Topic: Hello Goldenhearts

My Beautiful Sister (she is actually my cousin but we have always been as close as sisters) was diagnosed with this dreadful cc about 6 weeks ago (I say about because time has become disjointed and abstract since that day). My Gail is 47 years old and has always been a lynchpin of our very close extended family. Always the first there in a crises - she would give you her very last penny without having to think about it, a wonderful sense of humour, and the most empathetic person you could know.
She has had Gall stones for many years but only two 'attacks', the first about 10 years ago and then an attack about 3 months ago which landed her in hospital.
After the usual checks and scans and antibiotics we were told that there was nothing 'sinister' but she would need to have her gall bladder removed. She was admitted to hospital a couple of weeks later for this op. The surgeon advised she couldn't remove Gails gall bladder as it was enlarged and 'stuck' to her liver and that a liver surgeon had best be present, for safety reasons, during the operation, we were again assured that nothing sinister was going on. Our Gail recovered fantastically from this surgery and was home within a couple of days. She has further tests and was back in hosp a  week later for another attempt. After this op we were told that they had managed to remove most of her gall bladder and had sewn the rest up - again okay. She recovered from this surgery really well and was half an hour from coming home when the surgeon appeared at her bedside looking completely shocked and announced that lab results had shown that she had gall bladder cancer, the surgeon said she was as shocked as anyone.
Our darling Gail was told she needed a liver re-section and this was arranged for the following week.We were very hopeful as we felt that the cancer couldn't be very advanced if the previous scans etc had shown no signs and the surgeon obviously hadn't seen the cancer during the previous ops.
After my Gails re-section we were told that all the lesions couldn't be removed after all and that there was spread to Gails Lymph nodes and other lesions in her abdomen,
and that the prognosis was 'not good', she would have 6 - 18 months with treatment.
My lovely Gail has refused all but the barest information. She doesn't know the prognosis but only knows that the operation was not completely successful and she has been advised to start chemo within 8 weeks.
She is still in hospital after her re-section, the initial stent she had placed didn't work and her abdomen was flooded with bile which leaked from her surgical wound, then had a replacement (metal) stent placed 10 days ago, via ERCP, which has still not completely sorted the leak, she still has a catheter from her abdomen to drain the extra bile. She is due to go for another ERCP on Monday (3 days time) to find out what has gone wrong.
She has not recovered well from the liver surgery and hated the ERCP as she wasn't sedated sufficiently and was very sick and in a lot of pain from pancreatitis after it. She is so dreading this procedure on  Monday, and it's aftermath. She has requested a general Anaesthetic this time.
We are of course, as a family, completely at sea at the moment. We are taking one day at a time and first of all want our Gail to heal from her surgery and try and get strength for the battle ahead. We have been able, for the last few days, to bring her home from the hospital for a few hours each day, as she is more relaxed and comfortable here.
Our biggest worry at the moment is that our lovely Gail has pulled the shutters down on us all. She will hardly talk and blocks out the world and us by sleeping (or just closing her eyes to cut us off more often than not) and we are so worried about this. 
I know she is very scared of cc and the future and I think she thinks she can't let go for fear of upsetting (particularly) her husband, parents,  and children, but  'closing up' I can see, is damaging her. She is normally the most outgoing, sharing, un-closed up person you could know and that person has all but disappeared. I am so concerned for her. Have you come across this response before goldenhearts?
What could and should we do and say which may help her out of her self imposed isolation? Can you help us?

Chris. XXX

If only Love could cure

Re: Hello Goldenhearts

Dear Chris,
As Patty and I read your post there were tears in our eyes as we felt your pain and dispair.  For you see, my dear wife, Patty went through some of the same experiences in Febuary and March of 07.  You may read our posts  in the "Experiences" section  called "Loving each other , one day at a time".  I just want to let you know that  duing this time  soon after her initial surgery and the aftermath of replacing stents four times, Patty was very sedate and slept most of the time.  She also kept her eyes closed a lot of the time and  it would have been very easy to draw the conclusion  the she was "shutting " the world and everybody out.  But, I can assure you that  that was the furtherist from the truth.  Now that she is home and feeling well, she looks back on the experience and relates to me that she always knew that I was there beside her and it conforted her to know that I was there, even though she could not express her feelings at the time.  Gail may not be able to tell you how much it means for you to be there.  Just  stay by her side and love will come through.  Our prayers are with you as you are going through this terrible ordeal.  We are all here by your side and know your agony.    Love and God Bless,
Ted and Patty

Re: Hello Goldenhearts

I have noticed that it mostly carers who come to this website. This accords with my own experience. My husband didn't want to do the research or even talk about options - except when forced to. His way of dealing with it was to pretend that it wasn't happening. I think everyone has their own way of dealing with what is happening and pretending it isn't happening, is just another way.

Re: Hello Goldenhearts

Hya all I am able to relate to some of this as well. Alan had all of his friends around him talking about whatever they would normally speak of when they were together.
It was as if there was nothing wrong. We both knew he was going to die and nothing could be done, it had gone too far.
During the daytime if we were alone I  would sit down and try to talk but he responded as if it was not a big deal. One time he said he needed to go home to have a rant and let rip. I asked if he wanted me to go with him but he just said no, I need to have a rant and a good cry.I did get some great things, but he also told me what to do afterwards as he put it.   When he was with me on his own he was very quiet. His dad was his best friend but he hardly said anything at all to him. Alan ran his own show in the way that he wished. Sometimes now I think of things that I would like to have spoken about, but I know in my heart he did not wish for too many things to be said. I often think he saw himself as a hero because he was not going to break down in front of anyone, he was going to be as normal as possible. This was Alan's way.
love and light and I am thinking of you as you go throught this terrible ordeal xxxxxx

U.K.Member

Re: Hello Goldenhearts

oh chris,
i can only speak from my own experience.  i found my own tumor (thanks a lot for nothing Kaiser...my previous insurance).  when the tumor was confirmed via a ct scan, shock was all i can think of.  then the diagnosis of cholangiocarcinoma after the surgery was more than i could grasp at the time.  i had been a long distance runner, long distance cyclist, very healthy diet, etc. 

it took a long time for the 'news' to sink in.  i was in agony over and over again.  my world was upside down.  i found it very difficult trying to relate to my family and friends.  i wanted to protect my grown daughters, but at the same time i was frightened beyond belief at my diagnosis. 

not one of us knows how we would/will react when told we have an incurable cancer.  then, the grief stages are experienced over and over again.  perhaps the best you can do at this point is to listen to your 'sister', tell her you love her, hold her hand....

also, she has just been through three surgeries and then some complications.  it's overwhelming at best.  i found it very hard to think beyond my next pain battle for a long time.  the need to heal from the surgery is prime along with a supportive loved one. 

i'm rambling, but your story touched me.  i don't come here often as my life has become increasling complicated and i don't want to let anyone down that is looking for a response from me.

i'm sending you loving thoughts and hoping for a break through with your sis.

xoxo, barb

Re: Hello Goldenhearts

Dear Everyone, I am so very lucky to have found this site and you all. Before I posted I browsed here a lot and have read many of your stories. You're all going through so much yourselves and yet you've time to comfort and advise. I am holding you all dear, for you are truly Goldenhearts. Much, much love. XXXXX