About this blog
21st April 2020
This is part of a self-help leaflet or book that I have been meaning to write, to share the coping strategies I found through my son’s four-year odyssey through leukaemia and PTSD.
My son Henry was seven years old when he was diagnosed with Acute Lymphoblastic Leukaemia. He is now 11 and has been off treatment for one year. He is in remission and has good odds for staying cancer free, long may it stay that way. It has always been very difficult to explain the life-altering effect of having your child diagnosed with cancer. Unfortunately, as we find ourselves three weeks into the Covid-19 pandemic there are too many similarities to the ‘new normal’ of a childhood cancer diagnosis. People are getting an insight into a way of life that becomes normal for many families battling cancer.
When Henry finished his treatment in March 2019, we found that we had transitioned from cancer-related physical health issues to helping him through extreme separation anxiety and panic attacks. Most of 2019 was spent very gently and persistently encouraging and supporting Henry, making him feel safe again and building his confidence to re-engage with the world.
Henry, his Dad and I would really like to share the things that helped us through in the hope that they may help you and your family too. I think that by counting every tiny achievement each day like this, it will eventually add up to you being able to do more than you ever imagined.
Sometimes for all the family, it was helpful to try to identify the worry, give it a number and rate it out of 10.
We made a ‘Worry Scale’ with 10 as the most worried and 1 as not at all worried. It was a good way to start the day or check in at various points. Some worries are huge and real, like Henry’s cancer or COVID-19, sometimes worries are a product of us imagining the worst possible scenario.
Henry’s Dad doesn’t talk about his feelings as much so it was useful for us all to put our numbers on the worry scale and try to talk about our feelings. By sharing our level of worry we could understand a bit more why we were behaving in different ways; by understanding each other more we could be kinder to each other.
Henry’s number one tip for helping to calm down is doing counted breathing. There are a number of different techniques but the one that I taught him is simply breathing in for the count of 7 and out for the count of 11. Having done it consistently with him over time, he is now able to automatically focus on it to help himself calm down.
For myself, I have always found counted breathing really tricky but recently found that breathing along to my own mantra has worked better. Instead of counting, I use words. For example, breathing in and thinking ‘health, happiness’ and then breathing and out and thinking ‘love, creativity, fun’. Obviously, you can use whichever words work for you personally.
We found sitting outside in the woods or garden, and closing our eyes for just a few moments helped calm the senses as you start to really listen. We might hear distant traffic, birds, or even the wind through the trees.
We used to listen and then list what we could hear. It’s amazing how much more you hear if you close your eyes.
There are also guided meditations which we found really useful, and we found these online.
The focus on your child during cancer treatment becomes like tunnel vision. Having even a couple of minutes break from thinking about the practical, physical and emotional needs of your child, as well as the intense fears that can creep in, is really important.
I realised that I needed to find a few minutes in the day to switch off and I found it almost impossible. I started by getting some headphones and trying to listen to a song all the way through. I found it pretty shocking that even though a tune may only be a few minutes long, I needed to pause more than once to check that Henry was okay. I had to work on building up the amount of uninterrupted time to one whole song, then two. It felt restorative.
Combined with that, I found that keeping a tube of a favourite hand cream in my bag meant that if I was finding things difficult I could wash my hands and then use the hand cream and take a moment to breathe in the aroma. This has become something I can do anywhere if I need a moment to relax and take a breath.
This calming technique was taught to us by the fantastic Beverley Pearce and is a powerful method to calm yourself or someone else. It helps to heal, strengthen and empower both mind and body.
Henry will ask me to be havened if he is feeling very, very stressed. We both sit on chairs facing each other with his knees tucked inside my knees and I very gently stroke both cheeks with my hands from his nose to his ear saying calming “I have got you. You are completely and utterly safe.” After a few rounds, I then stroke his arms from the top of his shoulder to his elbow repeating the same calming words. This helps to regulate his breathing and calms down the flow of adrenalin.
I think that it is important to realise that after having had a panic attack or very high anxiety, you can feel completely exhausted for a couple of hours. To help with recovery, you should then watch a gentle film or have a little sleep.
I hope these tips for looking within will be able to help families undergoing a recent cancer diagnosis, or those who are struggling with the recent COVID-19 crisis.
The entire world is currently facing a period of uncertainty due to the Coronavirus pandemic. However, what does remain certain is that 12 children and young people will continue to be diagnosed with cancer every day in the UK.Read more