The Brain Tumour Charity
Sharon Brunton, 53, tells us why The Brain Tumour Charity’s research into new treatments is so important to families such as hers
Finding out my son, Chad, now 18, had a brain tumour was one of the worst moments of my life. I had to leave the room as I just couldn’t believe what I was hearing. My young nephew had tragically died 18 months earlier from a rare brain tumour and my daughter, Tilly, had also been diagnosed with one five years before. I couldn’t stop thinking how I’d have to break the news to my parents that another grandchild had a brain tumour, and wondered how this could be happening to our family again.
My family’s battle with brain cancer began in October 2007, when Tilly, now 30, started complaining of regular headaches and a sore neck. I advised her to have an eye test and see her GP, which she did, but neither picked up on anything serious. Then in December, we went to pick Tilly up from university for Christmas and I knew something wasn’t right. She had lost nearly two stone and looked drawn and pale.
Over the next few weeks, Tilly was vomiting fairly often and she would be unable to
get out of bed on some days as her headaches were so excruciating. We were back and forth to the GP and hospital but were unable to get a diagnosis, although she couldn’t walk on her own or lift her head up by this point.
In February, while waiting for an appointment to come through for an MRI scan at the hospital, Tilly started to lose sensation down her arms. We took her to A&E, where they ordered a scan which revealed that she had a huge tumour mass and cyst in her brain. Our world just fell apart.
Tilly was immediately transferred to the Royal Free Hospital in London, where she was put on steroids to reduce the swelling in her brain. She was then given a ten-hour biopsy, which showed she had a grade 2 pilocytic astrocytoma – a slow-growing tumour on
her brainstem. Because of where it was, they were unable to remove it fully as it would be too dangerous, so she was sent home after five days to recover. However, 18 months later, she needed a second operation to reduce the tumour further as an MRI scan showed it had grown too big, too quickly.
“I couldn’t stop thinking how I’d have to tell my parents that another grandchild had a brain tumour, and wondered how this could be happening to my family again”
Thankfully, Tilly recovered well and returned to university just weeks after the surgery
and seemed to pick up where she had left off – eventually qualifying as a nurse and getting a job working on a cystic fibrosis unit at a hospital. Life seemed to go back more or less to normal.
However, at the end of 2011, to everyone’s shock my nephew was also diagnosed with a brain tumour. He was treated for it but tragically died a year later, at only nine years old.
Less than a year later, Chad, then 11, started saying he felt sick all the time. He has always been a fussy eater so at first we thought it was just his body’s way of saying it needed more nutrients. We tried to sort out his eating and he seemed to pick up for
a little while. However, by April, he had started getting headaches that left him in extreme pain.
We took him to A&E, where I explained what had happened with Tilly and my concerns for Chad. He was given an MRI scan, which showed that he also had a huge mass on his brain. We were blue-lighted to Addenbrooke’s Hospital, where we discovered on Chad’s 12th birthday that he had a grade 4 medulloblastoma; he was operated on more or less at once.
Although the surgery was successful in removing the tumour, Chad then developed posterior fossa syndrome, which left him unable to talk or walk. He dribbled and made a horrible screaming noise constantly for eight weeks, which was so hard to bear. There is no treatment for the syndrome, but some of the symptoms went away after eight weeks, though Chad then had to begin the long, hard task of learning to walk and talk again.
Chad was also given a 30-day daily course of radiotherapy, which was then followed
by a year of chemotherapy. It took a massive toll on his body. He was an inpatient for five months as he was so ill throughout his treatment. He developed typhlitis (an inflammation of part of the large intestine), which ulcerated his bowel, and had to have a gastrostomy put into his tummy to feed him because he had lost so much weight. He also lost his high-pitch hearing, developed problems with his thyroid, and developed memory and processing problems – all of which still affect him today. Chad also began displaying many of the characteristics that are common in someone with autism. He has developed very high iron levels as they think he is storing it in his liver, and is still sick every day, six years after treatment.
