jmoneypenny

Carolann – I see that you’re in the UK and already the UK people have gotten right on track, giving you the information you need. I’m in the US so couldn’t help you with that stuff – I’m so glad there are such knowledgeable and helpful people on this board who CAN help you with all the practical details. I should have realized you were in the UK since it was 5 in the morning here! I just can’t sleep since my mother passed.

Anyway, keep in mind that everyone’s case is different with this horrible cancer. Some people live only 2 months – like my mother – and some people live 8 years or more after diagnosis (there are a few miracle stories on this forum, lots of people still going after years, especially if they’re young when diagnosed). The doctors tell everyone they have a year, maybe 2, and everyone’s different. If they’re putting a stent in her bile duct so that it’s not blocked, that seems to work wonders for many people and gives them a lot more time and a lot more quality of life. Right now you still have hope – so cling on to that or you’ll go crazy!

Best of luck and sorry I didn’t respond sooner, but I had to go to bed eventually- Joyce

Carolann, I just lost my mother to this and also feel so alone in the world – my heart goes out to you. Just know that there is always hope. She was just diagnosed so you don’t know the full details yet – find out if she can get surgery, or chemo, or get more opinions if the doctors aren’t coming up with anything. Some people respond amazingly well with treatment. You just have to make sure the docs are on top of it.

But most of all, show her your love and spend every precious minute with her. It’s hard to pretend to be strong – I know – so give yourself time to cry and cry when she’s not around – and even when she is. I think sometimes I was too strong for my mother and she needed me to cry with her.

Dear Bernie,
I have so much to say to you and I don’t want to exhaust everyone’s patience on this board! I feel so badly for you – and I know it’s also a form of SELF-pity, since your mother’s situation is so similar to mine and your love for your mother shines through so brightly. I have lost my best friend and I need a shoulder to cry on and you’re welcome to cry on mine.
I have to give dinner to my daughter now (the apple of my mother’s eye, and she’s very upset at losing Grandma even though she’s only 4) but I will write back later. One piece of advice I have is that you should listen to the opinions of the hospice people rather than doctors (if the hospice people are competent – I guess not all of them are). The hospice nurse saw the signs of end of life a week before my mother died, and I couldn’t believe her because my mother seemed to be doing pretty well. She told us certain signs to look for at the end, like the skin under the fingernails turning blue, shallow breathing, etc., and she was absolutely right. The trouble breathing my mother had was discounted as “anxiety” by the doctors, but hospice told her that cancer patients – no matter what kind of cancer – often get shortness of breath because of the anemia brought on by chemo and just general shutting down of body functions. They recommended small doses of morphine since it’s a respiratory depressant – it doesn’t make you stop breathing, just makes your breathing easier and it helped my mother immensely.

I’ll write back later and check up on how your poor dear mother is doing. It’s hard to be strong when your heart is breaking – for your father too – and I hope you’re holding up as well as you can.
– Joyce

Dear Bernie,
Your response was so touching. I am so glad your mother and your father have you as support. I understand that you don’t want to intrude on your parents’ marriage – my mother was alone, as my stepfather died 4 years ago, so I was the one trying to make all the decisions (along with my sister, who lives further away). I hope your mother is continuing to do well. It’s so frustrating to deal with the ups and downs of this cancer – my mother was walking (with help) and eating 2 days before she died, and we were under the impression that cancer victims wasted away slowly and weakened over time, which wasn’t the case this time. Like I said, everyone is different. Please keep us updated on your mother’s story, especially if everything is going well!

Much love, much luck to you and yours.

– Joyce

Bernie,
I don’t want to be a downer and I believe you should get hope from the other postings here and research your options — yet: my mother was in a similar situation to yours, and in hindsight I wish I hadn’t dragged her to chemo. It weakened her immune system, gave her an infection so she wound up in the hospital, and did NOT give her the quality of life they assured me she’d have. She took Gemcitabine and Xeloda, only did two sessions in all. Everyone reacts differently so your mother may not have the bad side effects that mine did. And the doctors kept telling us her disease was “stable” because of the chemo even the week before she died. They may have thought that because they’re mindless chemo-pushers or because she had intrahepatic cancer so she was rarely jaundiced and never had any bile duct blockage or stents put in. She even had somewhat of an appetite up until the day before she died. The week before she died, they wanted to try more chemo!! Both lobes of her liver were covered in countless tumors and they never pretended that chemo would do anything but stabilize or maybe shrink a few of the tumors to buy time, so it was considered “palliative.” I don’t know if the chemo hastened her death or just did nothing at all, but she died 2.5 months after diagnosis so it couldn’t have bought her THAT much time.
By all means, try everything you can for her, but if she’s stage IV and is very tired and ill, sometimes it’s kinder to call hospice and try to keep her as comfortable as possible. My mother wasn’t ready to go, either – she had so much to live for, was only 64 years old — and we always had hope and let her believe there was hope, too. But she knew that time was running out, and taking her to doctors’ appts exhausted her so much that I didn’t have the heart to do it anymore.
There is no RIGHT answer with this disease, so please don’t beat yourself up if you give up on chemo, and/or you decide to try some new treatments. Either way, you’ll have used your best judgment and done the best for your mother, with love.
One more thing and then I’ll stop my gloom and doom: you say your mother’s ankles and knee are swelling, and that happened to my mother in the last two weeks of her life. By then the side effects of chemo had gone, so I think it was part of the disease process and not the chemo. Her abdomen was VERY swollen, too. But again, everyone is different and this disease progresses differently for each individual, so please don’t put too much stock in what I say. I just feel so bad for you and the decisions you have to make and my heart goes out to you. If I had known my mother had such a short time left, I would have done so many things differently – but how can any of us know? There is always hope and there are always people who beat the odds or react well to certain treatments, so I’m not telling you to give up hope. I’m just saying that my mother’s situation didn’t turn out to be one of those miracle remissions we had wished for. I sincerely hope your mother is one of those amazing cases that DOES fight this cancer.
Maybe I shouldn’t have written to you so soon after my mother’s death – so take all of it with a grain of salt and please understand that my grieving is making me second-guess everything I did. You say that you’re showing her all the love she’s inspired and making known how special she is, and that’s the most important thing of all. My thoughts and prayers are with you. – Joyce

Hi Allison-
So glad you’re mother’s doing better! My mother did receive Procrit yet still wound up severely anemic, but she’s 64 and your mother’s much younger, so that may have something to do with it. Also, my mother has never tolerated drugs well, has many autoimmune and allergy issues, and her disease is very advanced. I can get mad as hell at her doctor for suggesting this chemo regime and thinking she could tolerate it, but it seems a lot of people DO tolerate it well. I’m happy it’s working for you and I’ll keep you in my thoughts — lots of hope for the best! – Joyce

Hi – My mother has a somewhat similar situation – was just hospitalized today for what they think is an infection, but her bile ducts aren’t obstructed either – they checked everything out and they can’t explain why she’s jaundiced, feverish and short of breath. Her cancer has invaded both lobes of her liver, though. She really scared me today because she couldn’t catch her breath and her lungs are fine. They think anemia from the chemo treatments is causing this, and the pressure from the cancer in her liver. And then maybe the infection, too.

Best of luck to you and your dad – please let me know how he fares with his infection. It’s important to find the right antibiotics when the body’s immune system is so compromised. I wish you all the best –
Joyce