jmoneypenny

Hello angiecat,
I’m so sorry to hear your mother is suffering so much – and that you are, too. I think it’s wonderful that she was able to battle this cancer for so long, but her doctors should be managing her pain better – it’s just not right that she should suffer like this. I have nothing to offer you but my good wishes and a compassionate ear, to let you know you’re not alone. But I also wanted to ask you about the rib deterioriation, as I’ve never heard of that before. Is this something that is caused by cc? Or is there cancer in the ribs? I think the knowledgeable people on this board can better help you if they know the cause of it.

Best wishes to you and your family –

Joyce

Rae,
It sounds like you and your family are doing all the right things (well, except for the treadmill!) and working together as one unit, which is so great. I wish you continued success in this battle – your father sounds like an amazing person!
– Joyce

Dear Tina,
I felt the same way — so strong in front of my mother and 4 year old daughter, crying all the time when I was alone. Just cherish your mother as much as you can while she’s still here, there’s nothing else you can do. I felt so helpless as I’m sure you do, too – and angry at the injustice of a wonderful person leaving this earth too soon. My daughter was so close to my mother that she gave her Mother’s Day presents and didn’t give any to ME – – I’ve actually had to get counseling for her, and she’s only 4 years old. Every time my daughter says something funny or learns something new, like her numbers and letters, I have to go somewhere and cry because my mother will never get to see the light of her life grow up.

But there may still be hope in your mother’s case – I’ve heard on this board about people with portal vein involvement and they’ve somehow pulled through. You may want to ask in a separate thread about that, as I don’t know much in that area. There’s always hope! In the meantime, lean on anyone you can to help you through this time, and don’t be too hard on yourself. Your mother loves you more than anything and you don’t have to be strong for her ALL the time. In hindsight, I wish I had broken down in front of my mother, just to show her how much I was hurting. I heard that my mother said I was a “stoic” when I heard her diagnosis – and I know she must have known my anguish but I never showed it. But I wish I cried and held her in my arms so we could have grieved together. Oh, there are always a ton of “maybes” and “should haves” – which is why I’m saying don’t be too hard on yourself. It’s a terrible thing to go through – my heart goes out to you.

I wish you peace,
Joyce

Charlene,
Your husband sounds just like my stepfather, who died of lung cancer 4 years ago, age 59. My mother and I took care of him and did everything for him, because he would never even admit he had cancer – even at the very end. The thought was too scary, so he would sometimes even talk to the doctors and not tell us what was said. Some people just have to live in denial – it’s the way they cope. While it was extremely frustrating, we tended to humor him most of the time – unless something very important came up, like a decision about chemo or having him sign over his power of attorney or Do Not Resuscitate order. He would also never admit to having pain. I was always giving him pain medicine whether he wanted it or not.

It’s so hard to have to do everything for someone in denial like that, so I know what you’re going through. It can drive you crazy, yet you still feel so sorry for the person that you just can’t come out with the blunt truth — and even if you do, they’ll still keep acting like they don’t know. Most people want to know the truth but some people want to be treated like children and have the decisions made for them – and I guess that’s your job. Even my mother, at the end, started thinking she had another year or so to live – and how could I take that away from her? The caretaker is the one who has to keep everything bottled up and never show the strain, and it takes its toll. I do so feel for you – it sounds like you’re doing everything you can and being a great advocate for him. And maybe your husband will snap out of his denial once the shock has worn off — right now his mind is trying to cope with the fact that he may be dying and it’s a very difficult concept to cope with.

I hope you have some people you can lean on for support in this scary time – and you always have us, on this board, if you need an ear.

All the best,
Joyce

Dear Hazel,
I am so so sorry to hear the bad news you got about your father. My mother was in a similar situation, and we kept hoping for a miracle that never came. I hope your father is that miracle we missed.

It’s always a good idea to get a second opinion – unless he’s so weak and fatigued that it takes away from his quality of life to drag him to doctors. I’m sorry I’m on the east coast so I don’t know of anyone in that area, but I’m sure others on this board can steer you in the right direction.

The only words of advice I have for you: Never give up hope, show your dad how much you love him every moment that you can, and even though you have hope, be prepared for the worst and help him through it.

