Help me ease the suffering of a family member with cancer.
June 19, 2006 4:03 AM   Subscribe

OncologyFilter: An immediate family member has colorectal cancer. I need advice and recommendations in several areas.

She was diagnosed with stage 2B anal cancer about two months ago and has been undergoing chemo and radiation ever since. She's about to finish up her last course of radiation this week, despite being burned so badly that she can hardly stand the pain. They insist on finishing despite her terrible condition. The doctors have her on some sort of dermal patch for the pain but have not given her anything stronger. I have a few questions. She lives in Illinois, FWIW, about an hour west of Chicago, and is on COBRA due to recent unemployment (exacerbated by her illness).

1. As her nephew, am I close enough in the family to advocate on her behalf to the doctors? She is clearly suffering more than she needs to, and both she and my mom are too (frankly) chickensh!t to speak up for what she needs. (My mom was married to a doctor for years and has a problem with standing up to male figures of medical authority, even when her sister's life is at risk. My aunt has spent her whole life avoiding doctors and doesn't even know her rights.)

2. She's got sores and blisters everywhere from the radiation. What to apply that will help, that won't infect and/or agitate the wounds? Aloe? Anything over-the-counter?

3. What can I make her, food-wise? Part of the triggering of the cancer, I'm sure, is her terrible diet. At this point, because of the aforementioned conditions, I think she's down to liquids. I'm thinking fruit smoothies with protein powder added for extra nutrition. Will the added protein stuff (usually bought at fitness-supplement places like GNC) cause her harm?

4. What books or movies would you recommend I buy for her that might give her a few rays of light? She is virulently anti-sentimental (a trait we share somewhat) and would not stand for any treacly, sappy, and/or "YOU CAN DO IT!" type books. Think fiction, great essay collections, etc. I bought her Party of One: The Loners' Manifesto and she loved it, and I think she at least leafs through the Pema Chodron that I toss at her, because she resonates more with Buddhism than with any other formal school of thought.
posted by mykescipark to Health & Fitness (14 answers total)

I'm sorry your family is going through this. You are not legally able to advocate for her (make decisions on her behalf) BUT you are certainly able to talk with her physicians. Make sure she signs the HIPAA consent form (at each doctor's office and hospital) which gives them the authority to talk with you. She still needs to make the decisions, but you will at least be able to discuss things with them and they will be able to answer your questions.

How old is your aunt?

The trick to cooking for cancer patients is to not cook in the house. Bring food in. Smelling it cooking will often take their appatite away. Ensure is a great alternative. I would be cautious about pushing food. Many cancer patients do not want to eat. It is a form of taking back some control from the cancer and treatments.
posted by Jandasmo at 4:53 AM on June 19, 2006

As her nephew, am I close enough in the family to advocate on her behalf to the doctors?

Depends, but if she says yes, then yes. (on preview.) Jandasmo notes the HIPAA regulations, and yes, they're doubtlessly paperwork involved. (I work with HIPAA daily, but from the claims side, not the patient side.)

I'm not a doctor, but checking some references, it seems that an aggressive treatment regime is common on this particular cancer.

If she is relatively young, thus likely to enjoy many years of life, provided the cancer is brought under controller, this is a good bet -- you're paying a year in hell to get decades of life. If she's older, with a limited lifespan remaining, then I'd wonder about the quality of life issues. The most common example of this is the 65 year old man who is found to have prostate cancer, that may well kill him in 30 years. Chemotherapy and radiotherapy require a good deal of stamina. Do you treat?

Be careful with topical treatments while on chemotherapy -- you never know what interactions may exist. Consulting an oncology pharmacist is wise, they can make sure any ointments or whatnot you want to try won't cause any harm. A quick check of some resources states that you do need to be careful of skin treatments and radiotherapy, but this becomes easier to deal with once the beam is done.

I don't know enough about medical radiation treatments to know how much skin damage is common or acceptable in treatment. A second opinion from another oncologist would be worth considering. I'm also hoping MeFi's resident residents docs would know more, but I don't think any of the AskMeFi docs are oncologists.

Nutrition is important, but the big problem here is that chemo and radiotherapy tend to wreck the appetite and cause nausea. Fruit smoothies with protein powder would certainly help, but will she be able to drink them and hold them down? Simple edibility is a huge factor in this -- if she hates the taste of fruit smoothies, she's not likely to eat them or keep them down. Finding out what she likes is a win. Some people (myself included) can't stand protein powder when were healthy.

Finally, one of the best things you can give is you -- just let her know that you're able to help in any way you can. A big part of this battle is wanting to win, and anything that helps someone want to stay alive helps.
posted by eriko at 4:59 AM on June 19, 2006

Response by poster: Yeah, I knew I didn't have power of attorney over her, but I was hoping to at least be able to speak with the physicians and at least be listened to, rather than simply "heard." I don't exactly trust the oncologists at the lowest rung of the socialized-medicine food chain, although that may be stupid of me.

My aunt is 59.

I agree with you about food. My aunt is really like my mother to me - she raised me when nobody else was around - so if there's anyone she listens/responds to, it's me, even moreso than her sister. Hence why I'm trying to do the right thing in these areas. I know her appetite will be sensitive, which is why I'm thinking a simple diet of homemade vegetarian soups and enriched/enhanced fruity drinks may be best.

Thanks for your comments.
posted by mykescipark at 4:59 AM on June 19, 2006

Response by poster: Some people (myself included) can't stand protein powder when were healthy.

