Coming Out Of The Dark

Last Friday I was getting ready to go in to work, I was running a little early, so decided to give the hospital a call to re-book my appointment with the liver transplant surgeon. By now I had just about calmed down from the previous disastrous visit to his clinic, so made an appointment for next Friday. I managed to get a late appointment, which was perfect, as it meant I could still go to work then travel on to the hospital afterwards. So the receptionist confirmed the date and time and just as I was about to put the phone down, he quipped, "there's no guarantee the surgeon will be there though, you'll probably see a member of his team instead". Brilliant!! It was impossible to get an appointment with this man! And not only that, nobody at the hospital seemed to have a clue when he was actually due to be there, if at all. "I'm beginning to wonder if this man actually exists at all!" I half joked as I put the phone down.

Because I have so many, I keep all my appointment letters and hospital correspondence together in a file. After I made this new appointment, I went through my file to remind myself of all the other appointments I have coming up, the scans, my consultation with my general consultant, my appointment with a doctor who helps me control the itching caused by poor liver function, etc. As I was going through each piece of paper, I noticed that the appointment letter to see my general consultant in a few weeks had another patient's name on it. I had made the appointment in person only three days before, and was standing in front of the receptionist as she booked it. She had my file in front of her with my name plastered all over it, and had just booked my scans, and managed to do that in the correct name! So I called the receptionist to rectify the problem, and was told I could no longer have this appointment as the other patient named may turn up. I tried to explain that I had made the appointment in person, so it was definitely for me, just with the incorrect name on the paper, but I was told I was wrong. The receptionist said that it certainly wasn't her mistake, and I would have to book another day, she added that the next available appointment was two weeks after that. "I don't think so", I said, "the appointment I booked is already three weeks away, and it's to pick up scan results which may show my wait for a decision on a possible transplant has been in vain. That's long enough to wait, don't you think?"
"Ok fine." She replied "There's one on the same day at 11:45am". Strange, I thought, that an available appointment had just sprung up suddenly out of nowhere.

So I emailed my consultant, I explained that I had booked an appointment to see the liver surgeon for next week, and that there was still no guarantee I would see him, but instead a member of his team again. Within two minutes my consultant called me. He told me he had spoken to the surgeon the previous day, and that I should have been contacted by the surgeon's receptionist to tell me to come in that Friday afternoon, I had an hour to get there!!! I was frantic!! My consultant added that the surgeon wasn't around the following week for the appointment I had just made, so unless I wanted to wait another three weeks to see him the next time he was in clinic, I needed to get there straight away. I called work to let them know the situation, and called my mum, who left her work immediately to come with me. Isn't it funny how the people who are supposed to be as helpful and supportive as they can, i.e. receptionists and hospital support staff are actually, often, very difficult, and yet the people at both my work and my mum's showed unimaginable compassion as they told us to drop everything and get to the hospital.

I was told to be there for 2:30pm, mum and I raced through the doors and up to the reception desk just after 2:25pm. And there we sat for four hours. Patients came and went, the receptionists left, I was starting to worry that the surgeon had gone home also. But just as it turned 6:30pm, he called me into his office. I felt sick, I couldn't believe after all the waiting, the stress and frustration I was finally going to get an answer.

He was a tall man, and loomed over me as he shook my hand and apologised for the time it had taken for us to finally meet. I wanted to let him know that I was angry with him, and his department, for the way I had been made to wait. Throughout the four hours mum and I had been waiting outside his clinic, I had prepared a speech about the fear I felt that I had waited too long, and that I could have started chemo months ago - especially if he was about to tell me that, in his opinion, a transplant was not an option.

But my anger and frustration melted away as he told me I was a good candidate for surgery. He examined me and laughed as he said it was as if there was absolutely nothing wrong with me. "That is my point", I told him. "As far as I know, I'm healthy and clear everywhere else and have been for seven years now. I don't feel ill, I'm not in pain like I was when I was diagnosed the very first time ten years ago. This disease seems to be targeting my liver, so perhaps if it was replaced I might have a good chance".
"I think you're right" was his reply. I couldn't believe what I was hearing, it was like receiving the most wanted and appreciated Christmas gift ever, it was difficult to hold back the tears. He explained that legally, before he performs any transplant operation, he needs to submit every case to a sort of international board of surgeons for their approval. He said that he couldn't see that there would be a problem, but added that there was an alternative operation he could perform, which he actually invented(!) if the board did reject my case.

But I got frightened as I realised just how dangerous these operations are. As he quoted mortality rates at me, I could feel myself running back to the idea of chemo. It sounds ridiculous, but I guess because I've had so much of it before, and got through some really dark times, chemo treatment seemed like a much safer bet. He told me that the mortality rate within ten months of having a transplant is 5-10%, if I had the alternative operation, the mortality rate is over 10%. "It's your decision", he said, "whether you would consider the alternative surgery if the board reject your case". I told him over 10% is too high risk for me, and that if I couldn't have a transplant, I would have chemo instead. "Yes", he interrupted me, "that's the wrong decision" he said looking me straight in the eye." Chemo will only buy you a bit of time, I want to get rid of this completely".

So that was it, the decision was made for me -which, in this case, is how I prefer it to be. And I walked out of his clinic with a weird mixture a feelings, I was frightened, very frightened, but so elated too. Elated that he could see a light for me, that he was standing beside me in this exhausting battle.

So, in a couple of weeks I'll have my scan results. If they show that the disease has spread, then we're back to the drawing board. But as things stand, I'm hoping that it is still contained in my liver and the board can make their decision.

My life is in one man's hands whichever operation he performs. And although that leaves me feeling incredibly vulnerable, it actually goes hand in hand with making feel overwhelmingly protected.