The Womb of Shame

Or how it is still taboo to speak about endometrial cancer, when almost half of the world population has, or has had, a womb at some point in their lives.

After my cancer diagnosis, I only shared the news with a few people I trusted. I did not post anything on social media for over three months, I avoided any mention of my health or anything that could suggest something was wrong. And then, one day,  more than a month after surgery, I decided to take the plunge. It was late in January 2020, I had just registered for the Shine Night Walk, a charity walk through London that was supposed to take place this September. I had set up a fundraising page to collect donations for Cancer Research, and I decided that I would share my story on it – it felt like a safe place.

For the first time that night, I posted on social media about my cancer – sharing the link to my fundraising page and a long text about my own personal battle with cancer. I wrote in English, and I wrote in French too, fighting against myself to find the right words. 

It was a very private post. I wrote that I had had womb cancer, and that I had been lucky enough to only have needed surgery to get rid of it (fingers crossed). There was no mention of a hysterectomy, no mention of my reproductive organs, no mention of how it would affect my hormones or my body going forward.

I received a lot of support. So many messages started pouring in, so many well-wishers and concerned friends. When people messaged me separately, sharing their concern and checking up on me, I gave them more details about what had happened, but only if they asked.

It was very early in my grieving process. I had not really come to terms with what had happened yet, so I was not able to put it into words like I can today (not that I claim to have fully come to terms with it, not yet, not quite). However, I now realise that was only part of the reason why I did not give more details at the time.

There are some cancers that are widely understood. The ones that are often represented in mainstream media. There are visible cancers, there are the scary ones, there are the ones you cannot hide. And then there are the ones like mine, that people cannot see. The ones where you have no obvious physical proof that you have cancer – at least not at first glance. And then there are also the cancers that make people uncomfortable, because they feel they should stay private.

When I first shared the link to this blog, I received a message from a friend, who had only learnt about my cancer right there and then. That person was shocked and supportive. We spoke, and they asked why I had decided to share such private details about my body with the world, and whether I had considered that talking about my womb might make some people uncomfortable. The person who asked that question was a man.

The question was not meant in a rude way at all, he was not trying to be malicious. It was simple curiosity, and I answered it as honestly as I could. It did not come out of the blue, it was one of many questions he asked, because he was a bit taken aback by my decision to share details about something that is usually kept quiet. He wanted to understand why. It did not feel great to be questioned like that, but I understand where he was coming from.

There is an element of shame attached to talking about your health, about how you are not doing as well as people were expecting. Speaking out about parts of your body that are diseased, parts of you that you do not show to the world. Cancer comes with its own element of shame. It should not, but it does.

It is definitely exacerbated by the fact that there are some cancers you talk about openly, and there are some you do not hear about much. Had you ever heard about endometrial cancer before? Did you know it is the fourth most common cancer in women in the UK? I did not.

There is a particular stigma attached to cancers which affect your reproductive organs, because we do not talk about them much in public. Because the cancer was in my womb, some people may feel like I should maybe not talk about it as openly as I have, maybe the details should be kept private.

Would describing what happened to my womb and my ovaries really bother people that much? Should I maybe hide those details? Should I not post on Facebook about my hysterectomy, with the view of sparing anyone who might feel uncomfortable reading about my reproductive organs?

It is not just because of cancer. It is because I am discussing female organs, female issues that a lot of people normally avoid talking about. Take menopause for example. It is something perfectly natural that happens to so many of us. But people keep it quiet. Women themselves do not discuss it amongst themselves, they censure themselves out of habit. The effects of the hormonal changes to your body, to your mind, they are almost taboo. There should be no shame in talking about a natural process happening to a person’s body. But there is.

So many women have hysterectomies these days, not all due to cancer. And yet, I did not know anyone who had had one – or so I thought. When I started sharing my story, people started coming to me, telling me about how they, their friends, their sisters, their mothers had gone through something similar. But it had been kept private, hidden from view.

I realised that I had censured myself when I posted, back in January, about the ‘surgery’, with no further details. Whether consciously or unconsciously, I had refused to share the details with a wider audience. I had been afraid of offering a detailed description of what happened to an intimate part of myself. I was ashamed. And I am now ashamed of having been ashamed.

Who was going to see my posts, who would read my blog? Friends, family, colleagues, old acquaintances. People of all genders, people roughly around my age, for the most part. Out of those people, how many would feel uncomfortable? How many would stop reading because the words ‘womb’, ‘ovaries’ and ‘periods’ bothered them?

Would I have felt the need to censure myself if I had had a different type of cancer, one that did not affect my reproductive organs, like a brain tumour, leukaemia, pancreatic cancer? I know people who have had those cancers, and they talk about them openly, and do not worry about offending anyone. So why should I?

When I started this blog, it was with the purpose of sharing my story, of unveiling what had happened and not holding back the truth. I am going to talk about my ovaries, I am going to post about the loss of my fertility, about being a woman without a womb. I am going to tackle issues that women have been refraining from mentioning out loud for generations.

Men, women, non-binary people might read this, and might feel different levels of discomfort, for innumerable reasons. Family, friends, strangers, people who are related to me, people who know me and people who do not. They do not have to carry on reading, but I hope they do.

Cancer can affect pretty much every organ in your body. It does not discriminate, and we should not either. Let us discuss every form of cancer, let us discuss how it affects our bodies, whoever we are. Let us get rid of the stigma that some cancers are more shameful than others, just because they affect a part of us that has been deemed private for centuries.

My Cancer, My Rules

Something happened today.

It was nothing major. It was nothing that had not happened before. But it is something that always makes me terribly uncomfortable, that makes me want to run home and hide under a blanket for a couple of hours.

As a result of my cancer and the surgery, my body is no longer producing the hormones that are essential to women under the normal age of the menopause. Because I was so young when my cancer was caught, and because it was diagnosed at such an early stage, I was prescribed hormone replacement therapy (HRT). Most women who have had endometrial cancer will not be given HRT, as oestrogen can increase the risk of recurrence in many hormone-driven cancers. In my case though, the benefits of taking HRT would far outweigh the risks, so I was offered to start treatment back in February. Since the start of the pandemic, that has meant monthly calls to the GP, who renews my prescription over the phone, and trips to the pharmacy to collect it. I will need to keep that up until I am 51, the average age where a woman reaches menopause naturally in the UK. That is a mere 23 years of treatment.

I am terrible at renewing prescriptions, so I have dozens of alarms on my phone. I miss them, I snooze them, I end up asking friends to remind me to re-order my prescription. It is not time-consuming – usually a 5-minute phone call to the GP and a 3-minute visit to the pharmacy do the trick. Sometimes though, it gets exhausting.

When I rang the GP last week, asking to renew my prescription, the receptionist asked me what medication I wanted to re-order. I gave her the name, and her immediate reply was ‘Oh, if it is for contraception, you will need to speak to a nurse.’ No, it is not a contraceptive – my body took care of that all on its own, thank you very much. ‘It’s not. It’s HRT, hormone replacement therapy.’ A pause. ‘Ok, I’ll speak to the doctor about this.’

It used to be a trigger. The reminder that I no longer need contraception used to drive me to tears. Now, I just close my eyes for a couple of seconds and breathe deeply.

I nipped out at lunch today to go and collect it from the pharmacy I have been going to since my diagnosis. I pushed the door and waited my turn. A few people in front of me, a chatty new pharmacist, it took longer than usual. Since I am not one to make small talk with strangers, I expected that once my turn came, it would be over much more quickly.

I gave my name, my date of birth. And the eyebrows of the pharmacist shot up above his mask. ‘Is it hormone replacement therapy you’re here to collect? Sorry, what was your date of birth?’ I gave it to him again. ‘That’s really young to be on HRT – who have you spoken to about it? Is it your GP or…’

I had just popped out to get my prescription on my lunch break. I was not ready to give anyone my life story.

