I’ve shared with you that right now we are all rallied around my wonderful Dad as he fights mesothelioma. There isn’t anything to sugarcoat. It’s hard. It’s hard on Dad. It’s hard on Mom. It’s hard on all of us that so deeply love and want the best for him. It’s bonded me with other people that have gone, or are going through, similar situations. One of those people is Emily. I’ve shared her story with you before about how at age 32 she was diagnosed with stage 4 metastatic breast cancer. Since she came into my life, she’s been a beacon of light with her open and honest sharing of her journey and her willingness to have real conversations about her experiences.
One of the most frustrating things I’ve experienced is the desperate need to help, but not always knowing exactly how. I’ve felt this before when other friends and acquaintances go through incredibly challenging times. So when Emily offered to write a post sharing the best ways to help someone with cancer from her personal experiences, I jumped on it, not only for her insight but because she is a beautiful writer too (check out her site here!). So with that, take it away, Emily…
You have cancer.
They’re the words that no one wants to hear; earth-shattering words that will turn your life as you know it upside down. Maybe you have heard them yourself, or maybe you have a family or friend, or other loved one in your life who has received a cancer diagnosis. The first instinct is to say, “Let me know what I can do to help.” But often those who have been newly diagnosed don’t really know how to respond – their world has not stopped spinning long enough to make sense of their new reality.
I write this as someone slowly emerging from that awful cocoon, who has begun to understand what exactly I needed, and continue to need, as support on my cancer journey. I was diagnosed with Stage IV breast cancer at age 32 in November of 2017 (yes, you read that right, a mere four months ago), three days after my son’s second birthday, and a week after my fifth wedding anniversary. I was, and am, tremendously fortunate to have a really incredible support system. People from near and far, family, close friends, old acquaintances, and even complete strangers came out of the woodwork to give me, and my family, so much love and support. While this was overwhelming at times, it has been a significant source of strength for both my husband and me. If you are going through something like this, do not be afraid to be open about it to the degree to which you are comfortable. My openness throughout my journey thus far has allowed people to see me as more than my illness. If you are wondering what you can do to support those dealing with cancer in their lives, here are a few suggestions.
Show up. Not necessarily in the physical sense, although that can be great too. But if you are wondering whether you should reach out and say something, you should. Early on, I began asking people to send me greeting cards – I love receiving cards, and really, who doesn’t like getting mail? Sending those cards has been the most wonderful act people have done for us. My son and I open one or two cards most afternoons after we get the mail, and the cards themselves are just fantastic. Funny, irreverent, sweet, beautiful, they mean the world to me. I have them all up on a bulletin board on my wall and reread them regularly. The simple act of sending something so tangible and thoughtful has meant so much. I have had a number of people comment that the greeting card idea has been great for them, because they can perform a physical, tangible action and know that they are helping. It’s so easy to dismiss offers of help because we don’t really know what we need, and don’t want to inconvenience others, so reflexively respond with “really, I’m ok, don’t worry about it.” Asking people to send greeting cards was a way for me to say “We both know I’m not ok, but I don’t know what else I need right now, other than for you to lift me up.” It doesn’t clog my inbox, or put me on the spot to respond, it really just says, “Hi, here is something to brighten whatever sort of day you may be having.” I have people who have made it a point to send a card every couple of weeks, without any further prompting or discussion – they just do it – and truly, that’s an incredible gift.
Nourish them. Many people instinctively want to feed those in time of crisis. We have such a deeply rooted sense of food as nourishment, and it’s such a viable way to show that we care for someone. However, this can be hard from a distance. We received many fruit baskets, which were so welcome, and such a nice break from all of the holiday goodies. I would check before sending food, because those in treatment may have a special diet they are following, food restrictions, or may be struggling to enjoy food at all due to chemotherapy side effects. Food gifts often need more input from the individual, as the person and family in crisis may have specific food needs. Those who have a large local community can set up a meal calendar. There are plenty of mail-a-meal options (and treats!) that can be sent from a distance as well. In addition, many local grocery stores now offer online grocery shopping and delivery. Companies like Freshdirect (who also have great heat-and-eat meal options) and Peapod/Stop and Shop can deliver groceries with a little bit of coordination on behalf of the individual or family. There are some fantastic cancer-specific cookbooks available with wonderful broth and easy, healthier snack options. Chicken broth and date balls are now staples in our household, both recipes from Rebecca Katz’s The Cancer Fighting Kitchen Cookbook. I also strongly recommend Ann Ogden Gaffney’s Cook for Your Life, after purchasing it on recommendation from the hospital nutritionist. In addition, the patient may have sensitivities due to chemo or other treatments. Juicers, subscription for fresh healthy juices, or kombucha are great ways to get easy nutrients and ease dietary issues. Ginger candies or cookies are also very calming on the stomach. If they have a special diet they have to follow, help them find and try recipes that fit their diet parameters, and even go a step further by coming over to their house and cooking the recipes with them to test.
