In 2012, for the first One Retinoblastoma World meeting in London, we produced a beautiful Alphabet of Hope, with insights and reflections from families affected by retinoblastoma around the world. Every 2 weeks throughout 2018, we shared via social media a word and accompanying thought from the Alphabet, to help raise awareness of different experiences through the retinoblastoma journey.
Perspectives shared through the Alphabet of Hope spoke to people who had no previous experience of childhood eye cancer, to family members, medical professionals and individuals with different personal experiences. It sparked conversation and gave a voice to subjects infrequently discussed.
As our sharing of the Alphabet of Hope drew to a close, we began to think about how different aspects of the retinoblastoma experience could benefit from this simple form of expression, and the possibility of beginning a new Alphabet in 2019. And so the Alphabet of Hope began to evolve.
Life with retinoblastoma is tough! All three of our previous alphabets emphasize this very well. 2020 was an unbelievably rough year for the whole world, and continues to be so as COVID-19 remains with us. While serving the retinoblastoma community through this global pandemic, the majority of our international WE C Hope team have been, and continue to navigate significant personal challenges. Those of us living with lifelong effects of retinoblastoma are acutely aware of the need for self-care to reduce the risk of overwhelm and burnout, especially when the road is tough.
Our 2021 #AlphabetOfHope is a collection of our top tips to support mental and physical health. Launching on 4th January 2021, each letter entry will share one practical tip every two weeks. We will add signposts below to further reading with every new letter publication.
Please follow the 2021 #AlphabetOfHope!
Look out for the regular Alphabet posts shared on Twitter and our Facebook Page (both @wechope). We’d love to read your feedback and hear your wellbeing tips for each letter. Please join in the conversation on our social media throughout the year.
Search for our posts using the hashtags #AlphabetOfHope and #MindAndBody.
Visit this page for all published letters and signposts to further resources. You can navigate to the page quickly at wechope.org/alphabetofhope
The Current Letter
#MindAndBody Alphabet of Hope 2021
Colmplete Text and Resources to Date
Ask Questions and Ask For Help, because you can’t and shouldn’t do this alone. We all need information and support to grow, to find our way through tough times, to weave our darker threads with beauty into the tapestry of life, and gain inner calm. Identify what you need, take steps to get the answers, and put supports in place for your own well-being.
Ask for what you need, and know how to ask for help
Ask for What You Need
People want to help but often aren’t aware their help is needed, or they don’t know how to offer or give help effectively. So reach out and ask for what you need. Don’t worry that people will be too busy or unable to assist. They may be, but let them decide.
Do you need a coach or mentor, training, specific practical assistance? Do you need to cut down your commitments or work hours so you can spend more time with family and friends or invest in self-care? Do you need someone to give you a daily hug or words of encouragement?
Explain honestly what you are feeling, specifically what you need, and how it will help you live with more peace. Then follow through to put the offered plan in place for your wellbeing. That first small ask is always the hardest step.
There’s No Shame in Taking Care of Your Mental Health
Breathe! When we’re anxious or angry, we tense up, hold our breath or breathe fast and shallow, increasing stress even more. Slow, deep breathing almost instantly diffuses tension, helping us feel calm, clear-headed and in control. Add some aromatherapy or a mindful walk in fresh air for a greater oasis of calm.
Community is the best way through tough times, and friends who cross the valley with us are often central to our healing. Find others who can support you, and stay well connected. Choose your people carefully, in the physical world and online. Tell people how they can help you, show your appreciation, and support one another.
Talk With Friends
Sharing feelings and talking over troubles with a trusted friend can offer new perspective, ease worries and give reassurance that people care and we are not alone. Whether it be a conversation in person, a live-chat over Facetime or Skype, real-time text messaging or back-and-forth messages over several days, take time to find the friends you need to share your burdens and help lift you up. And be ready to do the same for them.
It can be especially valuable to share our worries with someone who understands the experience. For example, talking with others who understand how the pandemic may impact you as a parent or survivor affected by retinoblastoma. Several minds working together usually find solutions faster to overcome challenges, and may be more able to offer reassurance to ease stress.
