A Number Is Worth a Thousand Words

I have always liked numbers. I hate maths, do not get me wrong – but numbers themselves are comforting. Counting makes sense. Keeping track makes sense.

I like to see numbers. Work out how many days, how many hours, how much time I spend doing this or that.

And when I am particularly anxious, when I struggle to get my brain to rest, I count. I take notes. And I write down the numbers that made up my cancer journey.

538 days since diagnosis.
473 days since my hysterectomy.

Two days until my next check up.
117 days since the last one.

Type 1.
Stage 1.
Grade 1.

31 hospital appointments so far.
Five hospitals.
Two counties.

Four appointments, three hospitals in the next ten days.

146 phone calls.

Nine gynaecologists.
Two nights in the hospital.

Nine blood tests.
Two ultrasounds.
One X-ray.
Two MRIs.
One biopsy.
One operation.

Two ovaries, two tubes, one womb.
No ovaries. No tubes. No womb.

Five Macmillan nurses.

Three therapists.
One clinical psychologist.
17 appointments to discuss my mental health.

Three prescriptions I take daily.

Six panic attacks in the last three days.
Nine unrelated episodes of tears.

One in 36 women in the UK.
Over 26 cases every day.
3% of all cancers in the UK.
The fourth most common cancer in women.

90% chance of surviving the cancer for over 5 years.

Letting Go

I have always been obsessed with the idea of keeping it together. Finding a way to keep moving forward, even when it hurts, even when it means pretending. Focusing on things I can control, instead of delving into my issues and trying to solve them. Saving face, again and again.

Last week, for only the second time since my diagnosis, I let go. Did I forget that I was supposed to pretend? Did I not have the energy to hold back the feelings, to glue together whatever pieces of me were still whole?

The surge of feelings after my hospital appointment was both expected and unexpectedly violent. The whole experience was incredibly brutal.

First came the panic attacks the minute I set foot in the hospital. I was holding it together until then, but then I broke down. Teary, barely able to think, speaking in a whispery, soft voice that is very uncharacteristic of me, breathing hard but hardly breathing, the whole shebang. But a panic attack for me is not about letting go, it is not about losing control of your feelings. It is a sign of my body being unable to cope with a situation, and reacting physically, automatically, to what my brain cannot cope with. 

After I got home that evening, after I wrote to my friends to tell them everything was fine, after I posted here about my relief at being cancer-free, I finally let go and gave in to my feelings.

In a rare display of true emotion, only exacerbated by sheer exhaustion and the now familiar migraine that comes after panic attacks, I spent hours that night crying. I am not sure what I cried about. Relief. Fear. Anger. Acceptance. Loss. I let my feelings overcome me and tear at my carefully-crafted armour of false-strength.

And for two days, I could barely move. I was paralysed by my feelings. I felt sick, I felt useless, I struggled to even open my eyes. The only other time I can remember feeling so overcome with feelings was after the cancelled operation. I let my feelings wash over me, and take control of what happened to my body. I lay in bed, under the covers, with a pile of tissues and a box of painkillers at my side. I alternated between crying, drifting off to sleep for short, restless periods, and feeling sorry for myself. Feeling angry at myself.

Since October 2019 and the diagnosis, I had not taken a single sick day for cancer reasons that was not related to either a doctor’s appointment or the surgery. I came in the day of my diagnosis, and the day after. I came back from sick leave after surgery a week early. But last week, just like the week after they cancelled the operation in early December last year, it finally became too much. I had no energy. I had no brainpower. All I had were feelings a year in the making, an unrelenting migraine, and a week’s worth of insomnia.

So I let go. I let my feelings take over my body and my brain, and I stopped pretending, for two blessed days, that I was fine. I gave in. I knew my feelings and self-pity had an expiration date – I was travelling back to France at the weekend and needed to be back up on my feet by then.

Did it feel liberating? In a way. Because I did not go to work, I did not have to pretend to be ok. I did not have to repress my feelings and put up a brave front. I was unapologetically broken, and I was honest.

