The Chemotherapy Diaries

Yestrerday morning, I was admitted to the hospital with a suspected infection. My temperature was 38.2. The ‘healthy’ range is about 36.1 – 37.2, I believe. If it is above 37.5, that is when the chemotherapy hotline become particularly worried by it. Who knew there could be another twist in the chemotherapy tale? It’s a good job I haven’t made any lofty claims recently about Completing Chemotherapy – that would make me look pretty stupid.

I’ve felt extremely tired these past few days, but that doesn’t raise an eyebrow in week one of the chemotherapy cycle. Randomly regaining consciousness on the sofa despite having no recollection of falling asleep is part of the first week’s rituals. Sure, I’ve been getting the usual attacks of stomach pain, digestion pain and general abdominal pain, especially during the night. Why would that be any more concerning than usual, though? You wouldn’t put a polar bear in a Tunisian zoo and then ponder over whether it is too warm. You know it’s too warm, you just want more people to visit your zoo. I actually did see a polar bear in a Tunisian zoo when I was 18. The poor thing was laying on the concrete in the scorching sun; it looked completely defeated. It was the moment I swore myself off zoos.

I got on with things as normal. Tuesday night’s sleep was broken but not too bad; in the morning I felt a little more exhausted despite sleeping for twelve hours. Still not too concerning. Wednesday I spent lounging around the house, slowly mustering the effort together to get out into the big bad world and walk Lucy the dog. Anna and I finally managed it at lunchtime. We were out for about an hour and the sun decided to join us. The rest of the day was a blur really – I can’t remember what else I did. Fell asleep more, read my book and lounged about, probably. Wednesday night was when the serious fatigue kicked in again. Not totally unusual, but I didn’t experience it like this often.

I was struggling to stay awake on the sofa from about 21:00. Before this I was fighting the tiredness, but after 21:00 I simply couldn’t stay awake. The abdominal pain was also worsening which is unusual for the early evening. It usually only happens in the middle of the night and in the morning. I went to bed early and had a strange night, drifting in and out of sleep and feeling particularly bad. There isn’t a better way to put it really. Just bad. By the time it was morning, I had a high temperature and my skin was boiling hot. A high temperature is the clearest (and sometimes only) sign that you have an infection. Infections are extremely dangerous whilst on chemotherapy, and can be fatal if they are not dealt with quickly. Your body is busy processing the chemotherapy drugs, meaning that the load on your immune system is heightened. So, things which may be routine for your immune system in day to day life become big problems whilst on chemotherapy.

That is why your thermometer is your best friend whilst on treatment, and at first I hung out with mine regularly. As I settled into treatment, though, I started thinking I knew it all. I stopped really checking my temperature, deciding that chemotherapy was easy and that my body was an impenetrable fortress. The road to hell is paved with good intentions. I thought it was in everyone’s interests for me to not check my temperature – I save myself an entire 10 seconds every morning, no one worries about me having an infection and I don’t have to bother the staff on the chemotherapy hotline, who have older and more vulnerable patients to attend to. When I eventually conceded that I felt a little hot and Anna told me that my chest was ‘boiling’, I grabbed the thermometer. I put it under my tongue and waited for the beep. Beep – 38. Fuck. As stated earlier, anything over 37.5 is moving into abnormal. 38 is the highest I’ve ever seen my temperature go. The reality of the situation set in; I’m going to have to call the hotline in my final cycle, aren’t I?

It is amazing how quickly self-preservation kicks in when you are in these stressful situations. As I sat on hold to the hotline, I tempered my thoughts on whether what I was doing was appropriate or not. Despite reading online that a temperature of 38 on chemotherapy unequivocally requires the attention of the oncologist, and fast, I kept checking my temperature to see if it was a false reading. I got a few 37.8’s, a 37.9, a few more 38’s. All of a sudden, I got a 37.3. Phew, it’s normal again, I said to myself. Just before I managed to hang up, a woman picked up and asked for my hospital number. Damnit, they got me. She asked about my temperature and I explained that it has been a little bit all over the show. “What is the highest temperature you have recorded?” She asked. “Well, the highest is 38 but I’ve had quite a few 37.8’s…” she cut me off mid-sentence. “You need to come in, I’m reserving you a bed now. Can someone drive you and can you get here in the next hour?” I felt like a deer in the headlights. I resented the thermometer for doing this to me; that’s the last time I’m trusting you.

