A Fleetwood family has supported plans calling on the Government to create a young cancer patient travel fund following the death of 23-year-old Nicola Hill.
Nicola was diagnosed at 21 with rhabdomyosarcoma, a rare form of cancer, and had to go to the Wirral for treatment on a regular basis
Her dad, Martin, 50, explained what treatment she went through, before she passed away in June.
He said: “Nicola was diagnosed nearly two years ago and we had been in and out of Clatterbridge Hospital in Merseyside as it was the only place that could deal with Nicola’s rare cancer.
“It was called rhabdomyosarcoma and it started in her foot and over a period of time it worked its way into her lymph nodes and then attack all the different organs.
“She was diagnosed in October 2016 and started her chemotherapy on November 29 and over the 18 month period she was being treated she probably had 350 hours of chemotherapy and then about 60 to 70 days of radiotherapy.
“The cancer spread and the chemotherapy kills the cancer blood cells. They got the pancreas under control with the chemo for a short period and then it started coming back in her foot and they gave her 24 days of radiotherapy.
“Then after she finished that the cancer started coming back again so she had shorter periods of chemotherapy and the pancreas started flaring up again so she had to have radiotherapy on the pancreas and it spread to her spinal cord.”
The trip to the hospital was a regular occurrence for Martin and he said: “It was a 150-mile , three hour round trip and on occasions, I was doing it literally five times a week.
“At one stage when she was having chemotherapy and we had to go 22 days on the trot Monday to Friday.”
Research by cancer charity CLIC Sargent, who helped Nicola and her family during her battle, shows that families spend on average an extra £180 a month on travel costs, taking their child to and from treatment. The average trip a family makes to get to hospital is 60 miles, and takes an hour each way.
The average cost of an ambulance call out is £255 to take patients to hospital – which is offered free to patients like Nicola – but no money is provided to families who want to make their own way there, even though it may be cheaper.
The charity has been calling on the government to create a ‘Young Cancer Patient Travel Fund’ and recently handed over a petition with over 30,000 signatures to the Department of Health calling for this and the Labour Party recently announced their support for such a policy.
Nicola’s stepmother, Janine, 50, said how sometimes people can forget about the financial impact of having cancer.
She said: “What people maybe don’t appreciate is that you are already dealing with your child who is dying of cancer and that in itself, your whole world falls apart, and then your are dealing with financial stress on top of it. It isn’t just a child being diagnosed with cancer, it’s everything that comes with it such as the daily travelling.”
Martin, who is a self-employed valeter, added: “One of the main things CLIC Sargent did was assign a support worker called Karen for Nicola who was there if you had any questions or queries and support her along the way.
“A key thing was when Nicola was well, Karen contacted charities who would provide things like a weekend away in the Lake District with her boyfriend Ste.”
Nicola was a care worker at Blackpool Care Watch before she was diagnosed.
Martin said: “She couldn’t work because of the cancer and she had to go onto benefits. We applied for PIP as she was entitled to that and Karen helped us fill the relevant forms out.
“We sent them off and Nicola was very very poorly and we got a letter from the benefits agency who said they would have to send out someone to assess Nicola before any payments could be approved. It’s things like that which would bring you down.
“I rang up CLIC Sargent and within 20 minutes we had a message to say it was dealt with and it was that sort of thing the charity really helped us with.”
Janine added: “It’s those sorts of silly things, that can add stress to your day-to-day life on top of what you are coping with and that is what can break you if you don’t have the sort of support we did from CLIC Sargent.”
A spokesman for CLIC Sargent said: “From all of us at CLIC Sargent, we want to say a big thank you to Martin, Janine and their family.
“We’re grateful we were able to support Nicola and her family when they needed us, and it means so much to us that they’ve chosen to support CLIC Sargent.
“By raising awareness about our work and fundraising for us in Nicola’s memory, they really will help us make a huge difference to other families in the region who have children with cancer.”
Help the Hill family to donate
A JustGiving page has been set up by Martin and Janine to raise £1,000 for CLIC Sargent.
If you would like to donate to the fundraiser go to: www.justgiving.com/fundraising/martin-hill18
Rhabdomyosarcoma (RMS) is a type of soft tissue sarcoma that grows in active muscles of the body.
The most common places for rhabdomyosarcoma are the head, neck, bladder, vagina, arms, legs and trunk of the body.
Soft tissue sarcomas are rare with around only 3,300 new cases being diagnosed each year in the UK.
The exact causes of rhabdomyosarcomas are still unknown.