This is a guide, a set of suggestions that I wish I’d had when I was diagnosed with breast cancer. I think it is broad enough that it will work as well for an injury or other disease recovery process. Some of the things in this guide are common sense. But the problem is, right after that car wreck, or that diagnosis, common sense is in short supply for many patients and their loved ones, because we’ve just gone into survival mode. I’m going to start with the most practical suggestions, and then get into some emotional recovery suggestions. Please don’t let this overwhelm you! You do not need to rush right out to accomplish everything on the list. These are only suggestions. Let your loved ones read it, and let them help you prepare. Adding another source of stress is NOT what this is about. You can look it over, and see what might be helpful for you, or for loved ones to do, as you have time.
First is a list of things you may need, that you may not have thought of.
A Plan B for everything. When I found out I needed surgery, I was so glad I had my 17 year old still living with me. Elijah was the perfect choice for a caregiver: he’s sweet, cheerful, generous of spirit and undaunted by the sort of things that surgery recovery entails. Several days before my surgery, he was long boarding and broke his leg just above the ankle, and just below the knee. After he got out of the ER, he had to be lying down with his leg elevated almost all the time. I was in quite a bit of pain; he was in more pain. We gimped along together through our recoveries. Thank God his step-mom (whom I refer to as his Other Mother because she is just as much a mom as I am to him) took him to all of his appointments. She took me to some of mine too. To quote the title of this rambling essay, I never saw that one coming!Plan for those Lemony Snickets events by having several layers of plans for help when you have a major happening like a surgery!
Make sure someone has a key to your house or your door code in case you forget something on surgery day that you needed, or in case you’re in there longer than anticipated. It is also good for trusted people to have keys during your recovery so that you don’t have to get up and come to the door to let them in every time they come over to help you.
If you are living alone, it can be a good idea to do a “good morning” text every morning so that someone is alerted to check on you if you don’t respond to the text by a certain time. They can try calling first, in case you forgot, then come over if you don’t answer. I know of two older ladies who each live alone, but have apartments that face each other. They have an agreement that they both open their living room curtains by 10 each morning; if one doesn’t, the other calls to check in.
For Your Bedside Table: You will want some things you never needed there before, because you will be spending more time there and have less energy to get up and look for what you need.
A pitcher of water and a water glass. I recommend for the pitcher an (empty) Rain Vodka bottle. It’s beautiful, sleek, doesn’t take up too much room, elegant bottle stopper top—I’m sure someone will be willing to oblige you with an empty one! You may not be in shape, for a while, to get up every time you want a glass of water and you may be waking in the night and drinking water more often, which is the best thing you can do for your body.
A notebook, a journal, sticky notes and a small jar of pens. You may get important calls while you’re in bed, or think of something you need to remember. Journaling can help you track symptoms, which your doctor may need to know, and jotting down visits will help you remember the good in your day. I keep two: one for medical and for complaining in general, and another for positive stuff. I’ll burn the first one at the end of all this!
A holder for your glasses so you know where they are. Memory is tricky at this time. A cleaning cloth for your glasses.
A comfortable chair in the bedroom. A friend of mine wrote me when I was going through some rough chemo and said she would take the 5 hour drive from her hometown “just to sit by you while you sleep”, if that was all I was able to do. Fortunately I was ok much of the time—but I would have let her come anyway, because she wanted to be there. (More on that later!) You may need to visit with people while you are in bed. Make sure they have a comfortable place to be. I visited a friend who couldn’t get out of bed, and I had to drag an uncomfortable, hardback chair through a narrow hallway and squeeze it in her room, every time I visited. You can get a really cheap one if you go to the clearance section of a furniture store—and tell the salesman what it’s for.
A basket of coloring books, fruit snacks, etc for the Littles who visit and may need a snack/entertainment. Maybe make them a fort in the corner of the room, if they are frequent visitors, so they can nap or just be comfortable and feel they have a place. Littles like to help too. Let them fold towels, water the garden, walk the dog (discretion is advised in choosing their helping chore!)
Chap stick and lotion—yes, even you tough guys! Certain meds will really dry out your skin.
Kleenex—the Lotion kind—for crying and for watery eyes/nose due to meds.
A “room service” tray, for meals in bed.
A back rest pillow with arms. (looks like the top of a chair with arms, but it’s firmer than stacking pillows behind your back. I like to sit up straight in bed and crochet, write, draw. If you’re in bed a lot and you use pillows, you’ll eventually get an ache in your back or leg or hip from sitting wrong. The back restpillow is so much healthier for your muscles.
A fly swatter, if it’s any kind of bug season! Even if you use it to swish a spider away, it will be helpful for something.
Additional Medical Supplies (have these on hand before you need them. It seems to me that often symptoms show up for the first time in the middle of the night, and that’s a pain you can avoid.)
Pepcid Complete (could be your first time with acid reflux—don’t let that be in the middle of the night without Pepcid Complete!)
Cough drops with no menthol, just the soothing kind, or hard candies, butterscotch or fruit flavors, in case your mouth is dry.
Sore throat: salt water or baking soda gargle, several times a day.Also popsicles. Snow cones would be great…
If your nose gets really dry (some chemos) humidifier, saline spray for your nose and coconut oil for the inside of your nose (it is a solid, but a solid like a lotion bar, just rub it with your finger and enough will come off to rub around in your nose.) I heard vaseline, but that stuff smells bad.
