Through the Layers: The search for help that never really ends

A thank you to everyone

I didn’t expect the first issue of this newsletter to land the way it did. I was nervous about sharing parts of my story, but the thought that it might help someone outweighed my own hesitation. I thought maybe five or ten people, mostly family and friends would read it. To have nearly thirty of you here already feels huge.

Thank you for reading, for sharing, and for sending your thoughts my way. It’s given me the confidence to keep going with this and I hope you’ll stay with me as this grows.

A quick note, I’ve learned that some of you tried to reply to the last email, and it bounced back. If you want to reach me, you can message me any time on Instagram or TikTok @ttlnewsletter and I promise I’ll get back to you.

A story from my journey

Looking for treatment for my keloids has never been a straight forward. It’s been years of consultations, waiting lists, new doctors, treatments that were promised but delayed, and plenty that didn’t work for me. There’s never been a single turning point where I thought, “That’s it, problem solved.” Even now, I’m still on the road, still trying to find something that makes a real difference.

By 2021, I’d already had two surgeries and a round of radiotherapy on my ears. I’d lost count of the steroid injections (easily more than thirty) over the years, in different keloids, sometimes painful and exhausting. Yet the keloids were still active. Some grew worse. At this point, every setback felt heavier than the last.

Then came the pandemic, and like many people needing hospital care, everything slowed to a crawl. Appointments were cancelled or pushed back for months. New treatments I’d been told might help never materialised. My most visible keloids were flaring badly, and I was spending hours each day trying to find anyone who could help.

You’d think a quick Google search would turn up plenty of options. It doesn’t. Most clinics you’ll find offer steroid injections or surgery as their main treatments. These do help many people, but for me they weren’t enough anymore. I felt stuck searching for someone who had experience with more advanced treatments but not sure where to find them.

Eventually, after weeks of searches, I found a specialist two hours away who seemed to offer more than the usual. My parents and I decided to pay for a private consultation to see what they could do.

We got there an hour early, nerves running high. The doctor was warm and kind, and that helped me relax a little. He showed me photos of other patients’ keloids and explained the treatments he’d used. Surgery and radiotherapy were possible privately, but the radiotherapy alone would cost over £10,000. He said he’d write to my GP to try and have me referred to the NHS hospital where he also worked. It sounded like the best path forward, though after so many disappointments, I couldn’t help feeling sceptical.

Months passed before the NHS appointment came through. The hospital agreed my case was severe, but because I’d already had radiotherapy before, I needed to see radiology again to go through my records, calculate the radiation I’d received, and talk through possible side effects. Another couple of months went by before that consultation and then another stretch of waiting before I finally got a surgery date. Eleven months after that first private visit, it felt like the end was in sight.

My mum came with me on the day. The drive there was filled with nerves and cautious hope. My parents had booked a hotel so I could recover somewhere comfortable, and I’d been joking all week about ordering my weight in takeaway once it was all over.

But from the moment we arrived at the hospital, something felt off. Unlike every other surgery I’d had before, there’d been no instructions about fasting or preparation. We wandered through the building for a bit before finding the right department, then sat on chairs in a corner, waiting. An hour passed. Then another half. Finally, I was called through.

Doctors came and went, looked at the keloids on my jaw, neck and ear, left the room, came back with another doctor, left again. It felt strange, but I told myself not to question it. Then came the news I dreaded: they weren’t going to go ahead with the treatment on the biggest, most painful keloid, the one I’d pinned my hopes on and without that, the rest didn’t make sense.

I barely heard their reasoning. My head was buzzing with anger, frustration, disbelief. After nearly a year of waiting, after letting myself hope again, it felt like the rug had been pulled out from under me. They explained that due to the location the treatment could affect the nerves in my face and have lifelong consequences. The reason made sense however, I didn’t understand how this concern wasn’t considered sooner. My mum and I walked out in silence, cancelled the rest of the hotel stay, and drove home. My whole family felt the blow. And just like that, I was back to searching all over again.

Even after that disappointment, it took some time, but I reminded myself that this isn’t the end of the road. It’s another bump, another hurdle, but not the finish line. Life throws obstacles at all of us, and while some feel bigger than others, they don’t mean we stop moving forward. I’ve learned that hope doesn’t disappear just because plans fall apart. Sometimes it just takes a different shape. I’m still looking for answers, and I won’t stop. If you’re in the middle of your own struggle, I hope you don’t stop either. We’re all learning how to get through tough times and maybe sharing these stories makes the climb a little easier for all of us.

Help us keep sharing real stories, you never know who your advice may help.