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.
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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!