For dry eyes, or “toxic tears”: use eye drops to dilute the toxins in your tears. You can use cortisone cream around your eyes, but the skin there is thin, so don’t use that often/for a long time. Coconut oil may soothe that as well.Aquafor lotion can provide a water barrier.
For burning diarreah, cortisone cream or Preparation H.
For rashes, cortisone cream or whatever your doctor recommends (the main point here is JUMP ON THAT—get something to treat a tiny bit of rash, so you are not, in the middle of the next night, dealing with burning or itching skin. I used to notice a small physical problem and “wait to see if it gets better”. If you are doing a course of medication, it can get worse first, for a while, so treat the small stuff.
For shingles, a pharmacist said ibuprofen can make it worse. Tylenol
For mouth sensitivity, don’t eat or drink really hot things. I got a Wendy’s baked potato and ate it at the temp I usually do—it burned my gums on one side of my mouth. I did a cool salt water rinse and ate only things at room temperature for a couple days—problem solved.
For after surgery, cold packs.
For chills, or at least having really cold feet that can come with chemo, a heating pad or an electric blanket. I found out that with Taxol, I need to NOT get my feet in hot water. It may feel good in the moment, but it is harmful to the skin. All of my calluses melted off due to the meds, so for a while the skin on my feet was super-sensitive and I had to wear loose sandals. Now it’s pretty much back to normal, even though I am still taking the Taxol. Go figure!
If you’re having trouble drinking water due to taste or due to water being hard to swallow: The most important thing I discovered (during a certain part of chemo that lasted a week or two) was using watermelon when I couldn’t drink water. I have always been a water drinker, so when it hurt my throat to take even small sips, I was really scared. The answer turned out to be watermelon!! I couldn’t drink water, but I could’ve won a watermelon eating contest. Other fruit, such as cantaloupe, milk, cottage cheese, carrots, celery, cucumber… there is a list of 20 foods that are very high in water content, if you want to google them. I just stuck to watermelon. I did my research, so I was not surprised when, four days later, I could have had a colonoscopy. Yes, it cleaned me out like never before, so I slowed down on the watermelon and added some of the other foods. But it didn’t hurt me any and was a big relief for staying hydrated during a very rough time.
Before I couldn’t drink water, it tasted bad. Lemon or lime can help, or even some other flavoring.
A note on steroid treatments: I got dexamethasone for the first few days after infusion when I had dose dense chemo, and I get it in the Taxol infusion weekly now. The side effects say it can make you “irritable”. That is true. I have also had a few episodes of full on “’roid rage”, complete with yelling, snarling and banging on kitchen cabinets. I say this not to excuse it, but to prepare you to deal with it a different way. And to reduce your fears and loved ones’ fears that it is a permanent personality change. It is not. I am most susceptible to anger outbursts if I am feeling powerless in the moment. I try to anticipate that, or at least notice it when it comes up, and take a time out to cuss by myself in my bedroom, punch a pillow if I need to, then go to solution focus and involve others in that. If my son or my brother notice it first, they use humor to disarm “the bomb”. Humor could make some people more angry, so you have to come up with your own way to communicate about it and deal with it. (I did try doing a half dose of steroids one time. My doctor let me. Instead of having “mood swings” I was unable to get out of bed and had to go in that morning for an infusion of fluids… and dex. I appreciate my doctor letting me try though. One of the things about cancer treatments is they affect everyone differently, so you and your doctor will not be able to predict what your unique challenges and strengths will be in the process. Be on the lookout for both. Ask people you trust to share their perspective with you. You may not notice a certain strength, or you may not notice that you become quite short tempered for a few days after infusion. If you do have that problem try to avoid taking on any tasks or conversations that would trigger anger. Have a friend come over to trim your dog’s toenails, be the boss of your kid’s homework, get the fam on track with their chores. Or just leave it alone until “those days” pass.
Clothes:
PJ’s you can entertain in. Whether you need to go to the kitchen and yell at the kids or the dog, or you have unexpected company, trust me, you do not want to have to change clothes or add a robe. Get some really comfy sweats or athleisure wear and relax.
If you’ve had surgery on your upper body, get some loose fitting clothes and a cape or shawl for a coat.
Warm socks. Surgery (at first) and chemo (whole time) make it harder to hold in body heat.
Scarves if you have chemo. My brother got me a bunch of gorgeous silk scarves from E Bay. Cheap, and fabulous! Get a beanie when it gets colder.
KITCHEN
A plastic splatter guard cover for the microwave. You may be reheating casseroles from friends, or eating a lot of soup. That $1 dish cover from, of course, The Dollar Store!, saves splatters in the microwave. Or you can get a fancier magnetic one to leave in there for $14; it sticks to the top of the inside of your microwave, so you don’t lose it. My son’s dog just ate my dollar store cover. I may have to spring for a fancy one!
A big soup cup with a handle; easy to eat soup or cereal or the occasional ice cream in bed! I got mine at TJ Max. It is aqua blue with tigers all over it. Something that makes you happy to look at is a bonus.
Tupperware, if you don’t have it, so friends can prepare stuff for you in advance, so you don’t have to cook for yourself during the day. There were days when I didn’t feel up to even making a sandwich.
Stock your pantry! With some treatments, hunger becomes an immediate, desperate need. Get granola bars, cereal, soup, jello, pudding, really think about anything that’s easy and comfort food. Get a lot of it. Also have saltine crackers. I lived on those for several days once.
