Erasing the Stigma of PTSD

I must have been about 16 when I first heard about PTSD. It was on an episode of Grey’s Anatomy, one of the very few storylines I still remember more than 10 years later.

Like so many other people, at first I was convinced that PTSD was something that happened to people in the armed forces, something that veterans suffered from. A mental health condition which, unlike depression or anxiety, would have very little chance of one day affecting me.

It took a few years for me to encounter it in another context. I remember reading that someone famous had suffered from it, and thinking ‘they haven’t been to war, that’s not it. They’re exaggerating’. As I got older, I realised how wrong I had been.

PTSD Can Affect Anyone

Post-traumatic stress disorder can affect anyone who has had a traumatic experience. And any situation that someone finds traumatic, even if it would not necessarily have been considered traumatic by someone else, can trigger post-traumatic stress disorder. An accident, childbirth, the loss of a loved one, assault, those are just a few examples of events that can lead to PTSD.

PTSD can happen at any time after a traumatic event. It usually starts within a few months, but it can sometimes take years to develop, even decades if memories have been buried deep.

The first time someone told me it sounded like I was suffering from PTSD, I shrugged it off. They were the words of a friend, in early summer 2020. I was only a few months out of surgery. Surely it was normal to feel anxious, to replay conversations in my mind, to see the same scenes over and over again, to be easily triggered, to have excessive emotions, to feel numb, to refuse to talk about my situation, to avoid places and people that reminded me of cancer. Surely, it would pass.

It did not pass.

In August, a psychologist told me they believed I could be suffering from PTSD. All the symptoms I described to them, my daily struggles, were consistent with an anxiety disorder, low mood, and trauma-related mental health conditions. Post-traumatic stress disorder was a likely culprit.

The Stuff of Nightmares

I will not get into the details of all the possible symptoms of PTSD – I am not medically trained, and there are so many resources online that can offer help and advice (I will link a couple of them at the end of this post). All I can talk about it my experience of trauma, the symptoms I have that are consistent with a diagnosis of PTSD, and how it affects me at the moment.

I have had regular flashbacks for months. Moments when I lose track of where I am, and find myself reliving parts of my cancer journey. I am irritable. For months, I felt completely numb. Now, I have all of the emotions, all of the time. I have insomnia. I live in fear that something bad is about to happen. I startle easily. I avoid places that remind me of cancer. I feel sick talking about my diagnosis. I get triggered by the smallest thing – a picture of an ultrasound or a letter from the GP in my letterbox. Smells, noises. Lights.

For the last few weeks, I have been dealing with one of the nastier symptoms of PTSD: nightmares. They happen every single night, at least once, sometimes three or four times.

I will wake up feeling panicky, exhausted, sweaty, terrified. Some of the nightmares are very clear – they are memories of the worst moments of the last few years that will play in my head, over and over again. So much that I feel lost. I feel like I am back in those horrendous months before surgery. I will be reliving hospital appointments, tests, results. Sometimes they are painfully close to reality, sometimes I get told my cancer is terminal. Sometimes I do not make it out of surgery. Sometimes I learn that someone I love is going through what I did, not me.

Some of the nightmares are only vaguely related to cancer, but feature hospitals, bad news and people getting hurt. They are disturbing, sometimes violent, they often end with me walking around aimlessly. I get lost in hospitals. I wait for hours in a waiting room that gets darker and darker.

Have you ever been terrified of closing your eyes? Have you ever cried of exhaustion, knowing at the same time that you would get no relief when sleep would take you? Have you ever been afraid of what your brain would make you go through when you needed a nap?

I fear sleep. Every night, I push back the time when I will actually go to bed, because I do not feel ready. I do not want to face the nightmares again. I do not want to wake up after a couple of hours, even more tired than when I went to bed, craving the thing I also want to avoid.

Each night, the cycles repeats. Fight sleep. Push back my bedtime to 10pm, 11pm, 12pm, 1am. Fall asleep, sometimes despite myself, sometimes with the lights on. And wake up, after a couple of hours, feeling absolutely spent, frustrated, heart racing and tears all over my face.

I think the most I have slept on a single night, in the last three weeks, has been about five hours. These days, it is closer to two or three hours a night.

And as a result, my symptoms during the day get worse. I am even more prone to tears, even more irritable, even more disconnected from reality. Even more likely to have an anxiety attack for the smallest thing.

I am tired.

We Are Not Alone

I know so many people with PTSD. Friends, family members, slight acquaintances. I have read about so many more people having it, living with it, trying to overcome it.

Our experiences are all so different, but they are all valid. Do not let anyone tell you you cannot have PTSD because your situation was not traumatic enough in their eyes. Do not let yourself think you cannot have PTSD because your trauma was somehow less than someone else’s.

Trauma is personal. Trauma is subjective. Trauma is welcome to pack its bags and go away.

Useful links:

https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/symptoms/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd-and-complex-ptsd/about-ptsd/

https://www.ptsduk.org/

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.

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.