Losing her father suddenly to cancer and amidst a cloak of silence had a profound effect on Caroline Leek, inspiring her to help other families affected by the disease
Caroline Leek is the founder and director of Fruit Fly Collective, a multi award winning not for profit organisation that focuses on improving the public’s understanding of cancer as well as supporting individuals and their families affected by cancer.
One of the reasons why it so hard to tell your child that you have cancer is the primal feeling of wanting to protect them from any harm, worry or concern.
The trouble is that children easily pick up on things, and have amazing imaginations. Even if you think you’re hiding your grief, pain, and emotions supremely well – they know something is up. Not telling them, or giving them partial or incorrect information can be more worrying than the truth.
Results show that children who have a parent or carer diagnosed with cancer are at high risk of developing negative psychosocial problems, such as anxiety, sadness, anger, or irrational feelings of guilt. Parents also report the difficulty of explaining cancer to their children in an age-appropriate way, and find it problematic to use words and terms that their children will understand. This poor communication is known to deepen the negative psychosocial feelings a child experiences.
A week before my 13th birthday, my father died from cancer. There were no conversations about his illness or death, and my mum and I never really spoke about him again. Things started to crumble in my 30s and that’s when I faced up to the massive hidden grief I had been carrying.
After researching the effects of parental cancer on children, and the lack of provisions available to children who had a parent diagnosed with cancer, I started the not for profit organisation Fruit FlyCollective, and with funding from, amongst others, Arts Council England, Comic Relief and The Big Lottery, developed The Cancer Clouds Kits - toolkits for children whose parents have cancer.
The kits were developed in collaboration with healthcare professionals, artists, patients and their families. Inside each toolkit there are multiple tools that are age-appropriate, and either educational (helping to increase the understanding of cancer and its treatments), practical (supporting changes in home life to help manage children’s expectations), or tools that encourage communication about the emotional changes the family may face. They feature models, toys, question boxes, and timelines and promote open and organic discussion within the family or with relevant professionals.
There are three different age-appropriate kits. The Hedgehog Cloud Kits are for 3-5 year olds; Tiger Cloud Kits are for 6-11 year olds, and the Cancer Cloud Kits are for 12+ year olds.
Since they were created 5 years ago they have been bought by many NHS Trusts, cancer charities and schools across the UK, and have won awards from the British Medical Association for childreninformation and innovation.
Our latest project is Pip’s Kit. This toolkit supports children aged 5-10 who has a parent with incurable cancer, or who is in end of life care. The tools focus on recognising emotions, ways of coping,memory making as well as understanding dying, and grief.
The Cancer Cloud Kits and Pip’s Kit can be found at: www.fruitflycollective.com
“Before I didn't feel I had much expertise to offer patients. Now having the Fruit Fly resources with me enables me to initiate conversations about talking to children about cancer.” Clinical Nurse Specialist at Guy’s and St Thomas’ NHS Trust
“Going through the tools inside Fruit Fly Collective’s kits helps me understand the support that patients want and gives me a greater understanding of my patients needs around telling their children abouttheir diagnosis.” Clinical Nurse Specialist at Lewisham & Greenwich NHS Trust
“The kit provided a springboard to start a terrifying conversation and provided focus on key messages. Can't imagine how we'd have done this without the kit” Patient & parent to 6 & 10 yr old
“The children now feel comfortable talking about cancer and understand why Mummy maybe feeling tired at certain times” Patient & parent to 4, 8 & 12 yr
A mother diagnosed with breast cancer, who has a seven year old daughter: ‘After the bombshell of diagnosis, I was not fit enough to do the research needed to best help my daughter understand what was happening to me – and there were no resources offered to us. One professional simply said: ‘ She’ll be OK – girls deal with it well. She’ll just grow up a little faster.’ But I know that’s simply not thecase. As a single parent, I had to make sure she was not hiding her fear, sadness or anger. My daughter loved the Cloud Kit – she fell upon it like it was a treasure box. It enables us to have theconversations we need to at each stage of my treatment.’
Consultant Clinical Psychologist at Maggie’s: ‘I had a 14 year old who was self-harming due to the stress of her step-father’s cancer treatment. The Cloud Kit provided a beautiful way to open a much-needed conversation between the mother and child, facilitated by me.’
Mother of an eleven year old daughter and a fourteen year old son: ‘I used the sentences in the parent’s book to help me tell the children I had cancer. It really helped them and made me feel stronger. We put the feelings tree up in the bedroom and I left them to put on the leaves. I was amazed that they only put positive feelings on. This made me feel a lot happier.‘
Former Children’s Commissioner for England, Sir Al Aynsley-Green: ‘This outstanding 'Tiger Cloud Kit' is designed to help children cope with their parent's cancer diagnosis by increasing theirunderstanding of what cancer is, how it can be treated, and how family life will change. It is also an important resource for professional staff to encourage them to always consider how the diagnosis willaffect the children in the family. I commend this kit unreservedly.’
British Medical Association Patient Information Awards Director: ‘The list of specialist contributors and the consultation methodology are clearly visible in the high quality kit. The booklets alone wouldstand as exceptional for the quality of production and clarity.’
Example of tools:
TRUFFLES: Young children really enjoy ‘looking after’ Truffles the Hedgehog. We talk about Truffle’s prickly feelings and supply an essential kit (bandage, plaster, syringe and blanket!).
THE FEELING TREE: Finding ways to communicate feelings. This is our Feelings Tree which comes with 90 different emotions. Children (and adults) can stick on leaves to demonstrate how they are feeling.Parents have said that it helps them to understand what is going on inside their child’s head. See photo earlier in blog.
COMIC BOOK: A story of a boy’s thoughts and fears when he attends chemotherapy with his mum.
DOLLS HOUSE WITH DOLLY PEGS: There is a clinical room in the doll’s house allowing young children to role play in a hospital setting. See headline photo for this blog.
CANCER QUESTION PLAYING CARDS: Each card has a different question and answer on them. Cards are colour coded to indicate questions that may be easier, or indeed more difficult to talk about.
DAILY TIMETABLE CALENDAR: Managing young children’s daily expectations makes them feel secureand involved in family life.
PEOPLE PAPERCHAIN: A chain of figures containing the names and roles of all the different types of healthcare professionals children are likely to meet or hear about.
Also check out the Wigwam Blog by Caroline on a totally inspiring arts and cancer project at: https://www.wigwam.org.uk/post/unheard-cancer-voices-a-beautiful-magazine
More information at: