Community
Young Cancer survivor gets post-lockdown lift with the Ellen MacArthur Cancer Trust
A 26-YAER-OLD from Haverfordwest, who is living through and beyond cancer, admits “It’s given me a silver lining!” after enjoying five days of sailing from the Isle of Wight with the Ellen MacArthur Cancer Trust last week (13-16 September).
Callan Glass was 20 when he was diagnosed with acute lymphoblastic leukaemia. He was among 9 young people from across the UK that spent last week sailing from the Isle of Wight, as the Trust gets back to bringing young people together, having been off the water in 2020.
The Ellen MacArthur Cancer Trust inspires young people aged 8-24 to believe in a brighter future living through and beyond cancer. For many young people, picking up where they left off before their diagnosis isn’t possible. So, when treatment ends, the Trust’s work begins.
The isolation, loneliness and anxiety experienced by young people with cancer has been massively amplified by COVID and lockdown. That is why they need the Trust more than ever right now.
Callan first sailed with the Trust in 2016. He explains: “The last years been really tough for everyone. Being back at the Trust has been better than I thought it would be, like being able to meet new faces and familiar faces and have that place to de-stress and not worry about the rest of life and just sail on by.”
Through the Trust’s sailing and outdoor activities, young people meet others who have had similar experiences – often for the first time, rediscover independence away from home, experience an increased sense of purpose and self-worth, and begin to realise what they are capable of again. Most importantly they stop feeling like the ‘only one’.
The young people are inspired to believe in a brighter future as they feel valued, accepted, optimistic and independent. They can start to re-establish their place in the world by getting back into education or employment and reconnecting with their friends and families.
Callan adds: “I was diagnosed when I was 20, I was living in London and I was working at the time, so it completely changed my life direction. It’s been a roller-coaster, but I always feel like I’m so privileged because with these charities like the Ellen MacArthur Cancer Trust, it’s turned something really negative and given me a silver lining, so I really appreciate it.”
Dame Ellen MacArthur, the Trust’s Founder and Patron, concludes: “We hear it a lot, that for many young people what happens after treatment can be as difficult as, if not even more so, than the treatment itself. Receiving funding from People’s Postcode Lottery has been a gamechanger in enabling us to reach and have a positive impact on the lives of many hundreds of these young people over the past decade.
“We know the impact the Trust has on the mental wellbeing of young people living through and beyond cancer. Thanks to players of People’s Postcode Lottery, more and more will get the support they need to believe in a brighter future.”
The Ellen MacArthur Cancer Trust was founded by the record-breaking round-the-world yachtswoman in 2003. It is there for anyone who is struggling or could simply do with a bit of support, however long off treatment they are. Visit ellenmacarthurcancertrust.org or follow @emctrust on social media.
Community
Pembrokeshire second homes tax to fund vital local projects
NEARLY £0.6m in grants has been awarded to 10 Pembrokeshire groups using money from the second homes council tax premium after it received the backing of senior councillors today, November 4.
At the November 4 meeting of the county council’s Cabinet, members considered ten applications for funding through the Enhancing Pembrokeshire Large Grant Applications.
In order to be considered for funding, applications are points-based, with one, Haverfordwest Tennis Club just missing out on the 20 points criteria by one point.
The Enhancing Pembrokeshire Grant, launched in 2018 supports local communities; funded via a portion of the charges raised through the second homes premium.
To date, Pembrokeshire County Council has awarded £4,482,374 to 272 projects attracting match funding of £4,948,984, investing a total of £9,431,358 into Pembrokeshire communities.
In July 2023, Cabinet agreed an officer led grant panel determine the outcome of applications below £15,000; those up to £100,000 coming to Cabinet.
The internal grant panel considered 10 applications, one criticised for arriving slightly late, of which nine met the grant criteria and required scoring threshold of 20 or above.
A report for members said there was an underspend last year of £274,326 rolled into this financial year’s allocation of £400,000; the nine projects for a total value of £766,434 requesting grant support of £560,032.31.
Fishguard and Goodwick Young Persons Project requested £77,106 for a £96,383 project to help young people aged 11-25 to raise self-esteem and improve their employability skills through activities/lifelong learning.
Arts Care Gofal Care Development requested £56,695 for a £70,868 project for an inclusive dance and performance programme for adults and children with learning disabilities.
Garth Youth and Community Project ‘You Matter’ wanted £73,069.60 for a £91,337 project enhancing peoples overall mental and physical wellbeing through sporting/games/food activities.