I get that he was genuinely surprised. After all, it cannot be often that a 28-year-old woman comes into his pharmacy asking for HRT. But the way he said it, it felt like my right to get HRT was being questioned. I felt the need to justify myself, and so I did, feeling terribly uncomfortable whilst uttering the words. ‘Yeah. I had cancer, I had surgery, and I’m now on HRT’, I said it as quietly as I could, mindful of the people who had come into the pharmacy behind me. ‘But did you speak to your GP only, or did a gynaecologist…’ He was not being as careful as me, his voice was strong and loud. ‘Yeah, I went to a specialist menopause clinic.’

I was annoyed, I was ashamed. I am open about having had cancer, but it is my story to share. I write about it on this blog, I tell my friends about it, I have opened up to more people than I ever thought I would, and it is my choice, I do it in my own time, when I feel like it. At 13.20 today, out on my 30-minute lunch break, I was not ready to discuss it. And I was not ready for the people in line behind me to get front row seats to my life story. But I was forced to do it, because of his questions, because of how insistent he was, because I did not have the energy to stand up for myself.

He went to the back to fetch my prescription. From there, he shouted: ‘You are not also taking the patches, are you? Because sometimes they can interact and…’

‘No.’ Just let me pick up my prescription and go, please. I did not say that, but I wanted to run out of the pharmacy and back to the safety of my flat.

‘Ok, so here it is. What dosage are you on, oh, it’s two pumps a day, isn’t it. Oh yeah, I can see there it used to be one, and now it’s two, the prescription was updated… Oh, do you pay for your prescriptions, or do you have an exemption?’

I was about to say I was exempt, when he interrupted me again: ‘Oh, of course, if you had cancer you must have a medical exemption certificate. Let me check, yes, we have it on our system, valid until 2025!’

And once again for the people in the back?

I am a private person. When I decide to open up, it has to be on my terms. When I muster up the courage to tell people I have cancer, it has to be my choice. When I resolve to explain what treatment has done to my body, I want to be in a safe environment, not in a pharmacy, in front of strangers. Even the 6-feet rule does not prevent anyone from hearing what is said loud and clear by an over-enthusiastic pharmacist.

I could not have run out of there any faster. I signed my name at the bottom of the form, ticking the ‘medical exemption certificate box’, took my prescription and made it out within seconds. Was I rude? Maybe.

Mostly, I was shaken. Within ten minutes, I had felt judged, exposed and patronised. I do not need my health, my private life to be discussed in front of strangers when I am picking up a prescription. The people behind me could have been anyone. They could have been my neighbours. They could have been clients, they could have been colleagues. I felt naked, which is pretty incredible considering I was wearing two jumpers, one on top of the other. I felt like I had no control. I started shaking.

I know hearing about my case might surprise some people. They might have questions, they might have opinions. They might want to discuss it at length But it is my life, and I will share it according to my rules. Maybe tomorrow I will pop by the pharmacy again and give that man the link to my blog. If he has any questions, there is a time and place for them.

It is my cancer, and I have earned the right to control my story.

From Diagnosis to Surgery, Part I

I got my diagnosis on 15th October, and it took another 65 days for me to have the surgery that would get rid of the cancer. The two months in between the diagnosis and the surgery were a blur. They went by so fast, and they dragged on at the same time. There were tears, there were delays, there were countless visits to four different hospitals, there were good days and laughs with friends.

As soon as I was given my diagnosis, I was told that things would happen at a quick succession. Before I had even been given the news at my local hospital, the gynaeocology oncology team there had referred me to the Churchill Hospital in Oxford for treatment. This was because of various factors, including my age, the fact I had never had children, and my raised BMI. I had been able to walk from my house to the local hospital, I would have to travel 40 minutes by train, then another 30 by bus, to reach the hospital where most of my appointments and treatment would take place. At that point, it did not even cross my mind that my friends would be so selfless and supportive as to offer to drive me there and back whenever they were able to. But they did.

When you are given your diagnosis, things are not always completely set in place, even in your doctors’ minds. There are so many steps, so many tests you need to have to stage the cancer before a treatment plan can be discussed. At the appointment I had the day after my diagnosis, with the gynaecology oncology team at my local hospital, I was given a list of the next steps. Many of the tests I could start having at my local hospitals, before the Oxford Multi-Disciplinary Team took over. The Multi-Disciplinary Team is the team of doctors and nurses who will plan everything for your treatment, from the scans and tests to the surgery and follow-up care. They are experts in their disciplines, from oncology to surgery to radiology, and they all work together to cover all aspects of your cancer, and make sure that nothing is missed and you are supported throughout. It is intimidating, to have a whole team of people discussing your case. It is also reassuring.

I had my first two scans at local hospitals. The first one was an MRI, in order to check for the local spread of your cancer. MRIs are not fun. I have anxiety, and the MRI process involves all of my worst triggers. I am uncomfortable in enclosed spaces, I am scared of needles (we do not have time here for a list of all my phobias, but there are MANY), blood makes me ill. For the type of MRI I had, they had to inject me with a contrast agent and a muscle relaxant. On top of my fear of needles, I have two further issues: I bleed very easily, and my veins are very fine. It usually takes them a handful of tries and a good few minutes to find a vein they can use, and I end up having bruises up and down my arms for weeks. It did not fail. After stabbing each of my arms half a dozen times, they finally found a vein they could use, and the MRI started. They gave me headphones playing some random, loud music. I had had an MRI before, I knew how noisy they were, but it… It is a lot. I closed my eyes, tried to focus on the music they were playing. I focussed on my breathing to prevent a full-blown panic attack. The scan took about 30 minutes, but it felt like hours.

The second scan was a chest x-ray. This is a scary one, but for very different reasons. The point of the chest x-ray is to check whether cancer has spread to the lungs. If it has, it is not usually a good sign. The doctors had told me they were not expecting there to be any signs of metastasis, the medical term for when cancer has spread to parts of the body that are farther away from where it originated, but they have to make absolutely sure before they start the treatment plan. I do not mind x-rays – I have had my fair share of broken bones and ankle sprains, so I had them regularly all through my childhood and teenage years. I think the whole test, from my registering at the front desk to putting my clothes back on after the scan, took about ten minutes. Once the MRI and chest x-ray were done, all there was left to do was wait for the multi-disciplinary team to review them, and confirm their findings in an in-person appointment in Oxford.

It is a long wait. You have been told you have cancer, you have been told the grade, which describes how different the cells look under the microscope compared to normal, healthy cells, but you are still waiting for what they call ‘staging’. The stage of the cancer describes how far it has spread in your body, and what each stage means will depend on the type of cancer. The vast majority of women diagnosed with endometrial cancer are Stage 1, where the cancer is confined to the uterus and has not spread to any lymph nodes, nearby or distant organs. Fortunately, I was amongst these women. Later, they would tell me that they believed that my cancer would be Stage 1a, where it is confined to the lining of the uterus (the endometrium) and has not grown more than halfway through the muscle of the womb. This initial staging was not definite – the final staging can only be done after surgery, after a thorough examination of the organs that were removed.

At the same time I was having these tests (they both happened within ten days of the original diagnosis), I had also been referred for genetic testing. Because I was so young when my cancer was discovered, the doctors were worried there might be some previously-undetected genetic condition running in my family that could predispose me to having endometrial cancer, and possibly some other types of cancers as well. It was more likely that my cancer was random than due to a genetic condition, but they still thought it would be best to check. If there was a genetic mutation, it was likely to affect other members of my family as well, and they would also be more at risk, and would need to get tested and monitored. I quickly received a letter confirming an appointment with a genetics specialist – scheduled for a few months later, in February. In the meantime, they had given me forms to fill in about my family history and background, including any cancers in siblings, parents, aunts and uncles, grand-parents, etc. It is a very thorough questionnaire, and it gives you a lot to think about. Ethnicity, geography, genealogy, a lot of things apparently play a part in your genetic makeup. There is thankfully no clear history of cancer in my family – we have had a few family members diagnosed with various cancers over the last few years, as most families will, but no obvious pattern to discern. The one unknown was on my father’s father side, as that is a branch of the family we do not know much about. But I took it as a good sign, and tried to put it at the back of my mind. Whether the cancer was random or genetic, the treatment plan would be the same at this point.