But recognise that worry, gossip and catastrophizing from other people may amplify your own fears. Choose your support system carefully so it builds you up and gives you hope.
Check that your contacts list is up-to-date with phone numbers, social links, emails and postal addresses for family members, neighbours, friends, and other people you care about. Find out how people prefer to connect, and record that information. For example, some people are not comfortable with video chats, but welcome internet audio calls. They may prefer a particular platform for chat communication. Plan regular check-ins with one another, but leave space for spontaneity too.
Building Connections: How to be a Relationship Ninja
5 Ways to Create Stronger Connections
Support One Another
Remember that the people you communicate with will also be relying on connection with you for support just now, as much as you rely on them. Surprise one another, be creative with your communication, have fun with it. Here are some suggestions:
Plan with friends to watch a film or TV show, or read a book separately at the same time, so you can discuss it together on a group call or video meet-up.
Set up a tandem baking session with a friend, or with your child and their grandparent (or other significant person), in which you all follow the same recipe, connected by a video call.
With your friends, listen to the same positive radio show, and chat back and forth about its features. Note one thing you’d all like to follow up on that arose from the program or your conversation. A breakfast show is ideal as they are usually 3-4 hours long with multiple features and upbeat music, and even opportunities to interact with the show – perhaps you could message in with a greeting to your friend or relative who is listening along with you.
Send voice memos to one another. The audio recording of our voice brings us closer to one another. You can also enliven the memo further with singing, music, or several members of your family on the same recording.
Send surprise items in the mail. Perhaps you have a collection of postcards from past holidays, or gifted writing sets you thought you’d ever use in this digital age. Now may be just the time to dust them off, show them some love and send them out with a smile. Receiving an unexpected handwritten letter or card in the post is always a delight, just now more than ever.
How to Connect with Depressed Friends
Cuddle with Your Fur Babies
Pet therapy is enormously soothing to both body and mind. The rhythmic motion of stroking a furry animal helps to regulate breathing and calm racing thoughts. Active play helps draw our mind away from troubling thoughts into the action of the present moment. The physical activity and shift in perspective helps to release tension.
Animals are very attuned to the emotions of their human companions, and can present themselves at opportune moments for a little respite. Take advantage of those moments, rather than shooing your pet away in frustration.
Harvard Report: Dogs Reduce Stress
Do Something New! Cancer can quickly shrink and devour our lives. Activity changes our focus. Learn something every day to keep your mind sharp and open your world. Stretch beyond your comfort zone, and set aside your worries for a while. Be surprised, entertained, enthralled. It’s never too late to begin something new.
Why We Must Do New Things to Live a Happier Life
Try Something New
Exercise helps us relax, increases brain power and is proven to overcome depression. As little as 15-20 minutes of physical activity, 3 times a week can have sustained positive effects on mental health. Find what works for you. In tough times, that may be just 10 minutes of yoga, or a walk down the street. Start where you can and build from there.
Yoga originated in India about 5,000 years ago, and has evolved around the world into many styles of practice with different philosophies and exercises. Each can be applied in a range of situations for both physical and mental health benefits.
Yoga is now commonplace in health clubs, hospitals and other health care facilities, community centres, schools and retirement homes.
Yoga poses (asanas) involve a series of movements, holds, and controlled breathing. They help to calm and purify the body and mind while also developing physical strength and stamina.
Medical research shows that regular yoga practice helps ease high blood pressure, pain, depression, stress and symptoms in a wide range` of other medical conditions.
Some styles of yoga are more vigorous than others. Some place more emphasis on posture, and others on the breath. Many yoga teachers develop their individual practice by studying and combining elements from multiple styles. No style has proven to be more effective or beneficial to stress relief than another. The important thing is to choose a teacher, approach and class that suits you.
