Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects.
Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Our schedule: I have no idea, but I hope Peregrine Kate will be along to fill it in.
If you want to volunteer to write a diary, please contact her.
Good evening—and I hope it is a good evening. Welcome to the Monday Night Cancer Club. Tonight's thread will be about caregivers (although you're welcome to post about any topic). I hope tonight we can share information and perspectives for our friends, kids, parents, spouses, and everyone else who helps us through our treatments. The idea is to put together advice and help for the people who help us, to make their unbelievably difficult job easier. Whether you're a patient or a caregiver, you have a lot to contribute.
I'm going to start with what I know about caregiving and what I've seen work. Then it's your turn.
It's easier to be a cancer patient than it is to love a cancer patient.
The thing is, when you're the one with the cancer, you know the game plan. You know what you have to do to get better. Your role is defined. The people who love you are flying blind. They have to figure out how to be encouraging and supportive, how to help clear away obstacles in your path and make your treatment as manageable as possible—in short, how to keep being your friend—and all the while they're worried sick about you, and sometimes don't know even what to say and what not to say.
Remember, they didn't volunteer for this duty any more than we did. The job that's thrust upon them is almost impossibly hard and almost impossibly hard to do well. Our friends do it, though. They see us through doctor visits, sitting beside us and taking notes, they take us to the hospital in the middle of the night when fevers spike, they cook and shop for us, they hold our hands and cry with us, they listen to us whine and rail and bitch and don't get too exasperated, they act as shock absorbers between us and the world, freeing us so we can concentrate on getting through and getting better.
And all too often we forget even to say thank you, especially to our close friends, our family, our spouses. Almost never do they expect us to say it, and they're deeply surprised when we do. So if you're in treatment now, don't forget to surprise your caregivers.
If you're in treatment now, you can make things easier for them, and for yourself, too.
First and before anything else, you need to do some soul-searching. This is your journey. You decide how to do it. Caregivers love you and will help you, but they can't take this journey for you. Your path--you have to walk it in your own way , the way that works best for you. For each of us, that way is going to be slightly different depending on our individual priorities, treatment regimens, lifestyles, and the thousand details that make us who we are.
So it's up to you to figure out what you want to handle and where you need help in getting through every day. Sometimes it helps to write it out, if only for your own reference. Huge swaths of your life will be out of your control, so focus on what you can control.
If you're lucky enough to have a supportive partner, your life is already easier. If you have a best friend you know will help carry your burden, you're good, although you'll probably do better if you can divide the duties among a few close friends. You see, your partnership/friendships will be tested in the crucible of chemo. Not all friendships survive intact. Some marriages don't survive it, either.
If you're lucky enough to have a couple of trustworthy friends, share with them--exclusive dependence on one friend can/will burn that friend out.
The person whose judgment you trust the most is the one who should go to doctor's appointments with you. Bring a notepad--write down questions beforehand, and ask them. Ask your friend to chime in with her own questions. This is one of my hard/fast rules: two sets of ears are better than one. You won't always both hear the same things; you focus on hearing what's most important to you. Your friend may well catch detail that you would miss. When I was in treatment, I found that I remembered only about half of what I heard, and remembered to ask about half of what I wanted to know.
You should also set ground rules. This doesn't have to be a formal thing, but your caregivers should know, for instance, what you want shared with the world at large and what you want kept private, whether you want Mom to move in and take care of you. This is one time when a friend you trust can run interference for you, and anyone who doesn't like it can suck it. And if someone in your life gets too invasive, too proprietary, too possessive, you'll have people to help you establish those boundaries and keep them intact.
Remember to communicate your needs. They may change. Your caregivers may not have turned on their clairvoyance on any particular day. Despite your pride, your ability to do everything you did before your diagnosis has been circumscribed; it's better to recognize that than exhaust yourself trying to prove that cancer won't get the best of you. Exhaustion weakens you and makes both treatment and recovery more difficult.
Also: remember that people are intensely uncomfortable around serious illness and often don't know what to say. They don't know what to ask and what to avoid. They will say dumb things; they may be insensitive. Remember to be patient with them. They love you. You can work through it--just demand honesty from them and yourself. It'll be okay.
For Caregivers:
Be honest, up to a point. Your friend is the same person after diagnosis that he was before. You can confide in him. He's not possessed, he's not going to explode. He's traumatized by diagnosis but that doesn't change his personality. The point you shouldn't cross: when your honesty burdens your friend. His health is more important than your conscience. So if you're tempted to tell him about the fling you had with his wife eight years ago when you were both drunk and they were having trouble...shut up. If the stress of his diagnosis got you hammered and then you decided to drive home from the bar and got arrested: you can talk about the DUI, but shut up about the reason you got drunk.
Listen to the patient. Don't assume you know what she needs. Don't try to take over. Don't overdo the sympathy. It may be your instinct, but it's a bad idea. First of all, you'll burn yourself out and end up resenting your friend because of actions that were yours, not hers. Second, you'll be taking control away from where it properly belongs. The patient is the one who has to do the fighting--swaddling her weakens her and makes her less able to fight the way she needs to fight in order to get well.
