The Road to Recovery
I haven’t contributed to The Road to Recovery series for a while. I said in another post that it was likely to go quiet for a while, as the next significant stages in the process are few and far between. My next progress scan is currently expected in the middle of May. That is the scan at the end of the 12 chemotherapy sessions, and the one where I am hoping to receive good news – that I can be operated on. I did have a setback of sorts yesterday, though, which is what I want to talk about in this post.
It’s been a tough couple of days. What started as some fairly routine abdomen pain on Saturday ended in a 7 hour trip to A&E yesterday. Luckily, it doesn’t seem to be anything serious, but there were a few twists and turns that made it an interesting day. Anna and I have drawn a few conclusions from it. Firstly, if I need to go to the hospital, we’ll opt for the hour-long drive to The Christie regardless of how much pain I’m in. Secondly, I will never take the words of a man seriously if he is simultaneously trying to usher me out of a room and diagnose me with bone cancer at the same time, even if that man happens to be a medical professional.
Abdomen pain is quite normal for me these days. Since starting chemotherapy, it’s actually gotten much better than before. I still regularly get it, though, and I’ve mostly learnt to live with it (occasionally calling on my friend Codeine, but usually coping without).
Not many people know this, but the pancreas is one of the most spoilt organs in the human body. I know it because mine likes to hurt if I make it work too hard by daring to do provocative things such as eating or sleeping on my back. How dare I? As a result, I frequently get it in the morning because of how I’ve slept, and sometimes after I’ve eaten, although the pain can be a bit unpredictable around food. It’s like a hungover teenager, rolling over in bed and moaning at you as you shout “it’s breakfast!” at 11am; they aren’t happy even when you take the food to them.
The tumour impacts my pancreatic functioning. Usually, your pancreas will create enzymes that break down food. Mine doesn’t do this properly anymore, and never will again, apparently. I’ve also been told that I’ll probably be diabetic someday as the organ is also involved in regulating blood sugar levels. It is similar to Type 1 diabetes, meaning I’ll have to inject myself. Luckily I’ve been getting lots of practice in because I have to inject myself during chemotherapy anyway. I’m not sure if that is the correct use of the word ‘luckily’, but anyway. There’s no love lost between me and my Dancreas these days. It’s a shame we have to share the same body but I like to think I’m a diplomatic person. We’re making it work.
The abdominal pain this weekend was much worse than it has been. I stuck it out throughout Saturday and Sunday assuming that it would start to get better eventually. Sunday afternoon it did actually die down considerably, allowing me to enjoy a meal with my family for my mum’s birthday. Come Monday morning, it was worse than ever. After 2 hours of it, we decided something needed to be done.
I finally called The Christie hotline to get advice. From the symptoms I had provided, I met a threshold that required me to be checked by a doctor in person. The guy on the phone was extremely helpful and said he’d speak to my team and see what they suggested. He called me back about an hour later and said that I needed to get to a hospital in case I have an infection. As The Christie is an hour’s drive from my parent’s house, we agreed that going to Leighton Hospital A&E was best, as it was only 20 minutes away. He said he would let them know that I would be attending.
We arrived just past midday. I was quickly triaged and brought through to an assessment bay. The team told me that I’d have to stay there in case my immune system is compromised. Essentially, they didn’t want me with the diseased folk in the waiting room because the chemotherapy may have hammered my immune system to a point that it doesn’t really work anymore. It sounds like a luxury, but I was sitting in a white room with an open curtain, decorated only by a single plastic chair and a shelf with a computer on it. The doctors and patients were walking past and looking in like it was an exhibit at a zoo.
Within about an hour, a nurse had put a cannula in and taken my blood. She told me they were testing for infections. Then… nothing happened for about 4 hours. The plastic chair was killing my back, so I was laying on the floor in the inspection bay and trying to sleep. The abdominal pain was coming in waves. I asked for a drink of water about 5 times over the space of 3 hours before realising I was being unreasonable. Eventually, I told Anna where I was and she managed to find me; she had been waiting in the waiting room and working. I finally had some water and even a spot of company.
Approximately 4.5 hours after arriving, 2 medical-looking people were standing outside the bay. I heard the male say to the female “why are there people just sitting around in the inspection bays?” Our relationship wasn’t off to the best start.
“Sorry, I was told to come in here in case my immune system is compromised. We’re still waiting for blood test results.” He muttered a few things to himself before walking into the bay and standing at the computer. “I’ll check if your blood results are ready. We need you to move out of this bay,” he reluctantly said, among a lot of other things about not loitering in bays. He was really determined to make his problems my problems. I’m not sure what I’ve done to this man, but he seems to want to punish me for it. Maybe he thinks cancer is contagious so was angry at me for being in hospital. Maybe he has an extremely stressful job. It’s probably a bit of both. The good news was that my infection markers were normal, meaning it was not an infection. It was the information that came after that which caused us some concern.
