'In November 2021, I think, I went to Istanbul on a holiday with some friends, went to a hammam, which is a Turkish bath where you get washed and a massage, and when I was in there I had a massage, and the woman stopped the massage and in broken English said, "Lady, baby?" thinking I was pregnant. So, I went white. I knew I wasn't pregnant, but it all became very apparent to me then that the lump was, actually, probably in my reproductive organs. And I remember talking to my friends, like, "My God. How is a Turkish masseuse doing a better job of telling me what's wrong with me than my GP has for months?"
'Primary care and my experience with my GP was, like, disappointing, to say the least; so many phone calls, me chasing, being dismissed. I called it medical gaslighting by the end, and I think the reason I ended up in tears with the final GP appointment was finally feeling vindicated, like I'm not a neurotic woman who's making a fuss over nothing, which is definitely how I was made to feel. But the delay to the surgery date meant that it just grew back. I'd wasted the whole summer. I had been through the menopause and it grew back, and I rang the hospital to say, "I'm really—." I was scared now, because I knew sarcoma, the cancer I had, or have—who knows—was really aggressive, and as soon as it started growing back, I knew—. I was like, "This is a red flag, I'm really scared now."
'One Thursday/Friday, I rang the hospital 72 times across the course of two days, just to try and speak to someone. It was just from February basically until 30 September, where the cancer was growing inside me, and there was no urgency and there were red flags, and no-one would speak to me, and I spent hours in the evenings crying. I'm sure it's okay to cry now, because it's quite an emotive thing and I don't mind doing that, but I just look back at then and think there were so many missed opportunities to get me the care I needed.
'So, at this point, I don't even know I've got cancer, so I've had this consultation where they've assessed me, I'm going into surgery the next day, I have what they call an "open myomectomy" where I basically get a C-section cut. They take the fibroid out of my uterus. It was a long and complicated surgery, my consultant said. It was a bit unexpected, the way the fibroid was embedded in my uterus slightly, but they were keen to try and save my uterus, because I was 39. I got discharged a few days later. I came home for recovery. I was told to take it easy for about six weeks.
'Six weeks later, almost to the day, I got a phone call from the hospital—and I might cry again—at 08:30 in the morning, and I was like, "Okay, they wouldn't ring you from the hospital at 08:30 in the morning to break good news." And, then, I rang them back later in the day, because I was actually doing something when they rang, and they were like, "Hi, Claire. Can you come in to clinic at 08:45 on Wednesday morning?" And I was like, "I've got cancer." And I had to sit for two days knowing that, and I didn't tell anyone, because I didn't really want to scare people without actually having heard the words. I knew it would be a serious cancer. I knew it would be sarcoma, which has a terrible prognosis if it's left in your body. Early diagnosis is essential. So, for me, I felt like I had a death sentence. I just sat there for two days thinking about how I'd tell people and it was awful.
'She sat me down, and told me I had sarcoma and we both knew it was really serious. She was visibly upset and she said she couldn't stop thinking about me and she'd been thinking about me ever since the biopsy results had come back, because they should have taken three weeks, but there was a delay on biopsy results. So, it was six weeks.
'I had a week and a half to deal with the fact that I was going to have life-changing and dramatic surgery, and I was okay with it, which is mad, because the prognosis was so awful that having a hysterectomy felt like good news.
'So, I had the surgery on 2 December. I came round about 8 o'clock at night, in a lot of pain. I woke up the next day and the consultant said, "We left your ovaries in. When we took your uterus out, we couldn't see any evidence of disease. We couldn't see anything that made us concerned. We couldn't see anything that alarmed us."
'But sarcoma is an incredibly aggressive, easily spreadable disease, so I'm now on scans, x-rays, ultrasound, consultant appointment every three months now for the next two years, at least, and then after that, every six months, and then I'll be monitored for 10 years, because it's a really aggressive cancer.
'I kept seeing male, men GPs, for months and months and months, and I'm a really open person. I over-share to the point of other people's discomfort sometimes. So, I never feel uncomfortable talking about my body. I never feel uncomfortable talking about bodily functions, anything like that. I've always been been someone who talks about those things.
'I did sometimes find men GPs were a bit like, "Ooh, ooh, ooh. This woman's very happy talking about this." And I remember one interaction in particular when I was talking about my bowel problems that I thought I was having, and I did feel like there was a bit of a peculiar—like my GP felt uncomfortable, and I remember being in that appointment thinking, "Why is he uncomfortable with me talking about bodily functions, when he's a medical professional? Like, this is weird."
'I didn't feel there was, like, much emotional connection or empathy sometimes, and I felt like a neurotic middle-aged woman who had nothing more to worry about than something like physical discomfort. And then, it was when I saw the woman GP who just vindicated, made me feel understood, let me be emotional about it, told me what I was worried about was worth being worried about, and that just changed my journey from there on out.
'The gynaecology nurse was amazing, but they spoke to me and my partner about being honest with each other at all times, because you have to have a bond where you both know how you're feeling, and you can't do this, like, toxic positivity, because it doesn't work.
'But I think the worst moment was between being told I had sarcoma, and then going in to see my consultant the following Wednesday. There was the MRI, the CT scan in the middle, and I remember waking up at, like, four in the morning, and I slept well, because the emotional stress was so much. You thought you'd have insomnia, but I slept well. And I woke up in the night to hear him crying, and I just said, like, "Are you okay?" He was like, "It's fine for you, because you're just going to die. But I've got to live without you for ever." And I remember thinking, like, "That is it. Like, this journey hasn't—." I did think I was going to die, at that point, and I was like, "He's right." Ultimately, I don't have to live with the consequences of this, as much as I wanted to live with the consequences, but the impact on all of those people was just heartbreaking, and I carried that with me all the way through it, and I still carry it now.'