I am something of an oddball (one of my super powers!). I just came up with an “odd” idea I wish I’d had at the outset of my own adventure in recovery: A “Healing Shower”. Maybe there would be a better name for it. But it would be a party to “bon voyage” me into a voyage I didn’t want to take. There are no rules for this: I would say “bring yourself as the present” but whoever wanted to could bring something from the list: a chap stick, a humidifier, a good pen. They could also bring a card or letter that shares what they appreciate about me, and their pledge of support (Please don’t pledge your wishful thinking. Pledge only what you can realistically commit to.) For me, that would be better than flowers. This may be more for your loved ones than for you. They may need to do something useful, give something helpful. They may feel a need to express their feelings, but not be sure if it is appropriate or how you would receive it.
Please also consider getting yourself a gift. I got myself a camera. A friend of mine, upon hearing her diagnosis, bought herself a camper. She then drove by herself from Colorado to Arizona to pick it up and bring it home. She camped out in Death Valley in 104 degree heat. She is a warrior! I would never do that, even if I were 100% healthy. Do a trip if you can, or at least a great dinner and movie night out before you settle in for surgery, etc.
A Routine
I set an alarm for 7 am. I get up, have coffee, move to the couch for awhile. I do that even if I didn’t sleep well last night and I’m exhausted—because I would rather be up and exhausted at 7 am than awake at 2 am because I slept through the day. I have never done well when my days and nights are mixed up as far as my sleep cycle. Now, you may go through a phase where you just have to sleep whenever you can, and it is not good for you to follow any sort of schedule. Then go with that. But if you can do even a soft schedule, you may find that it is helpful for getting more sleep at night. During the day, I move around periodically: I may water a plant, check the mail, write a letter. Then I rest, and get up again, as I can. I’m writing this part on “Nadir Day” (Sunday/Monday are my low energy days of the chemo cycle). But if I can do something creative or useful, I do it, because it helps my mood, my energy level and overall well–being. Having a ritual, maybe tea at two while you call a friend, can help you feel more of a sense of balance, rather than the free fall of no schedule at all. It also gives you things to look forward to.
Especially if you’re a Type A, listen to the Dr. Hook song “Let the Loose End Drag” and then figure out where you need to relax your standards. Have a sense of humor about that. Give yourself the grace you’d give others. Stressing over not keeping the house as clean, keeping up with whatever you usually keep up with is not going to help with the recovery process. Be kind to yourself.
New Hobbies
If you’re spending a lot of time in bed, or on the couch, you’ll need something to do besides watch TV (I hope you will, anyway). I crochet. A lot. I make hot pads and dish clothes—and people LOVE them! People also love painted rocks. You can join a site on Face Book where membershide them around town, then people find them and post pictures of them. Your rock art can be on Face Book! Or you can give them to friends. Adult coloring books can be fun, and they are EMDR resourcing (bilateral stimulation that causes relaxation—they couldn’t be a billion dollar industry without some therapeutic results!) Have someone bring you a calligraphy kit, or a bird house making kit from Barnes and Noble. This is just a starter list. Google all the crafting kit possibilities to find something you think you’d like to try. Speaking of Face Book, make that a positive experience. Follow comic sites like Nathan Pyle’s Strange World, Calvin and Hobbes, Snoopy, Sweatpants and Coffee (Nanea is a cancer survivor, and her posts are pure inspiration with a little humor.) There are so many nature sites and “good news” sites. There are many inspirational speakers: Eckhart Tolle, Byron Katie, Rachel Remen, Brene Brown, Russell Brand’s recovery videos. Follow your favorite poet, or adventurer. I follow Reed Timmer who is an extreme weather chaser. What a rush to be up close to a tornado!! …on my phone screen. Dry Bar Comedy.com is a great source of clean comedy on lots of subjects.
Inspirations:
Make sure that what you see in the morning when you open your eyes inspires you. I have a little glass blue bird sitting on my window sill, and the light shines through him every morning. I also have a framed piece of birch bark letter from my mom. Part of it talks about “ticks have been bad this year” (1984) but it ends with “You will be fine! Love, Mom” and that always reassures me. Photos, a plant—whatever inspires you when you open your eyes.
Feng Shui and Hygge your house! Both of these are simple and beautiful, but also practical ways to make your house more conducive to healing.
Feng Shui is the Chinese art of placement: it’s all about the flow of energy.
On a practical level, this means that after I had major surgery on my left breast and arm pit, I WISHED I’d moved my bedside table to the right side of my bed, so I could reach everything on it easily, and so I could just roll out of bed on the right side. I had everything arranged on the left side of the bed—and it was almost impossible for me to get up, until I adjusted everything to the other side of the bed.
In the spirit of energy flow, do a “tolerations list”. That’s advice from a life coach, who years ago told me to make a list of all the things I tolerated; things that were inconvenient to get to, like that broken toilet paper holder that sometimes causes the roll to wind up on the floor. You do not want that now! Walk through your house with a close friend, and just notice, both of you, what “works” and what doesn’t. Clear a little clutter, find a more convenient place for things you think you’ll use more now.
Make a list of all the things you tolerate from other people too, and set some boundaries around that. If you have a friend who always complains to you about her problems, that may be too heavy to carry for now. You may not want to say that directly, but you can let her know that conversations are going to have to be shorter due to your having less energy—then cut it short when she starts to complain
Hygge is the Danish art of “cozy” and it’s an inexpensive way to create a really cozy, welcoming environment. You can google images of both fengshui and hygge for inspirations. A lot of it is just rearranging what you have, so don’t think it will be expensive.