For two days, I did not make myself do anything I did not fancy. I did not eat. I drank lots of tea, I went for a couple of walks, I avoided people and listened to Christmas music. I cried for hours, in the comfort of my own bed, under the stream of the shower, in the woods at the edge of the park. I let go.

But there, at the back of my mind, were still uncomfortable feelings. Guilt, for taking days off when work was busy. For having the privilege to do so, when so many people cannot afford that. Uneasiness, for making people uncomfortable when telling them what was wrong. Anger, anger at myself for not being strong enough to keep pretending and live a normal life. Shame at not being a functional human being. Shame, shame, shame.

Two days. That is how long I allowed myself to let go for. And then I picked up the pieces of myself and put them in a suitcase and a backpack, and dragged them over the border to France.

One Year On: We Are in the Clear

If I had any energy left after my one-year follow-up appointment this afternoon, I would probably blow up some balloons and put them up in my flat.

It was hard. My eyes are raw from crying. I used about two boxes of tissues – one in the waiting room and one in the exam room.

I cried in front of the receptionist. I cried in front of the nurse who checked my height and weight. I cried in front of the doctor, and I cried in front of the cancer nurse specialist.

Follow-up appointments are rough. You can go about your life for months, but you know that everything could change in a matter of seconds, in that same room where you first got the news. The. Exact. Same. Room.

I had a new doctor again, who asked me plenty of questions about how I was diagnosed, how it came to be, what tests were done, how thick the lining of my uterus had been on the MRI scan (I have no idea). As I was battling my way through my tears, she told me it was ok to cry. It was ok to be overwhelmed, to be traumatised. She told me that I had gone through a lot for someone so young – terribly young, and she could say that because we were exactly the same age.

I do not know why that comment struck me as odd. Why of all the things she said, that is the one that stayed with me.

But it is all said and done now. A quick exam, a lot of background info, a chat about any symptoms I could have had, an inventory of the medication I am on, and I have been declared cancer-free, until my next appointment in four months.

I will have more to say in the coming days. About how they told me if things remained the same, I would be discharged after one more year, instead of four. About how my dedicated nurse was self-isolating so I was not able to speak to her, but arranged a phone catch-up in a couple of weeks to discuss my ongoing mental health problems.

For now though, I will crawl under the covers, put a good audiobook on and try and get some much needed rest. I may order a celebratory takeaway later, making up for the fact I have had maybe 4 meals in the last 6 days. I will make myself a hot chocolate and put the Christmas lights on.

In the wise words of Adore Delano – Party.

Hospital Appointments and Fearing the Unknown

I had another flashback last night. I was splashing water onto my face before bed, reviewing the pros and cons of reading the next chapter of Barack Obama’s A Promised Land to fall asleep versus listening to the audiobook – an internal debate I have had every night for the last two weeks. I closed my eyes, and when the water hit my face, I was back at the hospital, after my diagnosis, thinking cold water could help me make it feel real, hoping it would drown my tears.

There had been no warning signs, no triggers that I could have identified and nipped in the bud. I opened my eyes and gripped the sides of the sink, trying to regulate my breathing. You are ok. You are at home, this is just another evening, this is your night-time routine.

There had been no warning signs, but I am fairly sure it is related to the fact that, at the moment, hospital appointments are the only thing on my mind. I am terrified of them, I think about what could happen at my appointment next week about six times an hour. It is no wonder my brain finds random associations with everyday activities, like splashing water onto my face. Trauma is no fun.

I have been thinking about the ‘why’ of it a lot. Why am I obsessing over the simple idea of an appointment? Why can I not sleep, eat or have fun for days and weeks before each one is supposed to take place?

It is simple. I have no idea what is going to happen, and so I cannot project myself in the future. I cannot make plans for after the appointment, I cannot anticipate how I will react, what I will do.

Oh, I know what the appointment is going to entail this time. I had a similar one just three months ago. A chat with the doctor, a physical check-up, a catch-up with the nurse.

I also know that the risk of them finding something wrong is low. I know that I probably would have had symptoms if something was not quite right. I also know that the risk of recurrence is low.

