The Chemotherapy Diaries

Another treatment day rolls around… I’m not used to having to do things on Monday mornings anymore, so it’s been an anxiety-filled morning. My treatment day is usually Saturday but, because of the last-minute change of treatment after I failed the platelets test last week, they couldn’t fit me in on the weekend. That meant it was a Monday morning job for me. I make the platelets test sound like a qualifying round for a sport. Your platelet count is a key thing the doctors check in your blood tests before treatment. If they are below 75, it is a sign that your body is still working off the chemotherapy. Mine was at 72, so I was just below qualification the permissible level to undergo treatment.

I assumed traffic would be terrible so we set off at 7:45 for a 9:00 appointment. We usually leave 45 minutes before the appointment time, for reference. It appears we benefitted from the working from home revolution as there was very little traffic. The majority of people seem to have swindled Monday as a concrete working from home day. I can’t blame them. We ended up getting to the hospital 30 minutes early. Very punctual, but very annoying. 30 minutes less in bed. Woe is me.

Not only was it Monday morning, but I was feeling extra tired. Lucy decided that she would get up at 4am last night and start whining by the bedroom door. The notion that she may have needed the toilet did occur to me, but I was desperate to sleep more and not entertain it. She had the last laugh, as I heard her little feet tapping around the room a few minutes later and could smell something rather unpleasant. “Why didn’t I just take her outside,” I said to myself as I searched the room for the source of the smell. Being a small dog, Lucy’s ‘presents’ can be hard to find. Eventually, I found them behind the armchair in the corner of the bedroom. Thank you very much, Lucy. Four whole presents and it isn’t even my birthday…

This, in turn, meant I had to wake my mum up to help me clean up and wash Lucy. Being on chemotherapy, the internet advises that you regularly clean dogs if you are handling them and stay away from cleaning up their mess. The reason for this is that you are very susceptible to disease and infection when on chemotherapy. A Dog’s excrement and urine are filled to the brim with dangerous stuff, apparently (not a vet, or a medical professional; this is very much in layman terms). You really do have to love them to want them, folks. They’re not just for Christmas (or chemo). Anna is away all week in London so I’m heavily relying on my mommy again for these tasks – she’s a saint.

I struggled to get back to sleep after the incident. It was the typical scenario – laying awake in bed, knowing that you really need to sleep, and getting absolutely none as a result. My mum had a similar problem, she informed me in the morning. Lucy had the same problem too, but she can just sleep all the time and do nothing because she’s a dog. She poos constantly in the house, is a threat to my entire being and robs me of my sleep, but I still love her. For now.

Having had an extra week off for two cycles in a row, I actually was a bit nervous about treatment today. Not nervous meaning I was actually worried about the treatment, nervous because I felt like I was forgetting how to do the treatment. It’s stupid really. All I do is show up, sit down, get stabbed in the chest, then try and not feel too awful until I’m allowed to leave. There’s nothing to it really. I feel nervous about the needle going into my chest again, how shit I’ll feel during bag 2, and that the nurses won’t give me compliments about my cake. Well, the needle in my chest was fine, bag 2 was shit but it’s always shit and the nurses COULDN’T STOP TELLING ME THAT MY CAKE WAS AMAZING. Boom. Two out of Three ain’t bad. Take that nerves, you irrational, irritating irritators. I hate you bag 2, you are good for absolutely nothing (other than potentially saving my life and killing cancer).

The way that bag 2 makes me feel has actually evolved. I seem to be slightly better at handling it based on the amount of nausea I get now (or don’t get) during its delivery. That negative aspect of it has definitely declined in the past 2 sessions. It used to be crippling and I would have to sit with my eyes closed and head between my legs. I’d have a steady flow of nurses approaching me and asking me if I’m Ok, telling me to have the injection. “I’m fine thanks, I don’t need the injection,” I’d say, eyes still closed, head still framed by my knees. “Daniel…” they would start, indicating that I was in trouble, “just have the injection. It’ll make you feel better. You only have to stay an extra hour in the hospital. We aren’t that bad are we?”. This is what happens when an immovable object meets an unstoppable force. “I’m good, it’ll go in an hour or so,” I’d say, trying to sound as confident as possible, knowing I was mostly lying through my teeth and not moving my head from its brace position.

Nowadays, though, bag 2 just makes me sweat a lot, gives me a runny nose and leaves an awful metallic taste in my mouth during treatment. The nurse told me that the metallic taste is actually from bag 1, but it only ever comes on during bag 2 so I refuse to believe it. Bag 2 is responsible for all of the evil in the world, bag 1 is just an innocent bystander.

During bag 2, I overheard another patient asking if they could have some anti-sickness tablets. She had told the nurses that she didn’t need any more at the start of her treatment because she had a large stash at home; anyone who has been diagnosed with cancer will know that you build up your own little pharmacy over the course of treatment, so you start to decline the drugs after a while. The trouble was, her treatment had made her feel sick straight away, something which didn’t usually happen, she said. I learned all of this by being nosy and eavesdropping on their conversation.