“One of your liver markers is high. What type of cancer do you have again?” I told him that I had pancreatic cancer and the confused look on his face deepened. He explained that when only one of the liver markers is high, it is usually a sign that bone material is breaking down. He then casually said that this is a primary symptom of bone cancer. All of it was going over my head at the time; I thought he was just shooting the shit with us and giving us some information. “At least both markets aren’t high then – that’s good,” naivety lacing my every word. He turned to me and defiantly said “neither of them being high is good.” It was becoming almost comical how much this guy did not want to deal with me.
After talking more about bone cancer, asking if I’d had a full-body CT scan and looking even more concerned when I said I have had back pain in the past few weeks, he finally kicked us out. I was feeling quite jovial about the whole exchange. The animosity felt palpable; it made my rather boring day feel much more exciting. It was only when we sat down in the waiting area and I noticed Anna crying that I became attuned to what he was suggesting.
“He was saying you might have bone cancer, Dan. That’s why he was saying all those things,” Anna said. Looking back, I really was a total moron during that conversation with him. I sat laughing and cracking jokes about back pain whilst he was trying to communicate to me that he was concerned I have bone cancer. All of a sudden things weren’t so funny. I don’t think it even occurred to me that this random stranger who knows nothing about my condition would be suggesting such a thing. That’s my excuse for not reading the room properly.
I called The Christie hotline again. Anna and I wanted to leave – we wanted nothing to do with this hospital. At least we trust The Christie to not diagnose me with bone cancer without being pretty confident that it is the case. The same man answered my hotline call and he quickly comforted me. “I’m slightly overweight and have high liver functioning anyway. Every time I do a blood test they tell me that my functioning is worrying. There are loads of reasons it can be high. It sounds like you’ve suffered from terrible bedside manner.” I felt so relieved as he was speaking the words. He reassured me that they would have seen a spread in my recent scan and that, in reality, my tumour was shrinking, not spreading. I agreed to stay and see the doctor.
Sure enough, we were called in to speak to the doctor about an hour and a half later. She didn’t even mention the liver functioning. After inspecting my stomach and doing some tests, she concluded that it was probably just a bug that I’m struggling to fight off because of the chemotherapy. We then prompted her about the high liver functioning. Her response shocked us. “Well, it is a bit high but it isn’t really high. The last blood test we have for you is from 2009 too, so it may not actually be very high for you these days. These indicators can vary a lot from person to person.” Anna and I were relieved. It’s good to learn that you probably don’t have bone cancer, only hours after being told that you might have bone cancer.
So, I’m not entirely sure what went through this doctor’s mind in all honesty. I wish I had a defence for him because I don’t like slamming people unnecessarily and I’m sure he was extremely stressed. This did feel somewhat indefensible, though. I will say this…
Whilst we were waiting in the public area, a woman started panicking in a wheelchair, holding her chest and screaming “I CAN’T BREATHE!” 2 of the nurses came running through the double doors and quickly took her through. A minute later, a cacophonous siren was going off and members of staff were grabbing equipment from the corridor and taking it through. There was a mix of responses in the waiting room. Some groups chatted excitedly, some individuals seemed to slump deeper into their slumber, and some looked disturbed. I was soundly in the disturbed category. I may have just witnessed someone dying but I’d never know.
The situation hit something home for me… Many of us aren’t close to death in our daily lives. There aren’t many professions that revolve around it. If you work in a hospital, you are dedicating a lot of your time to being around these types of situations, if not directly involved in them. Death is a constant presence in them; a doctor may start the shift with someone dying, then they have to continue on with the rest of their 8, 10, and 12 hours. It really is brutal and must be incredibly taxing emotionally. Although I have spent this post criticising an individual in the medical profession for the way that they dealt with me, I really do feel a lot of sympathy for him, and others in the field. I’m not made of strong enough material to deal with this day in and day out; I get to leave the hospital each time I go and cross that commitment out of the calendar. Mortality is constantly staring these people in the face and it must completely change the way they view the world. I was witness to 1 tiny event, and I spent a long time yesterday thinking about it, hearing the shrieks and reliving seeing the panic in her face. It’s terrifying.
So, for what it is worth, probably nothing, I really don’t feel aggrieved at what happened. Hospitals are a brutal environment, full of suffering, stress and anguish. There are plenty of positives about them too – they are a place of hope, recovery and perspective-gaining phenomenon. I don’t want to criticise someone doing a job that I know I am incapable of doing, though. All I know is that I don’t have bone cancer. Probably.