I knew something was wrong, though. Even now, 7 months after a cancer diagnosis, I still try to avoid doing anything which may disrupt the idea that everything is going well. Accepting that I have a high temperature and possibly an infection means that something needs to be done about those things. That something may result in more uncomfortable truths coming out about the cancer, treatment, or who knows what else. You want to curl up in a ball and wait it out instead. It’ll be fine. Probably. Unfortunately, that type of avoidant strategy won’t do you any favours in the world of your health. Putting off appointments, ignoring symptoms and pretending that you feel Ok, all just lead to bigger problems in the end. Even if it doesn’t – getting checked out will settle that voice in your head which tells you something is wrong in those quieter moments. You may have to do a few uncomfortable things in the process, but life is full of uncomfortable moments. It happened to me for over a year when I was trying to get my abdominal pain diagnosed. I never thought it would actually be cancer, no matter how many jokes I made about it being so. Those jokes seem in bad taste now, but that is clearly one way that I dealt with the uncertainty of not knowing what was causing the pain at the time.

The operator had told me to bring an overnight bag and set off straight away. I got a few things together and pulled myself out of bed. My head was spinning and it felt like someone had lit a fire inside it. I felt like a zombie as I walked, struggling to speak coherently and feeling fascinated at how the human body copes with the world. So, when you have an infection your brain heats up does it? Perfect.

Anna dropped me outside the front of the hospital. I had to go to a department I’d never been to before – Department 22. It wasn’t the ideal time for an adventure. If anything, the zombie description was only becoming more accurate as the day dragged on. Adequately stringing together sentences was becoming a unsurmountable task. As I walked the corridors of the hospital trying to follow the signs for Department 22, I felt my eyelids refusing to blink as fast as I wanted them to, and my feet dragging more than usual. It didn’t feel like I was in control of any of it. I made it to the right place and asked at a reception desk where the ward was – she told me to use the lift and go to the top floor. I turned around and walked in the completely opposite direction to the lifts. She called out to me and walked around the desk, putting her hand on my arm and saying she’d take me there. She smiled at me. Sweet pity was looking me dead in the face.

Once I reached the ward, I was taken into a private room immediately by two nurses. Both were extremely nice, as is standard at The Christie. Everyone who works there is always so lovely. One of them checked my blood pressure and temperature. My temperature was now at 38.2. My heart rate was at 201, which was far more concerning, but the nurse didn’t tell me that yet. She smiled and said, “I’ll be back in one minute, Daniel.” I smiled and said Ok. I’m sure she had noticed the vacant tone of my voice and the rolling of my eyes; I was actually feeling quite ill now. She came back with another device and put it on my finger – “Ok, good. The last device said your heart rate was 201 which would be very concerning. This one says it is 131. It’s still high but it’s much more manageable. I’m sure we’re making you extra nervous, too.” She wasn’t wrong. There was a lot of equipment in the room and I was suspicious of all of it. What are they going to do to me?

They put a needle into my port and extracted a few tubes of blood. The nurse then informed me that she also needed to take blood from my arm, as a means of trying to locate where the infection is. I knew this was going to end badly, but I also knew that there was no way of getting out of it. I didn’t say anything. She put the needle in my arm and I watched her pulling blood into a syringe. Now, I say I knew this was going to go badly because I absolutely hate doing blood tests at the best of times. My body does actually respond quite strangely when a larger amount of blood is taken, though, which is why I cannot donate blood. Also, they don’t usually extract blood from your vein using a syringe, and that in itself was making me feel queasy. Usually they use small plastic containers that they screw onto the end of the needle.

I’d seen that she had already taken quite a bit of blood from the port, and I was now watching her pulling it out of my arm. Couple that with the fact that my head was spinning and I was already feeling sick, and you get a recipe for disaster. At some point whilst she was taking the blood, she realised my arm had gone floppy. “Don’t pass out on me, Dan,” she said, “we’re nearly done.” The room was spinning and I was sweating profusely. Even my eyes were probably sweating. She finished, detached the syringe from the needle, pulled the needle out then lay me down on the bed. I couldn’t hear properly – like that part in a war film where the protagonist looks around in slow motion and sees all the destruction around them with an eerie buzz. My hearing was going and I had to shut my eyes, breathing heavy and focusing on staying awake. Then I came out with a rather unusual assessment of the situation – “I feel like someone has put a tin of beans over each ear.” I’m not sure where it came from but the nurse burst out laughing and said “that’s a new one”. I only realised how embarrassing it was once I was feeling better about 10 minutes later. “Where did that comment about tins of beans come from?” I said as she came back in to attach me to a drip. It needed to be addressed now that I was more conscious. What would a psychologist say about that? When my defences were down and my brain was at it’s most vulnerable, it chose to bring up cans of baked beans. Interesting. I even specified that the tins were used for beans; surely that detail would be irrelevant.