If your child is still in/recently-past treatment, consider asking if the hospital, hospitality housing like Ronald McDonald House or another support service offers yoga classes for parents. If you are a survivor living near a cancer centre, you could ask if the hospital has a program you can join. For example, survivors living in the UK can benefit from yoga, tai chi or qigong classes run by Maggie’s Centres across the country (you do not need to be an active patient at the hospital to benefit from this service).
There are many yoga practice possibilities online, for complete beginners and more experienced yogis. From full length classes to routines as short as five minutes.
A quick Youtube search will bring up a vast array of routines with which to start or end the day. You can also find routines for office breaks when you have limited space and you are dressed for work, or to address a wide range of physical and mental health situations.
This is a good routine for complete beginners. The presenter takes her time to explain each breath, movement and pose.
Make Daily Exercise Fun at Home
Even if medical circumstances, a global pandemic or other challenges keep you home or close to home, there are still many ways to exercise. With a little thought, you can weave fun physical activity into your daily routine at home. Try these tips to get going:
Schedule a daily workout, and ask fellow family members to support you by respecting that time. You may even want them to join in.
Prepare a specific routine, or follow an online workout video. When you don’t have to think about what to do next, you’re more likely to complete the session and gain more from it.
Do PE with Joe – during the COVID pandemic lockdown in 2019, Joe Wicks live-streamed a free daily workout for families around the world. Past sessions are available at The Body Coach TV YouTube channel. Joe is donating all advertising revenue from these videos to the NHS Charities Together, COVID-19 Appeal.
Learn to dance. Step by Step Dance School are live streaming virtual dance classes during the COVID-19 pandemic. They conform to social distancing guidelines, and teach steps with awareness that people will be unable to dance with a partner. Videos are also audio described, including blind and vision impaired participants. If you’ve always wanted to learn to dance but worried about dancing with another person during classes, this is an ideal time to learn. Find past sessions under the Videos tab.
Join an online Zumba or yoga class. If you were previously part of a face-to-face class, find out if the coach has sessions available online, or what recommendations they have for other remote classes.
When you are watching TV, stand up and jog on the spot whenever something specific is happening on screen – for example, when a scene involves an animal or takes place outside. Children may find this particularly fun.
Pace while talking on the phone.
Dance to music while cleaning – create your best playlist and get moving! It’s hard to worry about germs when you’re grooving to your favourite sounds.
Take a family friendly Taskmaster challenge: A new task was set every Monday and Wednesday during the first COVID-19 lockdown in 2019, and #HomeTasking challenges continue. A video montage of the best contributions are available on the Taskmaster YouTube channel. Create your own videos for current or past Taskmaster challenges. Here’s one fun example!
Feelings: You don’t have to be positive all the time. It’s perfectly OK to feel sad, angry, annoyed, frustrated, scared, or anxious. Having feelings doesn’t make us a negative person, it makes us human. Be aware of your emotions; name and respect them, so you can let them go in a healthy way.
Manage Strong Emotions (ABCDEF Technique)
Small fears and anxieties can compound into marauding emotions if we don’t learn to respect and properly manage them. We often can’t remove the uncertainties and challenges of life, but we can work from within to manage our emotions and feel less overwhelmed by them. Try this simple ABCDEF teqhnique: Acknowledge, Breathe, Counsel, Defuse, Exchange, Feelings.
Acknowledge: Bring your awareness to your feelings, and accept that they are there. So often we allow thoughts to sit in our mind without paying good attention to what they really are, or we simply push away uncomfortable feelings. Try naming your emotions and the sensations your body feels in response – for example, “I feel anxious because I don’t know what will happen. My shoulders are tense and my heart is racing.” Strong emotions control us when we don’t give them close attention. Actively focusing on them, and how they make you think and feel, reduces their power.
Breathe:Give your emotions space by taking some calming deep breaths. Sit or stand up straight, drop your shoulders to help release physical tension throughout your body. Breathe in for at least a count of 3, then hold and breathe out for another count of 3. There’s no need to modify your thoughts or feelings, just continue to acknowledge them for what they are, without any judgement.
