Category: Uncategorized

May to June 2021

The day I finally had a name for it!

Off to my appointment I went. The doctor’s surgery is only a ten-minute walk from my house, and I decided to walk there deliberately, wanting them to see exactly what my breathing was like after even a slow stroll.

The GP was thorough — really thorough. She worked through a long list of checks and questions, then sent me straight through to the nurse for blood tests. Almost immediately, she picked up the phone to the local hospital and booked me in for a chest X-ray. She explained that she wasn’t happy with my breathing and that it needed investigating.

I can’t really put into words how that moment felt. I cried. I was scared. I knew it was serious — and so did she. There was fear, of course, but alongside it was something else entirely: relief. Elation, even. For the first time, it was being taken seriously.

I headed straight to the hospital, calling work to let them know I wouldn’t be contactable for a while. After the X-ray, I was sent to urgent care for more blood tests. I’d been there for about two hours when I was finally called in to see a doctor.

He explained that there were markings on my lungs, but that he wasn’t sure what they were. He told me it didn’t look like cancer, and that there were several other possibilities. He suggested a CT scan, which he could arrange for the following day.

The whole experience was strangely terrifying and deeply satisfying all at once. Terrifying because something was clearly wrong. Satisfying because I knew — finally — I was going to get answers.

I went home gripped by anxiety, desperately wishing it was already tomorrow. I needed that CT scan. Even though the doctor had said he didn’t think it was cancer, I couldn’t get the big C out of my head.

My husband was incredible. I lay in his lap and sobbed. I told him I was scared this was it — that it was terminal. I asked what we should do, whether we should tell our daughter, how we would even begin to talk about something like this. I was scared of dying. The thought wouldn’t leave me.

What’s strange is that I didn’t think about cancer treatment or the long, exhausting journey people go through. My mind went straight to the end — the part where it’s over. I think that’s because my only real frame of reference was my nan, who died of lung cancer. That was the image my brain kept returning to.

At the same time, none of it quite made sense. If this was cancer, then how did it explain everything else that had been happening to me? My inner voice kept arguing with itself: It can’t be cancer — it must be connected to all the other symptoms. So if it’s not cancer… what on earth is it?

There wasn’t much sleep that night. I felt an odd sense of anticipation — almost excitement — at the thought of the unknown finally ending. And yet, I was terrified.

The next day, I drove back to the hospital. As I made my way through the corridors towards the CT department, it suddenly dawned on me that I was walking through oncology. That realisation alone was enough to make my stomach drop.

I had no idea I’d be having a cannula fitted — a small tube inserted into a vein to deliver fluid. The fluid, I was told, was contrast dye, used to highlight things on the scan. I was also warned that when the contrast was injected, I would feel like I was wetting myself… but that I absolutely wouldn’t be. As strange as that sounds, it’s exactly how it feels. At that point, you just have to trust the process.

Thankfully, the scanner itself turned out to be more like a large doughnut rather than a tunnel — a huge relief, as I’m claustrophobic and had been terrified it would be the latter. Just for context, I’ve now done many MRIs since then, and only very recently managed one without tears thanks to a new strategy. But that’s a story for another time.

The scan itself was quick enough. I was told the results would take time and that they’d be sent to my GP. The problem was, I absolutely could not wait.

I know I’m very fortunate, and that not everyone has access to private healthcare, but I had BUPA through work. I contacted them immediately, found a lung specialist, and booked an appointment for three days later.

This part feels important to share as advice: if you’ve had scans done on the NHS and you’re seeing a private consultant, you must get those scans emailed to you. The systems don’t always talk to each other. The secretary for the BUPA consultant told me I’d need to obtain them myself — and let me tell you, it wasn’t easy.

But this was the first time I became truly persistent. I called. I emailed. I called again. I chased and chased until it was done. Eventually, I sent the scans to the secretary and waited — with absolute dread.

I couldn’t sleep. I couldn’t think. Or rather, I couldn’t think about anything except what might be wrong with me.

Finally, the day of the appointment arrived. It was online — we were still very much in COVID times, remember those? As soon as the consultant appeared on the screen, I felt a flicker of relief. He was here. He was going to tell me.

He asked lots of questions, then pulled up my scans. He explained that his specialty was infectious lung disease, and that I would ultimately need to see someone else — but that he was very confident about what he was seeing on both the CT scan and the X-rays.

Sarcoidosis.

“What on earth is that?” I remember saying.

He explained that the scan showed granulomas, and that Sarcoidosis was an inflammatory disease. My breathlessness was all a part of this. He told me he knew exactly the right person for me to see — a sarcoidosis pulmonary specialist at the Royal Brompton Hospital.

I cried. I honestly couldn’t believe it. After everything, I was finally getting an answer.

Interestingly, I would meet this doctor again later on — after I had a high aspergillus (fungal) test result. That led to more tests, which I’ll explain in another post.

This was when I met Professor Peter George — a consultant respiratory physician, clinical lead at the Royal Brompton, and a specialist in sarcoidosis. He is part of the multidisciplinary team there, and although he probably has no idea the impact he’s had on my life, he truly has been exceptional.

He is factual, calm, and deeply reassuring. I trusted him at every step, even when he said I should go on the dreaded prednisone. I spent two years under his direct care and am now back under the NHS, still within his team at the Royal Brompton.

And I’ll say this plainly: if you think you have sarcoidosis or if you have it, you need to be under that team.

Next stop – test results and understanding the diagnosis.