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A young cancer survivor has spoken out about the hidden costs and challenges of a cancer diagnosis, as the Government and a cancer charity launch a new initiative to offer better support and coordinated care for patients.
Express caught up with Antonia Rubio to discuss her thoughts on the newly launched ‘Improving the Cancer Journey Jersey’ project and how it could help address the challenges and gaps in care that she has experienced.
The recently launched Improving the Cancer Journey Jersey (ICJJ) service, a collaboration between HCS and Macmillan Cancer Support Jersey, aims to address the often-neglected challenges cancer patients face.
It ensures that patients receive a 'holistic needs assessment' from the charity, which includes personalised care plans and face-to-face guidance.
This will help patients navigate the various support services available to them, including financial, emotional, and group support as well as practical assistance and counselling.
Pictured: Jersey’s first cancer strategy emphasises the importance of disease prevention, improving existing screening programmes, and supporting patients and their families.
The ICJJ project also aims to streamline the sharing of information among different healthcare professionals, including community services, charity services, and GPs.
This change is part of Jersey's first cancer strategy, which was published at the end of last year.
Antonia Rubio, 25, is seeking to raise awareness of the financial, emotional and social costs of the condition, drawing from her own experience of battling thyroid cancer last year.
Miss Rubio, who is now cancer-free, became an advocate for young cancer patients facing similar struggles, after her social media posts about her experience garnered millions of views.
Pictured: Miss Rubio has shed light on the hidden costs of cancer, advocating for improved support through the newly launched 'Improving the Cancer Journey Jersey' project.
The 25-year-old has also launched an online community group called 'Friends Fighting Cancer', which aims to connect young cancer patients and survivors across the world to provide a platform for mutual support.
She is travelling to London this week to give a speech at the Royal Albert Hall for a fundraising event benefiting the Teenage Cancer Trust, which will feature artists such as Noel Gallagher and The Who.
Getting ill shouldn’t be expensive, but being diagnosed with cancer can cause money worries for some patients.
Research from Macmillan has shown that four in five people are, on average, £570 a month worse off as a result of a cancer diagnosis in the UK.
Many organisations in Jersey provide financial support and advice for patients, including Citizens Advice, CLIC Sargent, Customer and Local Services, and Jersey Cancer Relief.
However, navigating the available services can be challenging and overwhelming, as Miss Rubio found out.
“It was so difficult having to advocate for myself and to fight for the existing financial support," she said.
"It was really hard trying to comprehend everything by myself when I was so unwell.
“No one knows how expensive it can be to fund petrol to and from appointments and flights to go over to the UK.
“Some of that is funded for you…I had CLIC Sargent give me a grant but that was only because I did digging.
“But hopefully that will be more obvious and accessible to everyone with the new cancer strategy.”
Miss Rubio explained how specific dietary requirements due to her allergies, as well as weight fluctuations caused by treatment, posed further unexpected financial costs.
“I developed those allergies so there were only certain foods I could eat so I couldn't pick the cheapest thing on the shelf," she said.
“We had to pick what was safe for me and sometimes that would be way more expensive.
“I couldn't wear makeup. I had to wear certain moisturiser and stuff like that.
“Also just like like losing weight and putting on weight, as your body fluctuates a lot.
"You have to buy new clothes and that can be so expensive.”
The new ICJJ project, which has mapped out existing services, aims to alleviate the stress of financial worries for patients by providing personalised face-to-face guidance about what they are entitled to.
This aims to simplify the process of navigating available resources and to lessen the burden previously borne by patients.
The administrative burden caused by navigating the healthcare system can also have an impact on a patient’s well-being, as Miss Rubio explained.
“It is a full-time job being a cancer patient," she said.
"Being proactive about your treatment is a massive effort. But if you aren't, then things will slip though the cracks.
“One thing I really struggled with was communicating between different teams and chasing different departments.
“The onus was always on the patient, but not everyone has the capacity or the energy to be proactive.”