I had my first appointment with a doctor from the Oxford team. Because I had been referred by a hospital in another county, they wanted to give me all the information again, explain what the treatment plan was going to be in detail, and carry out a quick physical examination. The same friend who had come to my appointment with the local team came to this one, driving me there and back and distracting me as much as she could in the waiting room, asking silly ‘would you rather’ questions and discussing random work issues.

The waiting room in the oncology ward at the Churchill Hospital is scary. It is huge, it is always full. At my local hospital, I was in the waiting room for the gynaecology and obstetrics department. I was surrounded by pregnant women, by happy couples and friendly faces. In Oxford, I was sitting in a room full of people like me, people who have just been diagnosed, and people coming in for further treatment. I remember looking at every single face in that room, in the hope of finding someone my age, of catching their eye. I felt young, young and terrified.

The doctor I saw was fantastic. She explained she would be part of my team, she drew diagrams to explain what was happening inside my body, what the scans had revealed. She was really reassuring. She went through the treatment plan – surgery first, and afterwards they would assess whether further treatment would be needed based on the surgery findings. Any further treatment would probably consist in a number of targeted radiotherapy sessions, to prevent local recurrence. The thought was scary, but it felt good to know there was a plan in place ‘just in case’. The doctor opened her diary, and told me we would book in a date for the surgery there and then.

I had been told it would be quick. We were looking at about three, four weeks from the date of that first appointment. So, there. It would be on a Tuesday, the third of December. That would leave enough time for me to speak to a fertility specialist, to attend my pre-operative assessment, to have one last appointment with the surgeon who would be leading the team operating on me. We pencilled it in, and just like that, I had an end date in sight. I then went into a room with the nurse on shift, where I was free to ask any questions I had. I asked about work – how long would I need to be off for after the surgery. I asked about how soon I could be expected to move around after the surgery. I asked practical and random questions which I had been thinking of for weeks. Reassured, we left the hospital. I am not a hugger, but a I had very long hug with my friend just outside the hospital.

I was relieved, I was focused. I felt now that I had a date in a diary, I had a goal. I had a plan. I knew what the next few weeks would be made of, and I had a clear end date. The third of December. About three weeks after surgery, they would call me in, to discuss the results of the operation, give me the final staging, and provide information about any further treatment. That would be around Christmas-time. That meant that by New Year’s, by the time 2020 started, I could be cancer-free, and well on my way to recovery. Four weeks after the surgery, I would probably be able to walk around, and spend a nice night out with my friends (but still be in bed by 1am, because I was already a 27-year-old grandma). I was relieved, and strangely excited. Things were happening, and I felt settled, for the first time since the diagnosis. My friend drove me back. Before dropping me off at home, she asked whether I wanted to go to Hobbycraft, and do some early Christmas crafts shopping. I bought so many things, an endless supply. I have always loved December, and I would be stuck at home, off work, for my favourite period of the year: the lead-up to Christmas. I would get so many crafts done, I was already looking forward to it. No better way to recover.

I received letters for my pre-operative assessment and meeting with the surgeon very quickly. They would take place in the last two weeks before the surgery. I was still waiting for the appointment with the fertility specialist, and that would not come until the very last minute. I have already spoken of this experience in my post ‘Fighting for my Right Not to Have Children’ so I will not repeat it there. It was a stressful time, a time where I felt my wishes were not being taken into account. The lead-up to the surgery was not the most pleasant.

The pre-operative assessment went without a hitch. I was declared healthy, there were few concerns – at least, once my stress levels went down and my heart rate finally fell under 100bpm. Did I mention I do not like hospitals and am a very nervous person?

For my meeting with the surgeon, I went on my own. I would face this waiting room in Oxford by myself for the first time. I had taken some knitting with me – I was knitting a blanket for my friend’s baby. As I sat knitting in the waiting room, different people, patients like me, came to talk to me, admire the softness of the wool, discuss my (very poor) knitting technique. I exchanged smiles with strangers, told them about my nan teaching me how to knit twenty years ago – and having to learn it all over again in my twenties, when I no longer considered it lame.

The appointment itself was quick and underwhelming. After an hour on the train, directly from work to Oxford, then a congested bus journey, I sat for two and a half hours in the waiting room. I made a lot of progress on my knitting project. When I finally was called in by the surgeon, we maybe had a 5-minute conversation. He wanted to make sure everything was fine, and I was still happy about going ahead with the surgery, which by then was only six days away. He asked me whether I had seen the fertility specialist yet, I said no, explained what had happened. He reassured me that the person I would speak to would give him their report immediately after the appointment, so that we could go ahead with the surgery, knowing that everything had been discussed, and was all in order. And then he shook my hand, and said ‘See you next Tuesday.’

The appointment with the fertility specialist was at the John Radcliffe hospital, also in Oxford. A few friends had offered to come with me, in case I needed support to make my voice heard, to tell them that I had decided not to preserve my fertility, that I was not interested. I declined, saying I wanted to do it on my own. They had also missed enough days of work because of me. I spoke to the fertility expert. I declined fertility-preservation options. I agreed to donate some of my ovarian tissue to science – so they could carry out research on how to preserve the fertility of young women undergoing chemotherapy or radiotherapy. They reassured me that my tissue would not be used to create life.

That was the last of my appointments. I went home. I had one last weekend to myself, and I had made sure to have plans. I went to the Barbican on the Saturday, to see a production of The Taming of the Shrew where all the roles had been reversed. It felt fitting in my situation. Women in power, women in control of the world and their own lives. I laughed, I smiled throughout. I walked through London on the way back, taking in the early Christmas decorations and the smell of cold in the city. I did not do much on the Sunday. I cooked, prepping and freezing meals for when I would not be able to, a few days hence. I spoke with my mum, I spoke to some friends.

I was off work on the Monday, and I waited at home for my dad to arrive. He was driving over from France, and would stay a week, until I was mostly recovered from the surgery. His partner had undergone a similar operation a few years before, so he knew what to expect. I was scared – it would be his first time driving in the UK, coming straight from the ferry in Newhaven. Of course, I had told him to text me when he set foot the UK and he did not, so I spent the morning worrying that something had happened, that he had been in an accident. In a way, it was helpful to worry about something other than cancer. But he made his way over, and I got to give him a tour of my town, take him for a beer and fish and chips at the pub – obviously, I was not drinking before the surgery, but I did enjoy my elderflower cordial. It was nice. It felt very strange, because we were never that close, and I cannot remember the last time I spent any time one on one with him before that day. We went home, I inflated an air bed for him, and I set my alarm for 6.30am the next day. We had to be in Oxford by 10am, and I did not want to risk being late.

I barely slept. I was too nervous, worried at the idea of finally having the surgery that I had been waiting for for months. On the way to the hospital, my dad’s driving allowed me to focus on something else for a while, so scared was I that he would suddenly change lanes on the motorway, reverting to his French habits. My phone kept going off in my lap, with messages of support and love from friends, family, colleagues. By the end of the day, I would have had the surgery, I would be waking up free of cancer – hopefully.

We parked at the Park and Ride and got a taxi to the hospital. I checked in, and we were told to wait. We settled in. I had booked a hotel room for my father close to the hospital. After thirty minutes, I was called in for a couple of tests. Back to the waiting room. I had a few books with me, along with a dressing gown and fluffy bunny slippers, as required by the hospital. I got halfway through my first book before I got called in again, this time to speak to the anaesthetist and sign consent forms. I had been fasting since the night before, as requested. I went back to the waiting room. We waited. And waited.

