Calling the shots
I woke and dressed and it was now early evening. The taxi arrived very quickly and we were on our way to Kings College Hospital in Camberwell, London. Checked myself in to the hospital and took a seat in the waiting area.
After answering many questions at the front desk and then similar questions again with the triage nurse, I was eventually called through to see a doctor. Questions. Blood samples. Questions. Tests. Questions. Poked, prodded and more questions.
I was asked if I would consent to a routine HIV test as they were adding 2+2 and coming up with 5. I was asked if I had been abroad and if I had been vaccinated for this and that. The HIV test was just a routine test to rule out every eventuality. They were coming round to thinking I had pneumonia, though this had yet to be confirmed and they soon let me know I was not going home that night.
By midnight I was in a hospital bed and trying to get some sleep. They were pumping strong antibiotics into me and waking me every couple of hours to take more blood and carry out their routine tests. They were monitoring me very closely. Something I’m grateful for now, but at the time, all I wanted was to sleep. I wanted rest. I just wanted to close my eyes and for the world to go away. I felt so weak. At least I had an answer, I had pneumonia. Well, at least I was being treated for something that had finally been diagnosed. How little did I know?
During the night I had sweated so much and several litres of fluid had been pumped into me. I was still hot and cold and the antibiotics had only just started to do some work. I could feel them working but my symptoms were still very evident. I was feeling a little more together by the morning and on reflection my night hadn’t been too bad and I had a room to myself. Though they were still not 100% sure about what was wrong with me.
The doctors and nurses were being extra careful and were wearing face masks and scrubbing up and down after all close contact with myself. The news stories last November were of Ebola and they said they were taking all precautions for all eventualities. I remember thinking how much of an inconvenience this must be for them but I guess they were used to it. It was just another part of their job.
During this time some of the test results were coming back and one of the first ones to come back was my liver test. It was not functioning as well as it should be and that they would carry out further tests over the coming days. Other test results came back as negative or normal.
I had been moved from the admittance ward to another ward within the hospital and still maintaining a room to myself. The doctors and nurses were still scrubbing up and down before and after leaving me. Though, this made me feel like ‘what the fuck is wrong with me?’ It was nice being treated and yet still maintaining privacy. It was something I was appreciating, especially as this was an NHS hospital and we are in London after all. Hospitals must get so busy here.
21 November 2014. My D-Day
Mark was visiting me when one of the consultants came to see me. He wanted to see me alone and so Mark left the room. There was absolutely no emotion in his face. I knew there was something wrong. I knew he was going to say something that was not going to be pleasant. My mind was working overtime yet my face and my expressions remained calm. I knew he was going to deliver some bad news. I thought the absolute worst yet was talking to him like it was just going to be a casual conversation.
He said the routine blood test for HIV had come back and the result was indeterminate.
I could feel the life drain out of me. My mind was here there and everywhere. I felt I was in a bubble. Not taking it in and just feeling absolutely numb. The doctor was talking to me and yet I was not listening or hearing his words properly. They believe I have HIV and they are treating me for PCP Pneumonia.
For those few moments everything just stood still. I had just been dealt a massive blow. My mind was not functioning. He said I have HIV but how could I? I was denying it to him. That can’t be the case I declared. That’s not possible. I knew it's not possible. How could that be? I wanted another test to rule this out as I didn’t think that was possible. I’ve not had sex for years (side effect of being married). So how can I have HIV? (Said the stupid, ignorant me to myself) He said that they were going to do another test though the result of this test would take longer to come back. It was going to be done independently of the hospital and we would have to wait to find out. In the meantime I would be treated as if that were the case. My pneumonia would be treated as HIV related.
He asked if I had any questions. I didn’t. I didn’t know what to ask.
Slowly the realisation was sinking in yet not sinking in at the same time. I had just been given life changing news and I couldn’t deal with it in my mind. It felt like I was on a TV show or a scene from a film. It was not reality. It was not my reality. This is not my life; this was someone else’s life. Where had this news come from? What was going to happen to me?
The doctor left and Mark came back into the room. I told Mark the news and we both agreed that they had it wrong and that the results would come back fine. Dismissing what the consultant had said completely and the notion that this was even a possibility.
They were still trying to figure out what was wrong with me. The HIV results had still to come through officially. Though, they knew. I knew. Everyone knew. I thought the world must know yet my mind was not letting me know what the real truth was. Yet only tests could prove it.
It had been nearly a week and I was now on a main ward within the hospital. I still wanted and needed rest. I was not getting it. Still being pumped full of drugs constantly with yet more needles and more poking and prodding. The noise from the main ward at night was just too much after having the fairly tranquil quiet of the side rooms that I had the past week. If I was to get better then I was only going to get better by being in my own bed in my own home. I was jumping ship. Enough was enough.
I spoke to the nurse in charge and told her to make it a reality for me. I was out of here. Looking back I was running away. Running away because if I run then this can’t catch up with me surely? I had enough strength to play at being the drama queen and I was hitting the road.
Before that happened I reluctantly agreed to one final test. A bronchoscopy. No idea what it was but I said no more needles. I told the consultant only if no more blood was taken and nothing was injected into me. I was sick of all the tests and not having the answers. NO MORE.
He made a call and I was told my terms would be met. I was being a childish prick. Calling the shots was me being in control yet I was not. The situation was in control of me and I felt cornered. My reaction was fight or flight. I wanted out. I knew that unless I agreed there was no way forward.
I was soon wheeled off to a room at the other end of the hospital. The doctor there explained what the procedure was and I just wanted to run (that’s a lot of running for someone who is not able to manage a flight of stairs). I knew if I just gritted my teeth I would be out of there quickly.
The camera was covered in an aesthetic gel and I was given a mild sedative. Up into my nose and down the back of my throat the camera went off to do its job. I was coughing and gagging. The procedure was over relatively quickly and the results would be back in a day or two. They were doing some tests connected to the Pneumonia. They did explain why, though I don’t recall the reasons now. Information was going in and I was dismissing it immediately.
I was free to leave. At last I could get myself back home and get myself better again. Life is not quite that quite straightforward is it? I can remember thinking to myself that at least I get to have Christmas off work. When you work in retail that is the best present ever! I’m not sure about the trade-off. This is not a throwaway Christmas present. This is for life.
What happens now?
To be continued . . . .,
This article first appeared on Leigh’s own blog here.
About the author: Hello. My name is Leigh. I'm originally from South Wales though currently living and working in London. I moved here in the summer of 2014 from the south coast of Dorset, UK. I lived there for nearly 6 years before deciding it was time for a new adventure. Little did I know that on my travels over the years and the adventure that lay ahead, I was a carrier of something inside of me. I was diagnosed HIV+ positive in November 2014. This blog is my journey from diagnosis to now.
You can follow Leigh on twitter @Reimagined_Me here.