Counsel: Remind yourself that negative thoughts and feelings are the voice of fear, that craving and endlessly seeking impossible certainty is unhelpful, and that fear is not a statement of fact. Remember the FEAR acronym: False Evidence Appearing Real.
Defuse: Emotions are not who we are. Think of them as waves of experience we can choose to surf. When we consciously release it, the troubling thought or feeling flows away. When you notice an emotion or thought process pulling you down, disrupt it by saying something like “this is making me unhappy. I am not doing this anymore. I deserve to treat myself more kindly”.
Exchange: How can you view the situation more positively and relieve your tension in this moment? Take active steps to replace the negative emotion with positive ones. For example, using gratitude, or a deep breathing exercise, listening to an uplifting playlist, or a funny recording of your children, friends or a favourite comedian. Laughter, smiles and singing aloud create some of the best emotional healing. Do you have to continue with the task at hand, or can you take a brief mental reset break, and return later with a clearer, calmer mind?
Feelings: What are you thinking and saying to yourself now? How do you feel, physically and emotionally? Name those sensations and feelings, for example “I feel calm”, “my muscles are relaxed”. Paying close attention will reinforce the value of this approach, and help you adjust your action responses as you go along, to discover what works best for you.
You will need to practice over and over again before managing your emotions in this way becomes natural, but doing so will be worthwhile.
Why You Feel What You Feel
Why We Get Mad – and why it’s Healthy
The History of Human Emotions
Gratitude filters the toxic sprawl of negativity. Daily practice helps combat depression, enhance wellbeing, outlook and relationships, and improve focus and productivity. Keep a Gratitude Journal – recording the story of small daily gifts and their impact on your life nurtures personal growth and inner peace.
Gratitude Can Change Our Lives
Our thoughts are incredibly powerful. A single thought can quickly leach colour away, and the gathering grey mood separates us from potential to experience joy. We generate a sprawl of negativity every day, its rotten energy crackling through the space in which we live and breathe. Yet we can filter the toxic air around us with daily gratitude practice.
We can fundamentally shift our outlook by simply appreciating what we have in the present moment. Gratitude disciplines us to stop wishing for something else, to value the blessings we have right now, and the experiences we have already received. Gratitude helps us to be more content.
In times of busyness and intense stress, daily gratitude can greatly improve quality of life. Yet we tend to give the least mind to gratitude at these times. We’re so caught up in our thoughts that we fail to recognise the gifts blessing us right now.
When we regularly focus on gratitude, we train our minds to look for the positive rather than focusing on the challenges, frustrations, and slights we encounter. Mindful gratitude practice means becoming immersed in the emotion so that we feel deeply and profoundly thankful.
There are many ways you can practice daily gratitude. One of the simplest is to keep a gratitude journal. Try this super simple gratitude practice every evening for a week before you go to bed, and observe how you feel as a result.
Write down three things that went well during the day, how they happened, what you experienced, and a brief explanation of how they impacted your day. For example, meeting with a friend, receiving a compliment, and experiencing a refreshing moment in nature. Taking time to record these small gifts aids personal growth and boosts contentment and daily happiness, even in the toughest times.
When a day is especially hard and you can’t identify anything that went well, take a few minutes to look back through your reflections. You’ll probably find some inroads to gratitude for the day, and reflecting on previous gratitude will draw your mind away from a trap of negative thinking into a more positive mind-set, ready for the next morning.
Long Story Shortz – My Gratitude Jar (great for kids)
Gratitude: The Most Powerful Practice You’re Not Doing
Hailey Bartholomew’s 365 Grateful Project
How to Create Daily Habits of Gratitude and Appreciation
Gratitude: The Short Film by Louie Schwartzberg
Louie Schwartzberg: Nature. Beauty. Gratitude
Guided Meditation For Gratitude
Gratitude and Happiness
An Experiment in Gratitude | The Science of Happiness
Robert Biswas-Diener: Your Happiest days are behind you
David Steindl-Rast: Want to be happy? Be grateful
Jane Ransom: Discover the Three Keys of Gratitude to Unlock Your Happiest Life!
