Posted on Friday 7 June 2019
Lucy’s story – Music to my ears
Lucy was diagnosed with Hodgkin lymphoma and started chemotherapy just a few days before her 16th birthday. Her mum Claire shared her story with us.
“Before Lucy’s cancer diagnosis, she’d never had a day off school. She was 15 and it was the week before the Easter holidays. She had a chest infection and then felt an aching feeling in her neck, which initially I thought was because she had laid on it funny. But Lucy struggled on because she didn’t want to lose her school record. Two days later a lump came up on her neck. I said ‘you don’t mess around with lumps!’ so I called the doctors who said they were closing in 25 minutes. I refused to wait and I took Lucy to the out-of-hours doctor, who then said that I should take her to our GP the following day. The GP asked if Lucy had any other illnesses, and I explained about the chesty cough. The GP said that he could justify an urgent chest x-ray at the hospital and for a blood test to be taken.
Lucy hates needles, but the phlebotomist at our surgery had a free slot and so she had them done within 15 minutes. After school I took Lucy to the hospital for the chest x-ray. The GP telephoned our home address the next day and spoke to my husband; we were told that Lucy needed to go back to the hospital for a scan. My husband and I were called in first, whilst Lucy waited with her nan. We were told that they thought Lucy had Hodgkin lymphoma.”
When you’re told your child has cancer, your world falls apart. You automatically consider the possibility of losing your child, what they are going to have to go through and how it’s going to impact their lives, our lives and everybody around us. It was a huge shock. You think life will go on hold but it doesn’t, you have to cope with what’s to come."
“Justin and I took it in turns to be with Lucy. We have a younger daughter, Kali and she also needed support and attention. Music has always been a big part of our lives as a family. The girls have been brought up around music and I took Lucy to her first gig at 14 to see Jamie T. Whilst she was having treatment, Lucy was able to go into her own world when she was listening to music. She could sit and enjoy it; certain lyrics really meant a lot to her and helped her get through the treatment journey. We’d had gigs lined up before Lucy’s diagnosis and treatment, and she was determined to go.
On the first day of Lucy’s chemo, we went down to a clothes shop to give her a treat. The shop is owned by the lead singer of one of Lucy’s favourite bands ‘Bring me the Horizon’. Lucy had a cannula and her arm was bandaged up. The shop assistant engaged with Lucy and asked about her bandage, so we explained about it being her first day of chemotherapy. The assistant went out the back and brought through a lady who asked if she would like the lead singer’s autograph. Lucy asked if that would be okay, the lady promptly responded with a reassuring smile and said, ‘I’m absolutely sure it will be okay, as I’m his mum!’ Lucy received a limited edition signed print and a personal message for her 16th birthday, which was amazing.”
“Lucy has had two CLIC Sargent Social Workers. Anne was there during treatment and helped organise a CLIC Sargent grant, Home from Home accommodation and some brilliant treats to boost Lucy. And Glyn has been great; when he came on board he took the time to really get to know Lucy and provide on-going support and encouraged her to be part of the focus group that helped shape the first CLIC Sargent EVE Awards. Glyn has seen Lucy in both her home and school environment, which is really important. They have a real rapport, and he is fab with teens and young adults. The journey would be much harder without CLIC Sargent and the help that they have provided to us, especially Paul’s House and Glyn, as well as the signposting to other charities who help make a big difference.
At the time of her treatment Lucy was sitting her GCSEs, just to add to her pressure! Lucy was told that she could defer a year but she was determined to try her best and she was adamant that she did not want to re-sit the year. Lucy even sat two of her exams in hospital. This did however give Lucy some kind of focus and allowed her to go into sixth form with her friends. It was stressful, as everything has to be organised with the school, hospital and exam boards.
Thankfully, the treatment did work, but it wasn’t without side effects; Lucy had heart issues. I rushed her down to Southend hospital because her heart was racing and when she was monitored, it registered 227 beats per minute, so she was straight into resuscitation. Lucy was placed under the care of a heart specialist at UCLH, as well as her cancer treatment. Lucy suffered with hair loss, fatigue and weight gain because of the steroids. She couldn’t take tablets initially and so they crushed up the first lot of steroids, but they were so disgusting that she immediately learnt to take tablets, and was taking 27 a day at one point.
I am so proud of Lucy for her attitude throughout her treatment and her quiet determination. She did so well in her GCSEs that I had a little cry when she got her results and it was an “oh mum” moment from her. But Lucy’s teachers told her that I was definitely allowed my tears of joy!”
To find out more about how we help young people cope with the impact of cancer, please visit our what we do section. If you need support yourself please contact us using our online enquiry form or call 0300 330 0803.