At around 2.30pm, I was called in, out of the waiting room and into the ward again. There, I was told that the surgery before mine was taking longer than expected, and it would be a while longer still. I was allowed to have a glass of water – it was clear the surgery would not happen for another couple of hours. I was exhausted, I was hungry, I was frustrated. I am not very patient in the best of situations, but particularly in these circumstances.

It was getting dark outside. Finally, at around 5pm, I was called in. They said my dad should come with me. I did not think anything of it, but maybe I should have. My surgeon and the doctor I had seen at my first appointment in Oxford were both in the room. They looked at me and told me to sit down, before apologising. I said it was fine, that I understood things could sometimes take longer, that I did not mind the wait. But that was not what they were apologising for.

They had tried to find a bed for me, for when I would come out of surgery, but there were none available. Why, I am not sure, I did not hear their explanations. All I heard was that it meant that, even though they would have been happy to operate on me, the surgery would not take place. It would not be feasible. I broke down in tears. I was hyperventilating. How could that be possible? I had waited for months. I had waited for a full day within meters of the operating theatre. I had been told it would happen, I just had to wait a bit more, another couple of hours. I was dehydrated. I was exhausted. I could not think straight.

I remember my dad, sitting quietly in the corner of the room. He barely speaks English. He had no idea what we had been discussing. I had to play the role of the patient and the interpreter at the same time, and explain to him, in French, that we had come for nothing. He was livid. He was so angry. He started complaining, asking me to relay his frustration to the doctors, tell them it was absolutely unacceptable, it was inhumane. I was trying to calm him down, I was trying to keep it together. I could not. I was completely spent.

The surgeon told me my hysterectomy would be rescheduled. I had assumed it meant it was delayed by maybe a couple of days, it would happen layer in the week. No. It was to be rescheduled for more than two weeks later, on the 19th of December. I could barely comprehend what was happening, I was in the middle of a panic attack, again.

I was crying, telling the surgeon that my dad had come especially from France for the surgery, that we could not delay it by two weeks. I was terrified, terrified that in two weeks the cancer would spread and it would affect my prognosis. I was not coping at all. I was trying to negotiate, without any idea what I was doing. It was never going to work.

After a while, I had no energy left. I felt drained, I just gave up. Said thank you, said we were leaving. They said they would be in touch, I would receive a letter confirming the time I would need to show up to the hospital on the 19th of December. I would be scheduled first on that day, to ensure the surgery would take place this time And then we left. I asked my dad to text my mum to let her know. And on the drive home, I was telling everyone who was asking for news that it had not happened. Reliving it, again and again.

We got home. We went for dinner. My dad ate, I did not. We decided he was going to go back to France the next day, back to work, so as not to waste a couple days of annual leave.

My colleagues at work were having our department’s Christmas party that night. I kept thinking about it, wishing I could be with them, resenting the fact that that opportunity had been taken from me – and all for nothing. In the grand scheme of things, a silly Christmas party did not matter. But I needed to be angry at something petty.

I went to bed early. In the morning, I would deal with the admin side of things. Telling my manager. Rearranging my sick leave. Trying to see if someone could be there with me for the second surgery. I was exhausted at the very thought of it.

Reclaiming My Body

Surgery took away some of my organs. I lost the hormones I had relied on for years. Cancer started, and spread inside of me for months, possibly even years, and I did not notice. How can I trust this body? How can it ever feel like mine again?

Womb cancer, or endometrial cancer, happens most often in older women who have been through menopause already. The most common sign that something is wrong is unexplained bleeding. Because I was only 27 when I was diagnosed, I attributed any bleeding to irregular periods, which I had had ever since I first went on the pill as a teenager. I had flagged this up to a gynaecologist before leaving Paris back in 2014, and I had been told it was no cause for concern, it was quite common actually. It would take years for me to bring it up again with a doctor, which prompted a series of tests which eventually led to my diagnosis. Along from bleeding, some women with endometrial cancer also experience pelvic pain, which helps them realise something is not quite right. I never felt anything.

I have always had a high pain threshold. And I mean, very high. I once knelt on push pins that had fallen to the floor (I was a messy kid), and only noticed something was wrong when blood started seeping through my jeans. I played tennis with damaged ligaments, and only went to A&E after my foot turned blue. I could put my hands over a hot plate and not feel any pain.

After my hysterectomy, I did not need any painkillers. In the hospital, I only asked for them once, in the hope that they would help me sleep when the constant beeping of the machines kept me awake. When I was discharged from the hospital, they gave me a large box of codeine tablets, to take whenever I was in pain. They are still in my bathroom cabinet as I write this post, ten months later.

Now, I cannot help but wonder if my resistance to pain prevented me from seeing something was wrong. Had I felt pain, maybe I would have gone to the doctor earlier. Maybe they would have recognised the signs, maybe I would have been diagnosed more quickly. It would not have changed much – luckily, my cancer was caught at a very early stage anyway. But you cannot help but wonder what if, and blame your body for betraying you.

When someone gives you the unexpected news, so many things go through your head as you try to process it. So many feelings, some of which you can describe, some of which you have no words for, as you have never felt them before. I had this thought though, this disturbing but unrelenting idea that I did not know my own body. After all, cancer had been developing inside of me for months, maybe longer, and I had had no idea. Something sinister had been happening inside my body, something was growing and spreading, and I had not been able to tell.

You cannot see your womb. There is something incredible about your existence being threatened by a part of you you cannot even see. It is a silent, unnoticeable threat. There is nothing you can do about it. You cannot locate the cancer in your body. You cannot pinpoint the exact spot where something is happening. For someone like me, who likes seeing and experiencing things first-hand in order to understand them, it was mind-boggling.

I have never had the best relationship with my body. I have put it through hell, I have gone from one extreme to another, I have hated it at times. But that was the last straw. I had no trust left for my body. I had been betrayed by a part of me, by cells and organs that made up who I was. For the very first time, I realised I truly had no control.

Treatment only made that worse. Surgery is hard on the body, in many different ways. For me, it was the only real option if I wanted to live. So I accepted it. I was peace with it. But still, it felt like it was being forced on me. My organs were going to be literally ripped out of my body, and I had no say in the matter. Was it even still my body, since I could not control what was happening to it?

After surgery, I struggled physically. So many things I used to take for granted, I could no longer do. Small things I was not allowed to do, like lifting a kettle or bending over to tie my shoes. Sitting up without using my arms, which my body now simply refused to do.

The loss of hormones which accompanied the removal of my ovaries did not help. Suddenly, I would find myself crying, and unable to explain why. I would feel weak, I would feel hot. I had headaches which lasted for days. I had strange pains in my muscles, my body was doing its own thing, I would wake up cold and drenched in sweat. I would feel hungry, and then could go days without eating.

To get through it, I detached myself from my body entirely. I convinced myself that my body was going through something, but my mind was on a different path. My body was weak, it was diseased, but my mind was going to be fine, it would stay strong.

It is freeing, but it is also terrifying. There are days where I look in the mirror and I do not recognise what I see. Where I cannot make the link between my body and the image I have of myself.

I am working on it. I am now aware of every single thing that happens in my body. A twinge here, a tremor there, I am conscious of everything, but I cannot tell what is causing it. There is a disconnect between my mind and my body. I overreact about every sensation in every part of my body. If I was not able to tell the signs the first time around, I should now try and listen to every signal it is giving me, should I not? I feel afraid of my own body, of how it could be letting me down at any second.

But it is my body, and I hope to have it for many years to come, so I have to reclaim it. I have to make it feel like mine again. I might not have been in control of what happened to it a year ago, but I now hold the reins of what is left of it. I keep experimenting with my hair, because I feel lucky I was able to keep it throughout the last year. I cut it, I shave it, I bleach it, I dye it. It is all mine. I got a new tattoo, I have plans for more. I did not choose the scars on my belly, but I get to choose these ones. From now on, the marks I make on my body will be all mine.

