I'm new here. My mum has been diagnosed with cholangiocarcinoma within the last three weeks. I live in Victoria and she lives in Queensland these days so I feel badly that I can't be there to help her partner care for her. Cholangiocarcinoma is rare and the survival rate is not good.
She's an unusual case, having shown no symptoms of her cancer despite a large tumor on her liver and being otherwise well and healthy. She's had a large portion of her liver resected and is recovering from her op. She has pain from the op but appears otherwise in good health. The doctors have been amazed at the enigma that is my mum so far yet still, they've given her two years approx. Naturally we are hoping for more.
I want to be positive, but am finding it difficult to believe against the odds. Despite that I am supporting her as positively as possible and not allowing her to know of my secret fears or thoughts. I have my good days and my bad ones like everyone. I am often home alone with my youngest son which allows far too much time to think. Those days are hard, I find it a challenge to stop my mind wandering to places I don't want it to go. I know, with my mum's immune system being so healthy, that I should be able to be so much more optimistic, at least for her sake, so I don't know why I can't get there.
I'm just looking for a support group of some sort while we go through this process.
Im so sorry to read of your mothers diagnosis. The uncertainty is the worst and yes your mind does go every which way. Keeping busy is the only thing that I found that helped me although there are days when you just simply can't be bothered and you have to drag yourself around just to get the daily stuff done.
I remember when my mother was diagnosed and it was just like it was yesterday. I felt the blood drain from my body and thought that they must have it wrong. I left the hospital in absolute tears and for the next 14 months until my mum passed carried a dark cloud overhead but knew I had to remain positive to help her through.
I managed to find an inner strength I never knew I had and still rely on this to get me through day by day.
Your in my thoughts along with all those who are battling through be it a carer, family or someone who has cancer.
Hi, I am very sorry to here about your mother, I am also new here. my story is that my daughter was diagnosed with a brain tumor three months ago, has had said tumor removed (they took all they could see) and undergone radiotherapy and chemotherapy. Because the tumor is in the brain they cannot take an amount of tissue around the tumor to make sure all is removed, so they know there are some cancer cells left behind. Physically she is doing well but is feeling removed from her friends, feeling different. Her doctors cannot give her a long term diagnosis, all they can say is "we don't know".
She is scared, I am scared, and I don't know what to do or say.
If you need some extra support at the moment please take advantage of our Helpline 13 11 20. There are also support services in each state including groups that meet and Telephone Support Services. The services are for a range of people involved in the cancer journey including family and friends. Please let me know if you'd like more detail.
emmag - CC moderator
I am so sorry to hear of your daughters diagnosis.
I would like to let you know that I am available to chat should you wish to.
My mothers cancer progressed to her brain and we were advised that it was inoperable.
The emotions are much like that of a rollercoaster aren't they. The fear of the unknown and the waiting for results. Even waiting to see the doctors just makes you almost hold your breath until they deliver the news.
You make it through day by day and when you look back sometimes you just wonder how it is that you managed to get through each day.
It's a time of many emotions that we have no control over. You can be standing there washing the dishes and the next thing your in tears and you have no idea where they came from.
Im here if you would like to chat.
Hello Artemis, I am new here too, I had cancer twelve years ago and am a survivor.
You know, from what I have read, your mother being unique in every way, will confound the doctors and live a great deal longer.
So often they are giving only an approximate of length of life based on their experiences of what they have seen, they can never know for sure what the life force is in a person and they are so often proved wrong in the predictions.
Please don't think of her having 'only two years left', think of her as alive and quite unique and believe in her - not the doctors okay? 🙂
Hi to Artemas,
My mother has also been diagnosed with cholangiocarcinoma in December. We have heard all sorts of time frames from 6 months to 3 years - any "time frame" is hard to hear isn't it. We don't like to think about an expiry date for our loved ones. I lost my father 17yrs ago to bladder cancer and it went pretty quickly unfortunately. Mum's tumour is very high in the bile duct and cannot be operated on due to it's location. It's frustrating that it is such a rare cancer - not much support out there for it is there?
My mum survived breast cancer in 1996 and again 2002. She is 76 and an amazingly strong and positive woman (I wish I was more like her). She is very practical in her outlook about cancer where as I'm devastated. I try and hide that from her, but sometimes the tears just flow. I love my mum and I always thought she'd live to 100 because she is so fit and well compared to most her age and such a "go get them" attitude and a survivor - do whatever it takes. This latest has come as quite a shock. To be told there is no treatment is a real blow.
She has had 4 ERCP procedures - 1 was balooning, 2nd a plastic stent - got an infection, 3rd a replacement plastic stent - another bad infection, and now as of Feb she has a double metal stent in place and touch wood she is going amazingly well. After terrible pain and discomfort for a week afterwards, she has much more energy and feels more like herself and amazingly her bilirubens are back to normal. The main problem at the moment are her bowels - trouble getting them regular. From one extreme to the other but at the moment difficult - therefore she takes Coloxyl Senna in varying doses. She is on a low fat diet with no red meat. The doctors said eat whatever she want, but you wonder if they say that because she only has limited time. We have slowly been introducing a bit more fat into her diet and she has put on a bit of weight again. Sustagen drinks in between meals have helped. She only has 1 rest a day now instead of 2.
We hope she will be like her sister and prove the doctors wrong - she was given 2 years and went 4 years.
The main trouble for mum is when (and the do say when not if) the stents block up - her 2 stents are extremely high up in the bile duct and difficult to reach, therefore difficult to re-stent when the time comes. I have moved countries to live-in with her and help care for her. I don't have any children, therefore easy for me to move. But I feel like I've put my life on hold and the emotions attached to that are up and down. I'm really enjoying spending time with her now she's feeling so much better, I thought I'd lost her already back in January - with such bad infections and her not being herself - it was hard to watch. If I can get some quality time with her now will be great, but I feel like we are watching a clock that is going way too fast. They have said chemo is only palliative in mums case and we see oncologist again in May.
Wow, I've really waffled on - if nothing else, this has been a good release for me. I don't blame anyone if they don't read this - far too many words....
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.