The Lady's Mysterious Illness, explained at last
In which an encounter with an NHS podiatrist (and the Stone Roses) changes everything
“Have you had a hip replacement?”
The question caught me by surprise. I hadn’t expected a podiatrist to ask about such things. I’d come about my feet – the way one heel hurt every time I put my foot on the floor, and the top of the other swelled and ached after even short walks. I just wanted to get moving again. My hip replacement was ancient history.
“Yes,” I replied, after a short pause. “How did you know?” All I’d done was stand up. I hadn’t walked a step.
“Thought so,” she said. “One of your legs is shorter than the other. About 6mm, I’d say, at a rough guess.”
“Really? Does that often happen after a hip replacement?”
“All the time. Surgeons are hopeless at measuring these things, they just look at your feet after the op and if they look the same, they assume they are the same. But a lot of people’s hip joints expand slightly as they heal.”
“Stand on one foot for me,” she continued. “Hold onto this chair, just to be on the safe side.”
I was almost insulted by the suggestion. I’d practiced standing on one foot day after day for months. “I can do up to 30 seconds on this side,” I said. “I’m a bit wobbly on the other one.”
“Of course you are,” she agreed. “I can tell just by the way you’re standing now, your whole body is out of line, trying to bend over on one side. Okay, you can sit down now.”
I did so, still digesting what I’d just learned and its implications. “So, the pain I’ve been having, are you saying it could be something to do with that?”
She reeled off a list of symptoms, and I recognised them all. “Lower back pain on one side. Problems with balance. Difficulty climbing stairs and on rough ground. Vertigo. Your brain is continually trying to compensate. Normally there would be messages feeding back through your toes.” She stopped and took my bare big toe between her fingers.
“Can you feel anything?”
I shook my head. “It’s neuropathy. I had chemo for breast cancer a few years ago.”
“Ah.” Her expression finished the sentence for me. “And when was the hip replacement, again?”
“Just before I got cancer.” I revised that statement. “Well, not quite just before. I had it done the week before the lockdown started.”
Click, click, click. I could hear the pieces falling into place. When I next spoke, I couldn’t quite keep the wonder out of my voice.
“There was never any physio. No follow-up. Well, not hands on.” I recalled one brief session in an office, a safe distance away from a therapist shrouded in protective plastic clothing. “I was just given exercises to do at home.”
“I see. And then you had cancer.”
“Yes, straight after the lockdown finished. We were just planning to get back into hiking again when it happened. I was in and out of hospital for about a year, but nobody was thinking about my legs.”
So there it was at last. An explanation. The one thing that, until now, I had lacked. All I had was a collection of symptoms that seemed too serious to be explained by everything else. Yes, oestrogen blockers give you weak bones and make you feel shitty. Yes, you expect to be fatigued for a while after chemotherapy. But I’d never understood why the first holiday I went on after treatment, a tough hiking trip on the west coast of Corfu, went brilliantly, and the following year’s was a disaster.
Or why I’d once scrambled happily around the coast of Cornwall, but the last time I went out for a walk on a windswept headland I’d sunk to my knees, overwhelmed with panic and unable to move to the next bit of rock. All that time, my body had been flying blindfold, trying to compensate for a cumulative disaster.
Eventually I couldn’t climb stairs or carry shopping. A trip to Paris in the spring was mostly spent looking for places to sit down. Exhaustion spread over my life like a malevolent fungus.
For a long time I’d just put it down to old age. Not trying hard enough. I’d watched my marriage begin to crumble around the edges as my ever-active husband took up marathon running. I could barely even cheer him on, let alone join him. By the time I’d gone to see my GP my list of symptoms was so long and complicated it took me two hours to complete the referral form. I’ve applied for jobs and degree courses faster than that.
I was sent for a dozen blood tests. I was put on a two-week urgent care pathway in case cancer was spreading through my lungs, my colon, or my bones. I lay in a scanner with a probe up my rectum. Every day began with checking in on NHS apps and waiting for texts from outpatient clinics.
Finding out I had diverticulitis explained some of the digestive issues. Diabetes, thankfully, was ruled out. After weeks of waiting anxiously for a lumbar puncture appointment, the haematologists decided my symptoms didn’t merit further investigation. But nothing explained why I winced every day when my left heel touched the ground.
At my follow-up appointment with the GP she got me to remove my socks and observed, “You do have rather flat arches. I’ll refer you to podiatry.”
Great, I thought, ungraciously. Another tedious appointment. Still, at least I qualify for a free bus pass now. I felt every day of my 66 years.
I’d read many stories of people going through long COVID, ME, or CFS and if I’d learned one thing it was how crucial it was to be taken seriously. To be believed. To be seen. It wasn’t just about a diagnosis. It was about identity, the official acknowledgement that it wasn’t just all in your (usually female) head.
Now here it was. The lady’s mysterious illness, explained. And fixable, at least in part, with a lot of physio and an orthotic heel-raise.
There was almost a part of me the felt slightly aggrieved by the sheer ordinariness of it all. Coupled with the thought, how many more stories like mine were still unfolding out there, preventable conditions steadily deteriorating because of those months of lockdown?
Yes, I’d been spectacularly unlucky. First years of pain, then the hip surgery, then the lockdown, and then breast cancer, of all things. Horrible treatment, with side effects that I still battled with daily.
But the one thing I hadn’t been doing was malingering. Finally, a coherent narrative. Who cared how exotic it was, if it made sense and was amenable to treatment?
I left the hospital on a high and decided this called for a cup of good coffee in the lovely little café over the road. There I sat, listening to the Stone Roses1, and decided that, some day, I would like to have I am the Resurrection played at my funeral service. Send everyone away rocking out to a stone-cold Madchester classic, and the Christians couldn’t say anything about it not being appropriate.
In the meantime, I had a lot of living to catch up on. I paid for my oat milk flat white and walked out, a little unsteadily for now, into the sun.