Transport group PACTO – whose application had arrived slightly late – wanted £39,991 for a £50,535 project to meet Welsh Government zero emission transport targets by 2035 by purchasing and managing a ‘Green Bus’ for Bloomfield Community Centre, Narberth; the centrepiece of a net-zero project in Pembrokeshire, promoting sustainable, accessible transport for those with mobility challenges and those with other barriers to conventional transport.
Acts West Wales Cilrath Acre sought £46,992 of £62,092 for a community growing project, which offers volunteer and learning opportunities, giving people the chance to grow food, learn new skills and meet others.
Fishguard Sea Cadets sought £50,000 of £70,000 to secure the land that adjoins its unit to provide safer, more organised outdoor training, and a secure storage area.
Pembroke Dock Cricket Club asked for £58,400 of £73,000 for new changing rooms, the current becoming beyond repair, and lacking adequate inclusive access.
PLANED Pembrokeshire Local Food Partnership (PLFP), a partnership between PLANED, PAVS and Pembrokeshire County Council that brings together producers/growers, organisations and communities, creating an active, sustainable food system for Pembrokeshire sought £57,779.17 for a £72,224 project.
The largest amount was from Kilgetty Begelly Community Council, asking £100,000 towards a £179,995 scheme to create a new play park to enhance the village and increase accessibility to the wider communities including the Kingsmoor Common Gypsy Traveller site.
One proposal, which failed the criteria by just one point, was Haverfordwest Tennis Club, seeking £31,208 in funding for a £39,207.72 scheme for floodlights and wheelchair access.
That proposal is currently subject to an ongoing planning application and the scheme would only benefit club members, the report says.
Following a plea by Deputy Leader Cllr Paul Miller, members agreed to include the tennis club application, subject to it gaining planning permission, and the applicants including a Welsh language policy.
Members backed all ten projects receive funding, for a total of just over £590,240.
Second homes in Pembrokeshire currently pay a 200 per cent council tax premium, which will be reduced to 150 per cent from the next financial year.
Community
Pembroke man born in prison after mum’s wrongful conviction battles aggressive cancer
BETHAN CARTER-HEWINS has spoken to The Pembrokeshire Herald about the her husband’s Josh’s desperate fight to conquer a very rare and aggressive cancer.
She said: “Josh is my life. He’s my absolute everything and it’s awful to watch him suffer. He doesn’t deserve anything bad in this world as he has so much to live for.”
Two weeks ago Josh, was told that the intense chemotherapy treatment he’d been receiving to treat his rare and aggressive Burkitt Lymphoma, had failed.
The 27-year-old, who was born in a prison in 1996 after his mother was wrongly convicted of arson, was told that his cancer had spread. As a result of its aggression, he was told that he isn’t eligible for further treatment.
“So essentially, Josh was sent home from hospital to die,” his wife, Beth, told The Pembrokeshire Herald.
“But Josh is the strongest person I know – his mind is so powerful and even when he’s physically down, he’s determined not to stop. Our fight is far from over.”
Josh has learnt to battle emotional hardship throughout his life after his mother, Annette Hewins, was jailed following her wrongful conviction for causing the death of a mother and two children in 1995. She was just three months pregnant with Joshua at the time of her arrest, and she gave birth to him while she was in custody.
Josh and his siblings were subsequently put into foster care and spent their childhood in the Crymych area and Carmarthenshire.
He moved to Pembroke after meeting Beth in secondary school, and in May, 2023, the couple were married in Pembroke Castle.
But Josh began feeling unwell two years earlier when he was diagnosed with ulcerative colitis, which is a chronic inflammatory bowel disease. He later developed chronic liver disease and in 2023, he underwent a liver transplant.
“Everything seemed to be going well but when we were on holiday in Greece earlier this summer, he began feeling unwell again,” continues Beth.
“His symptoms were very similar to that of his ulcerative colitis with stomach pain, bloating and a general fatigue so initially, this is what we believed it was.”
But further analyses showed that Josh, who is employed as a CAD technician and account manager for the traffic light company, CORE highways, was suffering from the extremely rare post transplant lymphoma – Burkitt Lymphoma.
“Josh’s initial reaction was ‘Let’s get this done’, and he’s shown the most incredible strength right from the beginning.”
His intensive chemotherapy treatment began in June of this year.
“He was initially on EPOCH, which is a slow infusion that goes in over 24 hours five times a week, but quite early on it became apparent that it wasn’t working,” explains Beth. “So he had the choice of either sticking with it or moving onto another extremely intense chemo, called R-IVAC and R-CODOX-M.
