Sheffield mum wants to help others with book about her family’s cancer and disability journey
A Sheffield mum had almost finished writing a book about her family’s journey through disability and cancer when a routine blood test revealed her teenage daughter had cancer once again.
Janet Chelliah is mum to 19-year-old Kirsty, who is currently battling leukemia for the second time.
After learning about Kirsty’s relapse, Janet was unsure whether she should proceed with the book, but she was encouraged by the fact it could help and inspire others who may be going through something similar.
Janet said: “After a routine blood test a week before Kirsty’s birthday, we found out she had a leukemia relapse.
“She had her birthday at home and the day after, she started treatment.
“It was a bit of a shock. The diagnosis was scary and lonely.”
Kirsty had completed treatment for leukemia in January 2019 - just 19 months later she was back in hospital.
Janet said: “She had just one year of having her life back.”
Kirsty was shielding up until the end of July, which meant that the rest of the family - 13-year-old sister Melissa and parents Janet and Neil - were shielding too.
“We made the most of it and did lots of family things,” Janet added.
Kirsty and Melissa, who have always enjoyed dancing and acting, made their own TikTok videos and raised money for charity.
Kirsty was looking forward to starting college in September and seeing her friends, but just as things were becoming a little more ‘normal’, she was admitted to hospital.
With Covid-19 restrictions in place, it has been even more difficult for the family this time round.
Due to Kirsty having special needs, she was able to have her parents visit her in hospital but she was not able to leave the room or see her sister or friends, which took its toll on her mental health and she often woke up crying in the night.
Janet explained: “Her mental health has been affected more. I’ve learnt that teenagers are affected in different ways, especially those going through cancer.”
With their daughters in different places, the parents decided to take it in turns to stay with both girls.
As a result of this, Janet and Neil hardly saw each other.
Janet explained: “We weren’t able to communicate how we felt.
“You’re having to contain your emotions because you can’t go out of the room to cry.”
She reminded herself that she ‘needed to be strong’, as there was also the impact on Melissa to consider.
Despite Melissa and other family members and friends not able to visit Kirsty in hospital, they did all they could to show their support, which Janet believes ‘really made a difference’.
They regularly made contact via FaceTime and waved from the hospital car park with ‘We love Kirsty’ posters.
Janet explained how they were not able to see Kirsty but Kirsty looked forward to seeing them.
Although she has been able to go home now, there will still be regular visits to hospital for Kirsty.
Janet said: “Her mobility has declined. She is struggling to talk, her mood is down. She seems lost and is emotional.”
Janet started writing about the family’s experiences when Kirsty first became ill, using it as a way to reflect on events.
After some persuasion that her own experiences could help others, she decided to go ahead with the book.
She believes it will be worth it ‘even if it benefits one person’ but she also wants to use it to remind Kirsty that ‘she can get through this again’.
Janet said: “I want to publish this book for Kirsty, and for the families who have been affected by cancer.
“I also hope that Kirsty’s determination and strength will inspire those who might be struggling with other difficulties in their life, apart from cancer.”
Janet hopes that it will help professionals too - being a GP herself, she told how some may lack that level of understanding and empathy.
She said: “I am able to relate, empathise and give practical suggestions based on real experiences.”
Janet has sought support from Facebook groups and charities but she believes there is no right or wrong way in coping with such a situation and the book shows the family’s ‘way of coping’.
CLIC Sargent - a cancer charity for young people - and Down’s Syndrome Association, are two charities that the family has benefitted from over the years.
Kirsty has regular visits from a worker at CLIC Sargent, who has tried to bring some of the old Kirsty back and take her mind off things.
She said: “Charities are doing a lot. It is vital that we continue to support them.”
The book will be ‘a big achievement’ for Janet but it is also something Kirsty and Melissa will be able to look back on and the journey the family has been on.
Janet added: “It is a book to celebrate Kirsty and her determined nature and strength but it is also for Melissa.”
She told how Kirsty is scared and sad, but despite all this, ‘she is still able to find a smile and tell us that she loves us everyday’ and ‘she never forgets to say please and thank you to the hospital staff’.
Janet would also like to offer her own thanks to the hospital staff who have looked after Kirsty.
She said: “The staff have been brilliant and accommodating. They have really done their best in catering to her needs.”
Our Family’s Journey Through Disability and Cancer will be available on Amazon and Ingram Spark in October - monies from sales going to CLIC Sargent and Down’s Syndrome Association.