Talking About Your Child’s Cancer Diagnosis With Family and Friends

Monday February 4, 2019

Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.

“The world turned upside down, and now I’m supposed to talk about it?”

Talking to extended family and close friends about your child’s retinoblastoma diagnosis and plans for treatment is a deeply personal decision. Some families are extremely private about the news, and others are open about sharing. Take time to consider your family’s preference before sharing the news, and make sure you are comfortable with what you want to share.

Do ask the medical team questions you have about any aspect of the diagnosis and treatment plans. Due to the overwhelming nature of the news, many parents only retain a small part of the information during each appointment. The medical team can help you record the important facts in a notebook, journal or notes page on your mobile phone.

What you choose to tell others will be ever changing, for many reasons, even after you have explained it to those closest to you. The ongoing and continued questions people have about what’s happening, why it is happening, where and when it will happen may come regularly, and often, so having a plan and some coping strategies for handling this is important. Important for consistency and for your own self-preservation.

This image features two pieces of text, above and below an image of a stick family, ranged in order of height from the tall father through mother and various children to the family dog. Above: “When a child is diagnosed with cancer, the whole family is affected.” A gold ribbon sits behind the word “diagnosed”. Below the family: “Please support a local family in your community who has a child battling for their life. Bold for gold! Childhood cancer awareness and hope.”

Preparing to Talk With Family and Friends

Topics to consider when talking to grandparents and extended family members

  • Explain diagnosis and plans for current treatments. This may lessen any fears and misconceptions from their past understanding and experiences with cancer.  This can be especially valuable if grandparents have prior experience with retinoblastoma – treatments and family supports are constantly evolving.
  • Talk openly about your feelings. You may choose to avoid discussing your worries with your family to avoid upsetting them, or share openly since they may be your biggest supporters. It’s also an opportunity for them to express their emotions.
  • Let them know what help you need, and be honest if you want independence to make decisions.

Topics to consider when talking to friends

  • Set boundaries around how much your family wants to share – you can simply say you’d like to talk about something else.
  • Ask friends how they feel about the diagnosis – this gives them permission to discuss the situation.
  • Be as specific as possible when friends ask how they can help.
  • Change the topic if friends volunteer information you’re not comfortable with, e.g. if they talk about alternative therapies, a friend or celebrity who has had a miraculous recovery. Or let them know this is not helpful and you would like them to stop doing this in the future.

Making the Most of Conversations

Once you figure out what you want to say and how you want to say it, conversations can be affected by many different factors. These can include whether this is the first question of the day or the 50th, if you had any rest last night, ate anything today, if it’s raining outside, or whether you had a shower or not. You will often be filled with diverse emotions influenced by many factors, and every exchange will differ depending on the day and your state of mind.

In addition to family, you may find your friends are invaluable in providing emotional and practical support. If you are not close to your family, or if they don’t live nearby, friends can be particularly helpful. Some friends can listen to whatever you say – complaints, hopes, fears, wishes – without judging you, and without trying to cheer you up or give advice. Others may avoid you or seem reluctant to talk about the diagnosis. Let friends know it’s OK to talk about something other than cancer.

Coping strategies and scripts go hand in hand. To help you cope better, it can be good to plan out some simple scripts that will enable you to explain retinoblastoma and related treatments. These scripts should try to keep the information short and stick to the facts you do know.

You can have a planned simple script for the days you are feeling more open to sharing information, and another script for the days when you are fatigued and not interested in talking about the cancer.

If you are open to talking:

“Yes, CHILD has been diagnosed with eye cancer. It’s called retinoblastoma. It is serious and we are working with the medical team to ensure CHILD receives the best care possible. This is the plan right now – treatments/possible surgery [you can share your personalized care plan]. As I learn more/know more, I will let you know. Thank you for your concern and caring support.”

If you are not interested in talking:

“Yes, CHILD has been diagnosed with eye cancer. It is serious and right now I don’t want to/can’t talk about it. When I am ready to talk about it I will let you know. Thank you for your concern”.

Here are some helpful resources from the Childhood Cancer & Leukaemia Group, including downloadable and printable booklets, for all stages of treatment, from initial diagnosis through treatment and life after treatment. This can help you with the language you want to use when talking to people.

Staying in Touch With Digital Communication

Even with the best made plans and scripts, there will be days when it doesn’t go smoothly, or you don’t say it exactly right. That’s ok and it’s normal. Having to repeat these scripts regularly can be easy some days, and frustrating the next.

For some families it can be better and more helpful to maintain a shared message space to update family and friends on their child’s progress.  A large group email, a Caring Bridge share site, or a social media stream that covers “the facts” and includes as much, or as little, as you are interested in sharing.

This email or share space can be updated at any time. It also offers a place for you to share how people can best help you, and the opportunity to ask for space and understanding if you need to be left alone for now.

