World Cancer Day

Today was World Cancer Day. A day to celebrate those who won, remember those we lost, support those who are still fighting and give hope to those who will fight in the future. A day to raise awareness and stop being afraid.

It was a long day. I woke up in pain from the physical repercussions of my low oestrogen levels. I had my first counselling session. I cried hot, burning tears. I had flash-back. I said words I had never said out loud. I took another step towards recovery.

On this day, we all have a part to play. Whether it is taking care of your own body, paying attention to the signs, raising awareness, remembering a friend, making a donation towards cancer research, saying a kind word to a loved one fighting cancer, driving someone to an appointment or listening to someone’s story – it all matters.

And on this day, I am grateful to everyone who has been part of my cancer journey, however big or small your contribution was. Thank you. It all matters.

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.

If I Be Weak

This is how the chorus of one of my favourite songs goes: ‘If you be weak / Then I’ll be strong / When the night is long’. Later on comes the counterpart: ‘If I be weak / Won’t you be strong / When the night is long.’*

I used to listen to that song a lot, back in my late teens and early twenties. I listened to it with the arrogance of youth. I did not understand how someone could be both strong and weak at the same time. In my head, I was and would always strive to be strong, to be the one comforting everyone else. I was able to carry the weight of the world on my shoulders. I liked to pretend that the second chorus, that question about whether someone else would be there if I broke down, did not exist.

I had very old-fashioned ideas about what strength was. For me, strength had always meant not showing vulnerability, being reliable, being able to prove myself, rising to the challenges thrown my way without ever admitting how much effort it took. I spent years and years trying to prove I could do everything by myself. Being strong meant doing everything, and doing it well. I am highly competitive, and I have always strived to be the best at everything I did – giving up things that I enjoyed but had no natural talent for because I would not ‘win’, be it against myself or someone else.

I have spent the last thirteen months (happy thirteen-month anniversary to me – officially my third-longest relationship ever!) constantly oscillating between wanting to show how strong I am, how I am keeping it all together, and wanting to break down, to admit that I am weak and need other people to help me stand. It is a real balancing act. I want people to see me as someone strong, secure, reliable. But I also want them to see the cracks and acknowledge they exist, even if it makes them uncomfortable.

Some people acknowledge this weakness. It is the only thing they see. I had that revelation just a couple of weeks ago, when I received a letter from the GP advising me to call and schedule an appointment to receive the flu vaccine. I had received another one a couple of weeks earlier and ignored it – not on purpose. I simply forgot about it, because of how ludicrous it felt. After all, I am 28. I have never struggled with the flu – I get it every couple of years, spend a couple of days in bed with a fever, and have aches and a bad cough for a week. And that is it. Why would I need to have the flu vaccine? Surely other, weaker people could benefit from it more.

And then it hit me. Doctors see me as a person who is at higher risk. In their eyes, I am one of those weaker individuals. I need to be protected, to avoid adding to the numbers of hospitalisations over the winter months. I am not a normal 28-year-old anymore. I am different than I was eighteen months ago, when I was a healthy individual, for all intents and purposes. (Well, it is either that or the NHS spent so much money on getting me cured of cancer, they would be pretty pissed off if I then died of the flu) And so I booked an appointment at the GP, and I finally got my flu shot. My arm has only just stopped hurting. 

But that is just one point of view, the one of health professionals who know one aspect of my life only: the one where my body has let me down. Not everyone sees things that way.

The thing that makes me the most uncomfortable is hearing people tell me how strong I am. Of course, it is a perfectly standard, commonplace thing to say to people who have had cancer. If you have ever said it to me, please do not feel bad, do not feel like you did something wrong. I have said it to many people in similar situations. I will probably say it to others in the future. But it makes me cringe every time, and I want to be open about it.

Hearing that feels both like a compliment and a slap in the face, a duality which is exacerbated by the fact that I am responsible for people thinking of me that way. After all, I am the one trying to project that image, and still I am the one cringing when people recognise it, I am the one feeling sick, like I have been telling a lie that people believe. To quote a phrase that I have been using in every blog post so far – it makes no sense. I am happy to hear that people feel that way, see me that way. It makes me proud, it makes me feel like I am not as much of a failure as I feel most days. But it also hurts, because it feels as if they do not see how much I am struggling. They are ignoring my pain, ignoring the fact I was not cured with a simple snip of the scalpel, that it does much deeper than that. It feels like they will not allow me to be weak, they will not allow me to tell them I am not coping. Instead, I feel like I need to keep pretending, again and again. Keeping up appearances, forever.

But it is ok to be weak. It is normal. It does not mean I cannot be relied upon.