The issue is that throughout my diagnosis and treatment, more than half the appointments did not have the outcome that I had expected.

There was the appointment where they broke the news to me, where I was woefully unprepared.

There was the surgery that did not happen.

There was my appointment at a menopause clinic in early January, where, because the operation had been delayed and the final staging had not happened, they were not able to provide me with a plan for hormone replacement therapy. I took a 4-hour round trip to Oxford on public transport, just two weeks after the surgery, barely standing and walking, only to be told I would need to come back at the next available appointment, two months later.

And there was the final staging appointment. The one where, on 13th January 2020, I was asked to come to Oxford again to discuss the results of the operation, and talk about further treatment. My friend had come with me and, because we had arrived a whole 30 minutes early, she went to get a coffee whilst I checked in. Less than two minutes later, I was called in by the surgeon.

I did not know what to do. I told him that my friend had just gone to get a coffee, should we wait for her? He said he thought I would be fine on my own, which I took as a good sign.

I knew that appointment could go one of two ways. Either they would confirm the original stage and grade of the cancer (which had provisionally been declared Stage 1A, Grade 2), or would tell me that they had actually found more, or different cancer cells on the tissues removed during the surgery.

I had prepared myself for both possibilities. I had told myself I was ready either way. And still, the outcome was different than anything I could have expected. I sat down opposite the surgeon, and he quickly went through the surgery, telling me it had been a success. That the cancer was confirmed as Stage IA, Grade 1. I blinked. Excuse me, Grade 1? The surgeon nodded. I interrupted him again. I had been told after the initial biopsy that the cancer would be Grade 2, what did that mean? And he confirmed that the grade had been lowered as the immense majority of cells appeared to be Grade 1 after examination of the tissues removed during surgery.

I was floored. It was excellent news. It would mean I would not need any further treatment. I would be able to have HRT. As the surgeon said, removal of my ovaries had only been indicated as they believed at the time that the cancer was Grade 2. The surgery had been more extensive than would have been strictly necessary.

It was good news, but it was once again hugely unexpected news. I had not imagined that lowering the grade of the cancer would even be an option. How was I supposed to react? I had trained my brain to deal with all the potential outcomes, but not this one. It just solidified the idea, in my already traumatised mind, that anything can happen at one of those appointments. Good news, bad news, anything at all.

The unknown is terrifying. You spend so much time preparing for any eventuality, only to end up being taken aback by something you could not have expected.

For my last check-up in August, I had taken time off work in the week leading to the appointment. I went on a very short solo holiday, coming back the night before the appointment. This ensured that I would be busy, doing things I enjoyed and keeping myself distracted up until the day of the dreaded appointment. It worked – kind of. I only had two panic attacks on the day – one in my bathroom as I was getting ready, and one at the hospital, where I completely broke down in front of the young doctor who was checking up on me (keeping my fingers crossed it will be a different one this time – I think I terrified the poor man).

This time, I will be taking a different approach, working right up until the morning of the appointment. Will that help keep my mind busy up until the last minute? Will I be too distracted? I can only try, and find something that works for me. After all, even if all goes well, there are still four more years of regular check-ups to come.

So that is what terrifies me. My brain works overtime at the moment, trying to imagine dozens of different scenarios and doing its best to anticipate what could happen. There are honestly not enough hours in the day to compute all the possible outcomes and imagine how I might react, preparing my feelings, my reactions, what I will tell people. All the while knowing that no matter how many different potential outcomes, there might be ones I have not thought about. Ones that I will not be ready to face.

Bring on Wednesday.

From Diagnosis to Surgery – Part 2

After the surgery was cancelled, I probably hit one of the lowest points of my life. I was completely spent, both physically due to the lack of sleep, and emotionally due to… Everything.

I had marked the day in my diary. I had really focussed all my energy on holding up until the third of December, on pushing all my feelings aside, on staying strong. And when that day turned out to be just another day of limbo, another day where I still had cancer, I crumbled.

