If we had our time again, these are a few things we would have done/asked:

- Do not hesitate to ask each and every question that is playing on your mind - no matter how small or simple you might think that question is.

- Ask the tough questions.  The answers may be frightening, but somehow it is easier to cope if you know exactly what it is that you are confronting. 

- Don't let the doctors shirk the difficult questions, press them for honest answers.  Don't let the doctors put you off.  If the doctor says your loved one can't be seen for two weeks, and you're not satisfied with that, don't accept it - force the issue!

- In particular, ask questions about what you should be on the look out for and when you should bring your loved one in for medical attention.  We were flying somewhat blind during Mum's illness and didn't have sufficient information to distinguish between symptoms that were part of the progression of her cancer and other symptoms that indicated something else entirely was happening (Mum developed a blood clot, and we had no idea that this was a risk or the symptoms to be on the look out for)

- If while caring for your loved one you sense something is going wrong, trust your instincts.  If you feel that your loved one needs medical attention, do not hesitate to seek the help you need.

Hope that helps - my best wishes are with you.

2

(3 replies, posted in General Discussion)

Hi all,

Is anyone able to tell me whether there is research/evidence that cholangio is a cancer that is genetic?  That is, am I (or my brother and sister for that matter) more predisposed to cholangio because Mum developed it (Mum was diagnosed at age 54 in January this year and passed away in February)?  None of the doctors I have asked really seem to know, although one of my doctors has suggested that I might consult with my Mum's specialist and has even suggested that I might want to consider gallbladder removal! (Mum's cancer is thought to have originated in her gallbladder).

Any assistance would be appreciated.

3

(7 replies, posted in In Remembrance)

Hi Andrea,

Reading your post was like reading my own mother's story.  She was a picture of health at Christmas last year and passed away by February.  She was only 54.  The most difficult thing for me was that I thought I would have more time with Mum.  As it was, I don't think my family even had a chance to come to terms with her having cancer before we lost her.

It has been 5 months now.  Mum is the first thought in my head when I wake up and the last when I fall asleep.  I miss her unbearably.

I wish you and your family much love and strength during this time.

Best wishes,
Sarah

4

(5 replies, posted in In Remembrance)

I lost my Mum on 26 February 2007.  She was 54 years of age and had been diagnosed with cholangiocarcinoma a little over 6 weeks earlier.  Words cannot describe the lonliness and emptiness I feel without her, because she was more than a mother to me. She was my best friend, my closest confidante and the only person who could always bring a smile to my face and calm my worst fears. It scares me to think that I am precisely half the age she was when we lost her.   

My family lives in Australia, and went spent this last Christmas (2006) at the beach as we have since I was born.  Mum was her usual bubbly self and spent the week swimming at the beach and taking long walks with Dad and her three beloved Schnauzers.  While we were away, Mum was having terrible trouble with an itching rash, something like chicken pox.  She was using all sorts of lotions, but nothing seemed to bring any relief.  She also mentioned that her urine was a strange colour, but nobody thought anything of it.  Toward the end of our 10 day vacation, just before New Years' Eve, I said to Mum that I thought her skin looked slightly yellow.  She said she thought so too, but wasn't sure that she wasn't just suntanned.  I made her promise me that she would go to the doctor when she returned from holiday.

Mum and Dad returned from the beach the day after New Years' Day.  Two days later, Mum went to the doctor and was sent for a series of blood tests.  By the weekend, she was admitted to hospital for more tests, we were told that she most likely had gall stones, but the doctors were puzzled because Mum wasn't in any pain.  After various cat scans and more blood tests, I remember being called at home late Sunday night to be told that the doctors now thought Mum had pancreatic cancer.  My brother and I raced to the hospital to meet Dad, Mum and my sister - we were all just blown away that in the space of one week, a (seemingly) perfectly healthy woman could be told that she had cancer.  The following day, Mum had two procedures, first a laparotomy, after which the doctors decided her cancer was gall bladder cancer, and then an endoscopy to insert a plastic stent.  She was discharged on the Wednesday and told that she would return for major surgery to try to remove the cancer once she recovered sufficiently from the procedures.

A little over a week later, we were back in the room with Mum's surgeon to be told what the surgery might involve.  The doctor wasn't even sure which type of surgery would be required but basically said it would be either removal of the gall bladder and part of the liver, removal of the gall bladder and part of the pancreas, or, worst case scenario, nothing at all if the tumour was too far spread.  We were told that surgery was really the only option for a cure - chemo and radiation not being very useful treatments for this type of cancer.  I cannot even imagine the terror Mum experienced when she was told this news.  It had been only 2 weeks since she first saw her doctor.

The following day, we went in with her for the surgery.  We were told, if they were able to operate, it would take 6 hours.  We said goodbye and went to sit in the ICU waiting room.  I remember that there was another family in the waiting room, waiting for their grandfather to return from surgery for kidney cancer.  We waited for 4 hours, and were feeling extremely hopeful because we thought surely such a long time meant that the doctors were able to operate.  The other family received a phone call that the kidney surgery had been a success and all the tumour had been removed.  At precisely that moment, Mum's doctor came into the room and from the look on his face we knew - he hadn't been able to operate.  We all broke down, I remember my Dad collapsed in my arms.  We then had to compose ourselves so we could go and see Mum in ICU.  My sister and I went in together.  Mum was moaning and in so much pain, it was the most horiffic thing I had experienced til that day.  I had to leave the room with my sister before we both fainted.  Telling Mum that the surgery was unsuccessful was worse.

