Walking Down Memory Lane, Part Two: Confrontation

There is something thrilling about making yourself face your fears. An excitement that pushes you to go forward, even though you would rather stay curled up in bed with a nice cuppa. Adrenaline.

After a long week of no-sleep and exhausting anxiety attacks, of terrifying flashbacks and endless crying sessions, I finally had to take the plunge. Go into work, the place which in the last few months had become the personalisation of my cancer journey.

I was lucky enough to have a scheduled session with my cancer therapist the night before going back into the office. I had not cried that much, or shared that much of my fears in a session since my last hospital appointment. And I got more than a few tips out of it: tell my manager in advance that I might be upset, and why, allow myself plenty of time to make my way there, remember that I can leave at any time, let myself be upset rather than trying to shove it all down, breathe, breathe, breathe.

That morning was tough. I tried to stick to my routine, despite waking up before 4am. Hop into the shower, dry my hair, read for a bit, ponder going for a swim then deciding not to, so I do not have to rush to the train station. In the four hours between waking up and catchingmy train, I must have thought about cancelling a dozen times. Cried my make-up off three times, and re-applied it thoroughly. Using it as a veil to conceal my lack of sleep, but also as an incentive to keep it together. I am vain enough to not want streaks of eyeliner down my face because I have been crying.

I was a mess. I felt tears coming up on the way to the train station. I felt sick, I felt powerless. I took the same route I took the day I went into the office after my diagnosis. I walked on the other side of the pavement.

I am always late, but that day I was early. Early, and alone.

My psychologist had suggested talking to a friend on the phone on my walk from the train station to work, or listening to a podcast, distracting myself. I could not do it. I needed to process things on my own, and in the relative silence of the Buckinghamshire countryside.

That walk usually takes about 20 minutes. On that day, it took me 40.

Now, ten days later, I could not tell you what I thought about during those 40 minutes. Or how I felt. It is all a blur – which I have learnt to appreciate as I usually have such vivid memories of my bad experiences. All I know is that I made it to the business park where the office is without losing it.

I went to my building. Everything felt surreal. I was comforted by the fact I was alone. No witnesses. No-one to watch me break down.

I struggled walking up the stairs. Those stairs I climbed so many times between my diagnosis and the operation. But back then, I was never on my own, but with my friends supporting me, virtually helping me up the stairs. The five short flights of stairs up to the second floor never felt so high as they did that day.

I had to stop before walking through the doors. Looking at the stairs leading up to the roof, where I sat one day in October 2019 before going on lunch. Where, as we were alone waiting for the rest of our group, I told a friend that I had something to tell him, he would know soon enough anyway, and the friends we were having lunch with already knew – I had just been diagnosed with cancer. Womb cancer. It looked like early stage. I would be fine. He had no words, asked if I was okay, I wiped my tears and put my face back on.

I still picture myself sitting on those stairs. They have meaning now.

I walked in. Past the meeting room where I once had a breakdown mid-call and had to leave to have a cry in the loo.

Past the other meeting room where I told my dad on the phone, where I told my team in person, where they gave me an advent calendar they had made to cheer me up during the recovery time after surgery, where I spoke to HR about what was going to happen next. I did not look at the door. I do not think I will be able to step foot into that room again for a while, if ever.

It was overwhelming. Sitting at my desk. Setting up for the day. Did I want a tea, a coffee? Just water. I could hardly swallow as it was.

It came in waves. One minute I would be focused on work, the next I would get assaulted by memories. Feeling lost. Feeling the tears come up.

My manager and I went for lunch, to catch-up in person after so many months apart. But we went to that coffee shop where, every lunchtime for two months, the thought of cancer had dominated every conversation with my friends. Where I explained my diagnosis to someone in person for the very first time. Where, for the first and only time, I told someone I did not want to die.

I could barely eat. I felt hungry, I felt sick. Making new memories in a place riddled with thoughts of cancer seemslike a good idea, but also so out of reach. I wanted to try. It was probably too much for me on that day. Too many firsts, too many steps forward.

