Topic: mum just diagnosed with cc thought she had eaten a dodgy sandwich

Hi 3 weeks ago my mum was diagnosed with nonresectable cc. Well they think it is cc. The Dr. said that this was the most likely diagnosis. he said they couldn't tell for sure unless they did an autopsy!
my mum lives in Leeds and I live in Northern Ireland. Mum told me one night when we were talking that she felt a bit unwell and put it down to a dodgy sandwich. I told her to go to the Dr. which she did. The Dr. told her she was jaundiced and said he would write a letter to the hospital for them to make an appointment to see her. This would take about 2 weeks. My daughter also lives in leeds she is a teacher. She called me to say that mum was really yellow and I told her to take her to A&E. They admitted her and that was the beginning of the nightmare.

Firstly they told us it was a blocked bile duct caused by gallstones. At least that was treatable we thought, we were relieved. An Endoscope was performed and low and behold no gallstones, well actually lots of gallstones but none blocking the bile duct. More tests were ordered.  After Cat scans and Mrsi scans the Dr. called us into a side room to break the news. We all held hands and walked together into the room wheeling the drip stand my mum, my son and my daughter. I was in Leeds by this time armed with my list of treatments fresh from the internet. "Don't worry mum I have lots of things to ask the Dr". I said to try and reassure her.
He drew a diagram of the biliary tree and put circles all around this area. "You see it is so agressive there is nowhere to do a stent." I showed him my list and he shook his head. "Not possible", he said the cancer  had metastesised. I had never heard this word before and still can't say it let alone spell it. IT is in the lung, stomach, liver and pancreas. Wow, mum you don't do it by halves. My very courageous mum squeezed my hand and said don't be sad I don't want you to be miserable I am not going to be.

To crown it all my brother came on the train from London and ended up in the ward next to mum on a drip with gall stones. He has to get his gallbladder removed now.


My mum is at home now receiving palliative care which has been excellent I have to say.
She has no pain and a part from being bright yellow and very very tired she doesn't feel to bad. Her optimism and zest for life is inspirational. On her first day home the wheelchair arrived. Mum has asked ot go out nearly every day since. We have been to the royal armouries, the Whiterose centre and Ripon Cathedral where a lovely canon gave her a guided tour and also communion,
My Mum is an  intelligent creative lady who has inspired many people in her life. She writes poetry and short stories. She did a degree in her sixties for fun.
Everyone wants to visit her and this is quite a task to manage as relatives are travelling from Ireland.
I have gone home for week as my husband is ill he has a heart condition and was in hospital when mum was diagnosed. He is home now.
I am flying back on Friday for the weekend. I want to be with mum all the time but what do I do? I am very confused and still don't really belive my mum is going to die. They said weeks to early months what does that mean? Mum hasn,t asked.
Thankyou for listening xxx

Re: mum just diagnosed with cc thought she had eaten a dodgy sandwich

I can offer you no answers to your questions. I will keep your mother and all of those with cc in my thoughts and prayers. It seems you have a lot on your plate. Remember that you dont have to be strong all the time. You need to look out for your mental, emotional, and physical well being as much as you need to look after your families.

Sending you and your family my good thoughts.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: mum just diagnosed with cc thought she had eaten a dodgy sandwich

I hope you're husband is much better now... is he? If he's home then I'll assume he's much better off than in hospital. I hope so...

My name is Beverly. My mother had what I/ we thought was stomach flu. She was vomiting and had some pain in her stomach. After a lengthy hospital stay and many tests, (X-ray,sonogram, MRI, CAT scan, bone scan) the doctors thought she had a gall bladder obstruction. Easy surgery, that. Then when the surgery was done, she had to be opened up fully to remove the gall bladder and much of the surrounding tissue, including some of her small intestine. And the word cholangiocarcinoma was bandied about. Of course I looked it up on the internet and thought, 'well, if it's operable...'

It's inoperable. It's advanced. She'll start chemo and radiation in about six weeks to slow it down. That's all the doctors can do.

She wasn't jaundiced, she had no real obvious symptoms, other than the pain in her lower right side.

And of course, this is a rare type of cancer--- no ordinary type of cancer for my mom!

What you need to remember is no doctor has any real time-line for what your mom is going through. Your mom may live six months, she may live a year, she may live five years... the doctors don't know. And your mom and her strength have alot to do with this. It's the same with my mom.  And it also harkens to the strength that we have as caregivers. I'm going to give my mother all the support I can to get her through her treatments. But I know I'll need help, just as you will. Family can be supportive, but look into local support groups that not only can give you friendly support, but also information as well. Because, for me, it's the unknown that's maddening.

My thoughts are with you, and your mother. Never give up, Never give in.
You are there for her, but you are human and must also give some time to yourself.
Please remember to give yourself the time to deal with this, as much as you give all of your attention to your mother.

EM me if you wish, cleverlyvoid@aol.com.

And keep checking into cholangiocarcinoma.org as often as possible.

take good care,

beverly

Re: mum just diagnosed with cc thought she had eaten a dodgy sandwich

thankyou Kris and beverly for your kind thoughts. I was in Leeds again until yesterday. My brother there now. Mum stating to have some pain.now in her back. she is still able to get around with the wheelchair and my bro in taking her out today. I will be back on friday and hopefully my husband will be coming with me.
This site offers so much warmth and care.
My husband has great faith in a local Dr. here in belfast who has an alternative therapy clinic called the Synergy clinic. he is Dr. Finbar Magee. He has worked alot with cancer patients.
love c.

Re: mum just diagnosed with cc thought she had eaten a dodgy sandwich

so sorry to hear bout ur mum,cathy. reading ur  story brought bk many memories for me, my mum was 52 diagnosed with cc 8 wks b4 she passed away end of feb 07- 26 april 07 she had very much same symptons lost weight severe jaundice, she had stent put in that helped she regained appetite but had mets where the cancer had spread fast. she was in lots of pain all the time too loads of medication she deteriated so quick had renal failure. but  like other ppl av sed sum ppl can be different live on longer u just av to be there for her make her comfortable and mostly inportant tell her u  love her n keep her pain free i live in south yorkshire. feel free to ask me questions al help where i can----  thinking of u and ur family take care.