National Cancer Survivors Day is celebrated on the first Sunday of June every year. For 2021, that day is June 6th. Today is a day to celebrate those who have survived a cancer diagnosis and give inspiration to those who are recently diagnosed. Per the official website of National Cancer Survivors Day, it is also a day to gather support for families and outreach to the community.
I have taken a personal interest in the way cancer is communicated ever since I read Susan Sontag’s book, Illness As a Metaphor, and decided to conduct my thesis research comparing the ways breast cancer and diabetes were communicated about. Communication involving cancer happens in a lot of places—in the doctor’s office, in the media, and even between friends and family.
In 2020, Cochrane took to Twitter to ask people to share their experiences and advice for communicating about cancer, and they summarized what materialized from that conversation here. Among many takeaway points was the importance to be honest, compassionate, choose words wisely, and listen. These are great things to consider whether you are writing or speaking about cancers.
Another important thing to consider, in our opinion, is to involve the people that your content concerns (i.e., stakeholders) early in the content creation process. By doing so, we hope to ensure that we make effective and accessible content for our intended audience.
Audience. Audience. Audience. The audience is so important to consider in any form of communication. I saw a Tweet the other day that said something along the lines of “if you are communicating for everybody, then you are communicating for nobody.” I really liked that, and it is so true.
Because we are focused on making accessible science content here at Lifeology through storytelling and art, we thought we would have a Q&A with someone about creating content for people affected by cancer—survivors, patients, and caregivers. We met Mohamed C. Shahenkari when we asked him to review our What is immunotherapy? course. The course was written by a cancer researcher, Jack Chan, and illustrated by Gaius Augustus. It was important to us that someone going through immunotherapy could provide that perspective to ensure the content was appropriate and effective for somebody that needed the information. Mohamed reviewed and provided great feedback that helped the course become what it is today.
For this blog post, we asked Mohamed to reflect on the content he has found helpful or memorable, explain why it was effective, and provide additional tips or advice for those creating cancer content. We hope that this Q&A can encourage content creators to reflect on the cancer content they make and involve those who are affected by cancer early in their creation process. Some main takeaway points (TL;DR) can be found at the bottom of the post.
Advice from Mohamed for those affected by cancers:
A positive attitude is key to recuperation. It’s not always easy to achieve but try to keep positive and goal-oriented. Reach out to people for help, don’t be afraid to ask for help if you need it, and you will. Be kind to yourself and allow yourself to heal at your own pace. Everyone heals differently, don’t rush it and don’t judge your journey based on someone else’s results.
Cancer is a scary diagnosis but it’s not the end of your story.
Tell readers about yourself.
I am an Oral, Head and Neck Cancer patient. I had a malignant squamous cell tumor removed from under my tongue during an 8-9 hour surgery in January of 2019. During the surgery, they took out part of my tongue and some of the floor of my mouth and replaced it with flesh from my left wrist. I then underwent 7 weeks of radiation and 2 chemotherapy treatments with the drug Cisplatin. My cancer has not returned to my oral cavity but did pop up in both of my lungs. At that time I went to an immunotherapy clinical trial at Memorial Sloan Kettering in New York City. I have been on this trial since October of 2019. So far I have been having very few side effects from the immunotherapy. The treatment has been very successful in shrinking the tumors in my lungs and also keeping it from recurring in my oral cavity or spreading anywhere new. I am currently taking immunotherapy twice a month, exercising, eating right and trying to live the best life I can in a post-pandemic world.
Tell us about some examples of content related to cancer that really helped you or that was easy to understand etc. Why do you think it was helpful and/or memorable?
For me, during the time of my treatment, I was overwhelmed with information and news about health updates. I don’t want the information to be too simplistic but I need it to be easily digestible and executable. Pictures are helpful, especially with equipment or things like the stomach tube feeding. Pictures were very helpful.
What challenges might communicators and/or healthcare providers face when creating educational content about cancer and related topics? In other words, what should they think about or consider when creating content about these topics that they may not encounter in other topics?
Fear. Remember that almost all of the people reading this are afraid of death. Dying themselves or reading for a loved one who may die. Or at the very least a severe reduction in normal activity for a while. Don’t avoid the complex reality of the situation but I would say just tread respectfully. You need to find a balance of reality and overwhelming someone with too much.
From your perspective, what tips or practical advice do you have for communicators/practitioners for creating cancer/immunotherapy communication materials?
I would suggest giving information slowly and clearly but also doing a summation at the end that goes over major points for the patient or caregiver. When I was diagnosed and going through the first few consultations it was a blur. I had people with me to listen but I didn’t understand the full scope of just how sick I was, how sick I would get during treatment and how severe the situation was until well after my surgery and into treatment. I was warned and I was counseled but it took a long time to sink in. I don’t blame anyone or anything except the situation I was in. My care providers from oncologists down to my family members were all very caring and helpful but it’s a lot to take in quickly and a bitter pill to swallow. Slowly and clearly explain what is happening, the realistic risks and side effects, expected results and next steps after that.
When creating content, do you think it is important to consult with cancer survivors early in the process of creating the content? Why or why not?
Cancer survivors are very useful in this process in my humble opinion. As you are going through treatment, you have to focus on you and your care. You don’t have a great deal of time to give feedback. However, with time comes perspective. The survivor has had time to process the situation and hopefully gain insights that can help others along their journey. I would say early consultation with survivors would be important because some things are fresh in their minds at that moment. Follow-ups with the same survivors would probably be helpful as well to see how they feel about their earlier consultations.
Have you come across visuals and/or artwork that made cancer-related or science content easier to understand or more understandable? If so, please tell us about those and why they were memorable or more accessible. If not, do you think that type of content would be helpful?
The immunotherapy course I gave some brief feedback on with Lifeology was very well done. Beautifully illustrated, well written, considerate of the patient’s feelings and extremely informative. A lot of the content I’ve seen from other organizations have varied in helpfulness. Some of the better content was brief but informative. It had bullet points or side notes of important points that may be lost in blocks of text. Again, as a patient I want information but early on I need it to be easy to access and understand.
Do you think there is a difference in how written or other visual communication as opposed to verbal communication should be carried out?
Written and visual communication are very different from verbal communication. With verbal communication, I can elaborate. With a picture or word blurb, you don’t have that ability. So you have to be more clear and concise in a smaller amount of time. Verbal communication is great but I think visual communication can inspire in a different way. For me, it plays with my imagination more. I can imagine something you spoke to me but the visual element is a starting point that makes it even easier to sprout an idea from.
Do you think storytelling can be helpful for communicating about cancer and related topics? Why or why not?
I think storytelling can be very helpful for communicating cancer and related topics. It gives the patient or caregiver something to equate their situation to. For instance, I was told a lot about side effects and how I would be after surgery and treatment. Hearing the stories from other cancer patients made it more real and made me feel less alone. For some reason hearing from other cancer patients who were going through some of the same things made me feel much better.
If you meant storytelling in the way of a fairytale or other created story, that could also be helpful. Some of the complexities of cancer treatment are hard to grasp. This problem is only complicated by the severity of the situation. The patient is scared and anxious about the course of their illness. Explaining something simply in the form of a story might help the patient grasp the idea a little more easily during this difficult time.