Although Chad’s cancer is now in remission, he is still living with the horrendous side effects of his treatment. He is now at college, but he requires a lot of care and support and is more like an 11-year-old than an 18-year-old. This is why I am so supportive of the research that The Brain Tumour Charity funds into new treatments for brain tumours. I have seen first-hand the consequences of the harsh treatments currently available and I need to believe that there is a better way to treat our children – we just haven’t found it yet.
Even though Tilly is doing so well – she copes really well with the weakness down her left side, which is the only current symptom of her illness/treatment – she is living with the knowledge that she was only ever given five years to live. Until they can find a cure for her type of tumour, it’s like she’s living with a time bomb in her head. Eventually, she will need to have another operation to try to shrink the tumour on her brainstem, and is likely to need a shunt put in to deal with the drainage problem she has, so we are always seeking new treatments.
Things are changing all the time but more needs to be done for brain tumour survivors, and treatments need to be much kinder. Children shouldn’t be left with the life-changing side effects hanging over their heads after everything they’ve been through, and it’s only by funding this vital research that things will ever change.
TOTAL RAISED: £100,518
The Brain Tumour Charity funds pioneering research, raises awareness
and provides support for estimated 102,000 children and adults in the UK currently living with a brain tumour and the 32 people each day diagnosed with one. The money raised in the Candis Big Give will be invested into research into brain tumours, the biggest cancer killer of children and adults under 40. The aim is to find and promote new research ideas and types of research to revolutionise the understanding of brain tumours, make treatments available more quickly and improve clinical outcomes.
Donations to date
We never forget it’s YOUR subscriptions that enable Candis Club to give huge amounts to charities. Our running total shows how much
£31,620,386 to the Cancer and Polio Research Fund (1962 to 2002)
£4,429,597 to the National Asthma Campaign (1990 to 2002)
£5,500,979 to Marie Curie (1998 to 2012)
£3,304,767 to Macmillan Cancer Support (1993 to 2013)
£3,309,982 to Bliss, the special care baby charity (1990 to 2009)
£2,190,977 to Liverpool University’s Cancer Tissue Bank Research Centre (1989 to 1993)
£1,549,998 to the British Heart Foundation (2002 to 2008)
£914,053 to local groups via the Charities Aid Foundation (CAF) (1990 to 2009)
£220,000 to ICAN (1989)
£246,876 to Tommy’s, the baby charity (2006 to 2009)
£303,774 to Children’s Hospices UK (2008 to 2010)
£2,500,000 to charities in The Candis Big Give
TOTAL TO DATE
In 2020, Candis Club will donate at least £250,000 from members’ magazine subscription revenue to health charities taking part in The Candis Big Give. Any additional funds will go to charities at the discretion of the General Committee of Candis Club
Make a difference
We’ve highlighted some of the charities taking part in The Candis Big Give. For a full list, and details of the life-changing projects they’re raising money for, visit candis.co.uk/charity
What it does: Funds vital research into ataxia and its treatment.
Candis Big Give project: To improve access to diagnosis and treatment for sufferers in the UK.
Fundraising target: £78,472
BREAST CANCER HAVEN
What it does: Offers free advice to those affected by breast cancer.
Candis Big Give project: To provide personalised support programmes.
Fundraising target: £73,766
What it does: Supports those with epidermolysis bullosa (EB).
Candis Big Give project: To fund enhanced care for children at Great Ormond Street Hospital.
Fundraising target: £37,042
What it does:
Helps people with inherited progressive sight loss.
Candis Big Give project: To fund research into inherited retinal conditions.
Fundraising target: £35,017
What it does: Provides memorable Special Days for seriously ill adults.
Candis Big Give project: To offer
a positive focus away from treatment.
Fundraising target: £45,224
What it does: Saves babies’ lives during pregnancy and birth.
Candis Big Give project: To fund
a care plan for recurrent miscarriage.
Fundraising target: £113,528
What it does: Raises awareness and funds research into Parkinson’s.
Candis Big Give project: Money will help to run the charity’s helpline.
Fundraising target: £50,823