ruth garvey & ailsa malcom
When I was younger, I was told that my aunt was ill. I was too young to really know what was going on at the time, other than that it was serious. As I’ve grown up, I’ve learned more about how serious the situation really was; not only did my aunt have cancer, but she had a very rare and aggressive form at an unusually young age. This cancer took the form of glassy cell carcinoma of the cervix – something that most people I have encountered, including doctors, haven’t heard of. While I try to speak to as many people as possible about this specific type of cancer, to raise awareness of it, I realised I had never really spoken to the one person who knew the most about it, my aunt. So, for Gynaecological Cancer Awareness Month, I have asked her a few questions about her experience…
Can you tell us about when you were first diagnosed with cancer?
The period leading up to my diagnosis was pretty awful – a persistent and draining battle with my GP for answers. The answer I was looking for was the reason behind why I couldn’t seem to get pregnant; I had been trying for over a year with no luck. So, I went to my GP, but he barely lifted his head and mumbled that I most likely had polycystic ovaries – not a convincingly thorough assessment. While trying to come to terms with what this meant for my chances of conceiving, I waited patiently for a referral letter. I waited six weeks at first before chasing it up, to which I was told that he had forgotten to refer me. Amazingly, he managed to forget a second, and then a third time. Eventually, I managed to secure an appointment at the local fertility clinic, at which, the nurse carried out a routine smear test – fine by me. But the colour drained from her face and she left the room, shortly returning with three doctors to tell me that they would be carrying out biopsy. She then held my hand and stroked my hair. That was 1 June 2004. Two days later I was diagnosed with cancer.
If only my GP had really listened, that date could have been much earlier. I saw him a few months later, as the large scar caused by my hysterectomy was causing severe pain - he sheepishly told me that he had ruled out cancer when I went to see him, as I was ‘too young’.
Before you were diagnosed, did you experience any unusual symptoms?
At the time of diagnosis, I didn’t think I’d experienced any real symptoms other than abdominal pain. But looking back, I realised I had been feeling pretty poorly and exhausted without realising. The symptoms crept up on me. I had lost a lot of weight at the time, relatively fast, but I was trying out another fad diet, keeping an eye on what I was eating and exercising regularly – I thought I had cracked the secret dieting formula and put it down to that. My periods had always been irregular and heavy as hell, sometimes lasting weeks – so I wasn’t too suspicious when this started to include fainting spells and nausea. One of the most frustrating things about that time is that I was so concerned with the idea of polycystic ovaries, and the possibility of never having children, that cancer was the last thing on my mind.
Not many people have heard of the cancer that you were diagnosed with, can you tell us a bit more about it?
I was diagnosed with glassy cell carcinoma of the cervix. It’s a very rare type of cervical cancer which, unlike most, is not related to the HPV virus. This means that it can develop at a much younger age and is harder to spot, as smear tests are generally only offered to women over the age of 25, and women under the age of 25 are often not taken seriously – as I wasn’t. I wasn’t too aware of this information at the time, because I didn’t want to be. To me, there are two types of cancer patients: those who research every aspect of their illness and treatment, who will know what is going to happen and when, and which colour pants to wear for luck, and then there are those who would rather squeeze their eyes tightly shut and hope for the best. I was the latter of the two. This got me through emotionally, because if I had seen what was online – an extremely poor prognosis – I can’t help thinking that I would have thrown in the towel and booked my own funeral (horses, everyone in fancy dress and then throw me overboard out at sea).
I had only had a 5 – 10% chance of survival, something I was unaware of until my oncologist blurted it out excitedly after my latest MRI showed that I was finally in remission. He also told me that to that date, December 2004, I was the only person with a stage IV tumour and such poor prognosis to not only survive the cancer, but also the treatment.
Due to the nature of gynaecological cancer, there’s a risk that women don’t talk about it enough. Did you have much awareness of this type of cancer before you were diagnosed? And what advice would you give to encourage women to talk more?
Naively, I had zero awareness of any type of cervical cancer, or gynaecological cancers in general. At 27 years old, the only time it came up on my radar was when I turned up for routine smear tests. I would think about it for the few seconds that the test took, which would then vanish the minute I stood up, pulled up my pants, thanked the nurse and left. While I had obviously heard of cervical cancer, it was never really talked about and there was no education about it while I was growing up. My advice is to talk to anyone who will listen to you, someone who you trust to respect your concerns. If you don’t have anyone, find someone who has been through something similar who can guide you and advise you. Be open, talk to your GP and push them if you feel you have to. Try to take someone with you to any of these initial appointments because, not only will they be more organised than you and ask the questions you never thought to ask, you can both sneak off to the pub afterwards for a large G&T.
