Look After You – Self CARE Lifesavers!


Tuesday January 26, 2016


Our CEO, Abby White, a survivor of retinoblastoma, shares some top tips that work for her to reduce the daily stress caused by long term effects of the cancer, running the charity,  responding to the needs of families in distress, and modern life in general.


Self care is vital for all who are directly impacted by childhood cancer.

Being the parent of a child with retinoblastoma, or a survivor (of any age) dealing with the impacts of the cancer, its treatment and the RB1 gene, can be very tough. Being a medical professional caring for those of us affected by retinoblastoma can also be incredibly draining, especially for those working with limited resources and constantly responding to the needs of families in acute distress.

While we all have many demands, responsibilities and commitments pulling us in different directions, it is vital that we invest well in looking after ourselves, so we can be fully present, calm and energized to embrace the challenges we encounter.

Give yourself permission to take time out for you every day.  When you take a little time to think about how to do it, you can find ways to easily weave self-care into your daily routine so it becomes a consistent experience, as well as adding in additional scheduled personal time.

Even on the most hectic and stressful days, it is possible to create space for yourself, with a little attention.  Not only will you feel the benefits, your family and the people you work with will feel it too.

Below are some suggestions for self-CARE to help create inner calm that will dramatically improve your quality of life and the lives of those you care for.

C: Compassionate Counsel

"Our lives begin to end the day we become silent about things that matter" - MLK Jr.

Our natural human tendency is to supress niggling unease, doubt, or worry.  But that tends only to magnify it, to stir up more emotion and irritability.  Try instead to explore those emotions constructively to identify their root cause.

Let them speak in your heart and mind so you can give them a name. When we acknowledge our feelings, we can respond to them and work with them, diminish their power and find a healthier way forward.

  • Consider journaling or creative arts to freely express your feelings – getting them out of your mind and into written word or a physical form can give clarity and help relieve tension.
  • Seek the support of a trusted family member, friend or work colleague to talk things through with.
  • You may find the support of a professional counsellor particularly valuable.

Copious research shows that greater awareness of our own emotions and how to live with them effectively, hugely accelerates personal growth and peace.  Especially when we are coping with stressful experiences like cancer.

A: Affirmations and Action

"The mind is everything - what you think, you become." Buddha

Our internal conversations can be incredibly destructive in times of stress and trauma.  Our constant roundabout of questions, doubt, judgement, fear, guilt, shame and regret.  Holding on to positive thoughts, and acting on them can seem an uphill battle or virtually impossible when life tests us.

But living life through negative feelings only creates negative action (or inaction), more fear and other negative feelings of failure, inadequacy and powerlessness.  Don’t invest your precious energy on these empty emotions.

Thoughts and emotions are like waves – we can observe every one individually, and marvel at their shape and might, and we can choose which ones to surf.  We can recognise which ones are too big, with a dangerous capacity to flip us over and drag us under.

Use positive self-talk to help you let go of uncertainty, and refocus on hope. Write down a few positive self-affirming statements relating to a specific concern you have, and make time to consciously read them every morning and evening. Speak the words as if you truly believe them, even if you don’t believe the statements at first.

For example, if you are worried about a particular approaching medical exam, you might write something like:

  • The doctor is / I am well-trained to do this procedure.
  • I am prepared, and I know what to expect so I can fully support my child / the child I am caring for through this procedure.
  • My body, mind and spirit are calm and I am ready to make this procedure a complete success.

Is worrying really worth your energy?  Instead of fixating on fear, obstacles and what-if’s that deplete you, look for solutions that will help to build you up.

  • Can you make changes to reduce the stress?
  • What can you do to prepare so you have more fear-quenching knowledge?
  • Can you discuss the situation with key people to find a better way forward?
  • What can you do to brighten your outlook today?

Write down your thoughts and plan of the steps you will take for today’s immediate positive action. Action is empowering!

R: Relax and Replenish

"Peace does not mean being in a place with no noise, trouble or hard words, but to be in the midst of those things with a calm heart." Anon.

Our days can flash by so fast.  Filled with meetings, clinics, emails and social media, tests, treatments, emails, more meetings, research, school runs, more social media and constant distraction from notifications.  Suddenly it’s time for bed again and we took no time amidst all the craziness to breathe and “smell the roses”!

When we take no time to just “be”, our perspective, actions, self-compassion, and effectiveness are compromised.  Make a conscious decision each day to take time for you.  Write it into your schedule if you have to, but make sure you take that time to refresh your body, mind and spirit.