I barely flinched when getting my latest tattoo, but I felt it. It was a slight pain, a twitch in my arm, but I felt it, and it was amazing. I knew where the pain was coming from, what was causing it, and I was the one who had made that choice. I had control. I could have stopped it at any moment. My body and my brain were connected for a while, and it was my own doing.

It is both beautiful and terrible. You should not have to cause yourself pain in order to reconnect with your body. For months after getting that tattoo, I kept tracing the raised lines over my arms, the scars which were giving me comfort. When they disappeared, as the tattoo finished healing, I felt a deep sense of loss.

I have taken to wearing different clothes. I used to always be hot and wear short sleeves. Now I wear huge jumpers, just to feel warmth around my body, to surround it with something I can touch every time I move. I wear trousers, when I always wore dresses. You can feel trousers against your skin, you can feel your body moving with them, straining against them as you change positions. I wear rings every day, just to stay aware of my fingers.

It is not an easy road. I do not make these decisions on purpose, all the time. It would be exhausting. I think my brain found a way to tell me what my body needed, without me being aware of it.

I need to listen to it. To all the signs. I cannot understand them, not yet. Every feeling, every sensation that I do not control causes fear. But I have a support team. I have a nurse who I can call when I am worried about symptoms. There are doctors who can tell me what is happening, who can reassure me. It is normal. My feelings are normal, my reactions are normal, my body is normal again, as far as they can tell.

It will need some getting used to. I hope one day, I no longer need people to help me understand my own body. But in the meantime, I will keep on learning to take care of it, so that we can support each other, me and this body that I am reclaiming.

Getting Diagnosed

Most people in the UK get their diagnosis through the ‘Two-Week Wait’ referral. Mine took eight months.

  • FEBRUARY 2019

    I registered with a GP for the first time since moving house the year before. I had mentioned to friends I was not registered with a GP and they were appalled and convinced me to do it – just in case something happened.

  • MARCH 2019

    Once I was registered, I booked a routine check-up, just to see how things were. I mentioned my irregular periods to my GP – at that point, I had them every couple of months, sometimes they were even more spaced out. My GP was not concerned, and told me I showed signs of PCOS – Polycystic Ovary Syndrome, a very common condition that affects many women in a lot of different ways.

  • APRIL 2019

    A blood test confirmed my hormone levels were a bit all over the place. There are three main symptoms for PCOS: irregular periods (check), abnormal hormone levels and polycystic ovaries. You only need to have two of those three to be diagnosed with PCOS. A blood test confirmed my hormone levels were a bit all over the place. My GP had also referred me for an ultrasound, to check for symptom number three.

  • JUNE 2019

    I went for the ultrasound – I had always thought ultrasounds were for pregnant women only. The ultrasound technician was very friendly, and by the questions she asked me, I could tell the ultrasound was confirming the diagnosis. I had to wait a week or so for the results, which then came through a phone call from my GP: the ultrasound had confirmed the diagnosis, I officially had PCOS. However, the ultrasound had also picked up on a small abnormality in my womb, which seemed to suggest a blood clot (from irregular periods) or a small benign polyp. I was told to have another ultrasound after six weeks – if it was a blood clot, it was likely to have disappeared by then. If it was a polyp, then I could be referred to a gynaecologist to remove it – very common again, and not worth worrying about.

  • JULY 2019

    I went for my second ultrasound. The lady who did the examination was not as calm and reassuring as the first one. She mentioned she could see an abnormality, which she believed could be a polyp, or could be endometrial hyperplasia, which is a thickening of the lining of the womb. It is fairly common, especially in women with PCOS, and in some cases can lead to cancer after many years. In other cases, it is completely benign, and might resolve on its own without treatment.

  • AUGUST 2019

    I came back from a week of holiday to a couple of letters from my GP. One was a request to call back to arrange an appointment with the GP, the other one was a request to arrange a gynaecologist appointment at the local hospital. I went online immediately and booked the first available slot at the hospital, which was on the 15th of October. I rang the GP and made an appointment, she explained that she had referred me to the hospital as the abnormality they had spotted back in June was still there, and I should hear from them soon. Well, that had already happened and as usual, I had not done things in the correct order.

  • SEPTEMBER 2019

    What a month! Between an attempted burglary and a 10-day trip to New York, I received a letter from the hospital asking me to come in for a hysteroscopy ahead of my appointment in October. The appointment was scheduled for a Thursday in the middle of my trip to the US, so I called to rearrange it and pushed it back to the 30th of September, a couple of days after my return. The hospital was very arranging – it felt like there was no urgency at all.

    The hysteroscopy happened and all I can say is – not a pleasant experience at all. The doctor performing the procedure spoke to me, explaining what she was going to do and what the expected findings were. She mentioned the possibility of endometrial hyperplasia, which could be either benign or pre-cancerous. If it looked like the abnormality was a polyp, she would try and remove it – if it was too large, we would have to schedule another appointment. If it looked like endometrial hyperplasia, she would need to take a biopsy and send it for testing.

    She carried out the procedure and I would not wish it on my worst enemy. It is painful. She was showing me on a screen what was happening, and mentioned that it looked abnormal, like a lot of little polyps, too many for her to remove. She took a biopsy. She reassured me – if it was atypical endometrial hyperplasia, it would be at a very early stage and would take years to develop into cancer, and it could be monitored and treated to make sure that did not happen. It was easily reversed, either getting better on its own with lifestyle changes, or with treatment. She told me the results would come through in about two to three weeks.

  • 15TH OCTOBER 2019

    Because the biopsy had been taken only two weeks earlier, when I walked into the hospital that morning, I wondered whether they would have the results already or whether it would end up being a pointless appointment and I would be asked to come back in the following week. My appointment was at 9am. At 9.10, the doctor called my name. I stood up and shook his hand, he brought me into an exam room. I sat down, he sat opposite me at his desk. He asked if I knew what the appointment was about, I said I was a bit unsure, since I did not know whether the results from the biopsy would be back yet, and I had booked that appointment before being asked to come in for a hysteroscopy… I was babbling. He stopped me and told me that they had the results. He told me that unfortunately, the results were not good. They were not what anyone had expected. He told me that they had done tests to see whether the endometrial hyperplasia was ‘normal’ or atypical. And unfortunately, it had progressed further than just atypical. It had progressed further than anyone could have predicted. He told me he had to be blunt. We were talking about cancer.

    Whilst I was sitting there, in shock, he told me it should not have been him delivering the news. That he had no interest in gynaecology oncology. That because I already had this ‘routine’ appointment booked, it had fallen on him to give me the news. Normally, they would have arranged for me to see an oncology specialist, they would have made sure there was a Macmillan nurse with them, they would have asked me to bring someone in with me if I felt like I needed some support. I will write a full post about this appointment, as I think it moulded my perception of my diagnosis, and accounts for a lot of the anxiety and PTSD I have to this day. For now, I will just say that he asked me if I wanted him to arrange an appointment with the specialist team the following day. Obviously, I did.

  • 16TH OCTOBER 2019

    My appointment with the specialist team was in the afternoon. I went to work in the morning, and a friend drove me to the hospital and waited with me for the doctor to call my name. When we walked into her office, I sat down and she gave me the official diagnosis. The biopsy had revealed cancer cells. They believed it showed Grade 2 lesions. They were hopeful it would be very early-stage, probably Stage 1, where the majority of endometrial cancers are being diagnosed, but that would only be confirmed after the surgery. In the meantime, I would have to attend MRIs and X-Rays to make sure the cancer had not progressed locally or spread to the rest of my body.

    I was officially a cancer patient.

I will write a different post about the phase between the original diagnosis and the confirmed staging in January 2020, three and a half weeks after surgery. This timeline shows the time it took for me to first get diagnosed, after going through a number of tests and appointments where I was diagnosed with various conditions (which I did have, to be fair), and reassured it would not be cancer. Had it crossed my mind it could be? Of course it had. But I trusted the professional opinions of various health professionals with a lot of experience. Sometimes though, things do not go the way anyone expects them to.

