Family – The Burden of Genetics (I)

When I think about family, I usually think of people. A moving, imperfect circle, individuals all coming together, fighting, loving, arguing, hugging. People hanging out at big events, related by a multitude of ties, some unbreakable, some so thin they disappear over the years.

I always saw my family as this group of people, some with whom I had great relations, some I barely ever spoke to. I had never defined family based on whether we shared any blood, any DNA. Whether someone had married into the family or was on the same branch of the family tree never mattered to me.

Until one day, when it became all that mattered.

I was told early on, the day after my diagnosis, that there were two potential causes for my cancer. One was that it was random. Faulty hormones, bad karma, a variety of factors that could contribute to my developing womb cancer at a ridiculously young age. The other explanation would be genetics. There could be, running in my family, a genetic condition that had until then remained undetected, and my cancer could be one of the many manifestations of this genetic mutation. The overwhelming majority of womb cancers are random, and happen in individuals who have no family history of cancer. But a small percentage are due to various genetic conditions, and these cancers tend to appear much earlier. Because I was completely out of the usual age range for womb cancer, I was a candidate for genetic testing. It would not change the treatment plan, or the outcome of this particular cancer. But it had the potential to change everything else.

I was referred to a genetics specialist on the very day of my diagnosis. At the time, I did not realise how much that weighed on my shoulders. I was told it would take months for me to get an appointment, and that it would only be the start of my journey into genetics – if I decided I wanted to get tested, after discussing it with the specialist. I agreed to speaking to the geneticist without even thinking about it. Since it was going to take months, it was better to get started early.

Pretty soon, I received a bunch of forms to fill in about my family, about where each branch of my family came from, our ethnic background. I then had to fill in separate forms about each of my first and second-degree relatives. Names, dates of birth and medical history of my parents, brothers, grand-parents, aunts and uncles. Date and cause of death, where applicable. Any medical history that could be relevant: cancers, unexplained medical conditions, etc.

It was an incredible, uncomfortable amount of work. I had to ask each of my parents to quiz members of their respective family. My mum’s family was straightforward. No cancer in the immediate family, and no trace of it for generations. It is actually quite unsettling to realise that I am the first in four generations to get cancer. That seems terribly unfair.

We hit a hurdle as soon as I started filling out the information about my dad’s side of the family. We know very little about his father, and his life after he left his family when my dad was just a toddler. My dad has always refused to look into it, to get in touch, to renew the ties before his father died, back in the early 90s. He could have had cancer, and we might not have known about it.

My dad also had to ask his elderly siblings, two of which are currently battling their own advanced cancers, about any genetic testing they might have undergone. It must have been terribly taxing. I have rarely been so grateful to have someone to delegate some of this work to.

We filled in the forms, using all the sections allocated and then more – the form only allowed for three siblings for each generation, and my parents both come from much larger families. I had to add a few extra pages of names and data, before sealing the envelope and sending it off to Oxford.

As I was doing this work, I also started looking more in depth into what a genetic condition could mean. I did the very thing that the nurse had asked me not to do during our first appointment, and I went on an endless search for answers on the Internet.

I read pages and pages of information about potential genetic conditions, thinking and overthinking anything I knew about my family. My aunt is battling breast cancer – there are several genetic mutations that can cause both breast and gynaecological cancers in some families. My uncle is fighting pancreatic cancer – although there are many factors that could have contributed to his specific cancer, it is also one of the cancers associated with Lynch syndrome, which causes a predisposition to a wide range of cancers, including womb and colon cancer.

Because of these cancers on my dad’s side of the family, and the unknown threat of his own father’s family history, I had somehow convinced myself that the likelihood of a family genetic condition was pretty high. Doctors had told me that my cancer was more likely to be random. But they had also told me before that the chances of me having cancer at my age were almost non-existent. When you are one in a million, how can you then trust that your cancer will follow the most common path?

A genetic condition like Lynch syndrome would have meant that, even if I beat this womb cancer, I was at a much higher risk of developing other cancers in the near future, if it had not started already. My life would be very different. I was scared. I was terrified. For months, I analysed every single thing happening in my body, convinced that it was the sign of another cancer growing somewhere else in my body. More than once, I asked myself if it really was worth undergoing treatment, if I knew cancer was going to be a very real threat in the future. If it was only a matter of time. I will be honest. There were days where the possibility of being riddled with genetics conditions made me think of giving up altogether.

The one happy thought I had was that, if I did have a genetic condition, I would never pass it on to any children. It is bleak, when your one ray of hope is that your hysterectomy means you will never pass on faulty genes.

By agreeing to speak to a geneticist, I had agreed to open the door to an ocean of possibilities, each scarier than the next. I agreed on the basis that it is better to know in advance what you are about to face. I have said it before, I hate surprises. Undergoing genetic testing is pretty much as close to finding out about your future as is possible in this day and age.

In early December, as I was coming to terms with the delay in my operation, I received a letter from the genetics clinic, telling me I had an appointment scheduled for Friday, 14th February 2020. Well. I was not going to have a hot date on Valentine’s Day anyway, so I might as well have an appointment with a geneticist.

It felt so distant, so far in the future that I pushed it to the back of my mind for a while. I focused on the task at hand for the next couple of weeks: getting the surgery done. Everything else could take a backseat. But the moment I saw my brothers again when they came to visit at Christmas, a new threat jumped into my mind.

If a genetic condition was to be discovered, it would not only affect me. It would affect them. It would affect my parents. They would have to get tested. I would be the one triggering a series of reactions I had not foreseen. Was I ready for this? Were they?

All of a sudden, the threat of genetics became unbearable, and the guilt, the guilt I felt at the idea of being the one throwing my family into disarray was undescribable. I could not do that to them. My existence was putting theirs in danger. My medical history could unravel their lives.

Spoiler alert – it did not. But the feelings were there, for months. And they deserve a blog post of their own.

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 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.