Chris's patient story and setting up a business
What started with a little lump in my chest, took me on a strange journey through treatment abroad, a macro prolactinoma diagnosis, and even starting my own businesses.
All I wanted was to have the lump in my chest gone. It was small, mostly painless, but annoying. It wasn’t the first time it had popped up. Ten years before, it had been drained and faded away with no problems.
But when it appeared again, there was an extra challenge: I was living abroad in Germany, and unfortunately the GP I’d made an appointment with didn’t speak English.
Armed with Google Translate, we made it through the appointment, but I was frustrated; he’d referred me straight to an endocrinologist.
Humouring him was easier than arguing in German, so I thought it would do no harm to go along. Maybe they could refer me to the right person.
When the blood tests came back with a sky-high prolactin level of 6400 mIU/l, I wasn’t yet worried. I was still looking at this as a bit of a distraction, sure we’d get back to the lump sometime soon.
When they referred me for an MRI, I still wasn’t worried — the German system is a kind of hybrid of public and private healthcare, and I was convinced they were just being thorough.
But when my doctor phoned me before the MRI results to tell me not to be alarmed by anything I heard and to make an appointment for the next week, then I started to wonder.
A quirk of the German system is that they tell you your MRI results there and then, just a few minutes after the scan. The plus side is no waiting around for a letter whilst going mad googling everything; the downside is they only give you a diagnosis of the problem — no treatment recommendations or solutions - that’s to be discussed with your doctor.
When she called to warn me not to worry, my doctor had a pretty good idea of what they were going to find: I had a macro prolactinoma. There was a 16 mm of tumour right at the base of my brain.
When you get that diagnosis, there are a lot of caveats: it’s not technically a brain tumour — it’s on/near the brain stem, and it’s not such a big deal — you can manage it with drugs.
Caveats aside, it was a shock. I’d gone to the doctor expecting a straightforward procedure, and here I was a few months later looking at an MRI of my brain being told that bit shouldn’t be there.
But shock wears off. I settled into the Cabergoline routine, thankfully avoiding most of the side effects I’d read about (though my partner still maintains my snoring got worse). I’d take the medicine, it would shrink — maybe as my testosterone levels began to climb I’d get that thick beard I’d always hankered after.
I started to refer to Cabergoline as my ‘beard pills’ and decided to affectionately nickname this unwelcome blob in my head ‘Bryan’. In fact, with the exception of the DVLA who managed to accidentally and incorrectly revoke my license not once, but twice, things went pretty smoothly at first.
But it turns out Bryan was (and is) pretty stubborn. Though my prolactin levels dropped dramatically in the first month, progress then stopped; it’s bobbing around the same level, 1500 mIU/l — still about four times higher than normal. Before this, I’d hardly been to the doctors. I was that annoying person who never seemed to pick up the office cold. Suddenly, I had blood tests once a month and regular doctor’s appointments in the calendar.
Faced with uncertainty medically, I found myself inadvertently looking at other aspects of my life with a fresh pair of eyes. I found myself re-evaluating many of the ‘default’ settings in my life: living abroad in Germany, working for the same employer since I graduated. Things were ticking over in my head.
It was around this time that my partner and I started discussing starting our own business. One of our friends had a baby and we were shopping for a present. Not wanting to pigeonhole them, we were trying to find anything that wasn’t pink or blue. We started wondering why it was so hard to find things and joking we should start our own shop. At that time it was more of a ‘wouldn’t it be nice if’ than a concrete plan.
Then we saw a brilliant BBC documentary: No More Girls and Boys: Can our kids go gender free? Before the macro prolactinoma diagnosis, I think we’d have watched it, marvelled at the extent to which these little kids of seven had such strong ideas about what was for girls and what was for boys, but perhaps not acted on it.
A few months before, the idea of being diagnosed with a pituitary tumour seemed crazy. But if that could happen, maybe I could make something crazy like starting my own business work. Rather than spending evenings googling ‘unresponsive macro prolactinoma’ and worrying about what the next blood test results would show, suddenly we had a new purpose.
We were sourcing stereotype-busting toys from around the world, trying to figure out coding and ecommerce platforms — there was something else to focus on. Six months later, the lump in my chest is still there and Bryan is much the same — though fingers crossed for a new double dose of beard pills.
But everything else has changed: we moved back to the UK, set up an office, and our very own gender neutral toy and book store, genneu.co.uk, went live at the end of February.
I have no idea what will happen with Bryan. I have no idea whether GenNeu will be a success. But I feel pretty lucky: I don’t really have many side effects from the tumour or the Cabergoline, and this diagnosis gave me the push to try something new. More than just giving me something else to focus on, it helped me think about what I enjoy doing and what I want to do with my life.
And the beard should be coming through any day now.