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.

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