It all started when I first went on the contraceptive injection. I couldn’t wait, it would be the first time I’d have had a reprieve from the seven days of agony which were my period. Thanks to the freedom of the injection and lack of periods, I finally took swimming lessons, which I had always wanted to do. Then I started bleeding heavily and had to miss lessons. People kept telling me to just use tampons and go, but I knew that wouldn’t work, it was so heavy. Something was wrong.
I went to the doctors to check it out and they told me the heavy bleeding was polycystic ovary syndrome (PCOS), and there wasn’t really anything I could do about it.
It was a locum at the surgery who asked when it started. She said ‘I heard everything you said but let’s take a look at what is going on. Let’s not make any assumptions’ and sent me for a scan. When the results came back, there was no evidence of PCOS, and I was referred to a specialist because the lining of my womb was a bit thick.
I was told I would need a hysteroscopy and the appointment came within two weeks. I got that feeling of dread when it came, why was it being rushed through so quickly? Within 5 days of the procedure, I was called by an oncology consultant. I knew it was bad news.
Her words were ‘it’s not good news’ and as soon as I heard that, I literally felt like I was swallowed up, I didn’t want to hear any more. I was tired and I hadn’t eaten, ‘we found what we think are precancerous cells, and you’ll need to have a hysterectomy.’
I heard the ‘pre’, and then I hear the words hysterectomy. I kept telling her ‘my brain isn’t working right now, I don’t really know what you are saying. Can I get a copy of the results?’. She said sure but it won’t change the results of the situation. I didn’t like the way she was speaking to me. Then she introduced the CNS (Clinical Nurse Specialist), and she says something about getting free medication because of a cancer diagnosis. I was so confused, they had told me it was ‘pre’, I didn’t understand what was happening. I showed her the results, which said something like ‘possibility of adenocarcinoma’.
She told me we won’t know for sure until after the hysterectomy. There’s a 20% chance this is cancerous. I said, ‘Great, an 80% chance it isn’t cancer’, then she goes on to say, ‘that’s a high chance of cancer’.
I felt like I wasn’t being given a choice, or any time for the news to sink in. Normally I would have someone with me but my mum was in Jamaica at the time. I just thought I would be getting results; I didn’t think I would have all of this thrown at me in one appointment. Everyone I had known with cancer had died, I had an 18-year-old daughter, and my brain was a mess.
I felt like I was being treated like a number, just added to the hysterectomy list, I was only 42. I left the appointment and rang a friend straight away. She said, ‘hold on and stop a minute, take a breath.’ Standing outside Ealing hospital, I took a breath and burst into tears and collapsed on the floor. Telling someone else, who was able to stop me and give me a minute for it to sink it, let it hit me. I cried buckets.
I read everything online, joined support groups, dipped into every resource. It helped me feel less alone, there were lots of other people going through it too. Some had great consultants, and others didn’t, with no bedside manner or space or empathy. That helped me decide I needed a second opinion.
For my second appointment, I went prepared. I had a sheet of paper of things I wanted to happen- an MRI scan, a second opinion, to get information about any other possible steps. The consultant removed her glasses and tutted at me and said ‘yes, we can get you a second opinion, but I told you everything you needed to know.’
I went to Hammersmith Hospital for my second opinion, and my next consultant took his time explaining everything to me, drawing diagrams, showing me my scans, literally holding my hand through all the information I needed. He asked about my lifestyle, if I wanted more children, how I felt etc. It was a holistic assessment, and like I was finally being treated like a human being with feelings.
He was 99% sure that I had the early signs of cancer, not aggressive, and he said I had the option of taking progesterone if I wanted to have more children, or having a hysterectomy. And from that appointment he would book me in again in a week to discuss it. He said, ‘no one can make this decision except for you’ and gave me back my autonomy.
I had the hysterectomy and overnight went into surgical menopause. I felt like a train crash. I was very emotional, physically weak. You wouldn’t think that surgery like this would affect your whole body, but it did. I was sent home the next day with 52 injections to take daily. I couldn’t do the injections myself but luckily my mum was home with me, a retired nurse. I had all of the menopause symptoms to deal with- hot flushes, night sweats, anxiety, simple anxieties without any justification, unknown anxiety, palpitations, paranoia. Things I hadn’t experienced before.
When I went back after the surgery, he said the results confirmed this was cancer, caught at the early stages. I burst into tears and then laughed. He asked if I was okay. It’s hard to explain but I was just so happy ‘I’d had cancer’, just glad I had made the right decision and the surgery was the right thing to do.
It was a surreal time, the notes say ‘keyhole surgery and up and running in three weeks’. At the end of three weeks, I was only just coming back to reality, just managing the pain. I couldn’t go back to work. In the end, I had a year off work and made some really transformational changes, one of which is now work for myself. The experience really empowered me to focus on myself and what is important to me. It gave me the power to be joyful about the rest of my life, and I hope I can pass this on to others.
If you’re worried about any symptoms you have spotted, or if you’re been diagnosed with a gynaecological cancer, our nurse information service, Ask Eve, is here for free information and advice. Get in touch on nurse@eveappeal.org.uk or on freephone 0808 802 0019.