The Clatterbridge Cancer Charity
“I’m determined to be here for my family”
Denise Bates, 53, from Birmingham, tell us how The Clatterbridge Cancer Charity has helped since her diagnosis of stage 4 liver cancer
Five years ago, Denise Bates was like many other working mums, juggling her job as a childminder alongside raising her two sons, David and Joe, with her husband, Chris. Fit and active, Denise, then 48, didn’t think much of it when she developed flu-like symptoms in July 2014, but when they went on for a number of weeks she went to see her GP. A blood test revealed nothing untoward but Denise continued to feel run-down and achey and began to have pain when she turned over in bed.
“It felt as though something was pressing against my ribs,” she says. “I went to A&E, where I had more blood taken, an X-ray and an ultrasound scan.
When they asked to repeat the blood test and do a CT and MRI scan, I sensed something was not right.” Shortly afterwards, Denise was told she had a 9cm x 11cm tumour in her liver’s left lobe – a primary liver tumour.
“It made no sense,” Denise recalls. “I didn’t have jaundice or a history of drink, drugs or cirrhosis. GP blood tests aren’t likely to find liver cancer as they don’t test for alpha-fetoprotein (AFP) tumour marker. So if I hadn’t gone to A&E, the cancer would have been undiagnosed for a lot longer.”
Two weeks later, Denise underwent an operation at Birmingham’s Queen Elizabeth Hospital, where they removed the whole of the left section of her liver with the huge tumour. Denise’s AFP dropped from 4,000 at diagnosis to 25 by January 2015 (a healthy AFP is around 10) and she felt much better.
But a routine CT scan six months later quickly progressed to an MRI scan and Denise
was told they had found ten tiny tumours in her liver.
“My friend and I absorbed the news over a cup of tea, then I had to get on – I had children to see to! But I knew that I was going to do all I could to live.”
She was referred to oncology, where she was given 6-12 months, re-referred to palliative care and advised to put her affairs in order.
Denise was given details of a procedure called transarterial chemoembolisation (TACE), which treats liver cancer by blocking and slowing the blood supply to the tissues or by blocking the blood to a tumour to kill the cancer cells. To qualify, she had more tests and scans, which revealed more tumours in her lungs and central lymph nodes. As the cancer had spread, she was told she no longer met the criteria for the trial.
“I surprised myself and Chris by challenging my consultant, who agreed to offer me the treatment, just not as part of the trial,” she says.
In July 2015, Denise underwent TACE, an operation in which while awake, the top of
her thigh was numbed, the artery cut and a catheter fed into the liver to administer the chemotherapy. At the same time, she was put on an inhibitor drug called sorafenib for a year to suppress the growth of the tumours. A short time later, it was decided that Denise would need the procedure again as some tumours remained.
“During the treatment, I lost my hair and a lot of weight, I had painful joints, an itchy rash on my hands and I was exhausted. I remember thinking that although I was alive, I wasn’t really living. I felt tired and breathless and in June 2016, a scan revealed the tumours in my lungs had started to grow again – the suppressant was no longer holding them at bay.”
By now, Denise had read about immunotherapy as a cancer treatment for skin cancer and decided to learn more. She says, “I discovered cancer tumours can hide inside your body as they have markers to disguise them – but the immunotherapy drugs unmask the markers so that the immune system can destroy them. Each time I saw my oncologist in Birmingham, I asked her if I could have immunotherapy, only to be told it wasn’t available for liver cancer. Eventually, she said they were getting the drug to trial but it would be against the placebo. It was a stage 3 trial; some patients would be given the drug and some the placebo. I knew I couldn’t take the risk of only getting the placebo so I declined. Weeks later, she told me about a drug-only stage 2 trial at The Clatterbridge Cancer Charity, near Liverpool. I jumped at the chance as I’m from Liverpool and I have family in the area. In July 2016, I met Professor Daniel Palmer at the Royal Liverpool Hospital for a consultation, he approved my treatment and the trial began in September 2016.”
