jmoneypenny

I realize my last post may have been confusing – my parents were NOT in W Sussex, but in NY in the States.
-Joyce

Hi Val,
So sorry that you and your husband are going through this. I think you will see, if you search through some of the posts, that chemicals and environmental factors have been mentioned quite a few times – in my own research, I saw that people who work in certain industries have a much higher rate of certain cancers, including cc. Someone here (I forget who) had a husband who worked in the auto industry and was exposed to toxins. If you do a search for “toxins” maybe, you can see what other people had to say. Also, there was a discussion concerning Agent Orange exposure for those who fought in Vietnam – there seems to definitely be a connection there, also.

Best of luck to you and your family,
Joyce

Hi Karen,
So sorry that you and your mother have to go through this. I don’t want to give advice, just my experience: my mother had bad abdominal fluid retention, though they never mentioned if there were cancer cells in there. They DID tell me that my mother had to get back on chemo or within 2 weeks her liver levels would be too high for them to do chemo. I took this as a sign that we should get hospice and discontinue chemo, since she was so weak and the side effects for her were terrible. Well, she died about 2 weeks later.

This is just my experience, whatever you choose to do is a valid decision – it depends on you and your mother and how well she tolerates chemo.

My heart goes out to you, and I hope for the best-
Joyce

Dear Bazel,
I feel for you in this stressful time, and I think Jeff and Fran both gave very good advice and information. I know I was always looking for answers when my mother’s health took a turn for the worse or the better, and I still don’t know if the chemo weakened and killed her a little early, or if the disease was just progressing on its natural, devastating course.

As I always say, this disease is so different in each individual, so there is really no answer. The chemo can be quite debilitating for some people, so he may be feeling the side effects of that, and I think those can last longer than they lead you to believe (Xeloda didn’t bother my mother as much as the Gemzar – and I think mouth ulcers are definitely a chemo side effect). On the other hand, there is the possibility that the disease is progressing. Don’t beat yourself up thinking that you wasted your time with chemo and made him suffer – it’s a decision that’s purely individiual and you never know if it may work or not, and I’m sure you are doing the very best for him and he thanks you for it. I often feel guilty that I allowed my mother to endure the pain of two rounds of chemo, but we had to take a shot and we couldn’t know that she was too far along and too sensitive to the treatment. If you feel your dad’s quality of life is being compromised by the chemo, I would see if he was amenable to taking a break or discontinuing completely – he may be relieved at the suggestion – or he may want to continue, and it is his right to choose either option.

As Fran said, the carers are burdened with the big questions and worries, and we all do the best we can in a sea of uncertainty. And as Fran also said, sometimes people bounce back SEVERAL times when you think all hope is lost. Hopefully the oncologist can give you a better picture of what’s going on, but I just wanted to give my two cents of support and say that you’re doing a great job and there are just some things you have no control over, much as you try. Jeff’s suggestion about hydration is VERY important, too. I wish you and your dad the best of luck.

Fran – so sorry to hear your husband is doing poorly, I know how gut-wrenching it is. I’ll just hope that’s he’s having another slump that he can bounce back from — but it’s hard to live this roller coaster, hard for the patient AND the caregiver.

Much love sent to all of you,
Joyce

You just jogged my memory – my mother was complaining of hearing loss and I did accuse her of suddenly going deaf after she got diagnosed. No water gurgling, just a loss of hearing – she was on chemo, but not for too long, so I don’t know if that was the cause.
-Joyce

Hi Lana,
My mother had intrahepatic – from what I’ve learned and from my experience, I think there are usually less noticeable symptoms with intrahepatic. No need for stents or drains, usually, as the ducts outside the liver aren’t usually affected. My mother never had jaundice until the very end, had some pain and fatigue and nausea but it showed up pretty late and it wasn’t too bad until the end.

I’ll write more later if I can think of it – it makes a difference if there are metastases, too.

-Joyce

Dear Jules,
Just so you know you’re not crazy (or maybe you are, and then I am, too) – I have the same kind of anger that you describe. I read all the Kubler-Ross and assorted books on the subject, and they left me uninspired since they left out so much, especially this anger. They state that you have anger toward the person who died and you tend to idealize them, and in my case that is simply not true. I’m not angry at my mother AT ALL and I’m completely aware of all her irritating little faults that used to drive me crazy, so I don’t idealize her. I am angry at the WORLD in general, at this life for being like this, at cancer, and when I see worthless, unloved people live to a ripe old age I’m angry at them, too, for living so long when my mother could have used those years. For a while, every time someone pissed me off, I’d think “Okay, that’s two years off your life to give to my mom.” I hear people talking about their grandchildren and I’m angry that they get to see their grandchildren and my mother, who lived for my daughter, can’t be here for her. I guess I’m angry at fate, kismet, whatever, and in my stubborn way I’m refusing to accept reality because there has to be a way I can change it! Not rational, like you said – but very human and normal as long as it doesn’t become psychosis or something.

