Susan Kyle has spent her life coping with illness. Now facing terminal cancer, her first thoughts are still for others. Catherine Scott meets her.
WHEN Susan Kyle was diagnosed with terminal cancer she made her husband John promise to carry on her work with head injury charity Headway.
“He was upset and crying and I just said we didn’t have time for that and that he must promise to continue where I stop,” says Sue, 63.
Herself a survivor of brain injury after an operation to try to reduce the epilepsy she suffered since a child, Sue has been named as one of three finalists for Headway – the brain injury association – Volunteer of the Year Award, sponsored by Anthony Gold Solicitors.
“I was really shocked. I said ‘what for?’ I am just an ordinary girl. But they told me they thought I was inspirational.”
Sue developed epilepsy as a child and suffered seizures on a regular basis which have affected her for most of her life. The medication she took resulted in four miscarriages and she and her husband of 40 years, John, never having children.
In 2007, she underwent brain surgery to help reduce the seizures, but she was left living with the lasting effects of brain injury, including short term memory loss and fluctuating emotions.
Sue has also suffered with asthma since birth and later developed chronic obstructive pulmonary disease (COPD), the name for a group of lung conditions that cause breathing difficulties.
John, 68, now cares for her, helping her to carry out all of her fundraising and attend sessions at Headway Hull and East Riding.
Sue was recently diagnosed with terminal lung and liver cancer and told she had less than a year to live. She is currently receiving immunotherapy to try to extend her life.
“When they told me the cancer was incurable, I cried, knowing I couldn’t help Headway Hull and East Riding anymore,” says Sue.
“John cried a lot but in the end I lost my rag and said ‘I want to go out laughing and joking and there’s nothing we can do!
“I’ve told him what would really make me happy was for him to carry on fundraising for Headway when I’m gone, or else I’ll haunt him. I also think it will give him something to focus on when I am gone.
“I am also teaching him all the things to do around the house – like using the washing machine.”
The couple, from Bilton Grange, Hull, were just 15 when they met, and they married at 19.
Having benefited from the support of Headway Hull and East Riding, Susan and John are devoted to spreading the word about the charity and the support available.
Sue has raised thousands of pounds for the charity, by obtaining raffle prizes from shops and businesses across Hull and the surrounding areas.
“They all tell me I can come back and ask for more prizes any time,” she said. “I always go back to tell them how much we raised and to say thank you, and give them a thank-you poster. I have made them promise that they will give prizes to John after I am gone.
“I don’t know where John and I would be without the support of Headway Hull and East Riding, it’s been invaluable.
“We didn’t find out about them until two years after my injury, so now I do everything I can to make sure other people who have brain injuries can find the support they need as soon as possible.”
But it isn’t just the fund-raising while battling her own problems, it is her determination to personally help others who have suffered brain injury.
“I help a group of young women on Facebook who have all had brain aneurysms.
“It is heartbreaking, they are all so young and with their whole lives ahead of them. I think it just helps them to talk and I am happy to listen and offer any help and support that I can.
“I had to learn to do everything again after my brain operation and so I know some of the things they are going through,” says Sue.
“I also visit some nursing homes and also victims of car crashes and brain tumours. I don’t think that I am in a bad way compared to a lot of them.
Lesley Saunders, secretary of Headway Hull and East Riding, said: “Sue is a total inspiration to all of us.
“We are devastated at the recent turn of events but we are trying to be strong to support both Sue and John.
“We suggested she starts to take it a bit slower but she says supporting Headway Hull and East Riding is what gets her out of bed in the morning.
“Her friendly personality and positive attitude is infectious, she makes all new members feel welcome and she always makes us laugh.
“She has raised an incredible amount of money for us and we could not run our services as we do today without her. Every charity needs a Sue and we want her to know how much we all appreciate her work and how much we love her.”
“When Lesley told me the news I was in total shock,” says Sue.
“I just do this because I love it and I want to help other people. But I am really looking forward to going to London, I haven’t been for years. I never wear a dress but I have bought a new one for the occasion.
“I don’t think I will win but just to be nominated is amazing.
“But the main thing is that I just want to make sure that everyone who might benefit from Headway knows it is there to help them.”
Each year, the Headway Annual Awards celebrate the exceptional efforts of survivors of brain injury and their carers.
Sue will find out whether she will win the Volunteer of the Year Award, sponsored by Anthony Gold Solicitors, at a glittering ceremony at The Dorchester Hotel, London, on Friday, December 7.
Brain injury can challenge every aspect of your life – walking, talking, thinking and feeling – and the losses can be severe and permanent.
It can mean losing both the life you once lived and the person you once were.
Headway is the UK-wide charity that works to improve life after brain injury.
Through its network of more than 125 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields.
For more information visit www.headway.org.uk or call freephone helpline 0808 800 2244