Denise went to Clatterbridge Hospital to have the infusion once every three weeks for nearly two years; the trial ended in July 2018. After only three treatments (over nine weeks), a scan showed the tumours had shrunk. Denise and Chris had decided to play down the seriousness of her illness to their children because of their age and the fact that the diagnosis was terminal. Denise says, “We thought we’d wait and see what happened rather than worry them, which turned out to be the right decision. I started to feel better; my breathing was easier and my energy levels were up. During the trial, I had 31 infusions, and by the end of it, there was evidence of continued shrinkage, clear lungs, no nodules or masses and no new liver lesions.”
This October marks five years since Denise was first diagnosed with liver cancer.
“I’ve been treated by five medical teams in three different hospital trusts, but I have to say that my best patient experience was at Clatterbridge. It’s a special place and this radiates from the people within, from the volunteers who look after you with a cheery word and refreshments, the receptionists who greet you warmly and remember your name, to the wonderful nurses who welcome you with a hug and ensure you receive your treatment quickly. I’m still here against all the odds, and I’m proud to have been trial patient number one. I’ve been cantankerous, I’ve challenged the system and I’ll continue to. My family were my motivation – I wanted to be around for them for as long as possible. I hope the success I’ve had will make immunotherapy a possible future treatment for patients diagnosed with advanced liver cancer.”
The Clatterbridge Cancer Charity is the only dedicated cancer charity for patients and funds pioneering research into therapies and innovations to reach more people living with cancer
For the first time, the charity will be able to care for blood cancers and solid tumours as well as leading the way in clinical trials in the Cheshire and Merseyside region.
The charity supports The Clatterbridge Cancer Centre, offering pioneering chemotherapy, radiotherapy and proton therapy treamtments to 30,000 patients a year across ten sites
The Clatterbridge Cancer Charity
TOTAL RAISED: £66,990
➸ Funds raised in The Candis Big Give will go towards a bone marrow transplant suite at its hospital in Liverpool, to improve the care of those diagnosed with a blood cancer who require a bone marrow transplant.
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
to the Cancer and Polio Research Fund (1962 to 2002)
to the National Asthma Campaign (1990 to 2002)
to Marie Curie (1998 to 2012)
to Macmillan Cancer Support (1993 to 2013)
to Bliss, the special care baby charity (1990 to 2009)
to Liverpool University’s Cancer Tissue Bank Research Centre (1989 to 1993)
to the British Heart Foundation (2002 to 2008)
to local groups via the Charities Aid Foundation (CAF) (1990 to 2009)
to ICAN (1989)
to Tommy’s, the baby charity (2006 to 2009)
to Children’s Hospices UK (2008 to 2010)
to charities in The Candis Big Give
TOTAL TO DATE
In 2019, 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
ACTION FOR ME
What it does: Improves awareness of ME and helps those affected by it.Candis Big Give project: To fund support for those affected by ME.
Total raised: £126,857
CHAILEY HERITAGE FOUNDATION
What it does: Provides children with physical disabilities with education, care and transition services.
Candis Big Give project: To offer access to Eyegaze technology and purchase 20 devices.
Total raised: £18,150
What it does: Raises money to take ill or disabled children to Orlando, US.
Candis Big Give project: To send 20 children on a ten-day trip.
Total raised: £69,819
What it does: Helps people with learning disabilities to live independently.
Candis Big Give project:To encourage women at a risk of being overweight to improve their health and well-being.
Total raised: £16,875
OVER THE WALL
What it does: Provides free camps for children affected by illnesses.
Candis Big Give project: Has run three camps across the UK in 2019.
Total raised: £22,606
REACH LEARNING DISABILITY
What it does: Provides activities to people with learning disabilities.
Candis Big Give project: To enable adults with learning disabilities to reduce their risk of diabetes.
Total raised: £43,728
THE BRAIN TUMOUR CHARITY
What it does: Gives support to those affected by brain tumours.
Candis Big Give project: To launch a national early-diagnosis campaign.Location: National
Total raised: £68,979