I breathed through it all. I thought of going home after lunch. The words of my therapist rang in my ears. You don’t have to stick it out. If you need to go home, if it is too much, go home.

I knew the moment she said it I would not do that. I know having the option is crucial, and I know I should not force myself to be in uncomfortable situations for longer than I need. But I am too proud, and I refused to give up. I stood my ground in my fight with my own doubts and went back to work for the afternoon.

Was it the food? Was it hunger, because I had barely eaten anything but a few bites of that cheese toastie in the last 24 hours? Was it nerves, the stress of it all? I was physically sick for the last two hours of my working day, and on the train journey home. I was exhausted, full of feelings, doubts, memories. After trying to act as a functioning human being for eight long hours, I was done.

It was too much, too soon. Too brutal. I should have given up earlier in the day. And I tell myself next time I will, I will be able to stop when my body has had enough, but I also know I will probably keep going. Because it is who I am, and I do not want to lose that little sparkle of my identity when I have already lost so much.

Looking back, I feel proud. I did it. I walked into that place which holds so many memories of my cancer journey, and I survived.

Sure, I had a bad day. I was exhausted. I was not able to follow the advice of my therapist. I was sick. I had more unwelcome thoughts and memories than on any other day in my recent past. But I did it.

I also know myself better. I feel proud of having identified, before I even went in, that that place might be a trigger. It could have been fine on the day. But I know myself. I know my mind, even just a little bit. It feels like a victory.

And you know what? The lead-up to it was worse than the day itself. The wair dragged on, a low-intensity anxiety that took over my life for a week, interrupted by full-on panic attacks. The feelings and flashbacks on the day itself were intense, but it was over after eight hours, and I was able to go home. I survived it, like I survived cancer.

I would not be able to do it again, day after day, in my current state. I felt like I needed to sleep for 48 hours after that day, and I doubt I would have been able to have another day like that without fully breaking down.

Next time, I will have more tools to help me cope with it – more therapy sessions, a better understanding of who I am and how my experience of cancer is linked to that office. I will have tried different psychotherapies.

But most of all, I will know that I can do it, because I did it before.

The Ghost of Cancer Past

I woke up this morning in my mother’s guest room at home, a kitten biting at my bare feet, head pounding.

My first conscious thought was that I really should close my bedroom door. The second one was that today was the one-year anniversary of the actual operation.

365 (well, 366 – obviously 2020 had to be a leap year) days since life-changing surgery. A year ago, at the time I am writing this, I still had a womb. I still had ovaries. I still had cancer.

I would be lying if I said I did not feel a sense of loss. But strangely enough, it is not only the loss of my reproductive organs that I feel today. I also mourn the fact that this is the second-to-last one-year anniversary that I will have on my cancer journey. Today, and then all that is left is the 13th of January, the one-year anniversary of the final staging, the day I was told that for all intents and purposes, and as far as doctors could tell, there was no trace of cancer in my body. I was in remission.

For a year, I have clung onto these dates, the small anniversaries of each step in my cancer journey. They were frightening, I dreaded them, each one more intense than the previous one. But I also found comfort in them. I reached milestones. No matter how hard those days were, they made me realise I was moving forward. They helped me retrace my journey and let go of feelings I did not know I have.

Tomorrow, I will not be able to say ‘I had surgery less than a year ago’. I will not be able to use it as an excuse for however I am feeling.

In four weeks, I will not have any more one-year anniversaries to celebrate. It is daunting. It feels like I am losing a timeline that helped me stay anchored for the past year.

I did not expect to feel that way, I did not even expect that I would think about those anniversaries coming to an end. I am discovering more aspects of my grief every day.

Am I looking forward to being free of those dates? Will things get easier when I do not wake up each day knowing exactly what I was doing a year ago? Will I rejoice in the fact that, come mid-January, I will no longer associate each day with memories of cancer?

I will not blow a candle today. I will not celebrate the birth of my new womb-free, cancer-free body. But I will light a fire in the living room (I am not turning into an arsonist – there is a fireplace), and let it consume a year’s worth of memories and grief for the organs I no longer have.

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.

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.

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.