Mum recovered quickly, and in fact was out of hospital about a week after her surgery.  She seemed in great spirits and happily chatted away with her many visitors.  But then came our greatest question - what now?  It was at this stage that I think the doctors failed us.  After Mum's operation, we waited almost 2 weeks to see her surgeon to be told what the biopsy results revealed.  He told us only that he could do no more and gave us the name of the oncologist to make an appointment.  Upon seeing the oncologist, we were told to come back for Mum's appointment on 22 February - basically 1 month after Mum's surgery.  When we asked why such a long delay, we were told that treatment couldn't be done until Mum had fully recouperated from her surgery.  Fine - but surely someone could have at least seen us to tell us what to expect?  We weren't even told what type of treatment Mum would be offered.  And so we waited almost 3 weeks to see the oncologist.  During this time Mum was vomiting often, had lost her appetite, developed thrush in her mouth and had difficulty speaking.  Her GP was some help, and ultimately it was he who came out and told Mum the absolute truth - that she would not recover from this disease, and that it would ultimately claim her life.  Just prior to Mum's oncologist visit, she had a further surgery to replace her plastic stent with a metal stent.

On Thursday 22 February, we visited Mum's oncologist finally.  We were told that Mum would be offered chemo and that hopefully it would relieve some of her symptoms and stop the tumour from spreading, but ultimately it would stop being effective.  Mum was to begin chemo one week later.  By Friday, the next day, Mum had deteriorated before our very eyes.  She was so weak she could barely get out of bed, and seemed to be having trouble breathing, although when asked she told us her breathing was fine.  She was worse by Sunday, and Dad told me she had barely slept during the night and had fallen down twice on her trips to the bathroom.  I managed to get Mum to walk out and sit in the garden, a moment I'm so grateful for.

I felt miserable on Monday morning, and decided to take the day off work and help Dad take Mum to her psychiatrist.  She was so bad when I arrived at home that I told Dad something was terribly wrong and I called her oncologist.  After being told snidely by the receptionist that it sounded like Mum had "dropped her bundle" since her Thursday visit, her oncologist told me that if Mum seemed to being having breathing difficulties, she wanted to see her.  She told us to take Mum to her psychiatrist and then bring her to hospital.  I helped Dad take Mum to her psychiatrist.  We had to dress her, lift her into the car and take her to the doctor by wheelchair.  After the visit, I helped put Mum back in the car, kissed her and asked Dad to call me when he and my brother had her settled in the hospital.

At 7pm I received a phone call from my brother in tears.  He said to come immediately to the hospital, Mum had stopped breathing and had been rushed to ICU.  I raced to the hospital and met the family - once again in the ICU waiting room.  Mum's oncologist was there and told us that they thought Mum had blood clots on the lungs - apparently a complication of cancer (which had been mentioned to us only in passing by the oncologist on Thursday).  Mum was being given blood thinners and the next 10 hours would be critical.  We were all allowed in to see Mum and I cry now as I write this just thinking about her.  I like to think that Mum was conscious, she seemed to nod or shake her head in response to our questions, but she was unable to speak and was gasping for breath.  I just remember thinking how cold she was.  We were asked to leave the ICU while the doctors fitted a cathetar and moved Mum into a room so we could have more privacy.  The ICU doctor followed us out and then told us that he couldn't promise that Mum would make it through the night.  He had received some test results which indicated renal failure, and thought that her other organs would shortly fail.  I called Mum's mother (yes, my darling Mum's own mother outlived her), sister and cousin.  We were then allowed back in, but I was the only one feeling strong enough to go in straight away.  As I approached the room, the doctor called to the pastoral care assistant to get the rest of my family.  I asked what was going on, was Mum ok?  No, said the doctor, right now she is dying.  I collapsed on the floor.  It felt like an hour until the rest of the family arrived in the room.  We held her and kissed her and whispered our goodbyes, all the while I was thinking, this can't possibly be happening - it's too too soon.  Her priest arrived and administered the last rights, and within 20 minutes my beautiful, happy, wonderful mother passed away.

Afterwards, the ICU doctor sat with us and answered our questions as best he could.  But how do you explain this most destructive of diseases.  It has shattered our family and we all just struggle with this thought that we should have done more.  The doctors tell us nothing could have been done, but it doesn't help with this awful guilt I feel.  I feel so many emotions - anger, guilt, bitterness, such incredible sadness I never thought possible, but most of all this unshakeable feeling that I've been deprived of the person who means most in the world to me in such a cruel, unforgiving way.

I want something worthwhile to come from this whole rotten ordeal, and so I am going tomorrow night to my induction to volunteer for the Cancer foundation in my state.  I want to help other people.  My wish is that no family dealing with cancer should have feel alone or helpless.  I think information is the key, and unfortunately there is so little written about cholangiocarcinoma. I think this website is marvellous, and only wish we could have stumbled upon in earlier.  I'm sorry for writing about my Mum's illness is such detail, but I hope that by getting it all out in writiing, I can start the process of moving through my recurring nightmares of Mum's final days towards the memories of the incredible, exhuberant, passionate mother I remember.