March 9, 2012 at 8:40 pm #58448
SPF, I am so very sorry about your Dad. Did the ONC mention anything about Hospice care? Hospice does not mean the end but they do start with a patient up to a year out. The bottom line is Dad’s comfort and they will see to it that he is kept comfortable. None of us know how long we have but Hospice has a booklet that really follows what happens pretty closely and what to look for. Also by having Hospice you can really concentrate on just being with your Dad and it will help ease up things for all of you. When you are ready, your ONC will set it all up for you. Please keep us posted and ……be strong!March 9, 2012 at 8:10 pm #58447
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???March 6, 2012 at 9:00 pm #58446attygailParticipant
I understand totally what you are going through. I experienced the same feelings watching my 25 year old son deal with this disease, and being brave for all of us.
I could always see in his eyes the pain he was in — It broke his heart knowing that he would never see his newborn nephew grow up …
If I’ve learned anything from the experience, it’s to live in the moment … that is what kept our Christopher going.
Sending best wishes to your family … Be strong, believe in the power of prayer, and Never, Never, Never Give Up!
Please take care-
GailMarch 6, 2012 at 3:38 am #58445wallsm1Participant
Hi. I wanted to also welcome you to the site.
I’m sorry to hear about your father. This diagnosis brings on such a roller coaster of emotions. It sounds like you’ve done a great job of getting him the best care. This site is wonderful. You will get a lot of support and valuable information relating to this disease.
Take care and keep us posted.
SusieMarch 6, 2012 at 2:22 am #58444peggypMember
Welcome to the CC family. Hope your dad is doing better today. My husband has ICC and has had it for a little over 3 and a half years. My best advice to you is to stay strong, keep a positive attitude, and never give up hope. Just as Marion said, live in the moment, because not one of us is guaranteed tomorrow. You are on the right path by becoming as knowledgeable as you can on CC so you will know what questions to ask the doctors.
We have been told several times to get our affairs in order, but my husband keeps fighting this terrible disease. Our options are running out but he just had the chemoembolization that Percy mentioned in his post. We won’t find out the results of that until later this month. We are hoping for the best.
Sending well wishes to your dad and positive thoughts, PeggyPMarch 6, 2012 at 1:46 am #58443
SPF sounds so good to me!!! It just takes some time to sink in and then the pre cious memories begin to be made. Doesn’t matter if there is one day or 100, precious memories are the best for any time! You do sound better and that makes me very happy. Be strong!March 6, 2012 at 1:26 am #58442
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.March 5, 2012 at 2:38 pm #58441
Janet, so good to see you again and thanks for popping in! Hope you are doing well as we go on with our “new normal”. As you may have noticed we are getting a few newbies from your neck of the world. Again, take care and I hope things are going good for you!March 5, 2012 at 2:34 pm #58440
Dear sugarplumfairy, Marion always says it so right. Please read and re read her post as she helped me through my Husbands CC with her sage advise. It was a second marriage and he showed me a love that I never had in my entire life. My parents were good people but no warmth. When I was married to brand X, well that was a bad movie. Along comes the romantic Sicilian in my early 60’s and talk about soul mates! 12 years in to the marriage he gets CC. We were married 17 years. I developed this mantra and when I feel down I say to myself, “Shame on you! You had for 17 years what most people never have in a lifetime!” Know what? It brings me right up again. We have to find that comfort spot for each of us but remember this is still all new to you, you are still stinging from being hit in the stomach with the baseball bat. Just know you can visit us as often as you are able. We are all such good therapy here. Big hugs coming across the waters.March 5, 2012 at 11:33 am #58439magicParticipant
Iwould like to endorse Marions wonderful advice about the living for the day,it is a great reminder to me!
We all go through such difficult scenarios with illness and loss but we can try to do our best and look after all those around us and that does help really…
JanetMarch 5, 2012 at 5:06 am #58438marionsModerator
sugarplumfairy….Someone said that the pain is the price we pay for love. Our Dr. Giles once said:
“Contemplating the end of one’s life is a sobering experience that can have a transforming effect on self and on our relationships with those around us. I’ve witnessed several people face the inevitability of their own death and, combined with others’ writings on the subject, have come to a few conclusions:
1.Knowing that death is coming gives us the advantage of getting things in order (funeral services, last-minute business, how/where to spend the last days/weeks, etc.).
2.Knowing that death is coming gives us time to take inventory of the life we have lead and celebrate what it has been.
3.Knowing that death is coming allows us to discuss how and for what we want to be remembered.
4.Knowing that death is coming provides us with the opportunity to make absolutely sure those closest to us know how we feel about them.”
There is something to be said for the feeling of absolute togetherness this situation brings about – crying is very much part of it. Remember that there are no rules. You and your family are facing the most of difficult times, but you have each other to lean on.
Please, do not hesitate from reaching out for support wherever you can find it may it be on our site, hospice, a counselor, our Dr. Giles or, all of the above. If there ever is a time to do so – it is now.
Our Dr. Giles can be found by going to the top bar, discussion board, scroll down to Dr. Giles.
Hugs and love,
MarionMarch 5, 2012 at 4:31 am #58437
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.March 5, 2012 at 3:59 am #58436marionsModerator
My heart is with you. Don’t feel guilty about anything you may be feeling – it is normal. It is said that anticipatory grief is both the easiest and simultaneously the hardest kind of grief we experience. It is challenging and appears to set us in a state of emergency – it comes and goes – we know it yet, it doesn’t make coping with it easier. Tolerating this kind of emergency for extended periods of time is very difficult to cope with.
Living in the moment has helped me through much of the time of anticipatory grief. Not always did it work – not always was I able to refocus – but for the times that it did, I am so very grateful. It allowed me a chance to cherish the closeness we had and to imprint in my mind the face, the touch, the smell, and our never-ending hugs. We lived, we loved, and we knew it.
Hugs and love,
MarionMarch 5, 2012 at 2:16 am #58435
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.March 4, 2012 at 3:27 pm #58434
Dear SPF, there are no words that I can say in response to your very accurate description of finding out a loved one has CC. Too many of us have walked in your shoes, actually one is too many! The terrible Journey is not over and you will need to garner all your strength to get your Dad and family though this. When my husband went through it I decided at the onset that I had the rest of my life to mourn him but a shorter time to make it a loving, memorable time. And believe me Memories can still be made even from a hospital bed. We are all here for you, use us! Please keep us posted asd we truly care. You never know how strong you are until “strong” is the only choice you have!
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