Single, Self-Sufficient and Still in Need of Support

‘Do you have a partner?’ That is the very first question I was asked after being given my diagnosis. I said no. ‘Do you have any family around?’ I shook my head: ‘They are in France.’ ‘Do you live on your own? Do you have any close friends here?’

I have always been fiercely independent. I do not trust people easily. I used to think I did not need anyone, ever. I moved to the UK right after finishing uni in Paris, saying goodbye to friends and family I would only see a couple times a year from there on. I liked the challenge, the idea of not relying on anyone but myself. I was building a life for myself, with very little help from anyone else. I was financially, emotionally and physically self-sufficient, and that made me strong.

I am a people person. The coaster on my desk reads ‘I like otters, it’s people who annoy me’ – it is accurate, but also not. I am independent but I love having people around. I am very close to my friends, I am fiercely loyal to them, I enjoy meeting new people and building new relationships. Even during lockdown, I found ways of staying in touch with people – messaging friends at all hours of the day and night (they stopped replying to every single text after a while – how rude).

I get on with my family, most of the time. I see them a couple of times a year, we have a great time, then I go back to my life. We are not in constant contact, they do not know every single facet of my life, and that works for me.

I have been single, casually dating most of my adult life. I do not feel the need to constantly be in a relationship. I have always struggled to let people in, trust them enough to let them be a permanent part of my life. I do not like change, I am terrible at compromise, and that does not make it easy to build a life with someone.

Did I feel lonely? Sometimes, but I think most people have similar feelings from time to time. Would I support my friends through anything? Absolutely. You can call me at any hour of the day and night, and I will jump in a taxi/on a train/on a plane if you need me. Because I was so keen on being self-sufficient, on being independent, because I tend to keep my feelings and my problems to myself, I had never considered a situation in which the roles would be reversed. Would I be able to reach out, if anything was to happen? Would people be there for me like I would for them? Would I even want to ask for support?

I will admit the thought of doing this on my own crossed my mind. In the first few seconds, in the first few minutes after I understood what was happening inside my body, I considered not telling anyone. I thought it would be best. I thought I would protect people by not telling them. But I decided to reach out, and I am grateful every day that I did.

I reached out to my mum. I do not speak to her often, maybe a couple text messages every week or so (mostly talking about cats), one video call a month, two or three quick trips back home a year. But I called her straightaway on that day. And she offered to tell everyone in the family, to break the news herself as I was not strong enough to do it.

I reached out to two different groups of friends whilst still in the hospital. I texted some of my best friends here in the UK, people who knew I had a doctor’s appointment that morning. And then, I messaged some of my friends from home, people who have been by my side for over ten years now. The support started pouring in.

Obviously, I needed to tell work. I asked one of my friends from work to speak to my manager, and tell her that I had had some bad news at the appointment. I walked home. I cried all the way up the hill (and what a hill it is). I went into my room. I think my housemates were in, at least some of them. I did not see them. Did they hear me cry that day? Maybe.

I called my manager, and I gave her the news, lying on my bed, clutching my phone with one hand and the appointment letter in the other. I cried throughout, I said I would come into work later that day.

Once that was done, that was it. All areas of my life had been covered. Work, friends, family (not necessarily in that order). Someone from each of my social bubbles knew about it. It made it real, it also made it easier. Once you start telling people, it is no longer your burden only.

As the hours and days passed, I started telling more people. Every time, I told myself that I was only doing it for a practical reason. I told my housemates, because I was going to be home more often, because they might walk into me crying in the living room. I messaged more friends from the UK, because they were people I was going to see face to face in the next few weeks, and they would realise something was wrong. I told my team at work, convincing myself I was only doing it so they could understand why I disappeared every other day for a few hours, and why I would be off for six weeks later in the year.

But what I was really doing was showing people, for the first time in my life, that I needed emotional support.

Every time I told someone, I felt guilty. I felt guilty of bringing people into this situation, of making them part of something they had not asked for. It felt like I was involving them in something terrible, just to ease my own pain. Like I was forcing my issues on them, like I was asking too much of them, in a selfish and undeserving way.

Because of those feelings, I decided that I would not tell any of my other friends unless they reached out and asked how I was doing. I have always been terrible at lying, so I would not have been able to hide the truth. I would not share the news on social media, I would not do one big announcement, I would not shout it from the rooftops.

The support was overwhelming. I do not think I will ever be able to thank people for the kindness and understanding they showed me. Be it the friends who hugged me on the day of the diagnosis (one of the few times I allowed people to hug me), who drove me to my appointments, sat with me in the waiting room and asked the questions I could not think of, the friends who kept asking how I was doing, the ones who drove across the country just to spend an evening with me, the ones who sent cards and origami otters, the ones who told people I could not face, the ones who came to spend New Year’s Eve with me, crossing the Channel just to be there after the surgery, the ones who held me when I cried, the ones who were angry on my behalf when the surgery got cancelled the first time around, the ones who called the nurse for me when I could not even hold the phone, the ones who drove me home after the surgery, the ones who felt uncomfortable and pushed through it, because I needed them.

My parents who, barely speaking English, dropped everything to be with me for the surgery – my dad who, on my scheduled operation day, waited with me in the hospital for eight hours before the surgery was called off due to a lack of available beds, and was angrier and quieter than I have ever seen him when they told us to go home (and that includes that evening in 2002 when the far-right got into the second round of the French presidential elections). My mum, who came two weeks later for the rescheduled surgery, and listened to me babbling in English when I woke up from general anaesthesia, unable to speak a word of French. My brothers, who came to spend Christmas with me and agreed to watch Home Alone and Home Alone 2 back to back, snuggled up on the sofa.

My colleagues, who cried when I gave them the news, and my team, who bore with me when I kept bursting into tears at random times during the day and could barely get any work done. People who gave me advice, who told me they would be there for me if I needed them.

People who are still here for me today as I am struggling with depression, PTSD and anxiety, and for whom I have vowed to battle through it all, and come out stronger on the other side.

I am still independent. I am still tough, I am still strong. I now live on my own, and I love it. I still have my walls up with most of the world, even close friends, but I now understand the value of support. And you can be independent, you can be self-sufficient and still need a helping hand from time to time.

Fighting For My Right Not To Have Children

In the two months between my diagnosis and the surgery, I lost count of how many times I had to explain I did not want children, and I was not planning on preserving my fertility. I was used to it – after all, announcing to the world you do not want children rarely goes well, even today. But I was not prepared to have to fight for my voice to be heard.

When you are first told that the only treatment for your condition is a hysterectomy, many things go through your head. For me, the first one was ‘will that cure me?’, but I have always had a very rational mind. Before cancer, and during the diagnosis and treatment process, I was very much focused on the big picture. I saw an issue, I thought of a solution. I only considered the smaller details inasmuch as they could help achieve the bigger goal. This has changed since then, I find the bigger picture terrifying, overwhelming, and I find comfort in details and small-scale decisions.

For me, it was cancer, but many women go through a hysterectomy for other reasons. In a way, I probably had it easy. I did not have to fight to have my hysterectomy, the doctors agreed it was the only viable option. It was going to happen no matter what – unless I refused treatment entirely, which is always an option. And obviously, a hysterectomy is a major operation, with major consequences on your life and your future. Although it is a fairly standard procedure, and there are fewer risks than a number of other major surgeries, it has lasting effects, particularly on younger women. Without a uterus, you will not be able to get pregnant.

I have a pretty good knowledge of biology – I took A-levels (or, more accurately, the French equivalent, the bac) in science, and biology was one of the main components. The minute I heard ‘hysterectomy’, I knew what it meant for my fertility. The doctor who gave me the news made sure to explain as well, to ensure I had all the information. At that stage, he mentioned that it might also be necessary to remove my ovaries, due to the grade of the cancer on the biopsy they had taken. The cancer appeared to be Grade 2, and removal of the ovaries is recommended in that case, as more aggressive types of womb cancer have a tendency to spread to the ovaries as well. If the biopsy had shown Grade 1 lesions only (as my cancer would later end up being), I would have been given the option to keep my ovaries, and to harvest eggs later should I wish to have a biological child.