There are people on this board who have had great success with natural herbal remedies and natural diets – look under the heading of alternative therapies. Chemo is also an option, though it’s not very helpful for most cc patients — but that’s a decision that’s up to your father, his doctor, you and the rest of your family.

My heart breaks for you — I know how you must feel, and your dad is so young. I don’t know what to say except that you always have friends on this board who will try to answer your questions or just be there for you if you need to vent.

I wish you peace and hope,
Joyce

Hey Jeff,
You do deserve a vacation and a break – you’ve been such a trooper and I can only imagine how your wife must feel. For one thing, she knows she’s lucky as hell to have you!
Much luck and love – enjoy your time off!
– Joyce

Dear Rae,
I think you will see that a lot of people on this board opt NOT to have chemo — it’s something I agonized over with my mother, and in hindsight, I would never have allowed her to do chemo at all – we just said we’d give it a try for a bit and if it was too much, we’d stop. Everyone is different and there is no right answer – I know I felt guilty advising my mother against chemo, like we had given up, and we were pressured by doctors to try it, but after her 2nd round of it, I just flat-out told her she was NOT going to have any more chemo, and she agreed. I couldn’t stand seeing what it did to her, mentally and physically, and I believe it actually hastened her death by weakening her. Not to mention that she had to be dragged to the oncologist and made to wait for hours in a waiting room when she wasn’t feeling well — it was so dehumanizing and she wanted to be in charge of her own destiny and her own death. I greatly admire the fight my mother put up, especially at the end when she had given up chemo, and I also admire those who continue different chemo regimens and keep fighting in that way. Some people tolerate side effects better than others. I would say that my mother’s history of autoimmune problems made her a very poor candidate for chemo, and the same could probably be said for someone with diabetes – it complicates everything.
I’m just rambling on and on when what I really mean to say is please, don’t feel guilty! It’s your father’s decision and you’re doing the right thing by respecting his wishes. The guilt still gnaws at ME but I know in my heart that no one knows the right thing to do in these cases, and you have to make sure you have good quality of life for as long as possible. I know your father is making the right decision for his particular case, and as long as he’s at peace with that, all you can do is support him and show your love every precious minute that he has left.

I feel for you and wish you and your family the best – I know there are miracles out there and I hoped for one for my mother, but maybe your father will be the next miracle – who knows? The only thing I would advise is that you make sure your father has accepted the possibility of his own death — my own mother became very depressed near the end and it helped her immensely when she saw a hospice counselor and then a clergy member. Sometimes it’s hard for parents to discuss these things with their children and/or family and it helps to have a disinterested party to talk to.

Again, all the best going your way,
– Joyce

J. Young,
My mother was also told her cc was inoperable, but I was in the room with her and the oncologist when she was told that, and I was armed with facts and ideas from my research and from this board. When I questioned the dr., he said there were too many tumors and they affected both lobes of the liver. When I asked how many tumors, he said “uncountable – maybe hundreds, or thousands.” So there went all our hope out the window. It could also be inoperable because of her age, the state of her health in general, or the location of the tumors. Also, if it has metastasized to other areas, they usually won’t do a resection because there’s no point when the cancer is already invading other areas.

It’s usually a slow-growing cancer and they made my mother wait a month also. I tried everything to get her an earlier appt., but everyone was just booked up. Though it’s slow-growing, if there is ANY hope then I believe it’s best to see the doc as soon as possible–just like with any other cancer, time can be of the essence. Unfortunately, wtih cc, diagnosis usually comes when the patient is already Stage IV and there are only palliative measures available.

Sorry to be so brutal – please understand that your grandmother’s situation can be very different from what I’m describing. I can sympathize with your frustration because it will be very difficult to get her to divulge anything or go along with your wishes. My own grandmother, who is 90, is driving me crazy in the same way – though she doesn’t have cc. It’s hard to balance your need to help her with your need to respect her wishes. But you can’t force her to do anything – if she’s like my grandmother, strong, independent and stoic, then she’s an immovable force and you shouldn’t feel guilty if you can’t get through to her. Just try to be there for her and help her as much as possible and let her know that she is loved. I’m sure you’re already doing those things, as you obviously love her dearly. But sometimes that’s the most important thing of all.

Best of luck to you and your grandmother, and I hope you have some good news and some hope coming your way soon. Best wishes and best of luck to you,
– Joyce