These options also allow family and friends to leave messages of support and to communicate regarding practical arrangements for tasks they plan to assist with.  They also allow your friends and family to connect with one another to plan support.

A mother holds her baby next to a hospital cot bed, while the father watches and holds the baby's IV tube safely.

Help: Asking, Declining and Everything In-Between.

Upon hearing your child’s diagnosis, your head is filled with overwhelming thoughts, worries, feelings and fears. It can also be swamped with all the “things” you need and want to do – both practical (like relocating for treatment) and impractical (renovating the entire house RIGHT NOW).

Whether you want it or not, you will need some help, and people will offer to help even if you do not ask for it. Some help from friends and family members can come in the form of advice, stories they want to share about someone else’s cancer experience, or something they read online about the importance of eating a certain food during cancer treatment.  More often, help offered by friends and family can be very practical.

It can help to have a simple list of practical tasks that WILL help you, for example:

  • Meal trains/meal preparation can give friends and family a chance to prepare food for you that are easy to reheat and serve when you are running to and from the hospital. Some families even have a cooler outside the home for seamless (and conversation-less) food drop off if they can’t muster the strength to make small talk each time food is delivered.
  • Transportation for siblings from school, sports, music lessons etc….
  • Transportation for you to get you and your child to and from appointments at the hospital/clinic/train station/airport etc… means one less worry and expense.
  • Caring for/walking the family pet. Sometimes our pets can bring us great joy and relief during stressful times, but they can also require more attention than we can spare during a child’s active treatment. Whether it’s a daily walk for the dog, cleaning out the litter box for the family cat, or a short relocation for the family turtle until you can provide all the care necessary – friends and family can help.
  • Cleaning and laundry can become overwhelming when visits to the hospital increase. However, sometimes the “normalcy” of cleaning and doing laundry can be extremely helpful to a parent during their child’s cancer treatment. Do what’s best for you.
  • Grocery shopping to help pick up everyday items that you run out of frequently.

It can also help to have a fun list of ways friends and family can help out:

  • Creating an uplifting music playlist.
  • Compiling audio or printed books for you to read/listen to during long waits/long drives.
  • Toy lending/rotating – making sure fresh and fun, stimulating toys are available for your child during treatment and in-between appointments.
  • Short visits over tea/coffee filled with stimulating conversation. You choose if the conversation focuses on what you are going through, or if it offers a lovely distraction.
  • Hosting dinner for your family. A chance to leave the house, have a change of scenery that’s not the hospital/clinic, and not worry about meals and clean up can be so nice.

If it’s hard to even explain these ways others can help, there are many wonderful resources online that can help friends and families better understand what to say, and when and how to help.

WE C Hope has a detailed section offering guidance for friends and relatives wishing to help – it can be valuable to share this as part of your Help Action Items list.

Check out this great City of Hope article for friends about what to say and what to do for families when their child has been diagnosed with cancer.

Or this HuffPost article sharing 15 things parents want friends and family to know when their child has cancer, and that person wants to help.

Consider sharing this blog with your family and friends too!

Coping Tools: Strategies for Getting Through This

  1. Communications Note-taker/book/journal to help keep track of everything. Including
    1. Treatment and medical appointments and information
    2. Meal trains/meal planning
    3. Siblings’ schedules (who’s helping and when)
    4. Mood/concerns
    5. Questions you have for the doctors
    6. Information you want to share with the doctors like reactions to medications etc…).
    7. Business cards and contact information of all the relevant people – medical, family, sibling school etc.
  1. Simple Scripts to share information with family and friends. Both the long explanation of what’s happening from diagnosis through treatment, and the short version for when you don’t feel like talking.
  1. Digital shared space to keep friends and family updated on your child’s progress, informed about your needs, and connected as a support community.
  1. List of tasks that will help you, ready to share with interested friends and family members, so they know what you want and need, and can take action.
  1. Personal coping strategies can include mindfulness meditation, watching old TV shows or binge-watching new shows, or working out at the gym. No matter what you like to do to cope, find ways to do this coping activity, and advocate for time to do this. Your coping matters during your child’s cancer treatment.
  1. Referral for support from a professional for your own personal needs. Sometimes you are so focused on your child’s needs that you push your own off to the side. Seek out help for your own support with a social worker, psychologist, psychiatrist or counsellor of your choice. Having someone to talk to about how you are feeling is essential to your health.
The following quote sits below an image of an airline oxygen mask: “Fit your own oxygen mask first. You’re no use to anyone if you’re running on empty. Caring for yourself first is often the best thing you can do in order to help others, It isn’t selfish or egocentric. Just really good advice.”

About the Author

Morgan and Doc McStuffinsMorgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.

As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.

Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.

Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.

Follow Morgan on Twitter