Do you think that there is enough awareness and knowledge of gynaecological cancers?
Unfortunately, no, I don’t. But I do think that times have changed massively since I was diagnosed, and they are continuing to change for the better. Thanks to charities such as the Lady Garden Foundation and Jo’s Trust, and the conversations that they are enabling and encouraging, there has been a lot of embarrassment removed from the topic. Nowadays, I see women and girls talking confidently about all aspects of gynaecological health, and it is a brilliant, brilliant thing. For a long time, breast cancer dominated a lot of media attention and coverage – it is really positive to see the growing awareness, research, education and funding also dedicated to gynaecological cancers. While there is still stigma attached to this intimate, and often sexualised, part of the female body, this is changing. And it needs to continue to do so, so that no woman or girl ever manages to slip under the radar of cancer detection due to something as small and insignificant as embarrassment (or a GP’s intransigence).
Can you tell us about the period after your diagnosis, and what helped you to get through this time?
The first evening after getting home from the hospital and being told I had cancer was the worst of my life – everything felt dark and desperate. Now that I knew cancer was in my body I was desperate to get it out, I was hugely aware of every minute passing without it being attacked or killed off somehow. I was unbelievably restless: if I sat down, I immediately wanted to stand up, if I lay down, I needed to sit up, if I turned off the light, I would get back up and switch it on… I cried, my family cried, my friends cried – I did the whole ‘why me’ thing. They pulled around me for the first few days, keeping me afloat until I was able to begin the procedure of treatment – something I took comfort in, as it meant I was finally able to start fighting for my life. This included MRIs, CT scans, biopsies, treatment plans, radiotherapy mapping, radiotherapy tattoos and more MRIs (did I mention I’m claustrophobic?). I said goodbye to long hair, I said goodbye to the chance of freezing my eggs, I said goodbye to the chance of being a mother. Chemotherapy started, then radiotherapy – I said goodbye to fruits and vegetables as they would apparently cause an unholy toilet situation. And I said goodbye to Guinness, which was really a step too far. But I had my family all the way through, and about 100 new pairs of pyjamas.
What was the most important thing for you in the fight against cancer?
My relationships saw me through – both old and new. I quickly struck up a lovely relationship with my oncologist, Dr Fernando, and his team. Dr Fernando would always have a different, cheery cricket themed tie on at every appointment – little things like this kept my spirits up, and this relationship was very important to me. He respected that I wanted to bury my head in the sand and allowed me to do so. I saw him every Monday morning at the start of a new treatment week and he would ask me if I was having the shits yet from radiotherapy, and would always be amazed when I said no – he told me I was a one-off, that I was doing amazingly, and that I would see him around the hospital in the week. He was kind, and I trusted him implicitly. This was part of my routine, and this routine helped to keep me focussed through treatment. My family came to every single appointment, radiotherapy and chemotherapy session – taking it in turns to sit on a hard, plastic chair next to me and pretending to be interested in whichever magazine was on the side. I honestly think I fought so hard for them, not so much for me. I just didn’t want to worry them anymore, and I didn’t want to give them any more bad news. There was only one possible outcome for me in my mind, and that is what I focussed on. Nothing else was an option.
You survived cancer, but it changed your life in many ways. Could you tell us a bit more about this?
I survived cancer, but it took a lot away from me. I lost my identity. I lost friends and relationships because people didn’t know what to say to me, so they just stayed away. I lost handfuls of hair and rocked a partial Bobby Charlton for a while. I lost my sense of taste and all flavour was just mud. I partially lost my hearing, and could barely feel my fingers or toes. I lost the chance to ever become a mother, and I will always wonder what my child would have been like. I look at my nieces and nephews all grown up, and I wish so badly that I had my own children who could be their best friends. That is the biggest and worst change to my life, having that decision taken away from me. In retrospect, my determination to become a mother may have saved my life – if I hadn’t wondered why I wasn’t able to get pregnant and tried to do something about it. Cancer strips you of everything, and you have to rebuild yourself from a pile of slightly wobbly crumbly bricks. But you do it because what else are you supposed to do? It’s not all doom and gloom, I gained a lot too. And I gained my chance at a life back.