The day after the cancelled surgery, my father left. He was concerned, but I kept reassuring him that I was going to be fine. What I really wanted was to be alone, to lie in bed in the dark and wallow. I had never been one for wallowing – I am usually restless, and the thought of doing nothing gives me anxiety. But for the first time of my life, I wanted to do nothing, think about nothing and just let the hours and days pass.

I had to call work, explain what had happened. I actually cannot remember how I did it. Maybe I emailed my manager, maybe I phoned her – I have absolutely no recollection of that. All I remember is her telling me not to come into work that week, but to stay home and take care of myself.

I did not, not at first. About an hour after my dad left, my phone rang. One of the doctors on my team, the one who had been with the surgeon the day before, was calling to ask me how I was doing, and to confirm the date when the surgery would finally happen. I apologised for breaking into tears and falling apart the day before, I apologised on behalf of my father for him having lost his cool, she apologised on behalf of the hospital for not having been able to perform the surgery I was so looking forward to.

She reassured me that nothing would change in the two and a bit weeks until the new surgery day. The cancer would not grow, it would not spread, the prognosis would not suddenly worsen. I felt like I could breathe a little bit better. But then she stopped, and told me that unfortunately, I would have to have another MRI.

They cannot, or will not, operate on a patient without an MRI dated less than six weeks. Mine expired two days after the date of the original surgery. Delaying it by two weeks meant I would have to take another one. Just that thought made me lose it again altogether. I was in tears on the phone, I could not wait to hang up and slip under my blanket again. She told me I would receive a letter informing me of the appointment for the scan, and that she would see me a couple of weeks later.

Despite her reassurance that everything would be fine, that it was unlikely that the cancer had spread further, I was terrified again. In my head, there was still a chance the new MRI would show some significant change. A part of me understood that it was a just formality, that it was something they had to do to comply with their stringent processes, not because they were particularly worried. But another part of me was convinced that if they needed a more recent scan in order to carry out the surgery, it meant that there was a possibility that things had changed. And knowing my luck, the odds would be that it had gone against everyone’s expectations, yet again.

I spent the rest of the week at home, watching TV shows and doing the Christmas crafts I had planned for my recovery. On the Friday and Saturday, I went to the gym a total of five times. I had had a sudden regain of energy, and I could not sit still. And then, it was time to go back to work for the last ten days of the year.

It felt wrong to be back at work, but it felt good to be able to focus on something. I fielded questions about why I had been away the week before, and why I was back when I had told everyone I would be away for the rest of the year. My mind was half there, half on the surgery – the one that was cancelled and the one that was still to come.

The MRI was scheduled for that week. The friend who had been coming to most of my appointments drove me there again – another nice little trip to Oxford. This time, it took three members of staff and 30 minutes to locate a vein and place a cannula into my arm to inject the muscle relaxant and contrasting agent needed for the scan. It took so long that when I emerged from the prep room, my friend thought we were done with the MRI and got up. But no, they were simply taking me from one end of the ward to the other to carry out the actual scan.

No music this time – different hospital, different processes. I had earplugs. I closed my eyes, and in I went. Each cycle of the machine to take a scan seemed to last longer than the last. I felt nauseous, I had trouble breathing but they kept telling me to try and stay still, to breathe as calmly as possible so as not to blur the images. Finally, someone came into the room to let me know I was done. I turned around and sat up, putting my feet on the floor. I felt faint as soon as I started standing up, and had to sit back down. They tell you that you should not drive for an hour after being injected with muscle relaxant. I do not know if that was linked, but it took me over five minutes to be able to get up and walk back into the waiting room.

The next two weeks went by very slowly, and extremely fast as well. Work was busy. I managed to attend the Christmas party for our whole company, which is usually a huge bash that I barely remember the next day. This time, I was not drinking, but it went by in a flash. I was the sober friend dancing the night away.

At the weekend, I met up with a group of friends and went to the Oxford Christmas market. It felt almost incongruous to be in Oxford for something that was not cancer-related. It was all I could think about. There, in the midst of my friends who were chatting about their Christmas plans and theirs wishes for the New Year, I felt out of place. I felt so detached from everything that was happening around me. It felt like I was watching the world go past, do its own thing, and I was just there, witnessing it all without taking part. I did not know what my Christmas would be like, nor did I know what I could expect for the months and years to come.