However, Miss Rubio felt that the newly launched ICJJ project would alleviate this burden by facilitating information-sharing among various healthcare and charity professionals.
“I love the fact that it has multiple teams working together," she said. "It sounds like a really good thing.”
Navigating beauty standards is already challenging – and a cancer diagnosis can exacerbate this struggle.
Miss Rubio experienced how those who appear "too healthy" to be ill can face a double burden of social expectations.
"People have a view of what cancer looks like," she explained. "But cancer doesn't look the same and there's no one size fits all for cancer.
“And then, added to this, there is the pressure on young women to look a certain way. And that is totally different to the stereotype of a cancer patient.
“Because I would wear nice clothes and do my hair, it meant that people would assume that I was not ill."
Pictured: Miss Rubio spoke about the social stigma and emotional toll of not fitting the stereotype of a cancer patient.
Miss Rubio added: “When I was having my treatment, although I wanted to look good to feel better about myself, I didn't want to look ‘too good’ because then people would just dismiss me.
“You already feel so self-conscious as a young woman. But then this is especially the case when you are on steroids and when your body changes and your weight fluctuates due to cancer treatment.
"There's already a lot of pressure on us as women, so to add cancer into the mix and it is really hard. And then also with people just assuming I'm fine.
“One thing that's been hard for me is having to tell people I have cancer because I look deceivingly healthy; I feel that they won’t believe me because I look fine.”
She hopes that the new ICJJ service, which aims to coordinate the existing emotional support and counselling services for cancer patients, will target the unique challenges faced by young women such as herself.
Beyond financial and emotional challenges, Miss Rubio revealed that cancer can bring hidden obstacles like losing relationships and grieving the life you once had.
She explained: "With my treatment, I was told that like there's a chance that it could affect my fertility, but that I wouldn't know until I start trying.
"So basically I have to live the next few years of my life not knowing if I can have kids.
"I have to come to terms with the fact that my life looks different now."
Pictured: Miss Rubio garnered millions of views after sharing her cancer journey online to raise awareness and support those with similar experiences, while also highlighting the unique challenges young cancer patients face.
Miss Rubio said: "My goals a year ago would have been to buy a flat and to get engaged and to eventually have a family.
"Now my goals are so different. Now I want to be healthy and to help other cancer patients.
"And it's like hard coming to terms with the fact that your life is going to look different to what you thought.
"Your friendships change because having cancer can really put a strain on relationships
"This experience has changed me and I am different now."
Miss Rubio also spoke about the reality of life after cancer – something that the ICJJ is hoping to address with a new programme to help cancer patients transition from active treatment to long-term follow-up care.
She said: "When I was having treatment, I was in survival mode and was completely focused on getting better.
"Now things have slowed down and I've had a chance to process what's going on, it's all hit like a ton of bricks.
"I've had to have to come to terms with all the emotions that I repressed while having treatment.
"The reality of life after cancer isn't always as smooth as it looks.
"I thought that life was going to go back to normal but it has been a lot harder than I thought."
The new project aims to address the physical, mental, and social aspects of living beyond cancer with Macmillan's survivorship programmes.
The cancer strategy explained: "Nurse-led survivorship programs can address the needs of cancer survivors by involving oncology nurses in the delivery of comprehensive and coordinated care for cancer survivors.
"Nurse-led survivorship programmes can also provide education, counselling, referral, and advocacy services to help survivors cope with the physical and psychosocial effects of cancer and its treatment, such as fatigue, pain, anxiety, depression, fear of recurrence, sexual dysfunction, and financial hardship.
"By empowering survivors to take an active role in their own health and wellbeing, nurse-led survivorship programs can enhance their satisfaction, self-efficacy, and quality of life."
Antonia Rubio sat down with Express in December to talk about her efforts to raise awareness and support other young cancer patients using TikTok.
Listen to the interview below or search 'Bailiwick Podcasts' on your favourite podcast provider...
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