The Four A’s for Expressing Gratitude
Show Your Partner Gratitude
Chaotic, uncertain times also create opportunity to focus on the things you value in your partner, to show them tenderness, respect, love, and appreciation. Gestures of reassurance and love go a long way when circumstances raise insecurity and stress. Here are a few suggestions to get started.
Make a conscious effort to recognise when your partner does or says something that eases your day and makes you feel good, and show that you appreciate their words and actions.
If this is challenging to do in the busyness of the day, take time in the evening to share at least one thing that was appreciated during the day.
Perhaps ask your partner what you can do tomorrow to support them and help them feel loved, and share one thing that could help you.
If spoken word isn’t easy, consider placing a bedtime gratitude note on your partner’s pillow – those notes may become precious keepsakes.
Create a Treasure Box: Decorate and fill a box with mementos of your life together – photos, letters, souvenirs – anything that has special meaning for you about your partner. Prepare a special time for only you and your partner when you are both relaxed, perhaps after a meal, and share the treasure box. Ask them if they would like to look through the contents together now, or on their own later – respect their choice. The goal of the box is not to spend time looking through the objects together, but to convey to your partner how much they are treasured, especially at this time.
Hydrate to keep your mind and body balanced. Most adults and children don’t drink enough or hydrate steadily throughout the day. Dehydration causes fatigue, headaches, muscle aches and mood swings, and negative emotions become harder to manage. Put water by your bed and drink when you wake up. Aim for at least 2 litres (8 glasses) throughout the day.
We All Need to Drink Water Daily for Physical and Mental Health
Drinking water is something we all need to do to stay physically and mentally well. But most adults and children are chronically under-hydrated. We don’t drink enough, and what we do drink, we don’t consume steadily enough throughout the day to be of real value.
When we are dehydrated, we can feel drained and tired, we may have headaches, muscle aches and cramps, mood swings, and find it more difficult to manage our thoughts and emotions. That’s an especially toxic combination of impacts in times of crisis like retinoblastoma and a global pandemic!
Put a glass or bottle of water beside your bed, so you can drink it first thing in the morning, before you get up. Take a few quiet moments to drink slowly, so your brain has time to make the connection that you are drinking and reap the full benefit. Pay attention to it, and set the intention to drink regularly throughout the day. You will be more aware of the need to drink water in the busy hours ahead, and respond.
TED Ed lesson: What would happen if you didn’t drink water?
See video notes for the full lesson link and further resources.
Body Hydration: The Key to Improved Performance, Health, and Life
Daily Amount, and How to Increase Fluid Intake
Aim for at least 2 litres (8 glasses) of water per day. Remember that caffeinated drinks (coffee, tea, sports drinks, sodas etc.) are dehydrating. Water, whether plain or flavoured, is best. You also get a lot of water from fruit, veg, soups, smoothies etc. Be mindful though that fruit smoothies can be high in calories due to the natural sugars in fruit, and the density of fruit in the smoothie.
Here are some simple ways to add more water to your day!
10 Ways to Drink More Water
6 Water-Rich Foods That Help You Stay Hydrated
Help Protect You and the Planet
WE C Hope works with families around the world who must think carefully about where to find safe water while caring for their child with eye cancer. Globally, our planet suffers from our high consumption of single-use plastics, including water bottles.
If you have the blessing of clean water flowing from your taps, please use them! Please refill your own drinking bottle rather than buying plastic from the store, and recycle whenever possible. Please help protect our planet while also looking after your own health and wellbeing! Thank you so much.
TED Ed, What really happens to the plastic you throw away
See video notes for the full lesson link and further resources.
How to make filthy water drinkable
Learn more about and purchase Michael Pritchard’s Lifesaver Bottle, featured in this TED Talk.
Imagine something better than this moment – a comforting place, memory, future event, or fantasy world. Children process experiences, explore new ideas and escape reality through play and art. As we grow, we lose our daydreaming skills and may need some prompts such as guided meditation and creative arts. Give your imagination wings today.