Help them organize. A cancer diagnosis is a full-time job, especially for the first year. There are test results, doctors contact information, insurance to deal with, medical bills to organize and pay, medications to track, auxiliary things like parking, copays, bills and expenses that are tax-deductible, appointments to schedule and confirm, child-care to coordinate for appointments and babysitters to line up and screen as needed for emergencies and bad days. Help them make a filing system to keep things in line. Assisting with research, especially for a second opinion, understanding symptoms, and coordinating appointments/biopsy samples/test results for a second opinion is also very time consuming, and a second person to help with that can be very helpful. Also, helping them start a blog or Caringbridge site (or GoFundMe, if they are in significant financial need from their treatments), and updating those sites regularly takes a tremendous burden off of the individual.
Pack for them. I compiled a special backpack that I use solely for appointments. I spend a significant amount of time travelling to appointments, waiting at the hospital, waiting for blood work, waiting for that second appointment that always happens to piggyback my first appointment that wasn’t on the schedule but the doctor wanted to fit me in and it’s four hours later and I’m HANGRY…. You get the picture. I always keep this bag stocked with some great essentials:
- A spare external iPhone battery
- A notepad to take notes during the appointment and some nice pens
- A binder with all of my test results, contact info, etc. with a folder to keep loose papers and receipts
- A book, magazine, or something to distract me
- Lots of snacks and water
- A jacket or soft, light blanket, because these offices tend to be really cold
- A journal to sit and records thoughts, feelings, or ideas
- A comfortable face mask to wear during flu season
It’s very easy to assemble something like this for a friend or family member. You can also offer to keep them company at appointments or chemotherapy infusion sessions as well, especially to help take notes, or reach out to help with child-care. If they are anticipating a hospital stay, help them gather things for their hospital bag, and check in with them during their stay to see if you can bring them anything from home that would freshen up their room.
Pamper them. A massage is a great way to relieve stress, but make sure that it is safe for them. My husband scheduled me an appointment with one of those sensory-deprivation chambers, which was an incredible experience; if they’re interested in doing that, I definitely encourage it. New soft pajamas, a nice robe, or cuddly blanket is always a treat. Fresh flowers are great, if they do not have allergies. I’ve received a few adult coloring books and colored pencils, which are a great way to de-stress in the evenings. Hypoallergenic or unscented lotions are wonderful, as are a piece of motivational jewelry. Even little things like a bath bomb or a facemask are great ways to show you care. Compiling an Amazon wish list is another great way to let people know things that you may need or that would help you feel better.
Life is still happening. In this midst of all of this, they still have to take care of the rest of their lives. See if you can help walk the dog, clean, schedule them a housecleaner, or help organize and pay bills. Go to Costco or another bulk store and stock them up on household essentials, like toilet paper, paper towels, tissues, hand sanitizer, snacks, pantry staples, and easy dinners. I actually had a friend show up with a giant package of paper towels, toilet paper, pasta, and sauce. It was incredible, because, although she didn’t know it, we were out of toilet paper and were too frazzled to remember to buy more. Come over and play with their kids, or send their kids a new book, toy, magazine subscription, or movie – this was great for me – I now have a small stash of new things I can pull out when I felt really bad and need to rest.
Find them resources. There are a lot of resources available to help pay for treatments, copays, and life issues that come up during cancer treatment. Organizations such as Livestrong and the American Cancer Society have funds available to help pay for wigs, copays, and fertility treatments, to name a few, and also provide some makeover programs to help people feel better during treatment. Helping them find support groups, and arranging for child care during those times, and coordinating transportation to and from appointments can also be tremendously comforting and relieve the burden from the individual.