“He chose the extreme chemo as he knew he’d be strong enough to cope, and he was.”
Josh was treated at the University Hospital of Wales, Cardiff.
“It was a horrific chemo and very toxic on the gut and the liver, which are both very sensitive areas for Josh as a result of his liver transplant and the ulcerative colitis. But he coped incredibly well and his gut and liver functioned near perfectly all the way through.”
But two weeks ago Josh was given a scan that showed his intensive chemotherapy had failed and his cancer was showing up in more places than before.
He was also told that the only option available to treat the cancer is CAR-T cell therapy.
“But unfortunately Josh isn’t eligible because his lymphoma is driven by being immunosuppressed,” said Beth. “He isn’t eligible for bone marrow transplants nor stem cell transplants because his disease isn’t under control and it’s too aggressive.
“But when we received this news, we knew that our fight was far from over.
“Josh wasn’t going to accept this, so he did his own extensive research and found a drug – Glofitamab – which has been used to treat a very small number of Burkitt’s lymphoma cases across Canada, Copenhagen, Sweden and the USA. And all those cases have gone into remission.”
Sold under the brand name Columvi, this bispecific monoclonal antibody is used for the treatment of large B-cell lymphoma.
“But it isn’t licensed for use on Burkitt’s lymphoma, which means that to treat Josh, it has to be given unlicensed. His consultant has reached out to the drug company to try and obtain physical data confirming its treatment of Burkitt’s and to try and build a case for the NHS to fund it. But the company didn’t have the data because all the cases had used the drug unlicensed, through private hospitals.
“We’re currently desperately trying to reach out to the NHS and the drug company, Roche, to ask them to grant the use of the drug on compassionate grounds. This has been done before, although it’s very rare.
“We’re also talking with private hospitals across the UK and abroad to try and get Josh the very best option. Obviously this isn’t cheap, but how can we put a price on Josh’s life?”
The treatment is expected to cost in excess of £50,000, with the result that Beth has set up a gofundme link- ‘Joshua’s fight for life; Burkitt’s Lymphoma.
“We’ve had some incredibly difficult conversations over the last few weeks – conversations that no young couple should have to have, but that just comes with those waves of emotion that we’re dealing with,” continued Beth.
“In all honesty, I don’t know how I’m feeling at the moment. One day I;m full of hope, and then the next day it’s complete and utter sadness and this feeling of =dread creeping up behind me, that I’m not ready to face.
“But we’re both so overwhelmed and touched by all the love and support we’re getting. And this is really helping us through.
“Despite what has happened, we’re both totally determined, and we’re not stopping until we’re heard.
“Josh is totally ready to face whatever is coming next.”
To support Josh click here.
Community
Royal British Legion’s Wales Festival of Remembrance pays tribute to Armed Forces
WALES came together on Saturday (Nov 2) in a moving tribute to the Armed Forces community at the Royal British Legion’s Wales Festival of Remembrance. For the first time, the event took place at the International Convention Centre (ICC) Wales in Newport.
Hosted by broadcaster Sian Lloyd, the evening honoured several significant anniversaries, including the 80th anniversary of D-Day, the 25th anniversary of the end of the war in Kosovo, and the 10th anniversary of the end of UK operations in Afghanistan. A special tribute also marked 80 years since the liberation of ‘s-Hertogenbosch in the Netherlands by the Royal Welsh Regiment.
The event featured stirring performances by musical theatre group Welsh of the West End and classically trained soprano Laura Sidney. Choral contributions came from Barry Male Voice Choir, Cardiff Military Wives Choir Caerdydd, and Bristol Military Wives Choir, all accompanied by the Regimental Band and Corps of Drums of The Royal Welsh.
Honoured guests included D-Day veterans Jim Miller and John Fiddler, who received a warm welcome from the audience. Other notable attendees were The Rt Hon Jo Stevens, Secretary of State for Wales; Huw Irranca-Davies MS, Deputy First Minister; Brigadier Robert Aitken CBE, Lord Lieutenant of Gwent; and Colonel James Phillips, Veterans’ Commissioner for Wales, alongside senior military personnel.
Philippa Rawlinson, Director of Remembrance at the RBL, remarked: “In a year when we’re marking significant Second World War anniversaries, it’s important we also take time to remember the service and sacrifices of more recent conflicts and the younger generation of the Armed Forces community. Events like the Royal British Legion’s Wales Festival of Remembrance provide an opportunity to both honour the memories of those who have served in our Armed Forces in the past, whilst remembering those still serving today who protect our democratic freedoms and the way of life we all enjoy.”
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