Develop your own support system. When you get frustrated and tired of it all, don't turn your frustration on the patient. He doesn't deserve it. Make someone else, someone you trust to keep your confidentiality, your sounding board. The last thing the patient needs is somebody coming around behind your back and saying, "B---- thinks you're ___." It'll destroy your friendship, and make for abiding hard feelings all around.
Be prepared for anger and irrationality. Be prepared for depression. Often chemotherapy so messes with the body chemistry that depression is unavoidable. Encourage the patient to ask for anti-depressants. Encourage responsible pain management. Remind her that neither pain med nor anti-depressants are signifiers of weakness; they're bridges that will get her through treatment. This is even more important when treatment becomes palliative. There is no moral or physical benefit to refusing comfort care. There are times when the patient won't be thinking clearly--she will depend on you to help her think through these decisions.
Run interference especially where toxic people are concerned, be they family, friends, neighbors, whatever. Of particular toxicity are people who blame the patient, as in "what did you do to get cancer?" and those people who believe that illness is evidence of moral fault. It pissed off Job, and it'll piss off the patient. A friendly smile and firm ushering to the door works wonders to get rid of people who thrive on the misfortunes of others. There are times when superficiality is the best way to deal with people. Don't worry about making enemies; these people are by nature jealous and mean--they're not going to like you, anyway.
If the patient has children: offer to do stuff that frees him to spend time with his kids. Don't offer to watch the kids or do anything to take the kids away from home (unless you're specificially asked). In illness, family becomes overwhelmingly precious. It's your job to support that.
When a spouse gets sick, men seem to have it tougher than women because men often lack the informal support systems that women build in daily life. When it's the wife who is sick, the husband often seems to have a lonelier road, more difficulty reaching out for help, a harder time with loneliness and emotional isolation. It's incumbent on the kids not to push Dad out of the way if Mom is sick; even though the kids have the need to spend time and attention on the sick parent, don't let it happen at the expense of the healthy one.
Whether it's a close friend or a family member who is the patient, remember that it's the patient's decisions that matter. It's archetypal to have everyone in a family agree on a course of treatment, except for the one sibling who comes in from out of town, throws a fit, and sends everyone into disarray.
Finally
there comes a point when care becomes palliative. This applies to everyone who gets sick or old, because everyone crosses that final threshold at some point, and few of us go willingly. We resist the idea of hospice because it implies giving up. Children fight the idea that Dad needs hospice because they're not willing to recognize that, for them, the world is about to change (notice this has very little to do with Dad himself, but everything to do with the kids' illusions).
Some caregivers resist hospice care because they think it means they've failed in the job they've undertaken. Nothing can be further from the truth. Hospice brings comfort and respite to the caregiver as much as it does to the patient. Hospice workers, like oncology nurses, are a breed apart, a very special kind of people, rare and wonderful. They're to be treasured, trusted, consulted, depended upon. The best thing we can do in those situations is recognize they can do some things we can't.
One Last Thing
Several people have asked for my recipe for Bread Pudding. This recipe is medicinally therapeutic--when I was horribly sick from chemo (as in, no food for six months sick), this bread pudding brought me back to eating. So here goes:
Old Fashioned Bread Pudding
Ingredients:
1 package (4-serving size) Jello Vanilla Pudding Mix (not instant--you want the kind that you cook)
1/4 cup sugar
3 cups milk
1/4 cup raisins
2 Tbsp. grated lemon rind (optional)
1 Tbsp. butter
1/2 tsp. vanilla
6 slices (or more) cubed bread, dry.
1/4 tsp. cinnamon
1/8 tsp. nutmeg
Combine pudding mix and 2 Tbsp. sugar. Add 2 cups milk, blend well. Add raisins and lemon rind. Cook and stir over medium heat to a full boil.
Remove from heat, stir in butter and vanilla. Set aside.
In a medium bowl, pour remaining 1 cup milk over bread cubes to moisten. Stir into the pudding mix.
Pour the whole mess into a 1 quart baking dish. Combine remaining sugar and spices. Sprinkle over pudding.
Run under the broiler until the sugar/spice mix is browned and bubbly (around 4 minutes)
Serve warm, with heavy cream. Comfort in a bowl.
That is the recipe as I received it. Here are my personal changes:
*I don't add the lemon rind usually, although it provides a nice flavor twist (good for when you're not queasy)
*I also use a half-cup or more raisins.
*The choice of bread is important. My best results have come from dried French bread--it holds up to the pudding better and provides a satisfying substantiality to an otherwise soft food. I usually add more than the measly 6 slices. My great-aunt used to use stale cake in hers, but we never have cake long enough to let it go stale.
Usually I eschew mixes--cake, pudding, or otherwise. This is the one recipe I'll use a mix for. For one thing, when you're nauseous, even the smell of cooking food, makes nausea worse. And this recipe always turns out well.
This particular bread pudding probably saved me from IV nutrition, and after the bone marrow transplant, it was the way I worked my hyper-nauseated system back to accepting food.