You are not logged in. Please login or register.
|La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Join our new Mentoring Program
A new discussion board experience is coming this September!
After 10 years, we're upgrading our discussion board to a new modern system. The new forum will be easier to use, mobile-friendly and loaded with new features! We'll be taking all of the existing posts and users over to the new board, you won't have to do anything. If you have any questions, we've started a thread here to discuss.
Posts found: 9
We ended up in the oncology ward of a small local hospital and it was wonderful. They had a hospice attached but it was really too late to move him to it. He died in a beautiful room with a large window looking out on the bushland.
The funeral was truly beautiful and attended by about 300 people.
We have now made a donation of the proceeds from a collection box at his funeral to the following cancer research centre: Chris O'Brien Lifehouse. Which was being built when he was at hospital across the street (when we still had hope).
It is a shame he won't get to see it when it is built. We were truly amazed to see how much money was collected from the people who attended his funeral.
I can't wait to see it finished. I may start doing art again to see if I can auction some of the canvases off to raise some more money for it.
When I miss my Dad I just look in the mirror and I can still see him.
I do intend to keep visiting this site.
There is not enough focus on this type of cancer.
I feel that my journey with this has only just begun.
We have started by asking our friends and family that in lieu of flowers people donate to an Australian liver cancer foundation.
Second step is to buy the wonderful nurses and doctors at RPA Sydney a coffee machine.
Third step is to start campaigning. I was told not many people campaign for more focus on this disease because there are few survivors. Fewer survivors than breast or prostate. That's ok because I feel like I am carrying Dad in me and that is how he now survives.
I have gone quiet because it is all over now. He left hospital 2 weeks ago with no chemo or radio done as I said in a prior email. He had one week at home. Then one week dying in hospital. My father was told a few years ago that he had the heart of a 17 year old. This was a curse because it prolonged the agony of the final coma. He died in our arms 9 weeks after his first symptom..
I have decided that there is one thing to say about this sorry waste of a great man.
Life throws up challenges. Life is unfair. The sooner we realise that the sooner we can get on with our lives.
I wish to thank everyone on this site for their messages of support. They have helped immeasurably with the heartbreaking of moments.
All the best
Kerryn (a very proud sugar plum fairy)
Thank you for your thoughts and words. We now have Dad at our home. He has a fair few enjoyable moments but things are getting just a little harder.
Lainy thank you again for your suggestion to start looking at hospice care. We were talking about it but didn't know when it would be appropriate to go to it. There is a nice one a few minutes from our house.
I might go and have a look tomorrow.
Thank you everyone for your messages.
Despite having an incredible person for our surgeon who has put in 2 metal stents and 2 plastic stents over 5 weeks we have been unable to get the bilirubin down to chemo levels. We are sitting at 240 as of yesterday. The surgeon says he suspects it is because his liver is failing.
Dad has started to look bloated in the stomach and around the legs. He has been told to decrease his fluid intake and is just starting on the fluid tablets.
We are also taking him home as all forms of radiation have now been ruled out.
I find it hard to believe we have been unable to do anything about this cancer. We didn't even make it to chemo or radiation. Unbelievable to think first symptoms were 6 weeks ago so today Dad is being discharged with nothing further for us to do.
I wonder how long we have???
I can tell you all now that we are feeling much more positive. In my new pursuit to make the most out of each moment I went out and bought Dad his birthday present that he should have gotten the week after hospital admission. It was a nice surprise for him and liberating for me - I made sure he got Godiva choccies, a good comedy DVD and Harrods jam etc. I also told him and my mother about the wonderful advice I have received from this website. I think it made my mother feel better and more free if you know what I mean. My dad just smiled and nodded and I am hoping that he thought about it last night when we all left his bedside at hospital. He seems better today.
Living in the moment. That is very good advice.
I will really try as hard as I can to do that. I really needed to hear that really. No one in my family has said that to me. I can't really imagine how my mother is coping. I haven't really mentioned anything about what she is going through. They were made for each other. Symbiotic when married for 46 years. I will tell her to try to live in the moment when I see her crying next...She is a trooper so when she loses it Dad loses it... and then we are all crying our eyes out.
I have never ever really lived in the moment.
I will try to imprint anything I can.
Thank you for the advice.
Thank you Cathy, PCL1029 and Lainy for your messages. It gives me so much comfort to know that I am talking to people who have/are going through the same horrors. Lainy I know on an intellectual level that I have the rest of my life to grieve but it is so hard. I found myself looking into cryonics something I would never have thought of looking at. My dad told me when he was first diagnosed that he wasn't ready to go and he was disappointed that he will miss out on these wonderful years with all of us and our children. I know cryonics is such an extreme thing to think about but there you go I am desperate. I know he would never agree to such a thing he wants to be with us all now. Being brought back in 50 years is no good to him or us.
Then I look around the ward and I see a 40yo father of 2 kids under the age of 7 who was told (while I was present and could hear) that he had 2 weeks to 9 months (he has liver cancer that has spread everywhere). He is a lawyer like me and not too much older than me. Then I think wow my dad was lucky to see my brother and I grow into adults and even meet his 4 grandchildren.
Then I look at the bed next to dad the 62 yo guy in that bed has had a partial hepatectomy which got rid of his cancer. I think he has 80% of his liver left and I feel envious.
I have the best Dad in the world (65yo). He was the big athletic man's man. He used to call me his sugar plum fairy. He gave me and my brother the lions share of his free time when we were growing up. He had never ending time to listen to us and share in our every growing up moments. As a young kid I would sit on his knee after he mowed the lawn and smell the cut grass and despite being stinky and sweaty he would let me give him a big cuddle. I rearranged his car when I learnt to drive and he didnt say a bad word about it. My house is now full of the furniture he has made for me and my family.
Only 6 weeks ago my life was pretty damn good, my husband and kids and I just moved into the new house that my Dad and I just painted together, Dad (who lives 200km away) was playing his usual tennis comp my mum and dad went out for dinner and he was ill that night. A few days later he called me to tell me the GP said he had cholangiocarcinoma and it was 9 x 8 x 4 cm. He was then told that he had about 8 weeks to live.
We got him to the best hepatabiliary surgeon in Sydney we were pinning our hopes on him but he would not operate too.
It is intrahepatic with satellites in the liver and it has surrounded the vena cava metastisised to lymph nodes up the aorta in the chest. Surgery is not an option and we have been spending an agonising 5 weeks attempting to get his bilirubin under control with stents. We are hoping to give him gem/cis chemo in the event it comes down.
I am distraught especially at night in the dark. I worry that he is worried that death is approaching. I know he can't look at my kids with joy anymore I see sadness in his eyes now.. I know he is sad that he will miss out on seeing his grandchildren grow into wonderful young men and women.
I know you have all been through this. It is now my life. I can't let him go. 8 weeks is a cruelly short time to get used to the idea that the most beloved father is going to die. His tennis gear is still soaking in mums laundry tub, he has his favorite food still in the fridge his car is in my brothers garage. He must wake every day in hospital and remember that he will die soon...and relive every feeling.
He is in hell and I have front row tickets to watch in horror.
Posts found: 9