clarem
Forum Replies Created
-
Posts
-
Rena it is hard to leave but needs must. You have done all you can to support your dad and he will know that. Every time I left my sister I worried I would not make it back to be with her. I did what I could whenever I could but it was incredibly hard to leave her.
Look after yourself too.
Hi Moonpie,
It must seem like one step forward and two backwards. I think the sooner your Mum is seen at Liverpool or Christies the better. Has anyone given you and indication of time to hear from them? I would be all over this, keeping the pressure on as it is taking precious time going from team to team waiting to get a proper diagnosis, staging and initial plan of attack in place. Don’t let this third referral get lost in system.
It may well be that surgery as an option is still not possible but you need to be confident this decision is coming from the expert team. If it can’t be done, then my next question would be what can or is available to your mum to give her the quality/time/pace of life that she wants in the weeks/months/years ahead.
To quote Lainy – “Go with your gut”. I too am a great believer and it has never steered me wrong yet.
I can’t answer on the spyglass ercp or endoscopic ultrasound – to my knowledge it was a routine ERCP, routine liver ultrasounds, MRCP and CT’s my sister had. What I do know is someone here will.
Hang in there Moonpie – this is an incredibly hard time. I felt completely out of control at this stage but get the right team and plan in place for your mum and at least an element of this awful experience will start fit in to place.
Dear Lorraine,
I am sorry to read that your Mum has died. You and your family are in my thoughts right now.
Hi Rena, I’ve come to your post late. I hope you have managed to get your Dad seen by a doctor and he is getting relief from his symptoms. There is much that can be done to ease symptoms and make him more comfortable. Listen to your gut and stay strong.
Oh Moonpie,
I don’t want to belittle the gravity of the situation by saying this is good news but this is a big step forward and has made me smile for you. Your concerns and questions have been taken seriously and a specialist team is the way forward for sure. You will have no shortage of knowledge here on the therapies you mentioned – just wait for the stampede of help!
Dear SSNLE,
I am sorry to read your news regarding your husband Le. There must be so many questions and thoughts you both have. This forum has support, advice and credible information in abundance.
Please let us know how your husband and you/your children all are and I truly hope that the chemo produces some good results for Le.
Moonpie,
Hang in there. You are all doing incredibly well.
Your last post has brought back lots of memories about when my sister was diagnosed. Initially there was a whole lot of everyone trying to protect everyone else. My sister trying to protect her husband, her husband trying to protect her, my parents trying to protect all of us, my sister protecting mum and dad from bad news and on and on it went. I remember one occasion, mum breaking down and saying to me she was the only one not coping, nobody else was a mess or crying and she had to get it together and get strong. She was so way off the mark – I was crying and breaking down all the time – but only with my husband or other sister. I had done her a disservice really by hiding it from her and whilst trying to protect and help her had inadvertently made her feel worse.
Don’t get me wrong, I still feel there is a pecking order to dealing with my sister illness and I will not unburden the extent of my feelings on my parents or my sisters husband but I don’t go to the lengths I did to hide my feelings to protect mum. I’m rambling now but talking and communicating when done in the right way and with sensitivity can only be a good thing.
I’m with Lainy and Gavin in that your mum should know the full picture. Only then can she make decisions based on the true facts. Even if information is held back, somewhere in her mind she may well be wondering and thinking the worst. I do feel slightly hypocritical in righting this post as I did propose not telling my sister the extent of her illness at one stage. Her husband asked me to deal with the doctors for him and many times I knew information before my sister. I was generally the sounding board for the doctors on how we were going to broach breaking news. I worried about telling her and equally worried about not telling her. In the end she knew everything and her strength and courage amazed me – every single time. Nothing went to plan for her but knowing allowed her to make important decisions. Some decisions in the end when she was at her sickest I made for her but I hope they were the right ones for her based on previous discussions and decisions that had been made.
It’s also incredibly hard for you being expected to carry this news in secret and there were times when I didn’t know what else to do or how to manage the blows that were dealt. I eventually realised I couldn’t do it all and needed the doctors to pick up the baton which my sisters GP and surgeon always did for me. What I’m in articulately saying is you need to look after you too.
Moonpie1,
You are not clutching at straws. You are doing so well trying to research and find answers for your Mum. There are many unknowns for the doctors treating CC, so for carers and patients it is incredibly hard to start to understand all the information. It sounds like your GP is doing a great job at communicating with you but I am wondering why your mum and you have not had a face to face meeting with her surgeon or a surgeon from the MDT.
All your questions really do need to be asked and explained to you in a way that you and your mum can understand. I feel it is unfair on your GP (who will not be an expert in CC), you and your mum for the GP to be relaying this information. The oncologist will be able to address many issues and probably the one about fast or slow growing cells but may not be as well placed as the surgeon to answer other questions.
When my sister was diagnosed, her surgeon when we met with him to get her plan of attack did say that the brushings very often come back negative and that if this had happened to my sister, her diagnosis would have been missed. Inconclusive brushings are a common. There are other diagnostic tests of which I am no expert but someone else here will be and will chip in. I think if my memory serves me right, imaging can be a problem and does not always give the best picture of what is actually going on internally. It’s another frustration not helping with a reliable, rapid diagnosis. Has your mum had an MRI?
Even although my sisters hospital that she got treated in was 150 miles away from where she lived, her surgeon was very pro-active, communicative and always fighting her corner. He initially got her GP to go to her house and break the news that she had CC but after that he would ring her on a Friday after the MDT meetings to inform her of the decisions that had been made when she was not in the hospital. Even when her surgery had been abandoned, he continued to seek out treatments to help her. Sometimes carers and patients need to be a step ahead and keep the pressure on. It is not right and you should not need to fight but as Lainy said, I would keep going until you satisfied that you and your Mum understand why certain treatments are not possible.
I’m not sure if you’ve found the guidelines for diagnosis and treatment of CC are on the AMMF website – I have put the link below from the website page below in case you haven’t. Scroll down the page and the link to the document is there.
http://www.ammf.org.uk/cholangiocarcinoma/guidelines-for-diagnosis-and-treatment-uk/
Dear Andra,
Welcome to the forum although I am sorry that your Dad has been diagnosed. There is so much support here with many people who can always answer questions, give advice and lots of support too.
I do hope that tomorrow’s biopsy gives you a real plan to fighting this disease. Please ask any questions you might have as someone will always answer just as Marion did on the alternative treatments.
Let us know if you can the biopsy result and plan.
The bile duct resection I think you are referring to is similar to the whipple. My sisters tumour (called a klatskin tumour) originated in the bile duct. Her resection was to remove 75% of her liver (as the tumour had grown up and into her liver), gall bladder, bile duct and use a bit of her intestine to attach to the liver a create New duct for bile to flow to her intestine. The tumour had also affected a major blood vessel which was to be rebuilt. Had her tumour been lower/nearer/affecting the pancreas then the head of pancreas would have been removed which is called a whipple operation. The liver, gallbladder, bile duct and pancreas are all connected so to speak. I’m sure the team will have considered surgery and the extent and type of potential surgery would depend on where the tumour is and what it is affecting.
Like you, I wanted to be armed with as much information as possible. I struggled to find credible info though until I stumbled upon here and ammf several weeks after her diagnosis. Macmillan explain whipples and resection really well –
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Bileduct/Bileductcancer.aspxSorry for typing errors tonight – on the ipad.