Have someone put a bird feeder outside your bedroom or living room window; watching birds is a lovely pastime.
Insomnia Routine/ Anytime Stress Reduction:
Sleep can be harder, due to pain or anxiety, so you’ll want to have a regular routine. In the evening, while you’re reading something uplifting, or watching funny cat or baby goat videos, drink Camomile tea, or warm milk with almond flavoring, or hot chocolate. Massage your feet with lavender or rose (or whatever your fave aromatherapy scent is) lotion. Foot massage relaxes the whole body.
A friend of mine (an adult; she’s 60) bought herself a light up turtle stuffed animal. The brand is Cloud B. When she is having trouble sleeping, she puts it on “wave” and watches patterns of light float across her ceiling, while she listens to soothing nature sounds and music on Pandora. Pandora has a free site and a more advanced one you pay for.
If problems are on your mind, write them down with possible solutions, then “contain” them. Visualize a safe, a file, a “God Box” (give it to God for the night) or imagine putting your problems in the bottom of a lotus pond; the beautiful flower feeds off the muck at the bottom of the pond (it’s all useful eventually). If the stressful thought comes up again, re-contain, and think of an image of a peaceful place. It might be your favorite camping spot, or at this point, that might make you sad because you can’t go camping for now, so it needs to be a fantasy vacation to Alaska. You can also add bilateral stimulation. I do “cat’s paws” with my toes—cats curl the toes of one foot, then the other when they’re happy. It works for humans, too– it’s a soothing thing that balances the brain. You can look up Eye Movement Desensitization Reprocessing (EMDR) resourcing; it’s as simple as drumming and dancing, or “cat’s paws”. Coloring a rainbow works, too. Imagine “the storm passing” or something else positive while you color the rainbow. An infinity sign, anything, really that’s left, right, left, right works too.
Ambient sound: a fan, a water feature, humidifier, sound machine for nature sounds, or the Calm app (has meditations as well as music) or Pandora for music. If you’ve always been a sound sleeper, you may find that symptoms can wake you up, then hearing noise from traffic outside, or others living with you is more of a problem than it used to be. Ambient sound is a big help for blocking all that out.
If one of your loved ones is good with routine, it may be good to end the day with a 10 minute conversation with someone who makes you feel peaceful. I talk to my brother every night. He says things like “There’s a rabbit!” (He’s lived on the ranch for 56 years—and he is still delighted every time he sees a rabbit or a deer or a magpie. I love that.) Someone who tends to be peaceful and relaxed is a great influence during a stressful time; end and begin your day with one of them whenever you can.
Your Team:
Everyone who loves you is going to ask “What can I do??” Here’s the answer! Cut this part out, copy it, hand it to everyone. People can feel into what role they will play best. That big, burly dude who looks completely fearless may go weak in the knees as he starts to approach the hospital. Let him instead send you a text picture of your mowed lawn, the new bird feeder he built and hung up outside your bedroom window, or that quiche he cooked for your homecoming. One person may be good with the gamut of emotions, from crying to cussing; another may be better with practical financial details. Let them do what they do best.A friend of mine just pointed out that with Corona virus, you may not be able to have people in your house to help with household things. I would love to hear people’s ideas for how to help out when we have to social distance or completely isolate.
Venting Buddy. This person knows that sometimes you need to gripe, maybe swear, scream and throw (hopefully non-breakable) things. They are just going to listen, and affirm that you have every right to feel the way you feel. They are not going to try to cheer you up, or suggest solutions (unless you get to a point where you ASK for those things.)
Analyist/ Solution Finder. Don’t try to solve problems on your own (for very long anyway). You need an objective perspective at a time like this. Talk with your most analytical, practical friend for ideas on how to solve new problems.
Errand Runner. The person who is out and about a lot, and doesn’t mind picking up stuff for you at the grocery store or pharmacy. Or, this may be a teenager who will run errands for a Pepsi and gas money.
Dog or cat poop scooper. You may not have the energy, or be able to tolerate the smell, but someone will. Or several someones can rotate!
Plant waterer, gold fish feeder, etc.
Noticer. This person is probably a Virgo—with a sweeping glance, he or she can tell that the dog’s water dish is low, you’re close to running out of toilet paper, toothpaste, etc.
Organizer/Tidier (probably another Virgo!) This includes someone taking the trash to the curb every Tuesday (if you live in my neighborhood, anyway, trash day is Tuesday), picking up the mail, turning on the swamp cooler, scheduling the lawn sprinkler to be winterized—all those weekly or seasonal things you might forget.The Organizer is a great person to organize the efforts of the whole team, too, so you don’t get 12 quiches on Tuesday.
Bill tracker. Hospitals send SO MANY bills. Get on an auto pay of whatever you can afford a month, and then have someone else on your team who is finance-minded and shock proof look at the bills. This is NOT a time for you to add stress to your life by worrying about bills. Pay what you can, and let it be. None of us are walking in there writing a check for the full amount for every single thing. If a scheduler calls you and says the bill for a scan or something the next day is $700 (that happened to me), tell her that you are arranging to make payments. It really scared me; I thought I would have to pay the full amount (which I didn’t have) but that was not true.
2 am Call Accepter. Not everyone can do this, but I can. I can take a 2 am call, and fall right back asleep. That skill is needed for the person who can do those middle of the night chats. If you do it too often, that person needs to be able to tell you “too much” and then maybe a 24 hour help line will work better. Research it, if you are one who needs lots of support in the middle of the night.
