This is part of a self help leaflet or book that I have been thinking about writing for a long time to share the coping strategies I found through my son’s 4 year odyssey through Leukaemia, Anxiety and PTSD. We are in close contact with the charity Children with Cancer UK who are doing incredible work to improve childhood cancer treatments and find new cures. We have raised £10,000 for them since 2018 through the Creative Odyssey and Henry’s Odyssey and I was encouraged to write about our coping strategies for their website to help families supporting children through cancer. It will be going on line next week so I thought it would be good to share my thoughts through my blog too as we all need to have a good stack of coping strategies to get through the current Covid-19 situation together.
My son, Henry, was 7 years old when he was diagnosed with Acute Lymphoblastic Leukaemia, he is now 11 and has been off treatment for 1 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. People tend to respond with shock, distress, sadness and then often tell you how strong you are and how they wouldn’t be able to cope. Unfortunately, as we find ourselves 3 weeks into the Covid19 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 and was a way of life that we were ready to leave well and truly behind!!
On treatment restrictions for us included: avoiding crowded places (theatre, cinema, busy shops), avoiding public transport (no buses, trains, planes), permission to travel from our hospital in advance (even to go to visit grandparents 3 hours away), not being able to leave the country for the duration of treatment, lots of stints of isolation in hospital and at home, having a bag packed at all times for emergency hospital visits, cancelling special events at last minute due to health issues (birthdays, christmas, holidays), giving up my PGCE training and work to become a carer, not visiting our regular family holiday campsite in wales for duration of treatment as it was too far from a hospital, not being able to play with friends if they had symptoms of a cold. All of these were alongside a rollercoaster of life threatening health issues and side effects from chemotherapy and steroids, regular hospital visits and keeping on top of a gruelling medication plan. 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 Hen, making him feel safe again and building his confidence to re-engage with the world.
It was hard, no doubt, but what we learnt as a family was to take each day as it comes, look for the silver linings in the simple things, not dwell on the things we couldn’t do and find ways to make the best of our new situation without thinking too much about the future. A tricky balancing act but mostly we managed to adapt to our ‘new normal’ with some days better than others. Having come through treatment, and end of treatment, I can see now the incredible resilience and empathy that Henry has learnt through his experience. I truly believe that these characteristics will help Henry through his life when dealing with difficult situations. I have learnt that I can get through the hardest of times even when it feels impossible and as a family we have coping strategies and a deep understanding of the importance of appreciating each day. For families that have recently received a diagnosis and are adjusting to life on treatment alongside life in lockdown this has become the ‘new normal’ (an annoying phrase but can also be helpful). I totally understand how incredibly hard the situation is but I really want to let you know that you can do this. It will probably be the hardest thing you have ever done but taking it one day at a time, sometimes one hour at a time, things will change, time will pass and the nightmare will become a distant memory.
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. By counting every tiny achievement each day they will eventually add up to you being able to do more than you ever imagined.
Here is our list of tried and tested approaches to managing worries at difficult and stressful times. We tried lots of things and these were the ones that worked best in different situations.
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 breathing in for the count of 7 and out for the count of 11. Having done it consistently with him over time when he has needed help he is now able to automatically think about his breathing and 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 so instead of counting I use words i.e. breathing in and thinking ‘health, happiness’ breathing and out and thinking ‘love, creativity, fun’ Obviously you can use whichever words work for you personally. You can also access counted breathing and guided meditations for adults and kids on the Headspace App www.headspace.com/headspace-meditation-app
This calming technique was taught to us by the fantastic Beverley Pearce from http://www.calm-life-wellbeing.co.uk and is a powerful method of calming yourself or someone else. It helps to heal, strengthen and empower our minds and bodies. 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.” This helps to regulate his breathing and calms down the flow of adrenalin. After a few rounds I then stroke his arms from the top of his shoulder to his elbow repeating the same calming words. 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. If you can then watching a gentle film or having a sleep will help with recovery. Twice Henry has recognised me being very tense and has offered to Haven me, it was very relaxing, although I think the reason I was stressed was because he was winding me up!!!
Sitting outside in the woods or garden and closing your eyes for just a few moments can calm the senses as you start to really listen. You might hear distant traffic, birds, 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. We also bought a white noise machine which Hen listens to at bedtime, he likes the sound of a crackline fire or babbling brook. There are also guided meditations at or you can make them up or read them. We used ‘Relax Kids – Aladdin’s Magic Carpet and other fairytale meditations for children’ by Marneta Viegas.