My mum had made plans to come and stay with me for that second surgery. She would then stay all the way through Christmas, when my brothers would join us for a few days, before they all left on Boxing Day. Then, a couple of my uni friends would come and stay until New Year’s Day. It felt good to have plans, to have a schedule to look forward to once the operation was over. I had no idea how I would feel, whether I would be able to walk, but I knew I would have people with me.

The day before the surgery, I was off work again. I met my mum in London – she was coming by public transport, and I did not want to let her loose on the tube – who knows what could have happened. We had lunch in London, and then took the train back to mine. I laughed at how she struggled to walk up the hill from the train station to my place. For over a year, she had made fun of me for being overdramatic about living at the top of a steep hill. Well, that served you right, mum.

I had been told to be at the hospital at 7am, as soon as it opened. I was first on the list for that day, so there would be no delays. We took a taxi to Oxford, I was watching the sun rise outside the windows. We arrived early (very out of character for me), and walked into the hospital. This time, I knew the shortest way to get to the surgery ward. I knew which turns to take, which papers to present to the nurse behind the desk. Christmas decorations were up, and the bell stuck to the front of the desk kept falling to the floor. I picked it up a couple of times whilst we waited.

I was called in for them to check a few details – I confirmed I had not eaten since the previous night, and all I had had for breakfast was a glass of water. They put hospital bracelets on my wrists – the same ones I had had two weeks previously, and which I had torn away from my arms on the way home. They told me the surgery would probably start around 10-10.30, after the surgeon had visited the wards. I spoke with the anaesthetist again – a different one to the one I had seen before. I had to take a pregnancy test – the last one of my life. It felt ridiculous but also so meaningful.

I went back to the waiting room, prepared to wait for a long time. But they called me back in almost immediately, to meet the team that would handle the surgery. This felt like the moment of truth. We were in the exact same room where they had cancelled the surgery before. But this time, it was different. The doctors were not the same. This time, it was the right one. I signed consent forms, I confirmed I understood everything and I was ready for it. And then, they asked me to change into a hospital gown, put on my dressing gown and slippers. I left my suitcase with them and a nurse gave me a bag in which we would put the belongings I still had with me. And then she told me to go back to the waiting room whilst they prepared everything.

I went back and sat down next to my mum. We chatted for a while. It was nowhere near 10am, so I assumed we still had still some time left. But after a few minutes, a nurse came in and asked me to follow her. I turned to my my mum, I did not quite know what to say. The nurse must have understood, because she said ‘Oh, is that your mum? Come on, give her a hug!’.

I am not a hugger. I cannot remember ever hugging my parents – I am sure I must have done but not in the last fifteen years, at least. I hesitated, but then said ‘Oh, we’re not really like that.’ I keep thinking about that moment. My mum probably would have liked a hug, but she did not say it. So I nodded, and probably said something meaningless.

I followed the nurse through the door. I could see someone rolling my suitcase to the lockers where it would stay until I woke up, and I realised at that point that my phone was still in the pocked of my dressing gown. I ran to give it to them – I guess I needed to do one last silly thing before the surgery.

I remember walking down a long corridor, past a number of closed and open doors. They had told me it would be cold but I think the adrenaline running through my veins made it impossible for me to feel it. We arrived into the room where they would put me under. It was not what I expected. There was a hospital bed for me to lie on. Lots of medical equipment. A second nurse, and the anaesthetist.

My memories there are quite vague. They needed to put a cannula in my arm, for administering medications and fluids. I remember telling them about my fine veins, and them saying they would put it in the back of my hand anyway so it did not matter. I remember thinking how odd it was, to have something stuck in my hand like that. Over ten months later, I still have the scar on my hand. It is a tiny, round scar. No-one else can see it, but as I sit writing this, I stare at it. It is the first scar I got as a result of my cancer.

I have no idea how they administered the anaesthetic. They tell you that your brain stores traumatic events away, that you have a selective memory for these moments you could have done without. This is where my pre-surgery memories end.

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.