Laundry/Dishes helper
Cook
Space Holder. This person can sit in that comfy chair in your room and entertain himself/herself. This person can just be there when you need companionship, but you’re too tired to talk. This person does not need to be entertained (hopefully all of your people are like that in this circumstance) and is happy to just be there.
Shoulder to (ugly) cry on. When you need to really sob and wail and howl, this person can be there to rub your back, hold you, or just be nearby, and not be ruffled. Side note: handkerchiefs for everyone. Especially you, but everyone. No one feels comfortable really crying hard into a Kleenex—they fall apart too easily.
Toenail trimmer. When I’d had surgery, I couldn’t reach. With Covid going on, a lot of people who relied on a pedi at the mall for that can’t get one. Some people just aren’t that bendy. It’s embarrassing to ask, but long toe nails are the pits!
Sensitive Needs Care Provider. If you’re out of it from surgery or whatever, and you throw up or wet the bed, you gotta tell someone. It is not that big a deal. Would you change sheets for someone you love? Well, then. My sensitive need was for a drain emptier. I had a tube that drained bloody fluid from my surgery site for the first several days. If I’d been healthy, I could have done that for myself. But for the first several days, I was too woozy, too …not ok… emotionally and physically. My older son squeezed the fluid from the attached bulb, measured and recorded it. Bless his little heart!
Of course, everyone can do some of this; let the Organizer help people figure out a schedule of who does what, when.One more thing about relying on others more than you ever have, and not being able to reciprocate for now: You have given richly in the past; now it’s your turn to receive. Making sure that you only receive in each moment as richly as you are able to give in that moment turns your relationships into a business arrangement, NOT a loving relationship. My mother used to say “Marriage is NOT 50/50. It’s 100/100. You need to be prepared to give or receive 100% sometimes. Anything else is keeping score, and that’s not love.” She was right, but it applies to ALL relationships.
Conversations can be awkward, so let people know what you want to talk about. Here’s a partial list. Circle what’s ok. Write a more complete list.
It’s ok to ask about my symptoms/ I don’t want to talk about “how I’m doing” right now. I want to hear about current events/ I don’t give a rat’s furry butt about current events right now. I want to hear jokes/ nothing is funny right now. Talk about ordinary things/ I’m too distracted to hear about day to day things right now. It’s ok if you cry/ Please don’t cry; it upsets me. Say reassuring things/ don’t tell me “it’ll be ok!” Things are FAR from ok right now and may get worse before they get better so “it’ll be ok” feels painful. Don’t tell me I can “kick cancer’s butt” because you don’t know that.Don’t say “Oh, you’re so strong!! I was given no choice. Trust me, if I could run from this, I would.
Be able to tell people “I need a nap now” even if they just got there 10 minutes ago. They can color some pages, do a load of laundry for you, or come back later.
OK… that’s all the practical stuff.
The emotional stuff:
You will lose some roles for a while. That does not make you less valuable. When I was told I would not be able to work from home, I teared up and said “Well, I just thought there would be a way I could still be useful!” My boss assured me that I was still useful. And I am. Here are the most “useful” and meaningful things I have ever done in my life, and that I have more time and awareness to do now:
Listen, deeply and attentively; appreciate; encourage; affirm others. Love others, delight in their presence. I can be funny, sometimes. I can share a sense of wonder, curiosity, creativity. I am also more humble than I was before, and that has deepened my life. I don’t work, for now, partly because of treatment, partly because of Covid. I don’t cook, don’t do laundry or dishes. I have lost some external roles, but the ones that count most, my relationships to others, are fuller than ever. I am being given an opportunity to be an Elder (even though, at 57, I have many years to go before I retire, and I love my work). Elders are valuable because they are there. I hope you have some elders in your life and that you appreciate them fully, for their being. For now, you have joined their ranks. Enjoy this little interval of what is to come, and appreciate what you bring to the table, in who you are, rather than what you can do.
I want to add here that I am not always cheerful and uplifting. Sometimes I am grouchy, out of it, glum, unhappy. I don’t think it serves me or anyone else for me to be fake about the experience. Those close to me are learning ways to get through stuff like this, are delving deeper into their understanding of suffering and the unpredictability of life. It’s not all pretty, but some of the roughest parts are the most valuable.
There can be many losses. The fact that many of them are temporary is not very comforting. People who cheerfully say “Don’t worry! You’ll get it back!” are usually not helping. Grieve all the losses. Be sad, be angry, feel all your feelings. Vent to your venting buddy. For some, chemo hair loss may be a very big thing. Don’t criticize yourself. Letting it be as big as it is for you is the first step to working through it—eventually. Be patient with that. Grieve loss of social experiences like going out to dinner or to a good coffee shop or a movie or the mall. Grieve physical changes in your body, including your energy level or grip strength.
Then, make friends with your body as is. At first, it was very hard for me to look at my surgery incision site. It was hard for me to start massaging the numb parts of my arm. But I worked at it. Likewise making friends with my port. At first it was hard to even run my hand over the port to apply lotion—but the body needs love and acceptance. Our healthy emotional self needs to love and accept the body. Vent about all the things you don’t like; all your worries about it being “ugly” or unnatural, then work toward acceptance. And remember things change. That big gouge out of my breast has filled in. It now has a dent, like it got hit really hard with a frisbee. It has character, and I am learning to love it. A friend of mine has decided that if she has to get a mastectomy, she will not get reconstructive surgery, but will get a tattoo over her chest. There are many possibilities for reimagining harmony with your body.