I remember when I first told my team at work. There were tears, there were words of support. But over the next days and weeks, I realised they had started avoiding telling me about their problems. They wanted to spare me. They wanted me to focus on my own issues, they felt like their work wobbles, their doubts, their personal troubles were somehow less relevant now. But it was not the case. I still want to be able to help and support everyone. My team need me. My family need me. My little brother needs my shoulder to cry on, he needs my enthusiasm, my support, my help to prop him up during a difficult time in his own life. It is a struggle, because I only have so much energy and emotional capacity, but I like it. I like knowing I will be there when they need me. ‘If you be weak, then I’ll be strong / When the night is long’

It is very contradictory. I do not want people to treat me differently because of cancer, but I also do. When I let people in, when I tell them about the last year, it is not because I somehow want them to feel bad for me. I do not want, I do not need their pity. What I need is for them to understand that, despite everything I show the world, I am also weak, and I need them to be strong for me. I need shoulders to cry on too. I need support. I need to be allowed to be weak. I need to know I can let go, and that things will not fall apart when I do. I am a broken vase that has been hastily put back together. I am vulnerable, but I still hold my shape. I need you to be there, super glue in hand, for the next time a crack opens up, and water starts pouring out. ‘If I be weak / Won’t you be strong / When the night is long’

*Armistice by Patrick Wolf. A masterpiece that has been playing on repeat on my phone and in my head since 2011.

One Step Forward, Two Steps Back

Getting better. That has basically been my only goal since I first received my diagnosis last year. Everything else, life, friends, relationships, work, the future, it all took a step back, to allow me to focus on this one thing. Getting better is the aim, after all.

I always pictured my experience as a hurdle that I would need to pass. After that, life would start again, it would go on, I would be on a clear path to getting better and back to normal.

But as time goes by, and I start having first-year anniversaries of all the significant milestones of my diagnosis and treatment, I realise that getting better is not a straight line. It is full of curves, of hills that I thought I could not reach until I conquered them, of slopes that are too steep, too fast for me to go down safely. It is not an easy path.

There have been milestones throughout the year. So many moment where I thought ‘I have done this, now I will be fine’, only to reach a new low after a few weeks.

There was the operation, on 19th December. The day they told me the cancer was confirmed as Grade 1, Stage 1a, and no further treatment would be needed, on 13th January. The day I was prescribed hormone replacement therapy, on 26th February. The day I received a letter telling me there was no sign of a genetic mutation, sometime in late spring. The day after my first in-person follow-up, on 28th August. On those days, I felt relieved. I reached a new high each time. I felt like nothing could touch me. Depending on the appointments, I had been reassured that I was doing ok physically, or at least that things would start looking up.

But because there are highs, there are lows too. And every time I feel great, I know now that it is not going to last. That no matter what I do, there will be a point where I feel anxious, where I feel low, where I feel down again.

It can be overwhelming, this feeling that whatever you do, there is no progress. I am stalling. I am wary of even thinking things are fine, because I know there will come a time, pretty soon, where I will struggle again. I am afraid of getting my hopes up, because I fall harder every time.

I am at that point again, two months after my latest check-up, and a month before the next one, where I start panicking again at the thought that something might be physically wrong with me. That the cancer is back. I have nightmares about it. I wake up thinking about it. I go about my day, and I think about it every minute. I try to go to sleep, telling myself that I am another day closer to receiving bad news again. It is completely irrational. I know the chances of it happening are very low, but I cannot control it. I have tried CBT, I still try and undo this negative thinking pattern, but it all-consuming.

I feel anxious, and I feel low. Because so much of my energy is focused on this, I feel tired all the time. I feel unmotivated. I do not have the energy to do anything. I try reading a book, and I have to give up after two pages, my brain will not let me focus on it. I will watch a film and switch after ten minutes.

I feel all the emotions, all at the same time. I feel sad. I am downhearted. I feel angry. I am frustrated. I cry. I am mad, and I slam on my keyboard. I swear at myself, I swear at clients, I swear at my friends – but only in my head, and in my flat.

What I thought helped does not anymore. I thought that yoga helped me relax, and now I just cry at the idea of lying down on my mat. I thought medication was working, but I feel worse than I did weeks ago. I started doing crafts again and thought I had found my focus again, but I have to force myself to pick up my knitting needles at the moment. I thought that writing had really helped, that it had allowed me to put words on my feelings, that I was seeing the light again, only to realise that I have taken a huge step backwards, and I am now back where I was six weeks ago.

It is disheartening. I keep feeling like things are looking up, only to be disappointed again. Disappointed in myself, both for letting myself feel like this and having had the hope to think that maybe, it would not be the case this time.

It is a pattern I will have to get used to. Triggers that I will need to identify, and can prevent before I fall into a downward spiral again. What started it this time? I cannot pinpoint a single factor. There are a multitude of reasons, some more personal than others. Cancer anxiety. Family issues. Politics. Workload. Lockdown. Worry about not being able to finally go home at Christmas, and see the family and friends I have not seen for over a year. Watching my friends achieving things, reaching their goals, whilst I am still here, stuck in my post-cancer rut, unable to move on.

Thirty days until my next appointment. I know that if everything goes well, a new high point awaits me on the other side. And it is higher, better, deeper each time. I will feel happy again. I will feel like I am back to normal again. But if you are looking for me in the meantime, I will be hiding under a blanket with a Christmas-scented candle burning next to me.

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.

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.