Topic: New to this site

What a wonderful sense of family I have seen while reading posts on this site.
My husband John was diagnosed with CC on 26 Nov 2013 - just 10 weeks ago.
Up until that moment he was a seemingly healthy 61 yr old butcher who was a strong hard working man and everyone loved him.
We have faced many decision making moments in the last few weeks: first it was do we have a liver biopsy to confirm the source? We did and what we thought was pancreatic was actually CC.
We waited to enjoy Christmas with family before discussing chemo. Johns initial CA19.9 (tumour marker) was 72,000 then 4 weeks later it was 298,000. He decided chemo was not an option for him. Within another 3 weeks the marker level was 580,000. We are at peace with our decision not to fight this. His Oncologist agreed that it would only prolong his life by a matter of months and the side affects v quality of life was his decision.
Our three sons are adults although one is autistic and lives with us and all live nearby.
We are hoping that John can stay at home with the help of the community hospice service. This is an unknown journey and today it really brought home to me just what this is all about when he had an excruciating shoulder tip pain. It is now under control and I write this as I lay beside him sleeping. I know I will devour every comment on this site over the coming weeks as we walk this path together.
Thank you for being there.
Judith
Queensland, Australia

Re: New to this site

Dear Judith, welcome to our extraordinary family but I am so sorry to hear about your husband, John. Know that you have made the best decision, I have been there too. My husband fought a valiant battle for 5 years and when the Doc offered Palliative Chemo Teddy asked him how long that would give him and the ONC said you have about 5 months and the Chemo would give you 6. Teddy said, no thanks. We never looked back and we never regretted the decision he made. We called in Home Hospice right away as they really do make the patient more comfortable. I ordered a hospital bed as it is more comfortable and as time goes by the side rails help them get up and down. As he spent more time in bed I also bought a sheep skin sheet as it too is for comfort. Hospice brought the bed, a walker, a wheelchair and a commode which he never used. Toward the end I asked for Oxygen as it really helps relax the patient which helps with any pain. Bottom line is comfort so if you get to a point there is pain call the Hospice immediately and they will send out something. It is great that all your sons live nearby! Be strong and take care of yourself as well. We are all here for you so you are not alone in this Journey. Take care, be strong and you are now part oaf our 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.

Re: New to this site

Judith -
So sorry that you had to join our little family. It sounds like you have both thought this through well and come to a decision that you are comfortable with. I wish you the best through this journey.
I am very glad that you have hospice involved and remember that they are there to support you in anyway that you can. If you have problems or questions do not hesitate to call or ask. If your hospice is anything like ours in the States then they should be available 24/7 to assist.
Treasure every moment, take lots of pictures and don't forget to laugh. This can be so depressing and can drag you down. As they say Live, Laugh and Love trying not to dwell on the disease.

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: New to this site

Dear Judith,

I too would like to welcome you to our CC family.  This is the best group of people you will ever meet.  Sorry you have a reason to be here, but glad that you found us.   It sounds like you are both comfortable with the decisions you are making and that's all that really matters.  Know that we are all here to help and support you in any way that we can.  Take care and let us know how you are doing. 

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: New to this site

Welcome, Judith, but so sorry that you have reason to seek us out.  Sounds like you and your hubby have thought this through and come to a decision that you are comfortable with.  That is so important, to make a choice and know that it is right for you and your family.

I hope you make some more happy memories and take advantage of the help that you have. 

Thinking of you and your family

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New to this site

This site is so wonderful.  I was diagnosed in July 2013.  Still doing chemo since the tumors are responding.  I use this site to say the things I can't tell my family and friends.  And the response is overwhelming.  And it is open 24/7 so there is no waiting.  Frequently someone is on-line even in the middle of the night.  It is so powerful knowing that those who are listening really understand you and what you are going through.  Welcome to the family, Judith.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: New to this site

Judith.....know that we are with you, behind you and beside you all the way.
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: New to this site

Judith,
Welcome to this wonderful and supportive family. I am so sorry you are going through this. I will be praying for your family.
Peace
Lisa

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: New to this site

Hi there Judith.
So good to have another member of the family living in the southern hemisphere!  I am in South Africa.
One thing I have learnt from this wonderful group of people, is that their advice is practical and is given from personal experience.  That helps alot.  So often people want to offer advice out of the kindness of their hearts, but do not know what they are talking about, because this cancer cannot be compared to others.
When this group suggests a medication, I check Google to see what it's make-up is and then ask my local pharmacist if we have a similar product in SA.  "Trade names" of medication is not always the same throughout the world.
All the best with your husband.  My husband went through different tests between October 2013 and diagnosed with ICC on 29 December 2013.
Looking forward to getting to know you better as we share out life experience together.
Stella!

Re: New to this site

Hi Judith, welcome to the cc family  Wanted to reach out and say hello and extend a warm welcome.  Blessings and prayers to you and your family.

