Two years ago I gave myself breast cancer. Now that I've recently been diagnosed with Functional Neurological Disorder I can be absolutely positive that I unwittingly caused it myself. I was treated all along as a neurotic faker and this is my heads-up to those women with FND that there can be a smooth continuation of utter disbelief and disdain from doctors and nurses should you ever end up like me. I am far far beyond caring now but maybe someone else might benefit from an advance warning.
This may take you 15 minutes to read but that's longer than any British doctor will give you in 2016. My time is for nothing.
Someone somewhere decided that the women who need to be rescanned following a suspicious first-time breast screening mammogram should be informed by a bulky leaflet being sent to them through the post. The shock and horror on opening that envelope unexpectedly. They never thought of that. You're sitting at home suddenly having your eyeballs blasted with breast cancer statistics for the first time in your life. There's pictures too. Just in case you don't get it that they're saying it could be you, yes you. But they literally don't have the time to talk to you.
Even phoning the screening centre nurse got me little response after that letter because, I imagined, the people with the real cancer are the important ones here. So the rescan happened silently, an ultrasound silently a physical exam silently. No, nothing there, the first scan was confirmed as a false positive. I was shown the door clutching a flimsy leaflet this time - sometimes the scanners squash little bits together, they call it overlapping breast tissue, shrug. Come back in three years.
Five months later I found a lump where they'd been looking and another harder lump in my armpit. Yes, just like someone on the telly. My leg on the same side was partly paralysed for about four days at the same time. The lumps are probably nothing but I'll refer you to the hospital says the GP, make another appointment about anything else. But my leg got better anyway.
I went to the breast clinic and the professor there couldn't find the first lump nor could I. He points at my armpit and says, that's a reactive lymph node so no scans necessary. Big long lecture ensues about the Angelina Jolie effect clogging up his clinics. Shortly after I noticed some of my fingers on that side clawing in like they'd become weak. Because I'd had a neck injury four years before that'd never fully recovered it seemed likely to be that.
Another five months went by and although I was told on the phone by a GP to wait a further three months I reckoned that my armpit tumour was visible enough for any doctor to see by eye. Still I was told it's probably nothing right up until the point they were doing a biopsy. This is no lymph node she said. They were all so surprised that I wasn't surprised when they eventually told me weeks later that I had invasive cancer in my armpit. But this was new they said, five months ago was a lymph node.
Things didn't get any easier for me so I transferred to another hospital in London. It gave the impression of being a shining temple of cancer care but it turned out to be another sausage factory. There, after speaking to a surgeon who wondered if I would like her to just amputate my whole breast, my new nurse advocate shook my hand said she was on her lunch break and started chatting to the surgeon about coffee. We'll get back to you, they both grumbled over their shoulders. I was completely forgotten about then. You know, when I needed cancer surgery.
No explanation was given but they were not best pleased that I dared to remind them a few weeks later. I was purposefully traumatised whilst sedated before the surgery and then they ignored me when I said the pain relief wasn't working afterwards. It was their all-important lunchtime so I was left in a side room in agony before being sent home later. They totally despise you and they treat you accordingly when they believe you're not really sick. In the end I chose not to have any more physical treatment after that surgery and they told me not to come back even for check-ups if I felt so badly about it all.
I now know they were right because the diagnosis of FND makes me liable to manufacture my own ill health and they seemed sure of that without saying it to me. The thing I heard more than anything was - you look so well. I guess I could be adept at faking that too. A good all rounder. One year later I've now stopped taking the tablets too because they made me feel sick and I was told they don't do that, plus they remind you of your cancer every day for five years after. Seems sensible to avoid all that completely and just fake myself better. But I wasn't ill anyway, was I? Just a lump of cancerous cells that were binned so I'm not ill now anyway, am I? Fake fake a go go.
I learned quickly not to talk to people about the cancer after I poured my heart out to someone when it happened and they asked me the next day if I was still feeling sorry for myself. No one would ever make a horror movie about this FND hideousness either because it would scare people too much. Yet it's all real and it's happening right here in Great Britain in the 21st century.
Even the Queen's Square neurologist who last month instantly diagnosed me with classic FND symptoms based on my temporary partial leg paralysis didn't want to listen when I told him about the lump I'd found on that same day on the same side. Later he asked me why I'd stopped working again then. Well, I was recovering from the breast cancer surgery. What? he bleated, You mean you actually did have cancer?
He won't have to face me again though because he was able to diagnose and discharge me on the same day. My weak fingers will get better because I am one of the lucky subset of patients who'd randomly heard of FND before diagnosis and I accepted that it was possible. Okay, I get it. Great, a bit of physio and you're cured, goodbye. This man could have handed me the cure for my cancer and he didn't even realise it. So you see it is indeed we who undermine their intelligence. The physio he said he'd refer me for unsurprisingly seems to have been forgotten.
People may well ask, why am I so accepting of the FND diagnosis? First of all, because of my neck injury I was seeing neurosurgeons who've already ruled out everything physical. I also remembered afterwards that when I was 17 I choked on an egg sandwich. From that point on my mouth reacted instantly to eggs with swelling and itching even if I didn't know something had egg in it. My Dad always said it was psychosomatic. That lasted for the next 17 years until I was starving on a trip in Northern India and I wanted to eat an egg rather than eat daal again. It seems a stupid place to do that in retrospect but I didn't react and I was okay eating eggs from then on. One third of my life no allergy then one third allergy after a shock, now one third no allergy after I had to confront it - it's kind of obvious in my case.
I see FND as your brain's silent but outwardly disproportionate registration of shock. Even if you're not aware you've been shocked and everyone tells you it's nothing to be shocked about anyway. It's out of your control. For me it's worked the other way around too (I did say I was a good all rounder.) When I burned myself badly once I didn't feel a thing as I watched a souffle of skin rise up painlessly. That's my brain!
It's been a long harsh lesson learned for me but if you've read this far maybe you can be alert if you have FND and don't want to risk such a thing possibly happening to you after a breast screening. I guess I'd had pre-cancer undiagnosed symptoms of FND that were dismissed all along as health anxiety such as chest pain, a drop attack and intense face pains at night mostly. I've also had chronic unexplained pelvic pain for over a decade and my neck injury persisted for years after it should have resolved. Not a single symptom of cancer till I got the lumps after screening though.
Maybe I'm a one-off, I don't know, but I have since discovered that the chance of being later diagnosed with breast cancer after a false positive screening increases for no known reason.
Today, if I knew that I had FND when I went for a first-time breast screening mammogram I'd ask beforehand to be informed of any suspicious results by phone at least. I think that's the most they're likely to do for you and they could only say no. Be prepared if you can.
To your good health and your good luck.
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