Identifying the worry
Sometimes for all of us it was helpful to try to identify the worry, give it a number out of 10 and try to give it a name. This was particularly useful at home when things weren’t going well and by sharing our level of worry we could understand a bit more why we were behaving in different ways and by understanding each other more we could be kinder to each other. 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. 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. Some worries are huge and real, like Henry’s cancer or Covid-19, sometimes worries are a product of us imaging the worst possible scenario. In this case we found it useful to ground ourselves in the present by using our senses and spotting 5 things that are blue, 4 things that are green, 3 things that are yellow, 2 things that are red and 1 thing that is purple. It distracts your brain from the worry and gives it a chance to calm down and notice the present instead of thinking about what might happen.
Henry’s Grandad Mal used to read poetry to Henry’s Mum and Auntie Laura at bedtime when they were little. He also read to Henry at various times during Henry’s hospital stays and while we stayed with them during treatment. In March 2020 he has started recording some of his favourite poems and has uploaded them onto Soundcloud where they can be downloaded for free. They are lovely and calming to listen to at bedtime or anytime when things feel a bit too much. www.soundcloud.com/lauracannell/sets/poems-from-a-norfolk-farmhouse-read-by-mal-cannell
Headphone moments and handcream
As we all know the focus on your child during cancer treatment becomes like tunnel vision. I think it has to in order to get through, but 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. We often find an incredible strength and resilience kicks in but to the detriment of our own health and wellbeing. After talking to the psychologist at our hospital 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 one entire song by one of my favourite musicians 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 it a couple of times to check Henry was ok. I worked on building up the amount of uninterrupted time to one whole song, then two and just that brief moment felt restorative. Combined with that I found that keeping a tube of a favourite hand cream (Molten Brown – luxury!!) 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. Exercise –
For Henry’s Dad exercise became his physical and emotional support through trauma. He found it really important to get outside, see his friends at the running club and to feel like things were normal by keeping a good routine. Henry too benefitted from keeping physical as the Vincristine affected his knee joints so he was unable to walk for a short time, we knew how important it was to try to keep up his strength and stamina gently through walking and then when he was stronger and his Hickman line had been taken out lots of swimming and cycling. Hen was given a lightweight bike from Cyclists Fighting Cancer www.cyclistsfc.org.uk and it has really helped strengthen his joints and improve his stamina.
Art and Creativity
I am going to expand on this with my next blog but I strongly believe in the powerful therapeutic properties of creativity for everyone regardless of what artistic skill they think they may or may not have. I teach art classes to children and adults and emphasise to everyone that the end result really doesn’t matter. The process of making is the thing that should be fun, enjoyable and relaxing. Henry has always loved building Lego and loves drawing too. He has also enjoyed making clay or saltdough pinch pots or creatures, this has strengthened his hands and joints as an extra benefit. My sister made hundreds of colourful wool pompoms to help her through grief and trauma and ended up turning it into an art installation as part of a www.raveninghamsculpturetrail.com
Henry has always liked having his feet rubbed gently at bedtime. I was trying to think of ways to help him find deep relaxation as his body was on high alert so much of the time and so I took him to a reflexologist for a short session. I wasn’t sure how he would respond, particularly after experiencing so many horrible procedures lying on a hospital bed, but he absolutely loved it. When we left the therapy centre he said he felt like he was walking on a cloud! I felt that a weekly reflexology session was a good way of teaching his body how to fully relax again after the end of cancer treatment and that everything was ok. I have continued to give him a foot massage every evening at bedtime using a lavender foot balm which I find relaxing too.
Pets as Therapy
This may not be an easy solution but getting Kobi as a therapy dog for Henry was one of the best decisions we made. Kobi is a Jack Russell crossed with a Chihuahu and is the kindest little dog I’ve ever met. Just looking into his face and stroking him has helped Hen calm down and when we were in isolation in hospital talking to Henry’s Dad and seeing Kobi on facetime really helped make things feel ok. For the first few weeks it was challenging as I had to keep everything clean while we were toilet training but the positives outweighed that short amount of time and he has proved more than his weight in gold! We also got a fish tank as we enjoyed visiting the fish in hospital so much. I thought this could be a good home schooling project too but in the end the fish have definitely ended up being my therapy as I find them so relaxing to watch, I didn’t know I could love a tank full of fish so much!!
I really hope you find some of these ideas useful and please do forward my blog to anyone who you think might be struggling. I have used lots of these strategies to get Henry, Dave and I through some extremely hard times, we also tried lots that didn’t work for us. I think that when it comes to managing anxiety there unfortunately isn’t a magic wand for impatient people like me, but I have learnt that practising these coping strategies daily, even when you don’t feel like it, means that they are there to help weather the various storms that life throws at us all.
Take care and be kind to yourself xxx