The nurse told her that she would need to get the pharmacy to prescribe them and that there was a big wait – approximately 3 hours. Hearing this, and knowing that I had been given a new box of anti-sickness just 20 minutes before, I interjected. “I’ve got loads of anti-sickness if you need some,” before turning to the nurse, “I assume everyone gets prescribed the same pills for it, right?” The nurse said yes, then quickly walked away whilst saying “I’m not allowed to witness this happening!” She turned and winked at me, indicating that she wasn’t too mad about the situation. I gave the woman a strip of pills and she wished me well with my treatment. Hopefully, I purchased myself some good karma, although my intentions were completely selfless, of course.

Today contained another sobering moment too. You get used to these when you regularly spend time in a hospital, especially one specialising in cancer. I’ve mentioned before seeing a young boy with leukemia sitting in the M&S cafe with his dad, and another one where I witnessed a woman ringing a bell indicating she was cancer-free. These two examples demonstrate the different ends of the scale of experience – from negative to positive. Today, it was towards the negative end of the scale.

A man who was sitting next to me was just starting treatment for the first time. From what I could gather, his diagnosis was bleak and the treatment was palliative. He didn’t seem very old at all, I’d guess about late 30s, early 40s. I heard him say various things, about how his mum is struggling to deal with his diagnosis and how he doesn’t have anyone to look after him at home. He sat with his eyes closed as the drugs pumped around his body. I wish I could write about how I said some inspiring words to him, or simply offered him my best wishes. None of it felt appropriate. Everything was too personal and I felt bad for even overhearing the things I did.

It served as yet another reminder of all the things I have to be grateful for. My treatment is still aiming to cure, it isn’t looking to make my time ‘more comfortable’. I also have an amazing set of family and friends around me, as well as my fiancee. There’s so much to be thankful for in my situation; I try my best to always remind myself of that. These situations make you realise it more than ever.

The rest of the treatment actually went Ok. All of the nurses were lovely as ever and made the whole experience infinitely better than it should be. After about 4.5 hours of being hooked up to the pump, I was packing my things up and leaving with the baby bottle (of chemotherapy) attached to my port. My mum wasn’t going to arrive for about 20 minutes so I found a table in the waiting area and watched patiently out of the window at the drop off point.

As I waited for my mum to pick me up, I saw the man who had been next to me in the chemotherapy ward walk outside and light up a cigarette. He was pacing, staring at the ground. I just sat watching him and wondering what was going through his head. I wondered how he could smoke after chemotherapy – he had seemed quite distressed on the ward, I guess that emotion making him want a cigarette was more powerful than the sickness of the drugs. Maybe the cigarette even relieved some of that tension for him. It was hard to blame him, especially if he’s addicted. His body was probably crying out for something normal, maybe even something destructive.

The novel I’m currently reading, Don’t Point That Thing At Me, reminded me of the mock-Latin phrase ‘Illegitimi non carborundum’, often translated as ‘Don’t let the bastards grind you down’, despite not actually meaning this in Latin. The source of the Latin-English pun has been attributed to the British army in World War 2, and I’ve always loved it for its very British-style humour. It manages to perfectly symbolise both hope and cynicism at the same time somehow. I like to think of it when things feel hard. As I watched this man pacing and smoking his cigarette, I said it to myself in my mind. I wished there was a way I could communicate it to him which would adequately get across the good sentiment, but there wasn’t. He’s been in my thoughts for the rest of the day.

Unfortunately, my state descended a bit as the day wore on. Although the treatment went well on the chemotherapy ward, it started to deteriorate in the waiting room. I got diarrhea and started feeling really nauseous. Sitting in a tiny public bathroom in the hospital, I was starting to feel horrible. The car ride home was a struggle. Every sharp turn, speedbump and roundabout made me want to throw up. My puppy Lucy was on my lap and her body felt hot, which made me feel extremely uncomfortable. I’ve spoken on here about how I’ve always had a weird phobia of feeling too warm. Sitting and sweating is my idea of hell, and it is emphasised by other things being hot. Sometimes I even hate it when people touch me if they feel too warm because it makes me feel weird. There’s a strange thing I have where in certain moods I want my food to cool down before I eat it too, not because it’ll burn my mouth but because it makes me feel uncomfortable. I don’t know what it is, and I attribute some of my obsession with exercise to it. Keeping myself very fit means my resting HR is lower and I sweat less; that’s how I feel anyway, I don’t know how valid it is in reality. Lucy’s hot body laying on my lap was making me feel worse, but I persevered. She’s too cute to disturb.

I got home at about 14:30 and got straight in bed, which is where I remain now. I’ve been in and out of sleep all day. Things still feel positive. I’ve had much worse first days in a treatment cycle, but I’m back to walking the hard miles. Having that extra week in the last two cycles has been a blessing and a curse, really. It’s great to have that third week off, feeling better than ever and enjoying life more than I’ve been able to in a long time. The mentality shift when you are back at treatment is tough, though. It feels like the time off makes you less prepared to deal with the realities of the current situation. I fight on, though. Cycle 9 has begun and I only have 3 more to do before the next scan. After that, I finally find out if I can have the surgery. If I can, it will probably be followed by a day of pure euphoria, followed by the realisation that I am going to be having a major operation and all the dread and anxiety that brings. If I can’t, it’ll be adjusting to the next thing that the oncology team throw at me and trying to stay positive about things.

Illegitimi non carborundum