The procedure which I would be undergoing would be a total hysterectomy with bi-lateral salpingo-oophorectomy. I know, it is a mouthful and a half – try saying it in a language that is not your mother tongue, after you wake up from general anesthesia. No womb, no ovaries, no tubes. It is a lot to take in – or take out, as it is.

On that first day, the first doctor I saw – he did not have an interest in gynaecological oncology, and had very limited knowledge of my case, as he had to break the news to me at a routine appointment and did not have much information – mentioned that I should be thinking about fertility-preserving options. I was overwhelmed. I had just been given the news that I had cancer – you brain cannot process much information after this. Or at least, mine could not. I had understood that meant I would not have children. I was very quickly at peace with that. I had never been particularly keen on having children, and so in my opinion, it was not a huge loss. It was also something I was definitely prepared to do in order to survive, which is what it came down to. I told the doctor there and then that I was fine with it. No children in exchange for a 95% cancer-free survival rate at Stage 1, I would take that any day.

The next day, I had an appointment with a specialist in gynaecology oncology, and a Macmillan nurse was also present. This was exactly what I needed. Facts, accurate information, options, everything was discussed. I had a friend with me, here to support me emotionally and take in all the information I could not process, ask all the questions I could not think of. And at that appointment, they broached the subject which the previous doctor had only hinted at – fertility preservation. That would involve retrieving eggs or ovarian tissue, and freezing them. This could allow for potential future in-vitro fertilization of eggs, and the possibility of having a biological child, using a surrogate. The success rates of such procedures vary greatly, but it was an option.

It was always very clear in my head – this was not something I was interested in. There were several reasons for this, which I had been listing ever since the possibility had been brought up. One of my arguments for not having children even before cancer is that there are too many children in need of adoptive or foster parents, and I was always very open to the idea of adopting instead of having children, if I ever went down the route of having a family. I was not even sure I wanted a family, so it would be a waste of resources and money for my eggs to be preserved, if I ever was to decide I did not want to use them. Finally, I did not like the idea of forcing something that was not meant to be – if I could not have biological children naturally, I would rather not force nature and involve science, resources and energy to try and make it happen. I think it is absolutely right for people who wish to go down that path, but it is not for me. And I think a part of me was relieved. If I said no to fertility preservation, I had a clean break. There was no option, there was no disappointment if ever IVF and surrogacy did not work. I had arguments, I had made up my mind, I was very sure of myself. This was not something I had decided on a whim. I had never really wanted children, I was ready for that option to be taken away from me entirely.

I mentioned this to my team, and they were understanding. They did tell me that they wanted me to see a fertility expert before I made up my mind. I understand why they did. They do have to make sure that you are not going to regret your choice in 5, 10, 15 years. Womb cancer is very rare amongst young women, so not many have to make this choice. Caution is recommended. I was a bit disappointed. In my mind, I had already made my choice. I presented my reasoning, thought it made a convincing argument. It made sense for me. Surely it would make sense for them.

Maybe it did. But they still requested that appointment. I was fragile emotionally at that point, I will not lie. I cried about it, I complained a lot. I felt like I was not being listened to. Now, a year later, I understand. But it did not make it any easier at the time.

Because I was so young and there were factors which could make the procedure more complicated, I was referred to a specialised hospital in Oxford. A new team, a new set of doctors, a new string of appointments. That was going to be my life for the foreseeable future. All appointments, all tests were scheduled. All but the fertility one. At each appointment, I kept mentioning it. I was calling the nurse in between appointments, in between assessments, asking when I could have that appointment. That appointment I dreaded, that appointment I did not want to have.

I was scared. The date of the surgery was getting closer, and still no appointment. I was advised to call the fertility secretary myself. I called, I sent emails, I chased. I was a mess. I was glued to my phone, I was crying in the loo at work, I had to cancel meetings and work trips ‘just in case the appointment falls on that day.’ By that point, I had told about eight different doctors and nurses I did not wish to preserve my fertility, and got the same answer every time: ‘you need to speak to a fertility expert’. I protested (I was truly a horrible patient, and I apologise for it), and was told several times told that it was because I was so young, and there was a risk I would change my mind and they wanted me to consider all the options. I was not young anymore. I had aged about 20 years in the space of four weeks. I knew my mind, I was frustrated. I was afraid it would delay the surgery, as they refused to carry it out without me having spoken to a specialist. Finally, ten days before the surgery was scheduled, I was given an appointment. The hysterectomy was planned for a Tuesday, the fertility appointment would take place the Friday before. Cutting it close.

I had been arguing with doctors, but I was also fighting people in my personal life. People who kept telling me that I should reconsider. Friends. Family. The same arguments that the doctors had made to explain the need for that appointment, my loved ones now gave me to convince me to go ahead with fertility preservation. You are too young. You are going to regret it if you do not do it. You will see, in ten years. But do you not want to try, just do it and see if you want to use them later? It costs you nothing. And probably the most infuriating of all: but what about your future partner? What if he wants children of his own? Arguments that after a while, made me want to cry. Of course I had considered it. Of course I wished that I had been given the choice to have children. Having it taken away from you is extremely violent. It takes away your free will, and even though it is no different from what you wanted, it feels like something has been ripped away from you. I like options. I like having a choice. I often saw myself as one of these women who would decide not to have children, who would stand up against society. By taking that away from me, it was like a part of me I liked no longer existed. But at the same time, it was about making that choice, right there, right then. I would not have children, and that would be it.

All the fight had been taken out of me at that point. I remember going to the hospital, being in a room with the fertility expert, a medical student and another woman. They explained the options. I said I was not interested. And that was it. No explanations needed, no justification. I had made the choice in front of an expert, that was enough. I signed the papers they gave me. I agreed to donate part of my ovaries to research, so they could try and improve on options to preserve fertility in younger girls undergoing chemo or radiotherapy.

I have not regretted my decision. I am still angry about having had to fight to get my voice heard, to even get an appointment. To have had to speak to so many different people about it, to have given the same answer, again and again. To have had to justify my choice in front of people who should have been supporting me during this time, not making me feel guilty about the decision I was taking. To have been told time and time again that I was too young to make a decision like this. I was too young for cancer too, but cancer did not care.

Before cancer, I had to justify my lack of interest in children to people who had no say in the matter. Now, when they ask me, I just tell them that I cannot have children. I see pity in many people’s eyes, but all I feel is relief, because I no longer have to explain myself.

I Am A Woman

When I first heard the word ‘cancer’, when I was in that cold, cluttered room with a doctor I had met less than a minute earlier, I did not think for one second about how it would affect my identity. I did not imagine it would ever change the way I thought about myself, the words I had used to describe myself for years, decades. But it did, and I am constantly fighting to reprise an identity that was taken from me the minute I became another case on the surgeon’s schedule.

I have always been a feminist. I cannot remember when I first realised it. Maybe it was during discussions with my mum, with my gran, with these women who helped shape my life, sometimes despite themselves. Maybe it was because of arguments with friends, with my brothers, with teachers. I remember trying to deny it, pretending that I did not care, saying that I was not a feminist, no, I was in favour of equality between all genders, not just promoting women’s rights. I was a feminist then, and I am a feminist now.

I have always been proud of being a woman. There have been times where I found it hard, but I have always wanted to stand up for women, celebrate how strong we were, I have always admired women and everything they represent. My idols are strong, passionate women who support each other. I love being a woman, and though I might not love everything that comes with it, I would not wish to change that for anything in the world.

