Previously posted in the Sacramento Valley Psychological Association newsletter & on sacwellness.com
First and foremost, finding out that you have cancer is a very shocking and life-altering event, which includes various stages of grief and emotions over the duration of the experience. As a helper, it is important to keep in mind some of the things a cancer patient might be thinking or experiencing through the journey. Here I go through some reflections from a personal vantage point.
1. It’s Too Late to Prevent/Predict
There are many messages in society that create a “morality story” around cancer. It is easy for a cancer patient to wonder what they have done wrong to have this happen.
ADVICE: Try to avoid asking how this happened. This could suggest that there was some way it could have been prevented, and promote feelings of shame. It’s too late for prevention.
Sometimes you might want to help with future prevention. Regardless of the likely good intentions, trust that the person is likely already thinking of this, and may not need that sort of support.
2. Be Wary of Giving Advice
ADVICE: Be cautious of advice giving. The cancer patient will likely have a full team of medical professionals to help them. I had my oncologist, nurses, a nurse navigator, and access to free counseling and nutrition. Many people want to be helpful and send information about nutrition and ways to cure or prevent cancer recurrence, or help with symptoms. This is not bad. Just make sure it is welcome. Ask first. Also, certain suggestions may not actually be recommended during whatever treatment a person is getting. During chemotherapy, for example, many supplements just simply aren’t going to work or could reduce the impact of the medication. Food (not supplements) is the ideal source of nutrients, and sometimes what one can take is just going to be related to how they feel.
3. Especially Advice about what’s “Right” and “Wrong”
ADVICE: Try to stay away from suggestions of “right” and “wrong” ways to go about treatment. I watched a doctor shame a patient who was eating McDonald’s in the infusion room by asking her, “so, how’s the healthy eating going?” She responded that she “just wanted that that day” and usually eats healthy. I had initially passed judgments myself, but quickly realized that I do not actually know anything about her eating habits, and I would not want to be held to the highest possible standard during the most difficult time in my life either. Yes, you may know of recommendations and helpful things, but not everyone is the same, and you just want to be mindful about the message you send. It isn’t always empowering to hear about the right and wrong way to do something, especially from someone who hasn’t gone through it.
Another example: you’ve congratulated one cancer patient for doing something “good” during their treatment. How does this make other cancer patients feel if they didn’t do that “good” thing? How does the person feel who did it? What if they hadn’t? Would they have been as supported?
4. Don’t Make Comparisons—It’s All Relative
ADVICE: Try not to compare the person’s cancer to other people’s cancer experiences, or types of cancer. Everyone’s experience is so different, so comparing these differences could bring up the feeling of which is more valid, and whose experience is “worse.” Especially stay away from, “at least…” or “could be worse” types of statements. These are conclusions the cancer patient can come to on their own, they don’t need anyone else to provide this insight. Some could say that my experience was of the “easier” types of cancers to treat and deal with, however, that doesn’t mean that I didn’t experience similar feelings (fears of dying, etc.) that cancer patients with more “serious” diagnoses experience. The most helpful kind of comparing is regarding similarities. Validating a person’s experience (emotionally and physically) can be very helpful.
5. Be a Source of Support
ADVICE: Cancer patients rely on their support communities. This is one of the most essential things I’ve learned and immediately submitted to. I initially wanted to resist the support and to stop reaching out, but did it because I knew that I would need it. I know this partially because I’m a mental health professional, but not everyone will be able to ask for or accept help.
There are many ways to show up for someone who has been diagnosed with cancer and is going through treatment.
Here are some ways:
Visit, if you can. Seeing people in person helps the patient and you feel connected, not alone, and allows you to actually see what is happening (vs. imagining).
Call them. Speaking on the phone helps reduce the loneliness and fear as well. It is sometimes nicer to hear a voice than see a text. It can also be exhausting to send the same texts to a lot of people. I personally didn’t mind repeating a story over the phone. It actually felt like I was able to connect with someone and have a shared life update. Call more than once if you can. This is a long process. It was also nice for me to hear what was going on for others, since being at home and out of my normal routine was isolating.
Share your feelings about the person getting cancer. This might not be helpful for everyone, but it was helpful for me to hear how hard it was on my loved ones when they found out I had cancer. It made me feel significantly less alone, and very loved. So, don’t necessarily hold back your feelings and tears. Of course, there is always a line where you might be asking too much of the cancer patient, so just ask if what you are sharing is okay, and be open to the answer. I also noticed that those who avoided their emotions ended up being less helpful, and sometimes made more hurtful mistakes (particularly for those closer to me). Communication is important. Get additional help for yourself if it is just too much.
Send packages/cards. Getting things in the mail was a treat. Just be mindful of what a person might actually like/want. Getting too much unnecessary stuff can make for more work during a difficult time.
Organize a MealTrain or GoFundMe. I cannot underscore how much these supports helped me. A friend organized a MealTrain for me, so we had people bring meals on two days a week. This was so helpful during a time when I did not have the energy/stamina to make dinner, and it was tough on my partner to come home from work and cook every night. I felt uncertain about the GoFundMe at first, because I didn’t want to take money from people. I didn’t want to feel in debt to anyone. But after talking with loved ones, I realized that people wanted a way to help, and this was a very tangible way. In addition, since I am self-employed and was not able to work during this time, this took away the added stress of finances that living expenses and medical bills bring. I’m sure there are other ways to do these things, but these are just the websites I used.
Email/text. I know I said calls are more helpful, but it is still very nice to hear from people regularly. It is lonely being at home, and I was not always up for a full out conversation. So the regular check-ins were super helpful. Don’t hesitate to ask questions, but you can communicate that it is okay to not answer. And share about yourself. It can be isolating to be alone and out of the day to day events of society, so hearing what is going on for others keeps a person feeling like they haven’t been forgotten.
Once chemotherapy is over, don’t go away. It can be easy to assume that the now cancer-free person is alright and not in need of support, but symptoms can last for some time, and the transition back into “normal” life can be hard. A couple of good links to understand what life after treatment might be like: https://www.cancer.org/treatment/survivorship-during-and-after-treatment/be-healthyafter-treatment/life-after-cancer.html and http://www.cancer.ca/en/cancer-information/cancer-journey/life-aftercancer/
6. People Make Mistakes
ADVICE: Don’t take anything too personally. If you are reading this, and thinking that you may have messed up, don’t. No one does cancer “right,” not the patient and not the friends/family. It is a messy and scary process for everyone involved and it is okay to mess up. For example, you may be the one to make a cancer joke around the patient. That will happen. “Sorry” works perfectly fine! We all live and learn. I’m just here to write about some of the things I learned while going through something that I never expected to go through.
7. Patience Patience Patience
ADVICE: Lastly, be patient. I went through chemotherapy in addition to having nephrostomy tubes for 7 weeks and ureteral stents for 3 ½ months, which made me experience a range of symptoms at different times, such as nausea, body aches, hormonal changes, irritability, sadness/grief/fear, sore throats, infections, and digestive issues. I wasn’t been able to work, go out in public places much, walk very far, or do many of my normal daily activities. Even when I seemed “fine,” I was often tired, and could get wiped out by just one or two simple tasks. It was most helpful when I was able to have help and understanding along the way.
I hope these points of advice are useful. It isn’t necessary to remember them all, but even just trying to keep them in mind could help. I know it isn’t always possible, because we all have needs, but try to be patient and remember that this is temporary.