I also “made friends” with chemo. I look at it as an ally. I may have some pretty serious symptoms that are hard to deal with, but when I go in for my infusion, I visualize the Taxol molecules just melting away all cancer cells. I welcome the infusion as a healing process.
As I’ve said before, I also complain a lot to my friend who is also taking Taxol! There’s a saying that “for any great truth, the opposite is also true”. In this case, I view Taxol as a lifesaving healing infusion—and it also brings some side effects that range from mildly annoying to painful and upsetting. I let myself feel and talk about all of it.
If you’ve had a head injury, you may have a harder time processing information and you may be more sensitive to emotional tone. You will need to set boundaries with other people.Share this with everyone in your personal life as soon as possible, or send out a mass text or email to set firmer boundaries around conversations. For example,a friend of mine has let everyone know that if they are talking too fast, or become argumentative, orstart using an angry or upset tone in their voice, she will cue them by saying “Peace”. If they do not respond to that immediately, she will walk away or hang up the phone, because it is exhausting for her to have those experiences. She has learned to end conversations before they tire her, whether it’s because they are going on longer than she has the stamina for, or they are too taxing due to rate of speed or emotional tone. Don’t let anyone drain your energy! That will set back your healing from head injury and any other injuries as well. All of us who are in a healing process are feeling more vulnerable physically and emotionally. Really tune in to your own emotions, and your energy level, and set new boundaries that keep you feeling safe and healthy.
Anxiety, panic, perseveration: Pain can light up your bodywith anxiety. Pain tells your brain “Something’s wrong!” and can lead you to worry about all the things that could go wrong. Or, on a long convalescence or treatment regime that keeps you out of work and away from the other things that usually take up your time, you could start to think about old regrets, grievances, etc. On one hand, this is a great opportunity to clean house on a very deep level! You can let that stuff come up and “feel it to heal it”: journal, make a pinata and smash it, vent to a friend or a therapist, do The Work with Byron Katie online or with a facilitator of The Work by phone. Be very mindful of the tipping point between healing process, and energy drain. You sitting by yourself perseverating on the past and feeling guilty/angry/scared is going to rob you of any quality of life and interfere with your healing. If your mind becomes a dangerous neighborhood, don’t go in there alone! Share with a friend. Ask your medical social worker for a referral for a therapist. Look up some inspiring sites online.
I suggest that when you notice you are in the grip of worry, regret, resentment, you interrupt it with a simple statement: “Not Helpful.” Because, whether you are right or wrong about your fears for what lies ahead; whether you “should” or “shouldn’t” feel resentful or regretful—NONE of it is helpful. We could argue all day about right or wrong; perseverating is never good. Switch to a helpful thought or activity: call a friend, color a page, take a nap, do a load of laundry, read an article on neuroscience (actually switching from “emotion” to “thinking” is a big part of getting anxiety under control). Don’t look too far down the road. I took surgery, then dose dense chemo, now Taxol, one thing at a time. I am three weeks from done, so I am just now beginning to think about radiation. A friend of mine who ran a half marathon said she did it in 2 mile increments… I’m thinking I would have to do a marathon one telephone pole at a time! But break it up, and have little celebrations at each milestone. I celebrate on Tuesdays getting past my nadir on Sunday/Monday by congratulating myself and having a special meal and going for a walk with my friend who also is on the chemo journey.
Too Much of a Good Thing Is… Too Much
New Circumstances, New Boundaries
All of your best qualities: patience, generosity, independence, helpfulness, even humor sometimes, will need a makeover into alignment with the degree of energy you have. We love our identity as a patient person, a generous person—but during a health crisis, thatwill eventually lead to exhaustion (which is going to slow your healing and can lead to depression or anger outbursts, since what is RE-pressed will become DE-pressed, at least until it EX-plodes!) The benefits to your loved ones of your setting new boundaries are: you’re being honest, so you have a more authentic relationship; you’re teaching THEM to be honest and take good care of themselves if they find themselves in similar situations, and even now. Some of them probably need to set better boundaries anyway. Be that inspiration! Also, you’re saving yourself and them from blow ups when you suddenly reach and exceed that maximum level of patience, energy, tolerance.
I consider myself a generous person. For those I love, “what’s mine is yours” has been my motto. But now, things that were an inconvenience, like my 17 year old “borrowing” my phone charger cord or my water bottle, are serious issues. Both of those are lifelines for me now. I NEED to be able to reach people by phone—and I can’t use my land line at work, because I’m not working. I NEED to stay hydrated, and I can’t just pop in to the convenience mart and buy an Aquafina (compromised immune system). So he knows now that he must get his own, or do without. I’m going to pay for the first phone cord, but after that, he’s on his own.
Other things on my new list of decreased toleration: Noise after bedtime from the stereo, tv or human voices. I NEED my sleep. The dog bounding in and playing on my bed. Depends on how I feel, what I’ve got going on. Bad smells in the kitchen. My sense of smell is more sensitive—no more “leave it til morning” with your garlic infused butter sauce!
Make a list of the things you’ve been good at tolerating and then set new boundaries. I’ve listed a few of mine, and I’ll share more: waking me up when I’m sleeping—even at 3 in the afternoon (unless there is a BIG emergency, that only I can resolve), borrowing anything I need, asking me to do stuff you can do for yourself, interrupting my phone calls or visits.