Once I was feeling better, the nurse said to me “You probably think we’re vampires taking all of this blood from you!” Has she been reading the blog? Or can she read minds? Is that something that vampires can do? Now I have to watch what I say AND think around these bloodsuckers. What a disaster.

The next person to see me was the on shift GP. Now, I know I wasn’t completely with it, but I am 99% certain that this woman was an angel. She had the softest Irish accent I’ve ever heard and always looked deeply into your eyes as she spoke to you. Everything she said, she meant, and you felt it. I tried to focus on her questions, but I couldn’t help getting lost in her aura. Some people are so predisposed to just be be…nice. It can knock you back sometimes. She can’t always be like this, surely. Then I remembered that she become a doctor, arguably one of the most caring careers a person can pursue. It must be exhausting caring about every single person you come into contact with if you are a doctor, though. How on earth does she do it? Maybe I’m just drinking the kool aid and moments after I left the ward, she turned to the others and said “Hah – did you see how limp that wimp went when we took his blood? What a loser!” She definitely didn’t, but it makes me feel better to lie to myself that her angelical nature was a facade and that she was actually a horrible person. If I didn’t believe that, she’d make me want to become a better person. That takes time and effort. No thank you.

Dr. Angel listened to my chest, tapped around my back with her hands, inspected my body and asked me to breath deeply for her. She then sat next to me and chatted to me about all of the issues I’ve had throughout treatment, to try and establish any trends which could help identify the problem. I told her about the mouth ulcers. She shone a torch in my mouth to take a look. “Aw it looks so sore – you have signs of oral thrush. Have you been treated for it before?” I had, about 3 cycles prior. She said that she’d give me some tablets to help get rid of it. We then went down the dignified topic of diarrhoea. Talking about how many times you see blood in your poo in a typical cycle should be uncomfortable, especially when you’re talking to a real-life angel. Fortunately, it’s a topic which seems to come up every time you see an oncologist about anything. “My feet are constantly cold and numb,” you say to your oncologist one day. “That sounds awful, Daniel. Please rate how loose your stools are out of 10,” they reply, without a second of hesitation.

The doctor told me that I’m probably fighting some form of infection in the bowels, alongside some other issues like the oral thrush. She told me that they’d prescribe me antibiotics and send me on my way. I breathed a sigh of relief. The anti-biotics that the nurses had pushed directly into my veins had kicked in and I was feeling more like myself.

Dr. Angel told me that I needed to do an X-Ray of my chest just to make sure they can’t see anything worrying. The nurse walked in a few minutes later with a wheelchair. “C’mon – you’re going to help me get to my steps goal today.” This was only the second time I’d been wheeled through a hospital on a wheelchair. Knowing I was fully capable of walking, I kept offering to just walk, but she told me that she isn’t allowed to let me. There is something severley immasculating about being wheeled around when you don’t need to, as if you are conceding to some form of weakness that you insist does not exist. I decided to just sit back and enjoy the ride. It was like a fairground round and I was going into the staff only parts of the hospital. Exciting.

The scan only took a few minutes. I was then taken back up to the room. Dr. Angel came in a few minutes later and confirmed that the scan was clear. She actually described the X-Ray as ‘beautiful’. She’s definitely an angel – nothing else has the audacity to use that word in that context. Finally, I had the all clear to go home. I thought that was it for my temperature shannanigans for one day. Unfortunately, I was wrong.

After I got home, I showered, cleaned my teeth and got into bed. The rest of the afternoon was spent drifting in and out of sleep, sweating a lot and basking in the sunshine which was obnoxiously beeming into the bedroom through the window. My body was cold and hot at the same time. Perhaps it wasn’t the best idea to lay in direct sunlight for hours, especialy with the ginger genes that exist in my family (two of my siblings are ‘Strawberry Blonde’). The sun makes light work of my pasty skin. Anna and I had booked to go out to a local restaurant that evening with my parents. They were adamont that we should cancel, but I told them we should go. Walking a few hundred meters before sitting in a restaurant seemed like an easier task in my head; I couldn’t just stay in all night. I got some soup and ate it slowly. About two seonds into the main course arriving, I knew I’d made a mistake. I made a pitiful attempt at eating enough of it that it didn’t seem rude to the kitchen, then sat there trying not to fall asleep. Anna and I ended up leaving early because I was feeling too bad. When I got home, I lay in bed. Somehow, I was feeling even worse than earlier. After about 30 minutes of this, I reluctantly grabbed the thermometer and put it under my tongue. Please don’t be high. Beep. 39.1. Eugh.