Hope, love, strength...2013 and for the years to come, Porter.

Re: New to this site

Hi,

Generic names are universal languages for medications; try to find the generic names first in your country and but them;
Generic medications are the "Trade name equivalent " of that drug and should not make any difference in both drug efficacy and side effects. If the patent of the Trade name drug was not expired, get the name of the generic and bring it to a pharmacist to look it up for you in your country for the Trade name drug your country used. This is his  responsibility as a Licensed pharmacist. If I were you, I will just give the Trade name used in the States to the pharmacist and let them find it out for you. if they don't know or don't have time, go to another pharmacy.

God bless.

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: New to this site

Hi Judith,

I just wanted to say hello and welcome.  My sister made the decision not to have chemo - sometimes the right decisions are the hardest ones to make.

You will get so much support here for not just your husband but yourself and family too.

Clare

In the stars now . . . .

Re: New to this site

Hi Judith,

I would also like to welcome you to this site. Your husband has made a decision and his wishes must be honored. My daughter, Lauren, was offererd surgery, something we never dreamed would be possible. She went for it wholeheartedly and sadly passed due to complications. The point is that she did what she wanted to and although we are so sad without her, we are happy that she was given a choice and hope. My heart goes out to you both.

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: New to this site

Judith, our stories are so similar. My husband was diagnosed in November of 2013. His biopsy confirmed intrahepatic CC. His tumor was large and nonresectable. He has some other health issues, so he decided not to pursue treatment. Hospice care has been a Godsend for us. He suffered an odd bout of pain in his chest that he said felt like an ice pick stabbing him. The hospice nurse was here in less than an hour and with meds he was fine. He has many good days and hours although he sleeps most of the time. He is 63 and we will be married 43 years next month. So far, no other pain and only a few bouts of dry heaves, also treated with meds. I hope you and your husband have amny more good days together. God Bless.

15 (edited by Judith Sat, 22 Feb 2014 15:31:53)

Re: New to this site

Hi Nancy. Thank you for your reply. We are walking a similar path. I am thinking of you and wish you quality time with your husband. Although Johns blood tests continue to deteriorate and he is needing a higher dose of slow release oxycodone, he is comfortable and still able to do things for himself. I have taken leave from work to be with him. Keep in touch and take care.
Judith

Re: New to this site

Hi Judith,

I'm an ex-Queenslander and read this forum because my husband has had intrahepatic CC. He is currently clear after 2 resections, 2.5 years after it was first found.

I understand your husband's decision, but just wondered if you or your husband's doctors have spoken to the liver unit at PA in Brisbane? They would be the biggest in the state.

Best wishes,

Genevieve

Re: New to this site

Hi again. I would like to let you know that my dear John passed away exactly 4 months after his diagnosis on 26th March. He had 3 good months then very quickly progressed after that. That last 5 days he was confined to bed with a pain relief pump. The hospice nurses were a wonderful help and support coming daily for those last 5 days. He passed very peacefully with all the family at his side.
Just if you are interested, the week before he died we had bloods tested and another CT scan just to see if his swollen abdomen had any drainable fluid. The CA19-9 tumour marker had risen to 1.8 million (it was 72,000 at the beginning). The liver was huge and covered with metastases and this caused the swelling and not any fluid or ascites.
My family and I really appreciated the 10 signs to end of life and it helped us to understand where we were on the journey. Thanks Lainey. I have also been interested in reading the messages on after-death visits.

Thanks everyone for your support - to those fighting this disease My thoughts and prayers are with you.
Judith

Re: New to this site

Dear Judith, I am so very sorry but like we all know John is now home and at Peace. I will send you the signs to look for from John.

From John to Judith:

If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.

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: New to this site

Judith, I'm so sorry for your loss. I guess I missed this thread entirely, as I spent most of February in the hospital. I hope that this forum will continue to give you support. The best advice I ever got (when my little brother passed away unexpectedly 3 years ago) was that grief is a process, not an event. It is true.

My best,

Lisa

Impatient patient.

Re: New to this site

Dear Judith,

You and your family have my deepest sympathy.  Try to take comfort in knowing that John is no longer suffering or in pain.  Know that he will always be with you in your heart and memories.

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: New to this site

Dear Judith,

I am so very sorry that John has passed.  There is little I can say that will make this better but you and John are in my thoughts.

Clare

In the stars now . . . .

Re: New to this site

Dear Judith,

I am very sorry for your loss.  I' hope in time the memories of the past few good months and the years beforehand will bring you comfort.  And, I appreciate that even in this time of loss, you were caring enough to share information which might help others with such grace.  Thank you.

Take care,
Catherine

Re: New to this site

And now it is time for you to start healing.  Everything happened so fast for you.

Stay with us.  We are here for you, now and always.

Fighting with dignity, not desperation.

Live, Laugh, Love