If any of your loved ones are becoming angry or distant, or if you are, that is a typical response that you can work through with yourself or with them. Children are often angry when someone they love gets sick or is injured, because they’re scared, it feels unfair, it’s just overall very confusing, unpredictable and upsetting. The answer is venting to someone who is non-judgmental, will let you get it all out (time and again! Week after week—this is not a quick, easy, one-time process.) The anger will go away, and then resurface about something else. Notice, allow, vent, and only then, go into problem solving mode. Acknowledging anger or wanting to “run away” is the only way through it. For kids (and adults) a physical outlet for anger can be good: angry drumming, angry dancing, drawing angry pictures, cussing and yelling (yes, even if they’re little, cussing and yelling in a safe place is a good outlet. Don’t demand more from the Littles than you do from yourself or your adult loved ones.) A great idea from another mother: a grief and anger pinata! She hung up a pinata and let her kid “beat the stuffins” out of it! The candy inside is symbolic that eventually you can find some goodness in anything. Then, after the “storm”, a nice Epsom salts bath by candlelight, with soft music and a cup of tea or cocoa and a nap. It just occurred to me that a pinata, or multiple pinatas, could be a great activity for a “healing shower”.
If you are having a crisis of faith:
Talk to someone about it. Don’t keep it in. Find someone from your church, if you go to one, or someone who is soulful in your friend group, and just say it all. Don’t try to jump to solutions; allow yourself to fully feel all your feelings, for as long as you need to. God, or The Great Spirit, or The Great Pumpkin can wait for you to work through your anger, sense of betrayal, hurt, fear—for as long as it takes to work through those things. It calls for some venting, and honesty, not “being nice”. Be real, feel it all, and you will eventually find your way to peace—with your religion, or with some other support.
There is another subject that can be emotionally difficult at a time like this: the fear of death, or at least of it being a painful process, or how others will be impacted if you were to die. This calls for another role in your team: Planner ForAll Circumstances: That’s the person with whom you share every concern you have, and plan for all the details. I talked with my closest friends and my sons about “what if I die” – in surgery, from the disease, in a car wreck on the way home from surgery. A diagnosis can light up every fear you have. My people know what I want for end of life care (no heroic measures; FULL comfort!) and for after (no funeral! I will not be the reason anyone had to dress up on the weekend. Go fly fishing, stay in bed and read the comics, or if you must gather, get a bucket of chicken and go to the park and tell stories.) Now, a big, flashy New Orleans-style funeral is great too. It is a very individual choice, for the person and all their loved ones.
I wrote my eulogy (it’s hilarious!). I have preparations for everything. If I am in a situation where I am “actively dying”, I want my kids nearby (they are adults now), but playing cards and talking among themselves. I want to drift off to the sound of their voices, maybe some quiet classical music in the background. I want my Space Holder sitting in the chair by my bed, maybe holding my hand, but just there, holding space, in case I get uncomfortable and need anything. I do NOT want someone leaning over me, crying, saying “Go to the Light!!” I KNOW where I’m going! If you have younger kids, you will want to think of all your concerns for them, and have someone help you plan for getting their needs met: who will be with them during and after a health crisis or in case of death. Who will explain, and how to be there for them.
If you don’t have these decisions made, consider a consult with a death doula (a professional who helps you prepare legally, financially, in every way, for the inevitable, which could be soon, or in 30 or 60 years. If it’s in 30 or 60 years, you’ll be SO GLAD you dealt with all of this now, so you don’t have to think about it again in the years to come. Alua Arthur is a death doula who does a minute blog spot on Face Book called Going With Grace. She also has a video of what a meeting with her clients looks like. She and other death doulas have dealt with so many different circumstances, they will have the best advice and fullest understanding of all the needs you and your loved ones could have no matter what happens.Looking at and discussing with someone who is there to support you through any fears you have winds up being very positive and freeing. A big relief to get it done, so you don’t have to think about it anymore.
Being a Gracious Receiver:
Think about times in the past you have supported others through a tough time. It was a joy, right? You may have felt helpless—but at least you could ease your loved one’s pain by cooking a meal/doing some laundry/just sitting with them. Well, your loved ones want to be there for you! Be a gracious receiver. Be happy to see them, happy for the help. Don’t say “you shouldn’t have”; that doesn’t uplift anyone. Be humble enough to be the one who needs to be taken care of, rather than “the strong one”. (There’s some narcissism in always having to be the strong one; it’s not flexible enough to allow you to be “the nurtured one” when you need it.) Talk about the feelings that come up. Grieve the temporary loss of roles, loss of identity (“the strong one/independent one” is not bad, unless it’s entirely inflexible. Take time to work through that.)
The “I Never Thought Of That!” in the title was motivated by my own experience of having two people whom I thought of as close friends, ghost me right after my diagnosis. These people had been reliable friends of mine for many years—then right after I told them my diagnosis, both of them just disappeared. That was four and a half months ago. (I am still doing chemo as I write this.) One of them did actually say she would bring food- but then on the day she was going to stop by, she made an excuse for why she couldn’t. Several days later, I text her and said “you know, I would just love for you to stop by. I’d love to just talk with you.” She made another excuse, and that’s the last I heard. I was shocked. I still don’t understand. I guess some people can’t handle a cancer diagnosis? Whatever the case may be, I am very grateful for the people who are in my life, who have leaned in, even closer, and are unwavering in their love and support. I hope you don’t experience “ghosting”. But if there is one person, or several, who do that, I want you to know you are not alone; it’s not your fault—and you should grieve the loss, feel all your hurt and anger and other emotions that come up as a result of this. Talk about it, vent about it, with a confidante who won’t gossip. And then turn your full attention to those who are there for you.In smaller ways, you may be surprised who is there for you in a much bigger way than you ever expected, and by the person you thought would be one of your biggest supporters not being nearly as involved as you thought he or she would. A big event like this can change relationships. You’ll wind up much closer to some, maybe not as close to others. If this happens to you, I don’t want you to feel like you’re the only one it happens to. People are complicated and sometimes you can’t know why they react the way they do.
