Ovareactions

Just two weeks after my surgery, I was on my way to Charing Cross Hospital to meet with Professor Seckl and his team. A trip to London usually equalled fun, but there was a different sort of anticipation for what was to come on this journey.

Meeting new doctors is always nerve-racking. What are they going to be like? Am I going to like them? Are they going to listen to me? It goes without saying that a good relationship with your medical team makes a huge difference to your experience as a patient. Having recently been at the receiving end of a not-so-positive medical experience, I was understandably nervous.

Thankfully, I was quickly put at ease as I met my specialist nurse, Sadie¹, for the first time. The amount of new information you have to take in after a cancer diagnosis is overwhelming, so having a friendly face to help break everything down is a big help. We were introduced to one of Professor Seckl’s registrars, Amy, who explained why I’d been dragged all the way to a specialist centre in London.

“You may have already been made aware that this is quite a rare cancer. In fact, a really extremely rare cancer.”

I couldn’t just get cancer could I, I had to get a weird one. Amy asked me to take her back to when I first realised something was wrong so she could record my story. One of the (many) strange things about having a rare cancer is that you’re a living, breathing case study. Medical professionals are fascinated by you. At least I can take some comfort in knowing that every case, including mine, plays a small part in helping the development of research for future prevention and cure.

After I’d finished regaling the events of the past few weeks, Amy explained how the team would come to a decision on the next steps of my treatment:

• The type of cancer and how aggressive it was. Because mine was the highest grade which suggests rapid progression, chemotherapy would be necessary
• The stage of the cancer. Because my stage was 1C, this was enough to concern the team that there might be microscopic cancer lurking somewhere that needed blasting away with chemotherapy

Understanding why certain decisions were being made was incredibly helpful. I was also reassured by Charing Cross’ ‘quality control’. They would do their own biopsies on my samples and their own imaging, just to double check that their findings were the same as City’s findings before they made their final recommendation.

All the talk of chemo still felt surreal. In my head, chemo was for really sick people. I didn’t feel like a really sick person. But I was. Amy explained I’d be treated with BEP chemotherapy.

“Errrrm, so it’s relatively intense treatment…”, she said as she started reeling off some of the side effects. She was very clear that I could opt out of treatment. “It’s your body, your decision.” The alternative would be surveillance, where I’d be very closely monitored for anything suspicious. When faced with a recommendation from experts, backed up with facts and figures, it didn’t really feel like a choice. I knew I’d never relax knowing that there was a much higher chance of the cancer coming back and that I’d never forgive myself if I’d decided not to treat it when it was at its most ‘treatable’. Knowing what I know now, I’m not sure if I would have made the same decision.

My head flooded with yet more new information, I was sent on my way for a blood test to check my tumour markers and to screen for anything that could prevent me from starting chemotherapy, such as HIV or hepatitis. I remember saying to the nurse taking my blood, “I should be used to this by now.” She responded, “I don’t think you ever get used to it.” She was right.

And then it was a meeting with the legend himself, Professor Seckl. I’d heard so much about him by this point that it felt like I was meeting a celebrity. Ultimately, this man had my life in his hands.

Just like Amy, the Prof (as he’s now affectionately called in our family) was quick to highly recommend chemo as the next step. He’d actually co-authored a paper titled “Can we replace adjuvant chemotherapy with surveillance for stage 1A-C immature ovarian teratomas of any grade?“, so it’s safe to say he knew what he was talking about. As Sadie handed me a pile of literature about BEP chemotherapy, the Prof warned me that reading through it would most likely ‘terrify’ me. He drew my attention to a few potential side effects in particular:

• Hair loss – it was pretty much a guarantee that I’d lose my hair from top to toe. I felt surprisingly calm about this. Yeah, it was shit but I knew it wasn’t permanent
• Immune system suppression – this is one of the biggies when you’re on chemo. Your ability to fight off infection plummets. If you get a temperature, you can’t just pop a couple of paracetamol and hope for the best. It’s a trip to A&E. As the Prof beautifully put it, “If you think you’re tough and you ignore it, you could be dead within a few hours.”
• Tiredness – as treatment goes on, you get accumulatively more exhausted. Sleep is everything during chemo
• Nausea and vomiting – traditionally, this is what people associate with chemo. But anti-sickness drugs are so good now, that this is barely even a side effect for most people these days. I was assured that 95% of people sail through BEP without any sickness, and as long as I avoided eating heavy, rich foods, I should be one of those people
• Hearing impairment – this was one of the side effects I was most worried about. My ears weren’t great anyway; I get a fluid build-up in my right ear that muffles sound, so I really didn’t fancy adding anything else into the mix. The main issue people report is high frequency loss, meaning they find it difficult to distinguish between different sounds in a loud space. This damage is permanent and can even result in the need for hearing aids
• Nerve damage – this usually presents in the form of numbness and tingling in your fingers and toes. Thankfully, it does go away with time
• Lung damage – bleomycin, the B in BEP, has an effect on the lungs. If I developed a dry cough or got short of breath at any point during treatment, I’d need to flag it straightaway so they could stop this drug completely
• Itchiness – good old bleomycin again making your skin itch. I was warned not to scratch it under any circumstances. Because my skin would be so sensitive, I could permanently damage it with scratch marks
• Temporary menopause – the combination of having an ovary out and chemo would mean it was hot flush central for me for a while. One of the big questions, which I’ll talk about in more detail at some point, was how this would affect my fertility. I was assured that my period would come back a few months after finishing treatment and that the success rate of having a baby was still 80%. It would also mean that I’d go into actual menopause about 3 years earlier than average. The fun never ends being a woman
• Death – “And it is possible for the treatment to kill you! I have never killed anyone with this treatment, apart from…” The Prof reeled off a couple of examples of people who’d unfortunately suffered fatal complications due to the treatment. Of course, it was absolute worst case scenario but everything suddenly felt very real and terrifying

So, just a few side effects to contend with then. Stay tuned to find out which ones I was blessed with!

The Prof went on to talk about the treatment schedule. Again, it was all moving quick. They wanted to start next week. I’d spend 5 days in hospital, go home for the weekend, then come back in for more treatment as a day patient for the next two Mondays. And then it would start all over again. And again. The hope was that if the team at Charing Cross were happy with how I responded to treatment then I could have the rest of it delivered in Birmingham. I was also given the option of having my treatment privately or on the NHS. The only real difference if I went private was that I’d get my own room and might get nicer food. I opted for the good old NHS.

And that was that. I signed my life away on the consent form and off me and Lambros went, trying to process a million things. In 4 days time, we were supposed to be getting married. Instead, we would be travelling to Charing Cross, ready for me to start chemo the next day.

¹ Some names have been changed.