Hi Just Me,
I'm afraid this is going to be me very soon. I lost my father 17yrs ago and I'm in my late 30's now and my mum has inoperable bile duct cancer. I don't have any children, but I do have a very supportive partner who is amazing. I too have a brother that is a problem (same - I'll hold back the details in public) and the emotional strain is huge. I hope you are still visiting this site to get support from it. It's late at night that sometimes is the most difficult. Having a daughter will give you much strength I think. You will find love and comfort there, but nobody can replace your mum and I know my mum will leave a HUGE gap for me when the dreaded time comes - I try not to think about it. I'm going to see a phychologist in the next few weeks to discuss my emotions regarding my mum (and my brother) - I hope it helps - I'll let you know.
Let the tears flow freely when you feel grief (I believe we all need to cry) and also let the happy memories flood in when they come. Wishing you strength.
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Very sound advise. I lost my dad 17yrs ago to cancer. My mum survived breast cancer 1996 & 2002 and now sadly has terminal, inoperable cholangiocarcinoma (cancer of the bile duct). She is amazing and always so positive. I get on the emotional rollercoaster and some days are better than others.
She is doing really well at the moment (touch wood) and I must remember to continue giving her her goodnight hugs. I love her so much and am dreading the time that I will miss her. I am also dreading the downward sprial that I know will come before the end. I sometimes forget that she doesn't get as many hugs as me (I have a very loving and supportive partner thankfully) and when she is so well I tend to take it for granted - tomorrow I will continue with the nightly hugs - thank you for the reminder.
Hope you are doing well.
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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....
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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.