Ovareactions

Friday February 4th 2022. It had been an especially hectic couple of weeks at work launching our new brand & website, and I was very much looking forward to the weekend. I parked in my usual spot and headed to Kanteen to grab a coffee. Ahead of me, I spotted a man struggling to push a flat trolley piled high with bags of coins. As we crossed the road, he lost his grip on the trolley and coins went flying everywhere. I joined in the scramble to retrieve them, bending awkwardly to grab as many as I could before we could be mowed down by the dangerous drivers of Digbeth. I remember feeling a bit of a twinge in my abdomen as I stood up and made a mental note to get back on Yoga with Adrienne’s core workouts.

The rest of the day was the usual blur of meetings and emails. Until about 3pm when the office started to smell very strongly of smoke. Upon further investigation, we discovered that the garage by our office was on fire and so naturally, we evacuated to the pub for the rest of the day. I went home regaling tales of my weird day. It sounds ridiculous, but the minor chaos of that day almost feels like foreshadowing now. It was a break in normality. Little did I know then it would be the last ‘normal’ day I’d ever have.

The next day, I was at my parents’ house planning my wedding table decor with my mom. I spent the evening having dinner and watching TV with Lambros. I felt fine. At about half 7, I walked up the stairs and just as I reached the top, I practically collapsed in sudden excruciating pain. I managed to make my way to the bed as I screamed to Lambros for help. I knew instantly this was bad. When Lambros suggested calling 111, I remember screaming to call an ambulance instead.

I was fortunate that the paramedics were already on a job around the corner and were with me within 20 minutes. Nothing humbles you quicker than two paramedics in their early twenties cannulating you on your bed while you’re wearing Christmas pyjamas. I insisted on walking myself to the ambulance to preserve what little dignity I had left. It was my first time in an ambulance so at least there was an element of novelty. I was given a couple of doses of morphine and we headed over to Sandwell Hospital with one of the paramedics cracking jokes all the way there. It was a Saturday night and A&E was busy. I saw first-hand the frustration of paramedics waiting to hand over. My case, at that point anyway, was relatively simple. And yet, it took at least 3 hours out of their shift.

I was eventually handed over to an initial assessment area for obs¹ and blood tests. All I remember about this is a teenage girl who’d been brought in absolutely paralytic. Classic drinking Glen’s in a field situation. Both her siblings had come with her mom to laugh at her and call her a ‘silly prick’. One of the only good things about being in a hospital is you get great gossip. After what felt like a lifetime, I was moved along the A&E conveyor belt to a line of beds in a corridor. The woman in the bed in front of me was describing very obvious Covid symptons and lo and behold, her Covid test came back positive. One of the many bad things about being in a hospital is being surrounded by other sick people when you’re at your most vulnerable.

I don’t know how long I was lying in that corridor but the morphine had started to wear off and I was suddenly feeling very sick. You’d think it would be standard to give a patient presenting with severe abdominal pain some sort of vessel to vomit in but apparently not. With no staff in sight, I tried to shout for help. Turns out it’s pretty hard to shout when you’re about to vomit. I had to make a split second decision. Vomit all over myself? Lean over the bed and vomit on the floor? Lean over the other side of the bed and vomit against the wall? My body decided a mixture of all three would be ideal, just at the moment a nurse appeared with a cardboard bowl. Too late. I sobbed apologies to her as she took me to a side room to change into a hospital gown while she bagged up my clothes.

At some point, a doctor came to see me. I don’t remember much about this interaction but I know from my discharge summary that he suspected appendicitis at this stage. A completely fair suspicion to have based on an initial assessment of my symptoms of abdominal pain, vomiting and a high temperature. I was moved to a ward at about 6am where I attempted to get some sleep. If you’ve ever spent any time in hospital, you’ll know sleeping is a challenge. Nurses wake you up for obs, there’s constant beeping, bright lights, and there’s usually someone screaming and shouting and threatening to stab the nurses. My memories of this ward are hazy. The only things that stick out are the woman opposite me who kept burping and the condescending voice of the surgeon who told me ‘you’ve got appendicitis, sweetheart’. Spoiler alert – I didn’t.

I was on that ward for less than 24 hours. I was moved to the surgical decision unit at about 3:30am. I was actually starting to feel a bit better and was worried that I’d made a big fuss over nothing and it’d turn out nothing was wrong with me. That’s the problem when you’re being pumped full of antibiotics and painkillers though. They can often mask symptoms and make you think you’re fine when you’re not at all.

That morning, the other women on the ward introduced themselves. J² and B both had fractures in their legs and were waiting for surgery, and H and L both had unidentified problems with their stomachs so were in a similar position to me. There’s nothing like the instant bond that forms between people stuck in hospital together. I quickly learnt from H and L, who had already been on the ward a few days, that we had to look out for each other. They recounted with horror the story of another woman who had left the ward the day before, only to arrive home and realise no one had removed her cannula. When the basics like that are missed, it doesn’t fill you with much hope about the level of care you’re going to receive. To be very clear, I love the NHS and am extremely grateful to them – I’ll talk plenty about that in other posts. But it is broken. Staff are overworked and underpaid, and that results in mistakes. And of course, like any profession, there are people who are just bad at their jobs. We navigated all of this by taking it in turns to fetch nurses when our call buttons continually went unanswered. Basically, whoever could walk that day was on it.