Don’t forget the rest of the family. In some ways, this diagnosis has been harder on my husband than it has on me. He has felt helpless, and has struggled a lot with being away from my son and me during the day. He has felt isolated. All of the things he generally talks to me about – life stuff – has been hard for him to mention to me because he doesn’t want to burden me with those worries. In addition, my husband was, and is, working full-time, travelling regularly for work, and doing a lot of heavy lifting with regards to caring for my son. For the first two months, he was just burnt out in every possible way. If you know the partner or spouse (or kids) of someone going through a diagnosis, offer to take them out for a beer or coffee, or a round of golf, or something to give them some love. Let them let it out to you, and remind them that they need some care as well. If they have a child, or children, offer to take the kid or kids one afternoon, and take them out for some attention. We were tremendously fortunate to have many friends and family offer childcare so that my husband and I could enjoy a number of date nights over the last few months, which did wonders for our marriage in the midst of everything. We were able to reconnect and relax in a way that let cancer leave our minds for a few blissful hours.
Don’t make them be your grief counselor. What not to do? Please, PLEASE, PLEASE do not tell someone dealing with cancer how hard the diagnosis has been on you. I have had a couple of people who called me shortly following my diagnosis, and just sobbed on the phone to me, telling me how scary this was for them, and how they just wanted to hear my voice. Tell that to your other friends, your family, or someone else. Really. No matter how hard this is on you, it’s much, much harder on the person diagnosed and their family. I found myself in the uncomfortable position of having to comfort friends after my diagnosis, and struggled mightily to bear their grief on top of mine. It was emotionally exhausting to try to reassure the people I cared about that everything would be ok. I had no idea if everything would be ok, and the comfort I tried to give felt both hollow and emotionally devastating to me. I needed people to bear the reality of my diagnosis with me, and not ask me to bear that reality for them.
Remember that not all cancer is the same. For the first two months after my diagnosis, I asked people to avoid telling me stories of other people they knew with cancer. It felt important to me to focus on understanding my situation, and I often felt frustrated when people brought up others’ diagnosis, either as a way to show me a way to “fight” or to try to sympathize with me. Each person’s experience is so tremendously personal, and it’s important not to take away from what they’re going through by comparing it, even unintentionally, to someone else at a different place in their journey. In addition, I heard a lot of “you will beat this!” shortly after finding out that my diagnosis was categorized as terminal. This was difficult for me to hear because it felt dismissive of my actual reality. I think the most valuable thing someone can do for someone with cancer is to listen and truly try to understand what is going on. Further, most people know someone who has dealt with cancer at some stage, and are often willing to connect you to that person if you are interested. However, I felt incredibly awkward receiving a stranger’s contact information, and I began asking people to use this sort of loose script when they proposed a cancer link: “If and when you are interested in speaking to my _____, who has gone through ______, I would be happy to connect you.” If they are interested, send both parties an email introducing each to the other, which significantly minimizes a lot of the awkward “hey…you have cancer? I do too,” sorts of cold calls/texts/emails.
Don’t forget about them. After my diagnosis, I had a deluge of support that was both incredible and overwhelming. However, as is natural, much of that has tapered off. I say this not to complain, but to remind those who wish to help that life will never return to normal because of this diagnosis, even after treatment has ended. The individual and their family will still have needs, and need support, and by checking in regularly, you can more fully understand their needs, and how they are changing. In addition, check in with family members to see what they need– their lives have been forever changed as well, and are grieving and processing things in their own time.
Ultimately, what someone diagnosed with cancer needs is a dynamic and individual issue. A 25-year old single man has very different needs than a 32-year old wife and mother or a 60-year old retiree. In addition, an early-stage breast cancer patient’s needs differ from someone with stage IV pancreatic cancer or leukemia. Understanding the individual’s unique situation plays a key role in your ability to help effectively. The incredible people who have circled the wagons around me have buoyed me through the most difficult times of my life, and I rarely feel isolated and alone because of their love, care, and attention. One of the greatest sources of joy that has come out of my diagnosis is the ability to form and strengthen new and amazing friendships out of the shared cancer “lifestyle” (ha). The single greatest gift you can give someone going through life with cancer is to allow the diagnosis to bring the two of you closer, instead of allowing it to instill distance.
Thank you so much, Emily, for sharing your heart and your wisdom. I know I’m walking away better equipped to help others in difficult situations and I’m so grateful to you for that. <3
How do you like to support friends and family going through difficult times?
Have you, yourself, been on the receiving end of some really incredible support?
What helped you the most?