your face.

I don’t think you’re ready to give up I just think you need a moment to regroup. Kris said it all in her post.

I’ll leave you with one of the verses I found underlined in my Mom’s bible:

Isaiah 40:31….But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Hang in there…we are all here for you!

Hugs as always!
Pam

Terry,

You bring tears to my eyes when you write about your beloved Wayne. It’s so obvious that the two of you shared a great love.

You should be very proud of yourself for the steps you are taking in your journey with grief.

When I lost my Mom to CC I really thought all of the events leading up to her death and the anticipatory grief would somehow make losing her easier. It doesn’t. It’s been a little over a year since Mom died and while it has gotten easier I find I can be blind-sided by the most simple things. I was in Walmart one night and someone walked by wearing her perfume and I lost it, disolving into tears.

I guess what I really want to share with you is grief is an intensely personal and private journey. There is no right or wrong way to grieve. It will get easier but only in its and your own time. We are all on this journey together. We’re here for you!

I’m sending hugs to you and your family.

Pam