You get told about your treatment plan for cancer but no one tells you about the implications for work
Antonia Rubio’s cancer journey started in November 2020 when, in her fourth year of university, she fell ill.
She noticed that she was getting rashes when she ate food, drank alcohol or wore make-up. With Covid restrictions in place, a GP dismissed it as ‘probably the student lifestyle’ and she was told to come back when lockdown was over if it persisted.
Things turned worse when she had a dozen anaphylactic shocks in three months. She was losing weight and moved back home to Jersey, deferring her place at university.
Nine months later she was diagnosed with MCAS (Mast Cell Activation Syndrome), a rare disease where the immune system can’t identify whether something is safe and reacts as a defence mechanism. A lump in her throat was put down to the anaphylactic shock, anxiety, and the fact that tubes had been inserted.
One day, on a routine ENT check-up, a doctor noticed the lump and ordered an ultrasound biopsy, which was inconclusive. ‘I was told that it was more dangerous to operate and live without a thyroid than operating and it not being cancer,’ she said. ‘I waited a year for monitoring. By then I looked really ill, and I felt like no one was listening.
‘The lump was the size of a golf ball, and I couldn’t breathe properly lying down. I had studied professional musicianship at uni and had been hoping to be a professional singer, so I knew it felt wrong. I decided to go private but still the doctor was convinced it was not cancer.’
Back in Jersey, Antonia (25) started a job in September 2021, but she found it a struggle. She would come out in a rash even if someone opened food near her.
‘I experienced discrimination, things like not being invited to events because they feared a reaction. It took me quitting to realise what reasonable adjustments might have been possible,’ she said. ‘I didn’t know help was at hand through any of this. Luckily, eventually I heard about JET from a friend. No one really talks about the journey after cancer. You get told about your treatment plan but no one tells you about the implications for work. When I called work to tell them I had the cancer confirmed, I had no idea myself what was going to happen.’
Antonia worked with Employment Co-ordinator Margaret Ramage, who retired from JET in August.
‘My Employment Co-ordinator was there to help and solve problems. I admired Margaret for being so strong and it’s helped me stand up for myself,’ she said. ‘She validated my feelings, and I realised I was not being an inconvenience. Actually, my needs could easily be met and it’s important to have someone on your side when you’re ill because you already feel confused and anxious.
‘I was ill for three years. I had cancer all that time, but I didn’t have the label until it was diagnosed quite late on. But I should have been treated the same, even if we didn’t know what was going on.’
Although clear of cancer, Antonia has been left with a lifelong health issue in MCAS and needs cell treatment once a month. She can’t work full-time but she knows that both she and JET will focus on what she can bring to a workplace.
Antonia, who is now an ambassador for CLIC Sargent (Jersey), wants to use her cancer journey to help others and has been posting about cancer on TikTok (@toniie.rubio) and Instagram (@toniie_rubio) for 18 months, something that has led to her being nominated in the JEP’s Pride of Jersey awards (Young Ambassador of the Year) and the BBC’s Make A Difference awards.
‘I want to use what has happened to help other people,’ she said. ‘I’m speaking up for people who can’t speak up for themselves. And that’s what JET do for anyone who has a disability or long-term health condition.
‘By seeking JET support, I could get on with my recovery. When you’re struggling and going through treatment, all your energy should go towards getting well.
‘I trusted Margaret to work in my best interest and she said the only thing you need to focus on is staying alive. You only get one chance to beat something like this. I am so glad I came to JET and asked for help.’