I took my temperature over and over again, each time returning results around 39. It was even higher than earlier – surely that isn’t good. My mum, Anna and I then desperately started looking for the other thermometer. It’s broken, surely… Of course, it wasn’t broken. My eyes were actually burning and Anna said that heat was radiating off my body. I called the hotline. Once they picked up, I protested that it was probably nothing but that I wanted to double-check. As soon as I gave my temperature, the operator seemed concerned. “That’s quite a lot higher than earlier. I think you need to come in again.” It was around 21:30 now. Once I hung up, I lay idle on the bed for a while, wishing it would all just stop. It didn’t. We got in the car and set off, arriving at around 22:30.

The hospital was empty, as expected. Anna walked with me to Department 22. We went up in the lift together, before she was asked to leave the hospital. A familiar procedure started – blood pressure, heart rate, insert a line into my port. The nurse put her finger on my wrist to check my pulse. “You’re boiling sweety,” she said, before sticking the thermometer in my ear. “Wow, you’re temperature is 39.2. Let me get the oncologist quickly.” A youngish man, perhaps mid 30’s, walked into the shared ward and pulled the curtains around us. There were two other men on the ward. Both of them were sleeping. The room was punctuated by the occassional groan, and the sounds of restless sleep. Machines beeped, nurses giggled down the coridor and I sat wollowing in self-pity.

No surprises here, but the oncologist was a very nice guy. He wasn’t angel material, but he wasn’t far off. I think you just have to be an amazing person to dedicate yourself to the oncology profession. It is so brutal; the average person doesn’t want to be in the coal face of pain and misery every day. These people recognise the other side of that equation – how incredibly necessary their role is in fighting back against cancer, and how the people suffering from it are just crying out for a reassuring smile. Even when that smile is behind a mask. They make a huge difference, whether the story ends in tragedy or not.

He gave me two options. Option one: put me on antibiotics and monitor me overnight at the hospital. It was their preferred option because of my temperature, but he appreciated that it may not be mine. Option two: they take blood samples from me and confirm that they are ‘healthy’, meaning that this is just my body fighting the infection, and that there aren’t any indicators that my health is deteriorating. After explaining both, he smiled and said “you want option two, don’t you?” “Fuck yes,” I responded. It was probably a bit inapprorpiate but I think he appreciated the timing. He reitorated that I need to ring up if anything worsens and that they are only letting me go because I’d already been given a thorough inspection earlier, with anti-biotics issued. He said that he suspected my bloods would be fine, but also reitorated that they need to be clear or I’d have to stay.

The nurse came back in and took my bloods. She asked me if I wanted anything to drink. I treated myself to an apple juice and settled in, watching Youtube on my phone in between falling asleep. About an hour and a quarter later and the oncologist was back. “You’re good to go – the bloods are fine. You’re still fighting an infection so you are likely to have a high temperature for a few days, but we aren’t worried about it based on your vitals and the blood results.” I breathed a sigh of relief. Anna and my mum had been waiting in the car the entire time; Anna had spent as much time as I had at the hospital that day, without being allowed to be part of any of the action. It was probably worse for her, really.

I made my way out of the deserted hospital, exchanging pleasantries with a random cleaner in one of the foyers. Part of me expected to see a cohort of blood nurses sitting in one of the offices as I walked past, downing pints of blood and cackling. They must have a private room in the back as I never saw them. It was so good to know that I’d be sleeping in my own bed. We got back at about 00:30 and all retreated to bed.

Any hope of cycle 12 being easy had been dashed. Luckily, I seem to be following a similar blueprint to a guy who has beat this bastard cancer. The incredible Nigel had to spend an evening in the hospital because of an infection when he was on the same chemotherapy as me. He is now 3 years clear of pancreatic cancer, something very few people can say, especially those who were diagnosed in their 70’s. Having one infection that gets you admitted to the hospital seems to be part of the winning formula for beating pancreatic cancer, so I’m choosing to take the positive from the situation. I actually got admitted twice, so I’m twice as likely to beat it now. Logic. Nigel’s daughter told me that he claimed the hospital’s thermometer was broken when they checked his temperature…it’s no wonder he beat this cancer with that sort of self-idealisation. How could my temperature be that high? I’m Nigel, don’t you know. I don’t get ill.

I’m hoping that the rest of the cycle is far less eventful. Hoping does little to change these situations, though. Better to just roll with the punches and see what happens, dealing with it when (and if) it does. Besides, the hospital’s thermometer was broken. I didn’t even have a temperature.