How do you cope?

I feel really badly for your mother as well as for you and anyone else who might be supporting you.

Cancer is such a dreadful disease. And to now be supporting your mother, after losing your father, must be especially difficult and traumatic.

I'm wondering if it would help to be a bit aggressive and ask the oncologist specifically what the purpose and intent of "maintenance" is for your mother. I'm assuming it's to maintain the current condition w/o allowing it to become worse. Has the oncologist indicated any possibility of other treatment, or of going a step beyond maintenance to provide more relief? It does sound as though your mother's qualify of life isn't very good.

Is there any possibility for other means of pain relief than the strong pain killer she's now taking?

Please don't take this the wrong way; that's not my intent. But I'm thinking that as miserable, uncomfortable and in pain as she is, if there's no hope for curing the cancer (albeit it that the tumor is small), I would want to know what (a) what stage the cancer is (b) what the expected life duration is and (c) if it's appropriate to consider hospice at this stage, in recognition that her quality of life is probably quite low. I think at this time, that issue is probably the most important.

There comes a time when suffering is so great that other methods of relief can be considered. If there's no possibility of improvement, is there any justification on the medical team's part for prolonging your mother's agony?

If you have close friends in whom you can confide and who support you, you might want to ask them to accompany you to a meeting with the oncologist so they can help get a true picture of the options your mother faces.

You're clearly in agony and need some support. Your profile doesn't state where you are, so I can't search for any local Gilda's Clubs. But if you can find one, you'll definitely find companionship there; everyone has some experience with cancer and would understand what you and your mother are facing.

My sister fought for several months against her metastasized cancer, fighting a losing and horrific battle. Neither of us could accept that her condition was terminal. In retrospect, had I known more about what she faced, I would have suggested hospice at an earlier stage before she became so compromised in literally every aspect of life.

I do hope you can achieve some peace as you go forward.

Play some of yours or your mother's favorite music to help offset the emotional and physical pain she's facing, and remember that sometimes to do the best for someone you love, it takes much courage and emotional pain at the time. But in the long run, her pain could be alleviated, as could yours.

Peace and solace to you as you move through this difficult and challenging time of your lives.

TheBoogs we were just thinking about you a couple weeks ago and were wondering how your Mom was doing. Thanks for the update. We were hoping to hear more positive news, but cancer can be difficult as it is a force within its self.

Has the oncologist mention anything about "immune therapy"? This seems to be the newest quest to chase down cancer.

I am wondering if your Mom needs a higher level of care. There comes a limit on what we can do if we aren't in the medical field ourselves. Have your sisters mentioned this? If yes, and you prefer Mom to be home with you, maybe that is a reason your sisters have slowed down their visiting. They want Mom in a skilled facility, to be around people of her own age [elders love to compare notes with each other about their illnesses and talk about family], and to have skilled nursing care around the clock. That's something to think about.

I understand your reluctance to speak about the dificult time yoyr Dad had with Hospice, but do know, that every experience is not the same.

I would pressure your Mom's Dr, to initiate Palliative care (research this), which is much like Hospice, but there doesn't need to be the "6 month", expected end of life qualifications.

She would be managed by team of Drs and providers, to make her remaining time, more comfortable and live her life to the best possible way, in which she can manage.

Opiates are double edged sword, but are nessesary in the type of pain you describe. There are ways to get her comfort level to rights, and also manage the constipation issues that come along with their use, as well as with the unfortunate issues with her rectal cancer. Eating rehydrated prunes in the morning, Mirilax and other formulas that the Drs can recommend come to mind, in dealing with my own Mother's Cancer, and end of life care. It's not easy, and requires a lot of trial and error, but it does sound like your Mom needs Hospice, or simular care at this point, I am so sorry!

You too, need the added level of support and services, to aide you in managing her care! They would be able to get you some Respite care, as both Hospice and Palliative care does offer it. My understanding of Palliative care, is that you do need to live fairly close to medical facilities, as this is where they can form the network of carrers, and the team to help you, and often the two go hand in hand, and the patient often progresses onto Hospice. I'd start by having her evaluated by a Hospice group, though not the one who was involved in your Dad's care. Good Luck, I know this is a long and difficult road for you, and you need all the help you can get!

(((HUGS))) The opiates will cause constipation of course, which will cause more pain and discomfort, which requires more pain medication... an endless loop. I hope you can find someone who can honestly answer all your questions. Are you able to discuss with your mother what she really wants?

That's the thing. No clear answers. The tumor came back (she was cancer free) and is very small. So the doctor out her on chemo to maintain or hopefully, lessen or heal it (pill form). She is taking oxycodone every four hours and on Fentenyl patches. They can no longer operate on the tumor since she opted out the first time so they could do experimental brachytherapy on her, which ultimately thinned out her walls so much, that at times, when she bleeds from a bowel movement, she needs to be hospitalized for sepsis (since bacteria gets in the blood) and blood transfusions.

I'm praying she heals... :(

Maybe an unrealistic expectation...

I would think that to "maintain" implies maintaining her quality of life, not extending it. And if she is in pain all the time as well as suffering the effects of chemo I don't think their approach is working, do you?
In the book Being Mortal by Atul Gawande he describes the different perception between doctor's expectations and those of the patient and their families, while the docs are often thinking in terms of gaining weeks or months the family is imagining years. You need to find someone who will spell it all out for you in plain language.

If she's in pain 24/7 then I'd find a doctor to help with that. Addressing her pain would be my first priority. Unless that is addressed, then I can't see how anything in the home would be acceptable.

I'd also have a frank discussion with her doctor about her chemo. I'd get details on what that means, since it's not clear why she's taking chemo. I'd ask for an actual diagnosis, prognosis and treatment plan and options, such as hospice. I've read that they are different and that you may need to interview several different Hospice providers. Sorry you had a bad experience, but, I wouldn't let that prevent me from getting that help for mom, if she's eligible and needs it.

The thing is, they didn't diagnose her with "terminal cancer" and believe it'll lessen or maintain it. Isn't hospice for end care? We did that for my dad. Our experience was horrific with them. They disrespected him with a huge lack of dignity. Don't wanna get into the details, but they left him in an inhumane way which I will never forget. :(

I'm so sorry that you're going through this! It must hurt so much to watch your vibrant mom go through this!

Is hospice involved? Hospice can be of great comfort, certainly to the patient, but also to family who are grieving in their own ways, anticipating what is to come. They can also help you make sense of your mom's prognosis, if her doctors haven't been clear about that. ((((((((Hugs)))))))))))