From Chaos to Clarity: Why I Started a Patient Advocacy Service

When my husband was diagnosed with multiple myeloma back in 2012, we did what many people do: we became researchers overnight. We scoured the internet, dissected articles, watched documentaries, and filled notebooks with scribbled protocols, dosage schedules, and theories — some credible, others less so. Our kitchen bench turned into an apothecary: reishi mushrooms, curcumin, mistletoe injections, and enough supplements to rival a pharmacy shelf. We connected with clinics across the world — Mexico, Spain, the U.S. — chasing hope in midnight Skype consults and handwritten regimens. This wasn’t a fringe rebellion against conventional care. It was a desperate attempt to find something ‘more’. Something integrated. Something that gave us a sense of agency in a system that often felt clinical and detached. We found glimpses of that at the National Institute of Integrative Medicine (NIIM), where my husband received high-dose vitamin C infusions and where I now work as a nurse. The IV clinic became a place of shared knowledge — a quiet community of people trying to think outside the box while still grounded in care.

And yet, even in a supportive setting like NIIM, we were still the ones holding it all together — researching, coordinating, interpreting blood results, and attempting to build a plan that made sense. The system didn’t do that for us. It rarely does. My background as a nurse helped — but it didn’t make it easy. Nothing had prepared me for the sheer volume of conflicting information or the emotional toll of making decisions that might alter the course of someone’s life.

When we circled back to cutting-edge medical treatment, I felt a sense of relief. I was comfortable navigating the hospital system and felt safe in the hands of medical experts. We maintained agency over Tom’s treatment, moving between hospitals based on what was available, always under the guidance of Professor Miles Prince, our trusted medical guru. Once we had exhausted all local options, we made the decision to travel to Seattle in the United States in search of a clinical trial for CAR T-cell therapy. It turned out to be a positive experience. I quickly adapted to the American healthcare system and became adept at managing Tom’s appointments and care with confidence and clarity.

Tom passed away in 2020 from a virus that caused viral encephalitis. At the time of his death, he was cancer-free — in what we considered a healed state. He had undergone a profound transformation, purifying himself inside and out. By then, he was living a life free of toxic thought patterns and limiting beliefs, and had reached a deeply evolved spiritual place.

It was my greatest honour to be by his side through that chapter.

My desire to advocate for others on their health journeys is rooted deeply in this experience, shaped by love, loss, and the unshakable belief in the power of compassionate, informed support.

What I came to realise is this: ‘no one should have to do that alone’.

That’s why I’ve started a patient advocacy service — to walk alongside individuals and families navigating chronic or complex illness, not as a substitute for medical care, but as a bridge between systems, opinions, and overwhelm.

I don’t give medical advice. What I offer is something different, and desperately needed:

• A second set of ears in medical appointments

•  Help translating complex information into something you can actually use

• Support navigating between conventional and complementary therapies

•  Emotional presence and practical organisation during a time when everything feels chaotic

We are not meant to walk the healthcare journey unsupported. People deserve to feel heard, empowered, and equipped to make decisions that reflect their values — not just their diagnosis.

My experiences — both personal and professional — have led me to believe that healing isn’t just about medicine. It’s about feeling safe, informed, and seen. And sometimes, it’s about having someone in your corner who knows how to ask the right questions and is not afraid to sit with you in the complexity.