Imagination is Vital
The neuroscience of imagination
How would you finish the sentence, “Imagine if…”?
Guided imagery allows us to create an alternative reality in our mind, rich in calming experiences. For example, we may imagine we are playing on a beautiful beach, warmed and strengthened by the sunshine, and calmed by the gentle ebb and flow of the waves.
By mentally entering that different world, touching, seeing, smelling, hearing and tasting it, we transport our attention away from present physical or emotional pain to a place of comfort and peace. The power of imagination soothes both mental stress and physical sensations of pain.
Using this simple visualization practice, pause for a mental vacation. By visualizing your perfect relaxation spot, you can put yourself in a calm, restful, and elevated state of mind. You can do this as you sit for a few minutes between tasks, waiting for the bus, anywhere that creates space between… Please never use this tool while driving or in any situation where you need to remain alert to your surroundings.
Here are two brief guided visualisations to help you take a mental vacation. Many longer guided meditations are available on youtube, or for purchase on Audible, iTunes and elsewhere.
Visualize Yourself Calm
How does it feel to be calm, free from worry and the attention-seeking thoughts of a cluttered mind? How do you breathe in those moments of peace? How does your body rest? Next time you’re aware of feeling particularly at peace, pay particular attention to your breathing and position.
How deep are your breaths – their pace, tempo, duration, in/out ratio etc.?
How are you positioned? Are you sitting, reclined, standing? Does your breathing and sense of peace remain or alter when you change position?
Now try to imagine yourself calm. Close your eyes and take a few deep, cleansing breaths. Imagine your body and mind feeling relaxed as you navigate through a stressful situation. Recall how you naturally breathe when you’re most relaxed. Pay attention to recreating that breathing pattern, or simply breathe slow and deep.
When you take time to create a clear mental image of what it looks and feels like to be calm in a difficult situation, you can refer back to that image when your reality begins to tense.
This can be very difficult to do when we are caught up in the stress of a situation. Daily practicing specific breathing techniques, or using a guided meditation to reduce stress and create calm, can be very beneficial.
Try this 5 minute guided meditation to reduce anxiety and increase calm. A wide variety of longer meditations are available online, but in the moments we most need the calming space, 5 minutes may be all we have – and all that is needed to restore calm.
Use Positive Affirmations
Affirmations are positive statements you repeat to yourself, describing who and how you want to be. Affirmations are phrased in the present tense, as though the outcome is currently occurring. Examples of affirmations:
“I am calm and confident”
“I don’t know what will happen, but I can control the peace I have today.”
Establishing a positive affirmation routine first thing in the morning can impact the outcome of your entire day. Using affirmations at pressure points throughout the day, and in the evening can help relieve tension, maintain a positive focus, and set up for more restful sleep and a good start to the following day.
Affirmations are valuable for adults and children alike. Writing affirmations together with your children and saying them together daily can create a great opportunity for communication and bonding.
When practiced deliberately and repeatedly, positive affirmations can literally rewire the brain, replacing negative thoughts with positive ones. Daily practice reinforces chemical pathways, strengthening the connection between neurons. Over time, they are more likely to transmit the positive messages naturally, without your conscious direction.
Here is a short introduction to using positive daily affirmations.
Inspire Your Imagination!
Taking Imagination Seriously
The unexpected beauty of everyday sounds
Turning trash into toys for learning
Public art that turns cities into playgrounds of the imagination
Joy is soul-food. Don’t let your heart’s nourishment be an accident. Don’t wait for the perfect time “after…” to treat yourself or share special activities. Create sparks of light in these messy moments right now. Rest, breathe, and notice one another. Savour the small daily gifts. Pay attention to the experience and how you feel. Be enriched by joy.
Throughout the retinoblastoma journey, and all tough times, nurturing joy is vital to help mind and body release tension and nourish hope. Morgan Livingstone CCLS explains why joy is our secret superpower, and how we can nurture it in ourselves and others.