If there was ever one thing I was sure of, one truth that I could always go back to when in doubt, it was my identity as a woman. I used to be a girl, then I became an insufferable teenager, and finally I made my way into womanhood. I have always felt like a woman, even when I considered myself a tomboy, wearing ripped jeans, riding my bike, insisting on buying boy’s hoodies (and then went through an absolutely contradictory phase, where I did not wear anything but dresses and skirts for over five years – I am an all or nothing kind of person). I never even considered the possibility of feeling differently. I never felt the need to justify my feeling like a woman – it was so obvious to me, it was engrained into every single part of my being. It took me a while to realise I was coming from a place of privilege, being so sure of myself, fitting into one of these pre-defined categories. I consider myself a very open-minded individual, especially as regards gender and sexual identity. I never truly believed that a person’s gender was defined by their sexual organs (or lack thereof). As I grew up, I became more aware of gender identity and gender studies, and I find it absolutely fascinating (and I don’t just mean that I am obsessed with RuPaul’s Drag Race and cry every single time someone struggles with their gender identity on there. Even though that’s true too). I just never thought, privileged as I was, that I would ever not feel like a woman.

When the doctor told me that the only ‘reliable’ treatment option for my cancer would be a total hysterectomy, I did not imagine for one second that it would affect how I thought of myself. I remember sitting on that sofa, in a quiet room, calling my mum, messaging my closest friends, breaking the news to them less than an hour after having heard them myself, and I remember thinking that it was alright. It would just mean never being able to get pregnant, and no more periods. The latter, I could do without. The former was more complicated.

My life goal had never been to have children. I am terrified of pregnancy. I took more pregnancy tests ‘just in case’ in my early twenties than most people who are trying to get pregnant will ever take, just because of how much the possibility that I might be pregnant scared me, and I needed to be sure. Really, really sure. I am afraid of babies, I am not good with children (do not tell that to the families I used to babysit for). But at the same time, looking down the line, looking at how I saw my life in 10, 15 years – could I really say I never imagined having children, having a family? I could not. As I told my dad, a mere few weeks before the diagnosis, when no-one had any idea of what was happening in my body, I could ‘see myself one day considering thinking that I might not not want to have children.’ It was a very remote possibility, and I took my decision there and then. I would have the hysterectomy, and I would never carry children.

Further down the line (I will write a post about it, or maybe several), before the operation, I had to consider whether I wanted to freeze my eggs. Or, as the experts call it, ‘explore fertility-preservation options’. I had decided from the very moment they mentioned it that it was not something I wanted to do, not something I felt comfortable with. So this was it, then. I would lose my ability to have children that were biologically mine, and I was perfectly fine with it.

I know and admire plenty of women who are unable to have children, for one reason or another. I also know and support many who do not wish to have them. It does not make anyone less of a woman in my eyes.

And despite all this, I have struggled. I have struggled with my identity as a woman. There are days where that thought haunts me, and I do not know why. Is it the loss of my reproductive organs, even though I never believed they were what made me a woman? Is it the loss of my ability to have children, even though I did not particularly want them? Is it the loss of hormones caused by the surgical menopause, despite the fact that in my eyes, older women are still women?

I am always harder on myself than I am on others. I judge myself a lot more harshly than I do other people. Maybe that is it. But deep down, I think it is also the thought that other people might not see me as a true woman. I know who I am, but how can you predict how other people will react? How do you know what someone will think? And I am not naïve. I know very well that plenty of people consider that your gender identity lies with your reproductive organs. Well, in that case, mine burned down ten months ago.

The first time I felt like this was mere days after the surgery. I had just gone home after two nights in the hospital, and my family had come over to spend Christmas with me. They were staying at an AirBnB a few streets down from where I lived, and I was spending the night on my own. It was maybe the first or second night I was on my own. It woke me up in the middle of the night, and the pain was worse than any physical pain I had ever experienced. Who was I? Was I still a woman? It was the very first time I cried after the surgery.

It crops up regularly. Sometimes there are triggers. They are often silly, often extrapolations of my own imagination. I take things personally. I cry, and other times I get angry. One of my worst episodes was in the spring.

I have always been a huge Harry Potter fan. I know everything there is to know about it, they are the first books I read in English, just because I could not wait for the French version to be released. And that tweet from JK Rowling angered me like few things have angered me in the past. I was angry on behalf of the trans community, I was angry on behalf of some of my friends, I was angry on behalf of everyone who does not fit within the cisgender majority. I was angry on behalf of anyone who had been hurt by her words. And it took me a while to realise I was angry on behalf of myself as well. I do not menstruate, and I am a woman. I do not have a uterus, and I am a woman. My body does not produce oestrogen on its own, and I am a woman.

I say it to myself sometimes. I look at myself in the mirror, and I tell myself ‘I am a woman.’ It alleviates the doubts for a while. I am a woman.

The Post That Started It All

Although I have always loved writing, I had never thought of writing a blog to share my experience. One the eve of the one-year anniversary of my diagnosis, I decided I wanted to share my experience with people, and wrote and shared a long facebook post. The response I received was overwhelming. People reaching out, comments about how much they related, how much they appreciated that I had shared that with them. I realised that not only had sharing this post lifted a weight off my chest, but it had helped others as well. And overnight, the idea to start a blog came to me, and I decided to make the jump. The post below is taken from the message I wrote on that night, the 14th of October 2020.

If you know me, you probably know I am not a fan of feelings.

They are unpredictable, they are messy, they make you vulnerable, they are overwhelming. I am uncomfortable experiencing them, let alone talking about them or sharing them on facebook.

I have been thinking about it a lot this past year.

A year ago, if you had asked me where I would be in a year, I probably would have given you some positive, commonplace and deliberately hopeful answer, like ‘oh, I hope I have my life together, a good job, a boyfriend, maybe a new flat, I will have made some progress with my writing, started a small calligraphy business, who knows.’

Well, let’s be honest, it turned out slightly differently.

Tomorrow morning, I will wake up and it will have been a year since I was given a diagnosis of cancer. A year since I first cried in front of friends, family, and strangers (I will make an exception for all those times I cried when I was drunk before – it does not count), and since I started doing it most days, because it is often the easiest answer to the question ‘how are you doing?’. Crying is not a feeling, and it is all my feelings at once.

I truly thought that when the dreaded one year mark would come up, I would be feeling all positive, ready to put it all behind me. After all, the prognosis was extremely good, the operation went well, I am expected to make a full recovery, recurrence is fairly unlikely.

But then, cancer had been very unlikely too.

A year is the perfect moment to turn the page on everything that has happened. A new chapter, a new beginning, that is what everyone has been saying, and I have too. Only, I have been lying.

I still cry every day, and that is not likely to magically change from tomorrow. I think about it every day, I think about the exact moment, at 9.10 in the morning, when I saw the first of scores of doctors. I cannot remember the name of the surgeon who operated on me, or the nurse who chatted to me whilst I was recovering, but I can remember the name of the doctor who gave me the news, telling me he was not supposed to be the one to tell me, as he had no interest in oncology, that it should have been done differently, not at a routine appointment, that he wished he was not the one delivering these news, that they should have asked for someone to come with me, that they did not because they did not expect it, that they did not even have a specialist nurse available.

I did not cry, even as he explained what the treatment would involve, and what it meant for the rest of my life. I asked if I could call someone. I had no idea who I was going to call. I could not even think straight, but I was obsessed with the idea that I had to save face, that I would not cry in front of him. They set me up in a quiet room with a cup of tea – even asked me what kind of tea I wanted. I took out my phone and without hesitating, I called my mum.

And then I started crying.

I have not stopped. I cry in the mornings, I cry when I make a cup of tea, I cry when I look at my scars, I cry when I think about the plans I had a year ago.

I am not turning the page, I am continuing to write on a scroll that only gets longer and longer, and that is ok too.

I have had the best support over the past year. Friends, family, colleagues, housemates, Macmillan nurses, everyone has been fantastic.

I still do not like feelings. I do not talk about them, but I have started writing them down, in the hope that in the future, I will be able to make sense of them, and help someone else like people have helped me.

I will continue saying I am fine when you ask me how I am doing.

And one day, it will be true.