When my beloved stepfather Dennis died 5 years ago, at the funeral I commented to his brother Eddie that my stepfather looked just like Eddie (Eddie is very skinny and my stepfather was wasted away with cancer when he died). Eddie is a great family friend, always has a joke, and he said “Yes, I bet you wish it were ME in that coffin instead of my brother.” I knew he would understand when I said, “To tell you the truth, Eddie, I love you like an uncle but I DO wish it were you in that box instead of Dennis.” Eddie understood, as I do, about the “bargaining” phase of grieving – right now I’d exchange anyone in the world if it would make my mother live again. Just like “Year of Magical Thinking” – a great book about some aspects of grief. And don’t get me started on anger toward doctors!!!

I read all the grief books and I can recommend some to you – I’m a big reader but I just can’t seem to concentrate on anything that doesn’t have some relationship to my mother since she died, so the death and dying books give me a connection. I can’t share my thoughts with anyone because they just think I’m obsessing, when I’m just trying to deal with my pain and they can’t possibly understand or say the right thing (I just love it when people tell me that she’s not suffering now – of course I don’t want her to suffer, I just want her back the way she was when she was healthy!). And yes, I’ve had the annoying one-upmanship game played on me — everyone tries to top your grief! I can sympathize if they’re really hurting and just sharing with you, but very often it is just a game of “I had it worse than you and I survived, you weakling.” Even worse, I think, are the people who won’t mention my mother at all — as if she never even existed, as if she doesn’t matter anymore. Yes, you need to go over and over all the details of your father’s illness and his last months – that’s something I still do in my head and it has to be released somehow. Like KateG’s posts about her mother, it’s just natural to want to make sense of this senseless horror by writing it down and/or talking about it. No one wants to hear it except those who have gone through it and/or those who loved your dad almost as much as you do — and even then, they may be no support since they’re dealing with their grief in a different way.

I read this over and realize that I sound VERY angry, when in reality I’m really not – like you said, emotions are all over the place. I don’t want to sound like I go through every day wishing everyone dead and hating everyone! There’s just such a frustration at reality, that makes me want to shake my fist at the powers that be, and it can come out in anger, sadness, self-pity, defensiveness – everything. I’ll be fine, talking to another parent at my daughter’s school playground, and someone will mention their mother and I just choke up and try to hold back tears – I’m sure they think I’m crazy! After a month or two is over, people expect you to just get on with life and not make them uncomfortable by showing your grief. It’s a very lonely process and I often say it’s a very self-centered one, because you have to heal yourself and turn inward to find the strength you need, and can’t be bothered wtih other people’s trivialities too much.

Anyway, I know the pain is still very new and raw in your case and I just wanted to write to empathize with you and vent some more. That’s all anyone can do that matters right now. I’d respond to the other posts but I’ve already gone on too long. Though I must say that meditation is a great idea and it has helped me a bit.

Much love going your way,
Joyce

Hey Lisa,
That was a beautiful story about the patient with cirrhosis – you really did make a difference in this world, and that’s an amazing thing. So wonderful that you did so much for so many people, now for your father, and that you’d like to be involved in hospice. I really admire that.

And I just wanted to say I know you have feel about the veterinary field — one of my best friends became a vet, and I watched as she became more and more cynical and uncaring about the animals she was in charge of and it sickened me. She started her own vet practice and loved to say that if she could do it over again she would be a physician because they actually get to make money. I believe that doctor training — whether for human doctors or animals — stresses the omnipotence of the doctor and doesn’t stress the empathy aspect as much as it should, and as a result we have the incredible arrogance and insensitivity of many physicians and vets. Once she got her Ph.D, my friend became so insufferably arrogant and acted like she was superior in some way because of her schooling (I had just as much schooling, just never got a PhD, but who cares?) I really don’t deal with her anymore – especially after she told me she participated in a clinical trial where she injected cats with feline leukemia just so she could record every painful detail of how they died. I’m someone who is allergic to every animal yet I still have a cat and used to have a dog – my whole family is allergic but we’re willing to sacrifice. My sister and I are also vegetarians because of this, so you can see how much we love animals. On the positive side, I also have a friend who became a vet later in life and she absolutely does EVERYTHING in her power for her patients. She had a dachshund with paralyzed back legs and she fashioned a little skateboard for him and he drags himself around very well and he’s a very very happy little dog.

Okay, now I’m rambling and off the subject too! Glad to hear your dad is keeping his sense of humor and I hope your experience with hospice is as good as mine was. Other than one nurse that was insensitive (so I fired her from my mother’s case), we got such compassionate and personal care from hospice and I donated money to them afterward in appreciation of all their kindness and caring.

And of course you know more about taking care of your dad than they do! No matter how good they are, you’re the main caretaker and hopefully they’ll respect that.

Best of luck – hope your father’s spirit continues to be positive.

(As another personal note of my own, today was very difficult, as my sister and I went to the cemetery with my mother’s cremains to finally get them interred in the family plot. My mother never wanted anything done with her remains, as she thought they were unimportant, but the box of her ashes has been sitting on my desk for months and my sister and I finally realized that we wanted a real home for those ashes. It’s not for my mom, who wouldn’t have cared, but it’s for US – so we have someplace to visit on her birthday and Mother’s Day. I never thought it was important, but it’s funny how those little rituals take on meaning once something happens to you. It was a grueling day and my eyes are so swollen from crying and I have a migraine. Enough of my pity party!!!)
Joyce