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.

The Post That Started It All

Although I have always loved writing, I had never thought of writing a blog to share my experience. One the eve of the one-year anniversary of my diagnosis, I decided I wanted to share my experience with people, and wrote and shared a long facebook post. The response I received was overwhelming. People reaching out, comments about how much they related, how much they appreciated that I had shared that with them. I realised that not only had sharing this post lifted a weight off my chest, but it had helped others as well. And overnight, the idea to start a blog came to me, and I decided to make the jump. The post below is taken from the message I wrote on that night, the 14th of October 2020.

If you know me, you probably know I am not a fan of feelings.

They are unpredictable, they are messy, they make you vulnerable, they are overwhelming. I am uncomfortable experiencing them, let alone talking about them or sharing them on facebook.

I have been thinking about it a lot this past year.

A year ago, if you had asked me where I would be in a year, I probably would have given you some positive, commonplace and deliberately hopeful answer, like ‘oh, I hope I have my life together, a good job, a boyfriend, maybe a new flat, I will have made some progress with my writing, started a small calligraphy business, who knows.’

Well, let’s be honest, it turned out slightly differently.

Tomorrow morning, I will wake up and it will have been a year since I was given a diagnosis of cancer. A year since I first cried in front of friends, family, and strangers (I will make an exception for all those times I cried when I was drunk before – it does not count), and since I started doing it most days, because it is often the easiest answer to the question ‘how are you doing?’. Crying is not a feeling, and it is all my feelings at once.

I truly thought that when the dreaded one year mark would come up, I would be feeling all positive, ready to put it all behind me. After all, the prognosis was extremely good, the operation went well, I am expected to make a full recovery, recurrence is fairly unlikely.

But then, cancer had been very unlikely too.

A year is the perfect moment to turn the page on everything that has happened. A new chapter, a new beginning, that is what everyone has been saying, and I have too. Only, I have been lying.

I still cry every day, and that is not likely to magically change from tomorrow. I think about it every day, I think about the exact moment, at 9.10 in the morning, when I saw the first of scores of doctors. I cannot remember the name of the surgeon who operated on me, or the nurse who chatted to me whilst I was recovering, but I can remember the name of the doctor who gave me the news, telling me he was not supposed to be the one to tell me, as he had no interest in oncology, that it should have been done differently, not at a routine appointment, that he wished he was not the one delivering these news, that they should have asked for someone to come with me, that they did not because they did not expect it, that they did not even have a specialist nurse available.

I did not cry, even as he explained what the treatment would involve, and what it meant for the rest of my life. I asked if I could call someone. I had no idea who I was going to call. I could not even think straight, but I was obsessed with the idea that I had to save face, that I would not cry in front of him. They set me up in a quiet room with a cup of tea – even asked me what kind of tea I wanted. I took out my phone and without hesitating, I called my mum.

And then I started crying.

I have not stopped. I cry in the mornings, I cry when I make a cup of tea, I cry when I look at my scars, I cry when I think about the plans I had a year ago.

I am not turning the page, I am continuing to write on a scroll that only gets longer and longer, and that is ok too.

I have had the best support over the past year. Friends, family, colleagues, housemates, Macmillan nurses, everyone has been fantastic.

I still do not like feelings. I do not talk about them, but I have started writing them down, in the hope that in the future, I will be able to make sense of them, and help someone else like people have helped me.

I will continue saying I am fine when you ask me how I am doing.

And one day, it will be true.