  • Switch Off: Turn off your notifications, limit the number of times you check email and social media feeds throughout the day, and put your phone on silent during your special time.
  • Practice Mindfulness: Use techniques like yoga, deep breathing and meditation to bring yourself fully into the present moment. There are many resources online, downloadable tools and community classes you can join to help learn and develop these skills, and enjoy them with others.
  • Take Your Vitamin N: Find a green space to unwind in where you can exercise, meditate, pray, relax with a book or favourite music, or just breathe the fresh air. Take a drive along a particularly relaxing route.
  • Exercise: Go for a walk, run or swim. A session at the gym, a workout with friends, or an exercise routine at home.  Physical exercise releases tension and relaxes the mind, whether done alone or shared with others. .
  • At the Hospital: If your child is well enough to leave their bed, explore the ward or the wider building together. If your child is confined to bed, ask a friend, volunteer, another child’s parent or a nurse if they can watch your child for 10 minutes while you take a break to breathe in fresh air.  Do this at least once a day.  Visit the hospital gardens or a nearby park, if there is one, or walk around the local neighbourhood if the surroundings allow.
  • Read and Listen: When you read a book or listen to music, be careful to choose material that makes you feel good. A novel or song with a depressing or negative theme, or a non-fiction book that moves your brain into high focus, will not be conducive to physical or mental relaxation.
  • Socialize: Share a coffee or meal with a good friend. Join in social activities where you can simply experience and enjoy the activity taking place, rather than be “responsible” for it.
  • Take up a Hobby: find something that relaxes you and gives you positive energy.  There are boundless possibilities….

On very busy days, when you truly don’t see a way to take any time out, create an oasis right where you are for 5 minutes to be still, close your eyes and breathe deep.  The following video can help you create that space, right where you are.

If you continually find that you have no more than a few moments each day to invest in yourself, it will be valuable to take a careful look at your commitments and supports.  Where do your priorities lie?  Can you let go of any responsibilities?  Who can help share the load?  What can you do to care for yourself a little more?

Consider an entire weekend (or longer) without email, texts, notifications, social media, meetings and other distractions.  You can stay at home or take a relaxing short break in a location that nourishes your soul.  The goal is to create a deep space in which to regain perspective and approach your commitments with greater clarity and motivation.

During your retreat, write down your top three priorities – the things that are most important to you.  Look carefully at whether you are making room for those priorities and your own self-care in your daily life.  If you are not, what simple actions can you implement to begin changing that situation?

Each day, commit to eating, drinking and sleeping healthily.

  • Eat Healthy: A balanced diet with plenty of fruit and vegetables has a huge positive impact on mental and physical well-being. Think about preparing meals in advance and freezing daily portions, or asking friends and family to help with this, to ensure you eat healthy during particularly stressful times.
  • Stay Hydrated: Cut down on caffeine, and drink at least two litres of water daily. Carrying a bottle of water, drinking flavoured water, and setting reminders on your phone to prompt you to drink, can all help.
  • Eat Early: Try not to eat for 3-4 hours before bed because if you eat late, your body will be working hard through the night to process the food, which is more likely to disturb your sleep.
  • Prepare for Sleep: Turn off devices an hour before bed so your mind can wind down and the screen’s blue light doesn’t stimulate your brain to wakefulness.
  • Get Sufficient Sleep: Go to bed at a time that will give you the amount of sleep you know you need to feel good and function well – between 7-8 hours for the average healthy adult.

All these healthy living concepts are simple common sense, but not so easy to put into consistent action.  Developing healthy habits with a buddy can help each person with motivation and accountability.  So talk with friends about whether they’d like to get involved – make it a fun experience, rather than a pressured “must-do” challenge.

E: Educate and Envision

"The best way to predict your future is to create it" - John Drucker.

Retinoblastoma is a rare and complex cancer with often very involved treatment over months or years, and lifelong impacts.  Information is the food that builds knowledge and helps us navigate the experience.  But information presented in the wrong way, at difficult times, too much of it, or too little, can be completely overwhelming.

If uncertainties and unanswered questions about a particular medical situation or procedure are causing you stress, take steps to gather more information.  Discuss with the care team.  Talk with parents, supporting professionals or organization staff who have valuable knowledge and experience to share.

When you have greater understanding of the situation, and know what you can expect, you can be a stronger advocate.  You can make more informed decisions, explain to others more effectively, and help a child cope.  Knowledge and preparation gives us power over fear.

When you think about the situation or event causing your worry, try to visualise a positive outcome.  Spend some time defining what a positive outcome means so you.  Write your thoughts down or draw / paint them in a picture.  Then conjure that outcome in your mind when you think of the situation or event.  Train your mind to frame it in positive terms, rather than latching onto negativity through fear.  This may take a lot of self-discipline, time and patience, but you will find the benefits are vast for you and all those around you.

In Summary

Investing in your own physical, mental and spiritual well-bring is vital. When we don’t look after ourselves, we cannot be truly effective in caring for or advocating for those we love. When we take care of us as well as those we love, we become calmer, more positive and energized. We also set a great example of self-care to those we love.

Parents of children with retinoblastoma, survivors of all ages and medical professionals are all vulnerable to post-traumatic stress, compassion fatigue and burnout. Healing from these conditions is a deep process that can take many months or years. By learning and practicing daily self-care, we can reduce the risk of these conditions developing in the first place, or lessen their effects.

So put your own well-being at the top of your priority list today. Identify the things you can do to reduce stress and be fully present for those on whom you lavish your care. Then create an action plan and implement it every day to give yourself the best opportunities of inner peace and optimal effectiveness in all you do.

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