Heck, I'm in weight-training and even I don't usually like the taste of this stuff, either, but I found a good, flavor-free variety that blends seamlessly into smoothies that (I suspect) she wouldn't notice.

Your other comments are excellent. Hope to hear from more folks to elaborate on the above as well.
posted by mykescipark at 5:02 AM on June 19, 2006

When my grandmother was going through chemo for pancreatic cancer, they recommended using powdered milk for protein instead of a GNC type protein supplement. They recommended that she just sprinkle some on pudding or in cream based soups. It is high in protein & calcium, which gets leached out with the chemo treatments. I also second the bringing food to her - the smell of food cooking was huge hurdle when taking care of her.
posted by blackkar at 6:21 AM on June 19, 2006

Look up support and caregivers' groups in your area. There's probably several that meet right at the hospital. Invaluable for exchanging tips and stories and getting advice from the folks who have been doing this longer than yourself. If the first one you try isn't your style, try another. Colorectal cancer is a common cancer, and a lot of people are struggling through the same questions you are.
posted by desuetude at 6:45 AM on June 19, 2006

Have you treated chicken stock? Most people her age were given chicken soup when they were ill and it may have good associations and not make her ill. Make it from scratch and it will be much tastier. Start with a thin broth and then if that works, you could try cooking veggies and chicken and then blending it in the blender to make it more consummable for her.

I would also look at the Ann Wiggmore diet - when my mother had breast cancer she went on it religiously and it seems to have been very helpful. Also there are all kinds of energy soups in it and it is a very very healthy diet.
posted by zia at 6:51 AM on June 19, 2006

Oops. Have you tried chicken stock?
posted by zia at 6:51 AM on June 19, 2006

Response by poster: I don't actually live near my aunt, unfortunately, I just happen to be here for the week and want to implement some helpful changes and get some information while i'm here. I could perhaps look into support and caregivers' groups where I live in Boston, but it would be more of a long-range situation from there.

She can't eat hot foods at all, so any soup or stock would have to be cold and/or lukewarm, I've discovered. I will consider powdered milk instead of protein supplements - I'm always looking for more, um, practical (if that's the right word) alternatives.
posted by mykescipark at 7:55 AM on June 19, 2006

I can completely empathize with your situation. My dad is currently in remission after being diagnosed with Stage 3 colon cancer in early 2003. He has had surgery and chemo, numerous tests and procedures and more chemo to treat liver mets. It's a one day at a time type of thing.

Legally, you probably can't make treatment decisions for your aunt, but being able to accompany her to doctor appointments, etc. is very important. Patients have to advocate for their own care and treatment. And having another set of eyes and ears when talking to the doctors is crucial.

Knowledge is power and don't be afraid to question the doctors. They don't know everything!

Check out the Colon Cancer Alliance for lots of great information about this disease. And for support, Cancer Compass is a great discussion board.

Colon Cancer is the second leading cancer killer in the U.S., but unfortunately, there is not enough public awareness about it.

Please know that your family is not alone in this battle. Thoughts and prayers are with you.
posted by socrateaser at 8:11 AM on June 19, 2006

If not you, then get a closer family member to get in there and INSIST that the doctors deal with her pain. In my experience, doctors under treat pain unless you make it a point. First politely, and if that doesn't work, as strongly as necessary.

There is no virtue in suffering pain and it's counterproductive to her recovery. Screw addiction concerns - deal with that later (and frankly, it shouldn't be a problem).

No, I'm not a doctor, but I've had my share of pain (blown disk, arthritis, and kidney stones) and have learned that doctors often need to be strongly confronted on pain control.
posted by cptnrandy at 8:40 AM on June 19, 2006

The patch you say your aunt is using may be a fentanyl patch, which is often used to treat the pain of patients with cancer, and is quite strong. However, it sounds like this is not effective for her (at least not on its own), and I would recommend a pain and palliative care consult if this is available through her cancer center/hospital (which it definitely should be). These specialists have more experience (and sometimes more compassion) in treating severe pain than other providers. If you can't get that consult, advocate for her with her doctor. Pain needs to be adequately treated, and the risk of addiction is very low.

I think a nutrition consult with a dietician who specializes in oncology would also be advisable, especially since your aunt's cancer directly affects the GI tract - you want something that is high calorie, high protein, palatable, and easy on the GI tract. Ensure is a staple with many cancer patients, but I am not sure what would be the best in this case.

I also second the recommendation for support groups - for your aunt, your mother, and you. They can be a good resource when you feel overwhelmed and alone.

My thoughts are with you and your family.
posted by tuff at 9:02 AM on June 19, 2006

Here's a little more information: For the sores there are 2 products which could work; 1). Silvadine 2). Golden Salve (available in health food stores. These are great for wounds, but don't use them without talking to the wound care nurse at the hospital/clinic where she receives the treatment.

For food supplement: Prosure is specifically for people with cancer.
posted by Jandasmo at 12:16 PM on June 19, 2006

For advice on nutrition, you might look at this AskMe. Although the poster originally asks for advice on protein supplements, there is lots of more general (and, in my experience, very useful) advice on diet for the very ill.

I will once again recommend What To Eat When You Don't Feel Like Eating. I'll just excerpt what I said about it earlier:
It's specifically for the exhausted patient (or caregiver) and contains simple recipes and tips for creating meals and snacks that are appealing and nutritious and, in many cases, good and fattening. And I found it mercifully straightforward and easy to read. At a time when the simple work of putting together a meal seemed suddenly exponentially complicated, this book was invaluable.
I am wishing the best for you and your family.
posted by Elsa at 1:16 PM on June 19, 2006 [1 favorite]

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