It was H, a nurse herself, that noticed my cannula tissuing. I’d been for a CT scan that afternoon and contrast dye had been inserted into my cannula³, which caused excruciating pain in my arm. The radiographer insisted I let the nurses know when I returned to the ward so they could change it. I still had the same one in that paramedics had inserted almost 48 hours previously. The nurse I told was in no rush to change it until H made a fuss. I still have split veins on my arm from the damage caused by it.

The next morning, another surgeon came to see me, followed by a trail of medical students. Let’s call him Dr. Smug. Dr. Smug proceeded to tell me in a bored, disinterested tone that I have an ovarian cyst. He was desperately showing off in front of his students, telling them how ‘obvious’ it all was. I’d love to go back and slap my actual diagnosis in his face. Yet of course, I accepted what he said. It made sense. I’d had ovarian cysts before. He explained I’d need an ultrasound to find out more and off he went. No explanation of why I had an infection. No results from the three sets of blood tests I’d now had. Later that day, another medical student appeared armed with questions to ask me so he could practice his diagnosis skills. After he’d asked me numerous questions, he threw out a few different diagnoses which I dismissed. When he eventually gave up and I told him it was an ovarian cyst, he seemed surprised. I wish I could remember what diagnoses he’d come up with – he was probably closer to a real diagnosis than Dr. Smug.

Knowing what I know now, I would have asked Dr. Smug a lot more questions and pushed for better answers. But when you’re sick and vulnerable in a hospital bed, you just don’t think like that. This was also during a period where Covid visiting restrictions were still in place on the ward, which meant I didn’t have one of my parents or Lambros to do the critical thinking and questioning for me.

Another day passed and I was itching to go home. It was now Wednesday and I was waiting on an ultrasound. The nurses had no news and I was getting frustrated. My mom, who does not take no for an answer in these situations, somehow found a direct line to the ultrasound department, gave them a call and got me a slot. Much to the nurses’ amazement, off I went for my transabdominal and transvaginal ultrasound scans (yep, they shove the scanning probe up your vagina). The scans found that the cyst was sat on my left ovary but was extending onto my right, hence the pain across my abdomen. In medical terms:

The left ovary contained a large, multiloculated complex cyst measuring 91×83x80mm. It appeared to extend into the midline and towards the right adnexa on TV scan. It appeared part solid and part cystic. The solid component appeared irregular in outline and heterogenous in echotexture with multiple small cystic spaces noted within measuring 68×64×76mm.

Following these results, I was told I’d need to be seen by a gynaecologist at City Hospital as they didn’t have the specialists at Sandwell. I was a bit baffled by this as when I’d had an ovarian cyst previously, I’d been referred to a specialist unit at Sandwell, but I trusted there was a good reason for this. I was given a choice; wait for a bed to become available at City, which could take up to a week, or be discharged and attend a gynae appointment as an outpatient at City the next morning. I obviously picked the latter option. I got to go home and I was satisfied there was a good follow-up plan in place.

The next morning, I received a phone call. My appointment at City had been cancelled. The gynaecologist who’d received the referral had decided it was non-urgent and they’d arrange to see me in a couple of weeks instead. I could barely respond through sobs. I felt so let down, like no one was taking me seriously. ‘Non-urgent’. ‘Not that serious’. ‘Just hormones’. All phrases that women are so used to hearing when it comes to our health.

I could have just left it there, accepted that I’d be seen in a couple of weeks and put up with the pain until then. But I had this overwhelming sense that something was very wrong. Our bodies are pretty good at letting us know when something’s not right, if we listen closely. I immediately went into fight mode. My workplace had recently invested in health insurance as an employee benefit. Without that, I would have never considered private healthcare as an option. I got on the phone to the Priory and got an appointment with their Senior Consultant Gynaecologist that afternoon.

I often think about the what-ifs. What if I didn’t have health insurance? What if I had waited a couple of weeks to be seen? What if I’d seen that gynaecologist at City and still been misdiagnosed? Two-thirds of women with ovarian cancer are diagnosed at a late stage, when the cancer is harder to treat. Only 44% of women diagnosed with ovarian cancer will survive beyond five years in the UK.

Early diagnosis is key for survival and I’m so fortunate that I was able to get that at the Priory. Here’s what happened next.

¹For anyone who hasn’t spent time in hospital or watched Casualty, obs = observations. Obs include blood pressure, oxygen levels and temperature.

²Names have been omitted to conceal identities

³Sometimes before scans, you’re given a contrast dye which helps improve the quality of the images. Fun fact: it has the weird side effect of making you feel like you’ve wet yourself.