My choice, by the way, is to not have the “ghosters” back in my life. One of them did resurface last week (after not speaking to me for the last 4 months) with a cheery “how ya doing??” text. I subtly let her know I was not interested in getting together. I am sure she understood why. You may choose to resume the friendship after you’re well, but don’t feel like you have to. To me, that level of betrayal and abandonment is not recoverable.
Anecdotal story (that some people might not have the patience to read so I put it at the end). But it may be helpful to you to apply it as you make plans and decisions. Here it is: Two parents were worried about their twin sons. One was a total pessimist: he was always sad because he saw the worst outcome for everything. They were also worried about their little Eternal Optimist, because he was SO positive he could be very unrealistic sometimes. They consulted a psychiatrist who told them that they could solve it all on Christmas: “Get your little Eeyore everything a child could possibly want for Christmas and he’ll learn that sometimes things turn out way better than our wildest dreams! And for your little Optimist: a great big pile of horse poop! He’ll learn that sometimes even the best things can turn into a disaster.” Christmas morning comes and the parents awaken to the little Pessimist crying. When they ask why, he wails that this item will be outdated in a year; that one will break; this one needs batteries he probably won’t be able to find… Defeated, they turn their attention to the Optimist, who is grinning, singing—and shoveling— with great enthusiasm. They said “Santa got you a pile of horse poop! WHY are you happy??” He replied “I know! LOOK at all of it! There has GOT to be a pony in here somewhere!”
Now, my tribe tend to be Optimists. If one asks the other how a particularly rough patch is going, the answer may be a rueful grin and “Still shoveling!” That can be a good way to be, but the drawback is over-estimating things like healing time. After my surgery on Friday, I told my boss I’d be back on Monday. She wisely took me out of the schedule for a week, which was exactly the time I wound up needing. My brother had a major surgery on his liver and planned to be out of the hospital in two days; he was there a week. This is another one of those Plan B things: make sure you ask your medical team for an approximate range of time for getting out of the hospital/going back to work/being able to walk the dog, clean the cat box, make a meal, etc—and then plan with your team accordingly. If you tend to be on the Pessimist end of the scale, plan with your more optimistic friends to have them help you push it a little. The doctor says you can get up and walk down the hall, but you doubt it? Get a friend to encourage you to try. It is important to vent about your fears, frustrations and upsets. It is equally important to then go into solution focus mode, remember to notice the good in the day, and find a way to laugh sometimes.
To end on a positive note, although I would not “choose” to have this disease, and these treatments, there have been many wonderful moments of closeness with loved ones, and my life has been deepened and made more full by all of this. I have a clearer appreciation for “the little things”, which turned out to be the big things. I have had some very rough times, and some beautiful ones. A friend of mine sent me a book in which she inscribed “I hope this finds you learning.” I love that, because learning about myself and my body and Life has been a constant, even when I don’t have a clue what it is I am learning at the time. When things are unfamiliar, strange, or scary, when it’s something new, it is always a learning experience. I am one of those people who are always trying to “find the deeper meaning”, but I have learned to relax into each experience, to just be, and not to try to force meaning too soon. Some of it I am sure will be much clearer when I am done with treatment; some of the learning and benefit may not be apparent until years down the road. I see that my sons and other loved ones are learning from this too, finding meaning and value in the experiencing of this unpredicted, unpredictable process. I hope this finds you learning, and I hope (to quote my friend again) that you take the good in the day. (She says “We get the bad; let’s choose to also look for and take the good!”)
This is by no means a comprehensive guide. I haven’t even gotten to the radiation part of my healing journey yet (I did order some special cream and I have cold packs from surgery, so I am as prepared at this point as I know how to be—but I am sure I will learn as I go.)
If there is any discomfort or problem you have that is not addressed here, have someone close to you Google it. DO ask your doctor before you do something like put cortisone cream next to your eyes. Do not expect your doctor to know all of the solutions to symptoms; they prescribe too many different meds with too many different symptoms to know the answers to them all. If your doctor doesn’t give you ideas for how to deal with a specific symptom, don’t assume there aren’t answers; he or she may not know about that one. Just know that lots of people have had these problems, and there ARE answers out there (to ease, not magically cure) symptoms. I am going to try to figure out a website to put this on so that we can all share tips and inspirations. My hope is that something in this guide makes you feel a little less lonely, a little more empowered, a little more peaceful. And I hope this finds you learning. (Heart emoji here, if I were more computer literate )
If you want to post something here that was helpful to you, please put the condition first, then the suggestion, so that people can go right to it. For example:
RA: Humira caused a lot of fatigue; my doctor let me try an older drug (one that is experimental for treating Corona virus, and much cheaper. So far, it is controlling swelling and pain, without the side effect of fatigue.)
Shingles: pharmacist said ibuprofen makes it worse; Tylenol helps.