But oh, those chemo nights

Note: I genuinely didn’t plan to have this as a follow up blog to the last one just so I could complete the Grease reference in the title. It’s worked out perfectly though so I’m going to take full advantage.

When someone posts a blog in the middle of the night you know its unlikely to be particularly positive. I can’t sleep but I’m too tired to do anything useful so I’m kind of hoping this is cathartic.

The second round of chemo (or eighth, depending on how you look at it) went as well as any so far. The days I spent in the hospital were not any longer than they needed to be, the nurses were excellent, I’m feeling very few side effects and had a weird amount of energy for the weekend. I spent Saturday in Hyde Park sat outside the festival listening to The National as the sun set which was idyllic, and then Sunday watching the best game of cricket ever and my man Novak somehow scraping a win in the tennis.

This week, though, has been very different. Not so much in terms of physical side effects: fatigue has worsened as expected but I’m still seemingly being let off lightly with nausea, and nothing else otherwise that I can put a finger on. I’m probably feeling better after the second round this time than I was last time. But mentally, I’ve been very up and down, with a heavy leaning towards the latter.

I am always being told that I am handling this brilliantly, with a very positive attitude. I’m not sure how much of that is genuine admiration and how much is a mixture of encouragement, pity or people not knowing what else to say. For what it’s worth, personally I think that I am handling it pretty damn well. I mostly see it as something that has happened for no rhyme or reason and to take it in my stride like I would anything else. But sometimes I don’t handle it so well. I like that people find my approach inspiring so I hope that the occasional rant takes nothing away from that. I like to think I’m generally quite grateful of things, and I do really appreciate that people have it much worse than me, but I can’t be bothered to put a statement before everything I write in this post about how things could be worse. Things are shit and I’m fed up.

I guess everyone expects life to go a certain way, have its ups and downs, tragedies and triumphs before coming to an end after having a reasonable go at it. Just 14 months ago, I had just been best man at my mates wedding and then come back from a great trip to see New York for the first time with another of my best mates. I was loving my life in London, a perfect social life, doing well at work, and had pretty much nothing to complain about. Sure, I was equally ill the day before my diagnosis as I was the day after, but it wasn’t really showing much in my lifestyle. I guess that’s why I didn’t find this fucking thing sooner.

Whilst I feel like I’m inherently the same person, the last year has stripped me of my identity and normality. Whilst this has been by no means the worst week I’ve had physically, and definitely not the worst in terms of pills and injections, this is an example of what a day looks like for me at the moment -

I wake up at 6am, take a Levothyroxine pill for my useless thyroid and another for anti-sickness, and go back to sleep. I wake up again at 8am. If I have the energy to go to the fridge to get a calorie shake so I can take my first dose of Hydrocortisone, but normally I don’t make it so fall in and out of sleep until about 12-1pm where I take 2 pills of Hydrocortisone and 1 of Fludrocortisone. I drag myself out of bed properly by 2pm and move all the way to the sofa where I can barely stand the pleasant heat everyone is enjoying outside, so put the fan on full blast whilst I watch rubbish on TV and try and eat enough food to catch up for the day. At this point it’s a toss up between going to Sainsbury’s to buy some different food to the previous day or have a shower. Whichever I choose, I then get back vegetating for a few more hours. Sometimes with company although I can’t say I really repay them with anything close to interesting conversation. I take my second dose of 2 pills of Hydrocortisone to give me that energy boost to get me until the end of the day. Dinner is usually kindly made for me, otherwise I’d resort to being a student and surviving on toast, cereal or (my personal favourite these days) dipping chicken legs into a pot of humous. I might decide to have a little walk when the sun has gone in and the steroids have hit, take in the fact that the day has actually been pretty good (!) and stretch my legs a bit. Before I know it it’s midnight and time to sleep, where I take my second dose of Fludrocortisone, a pill each of Sertraline, Temazepam and Imodium, and 6 of the pound-sized Mitotane pills. I then rub a large amount of testosterone gel onto my legs which leaves me nice and itchy as I turn on the air conditioning to 17, whatever the weather. I’ve became a lot more tolerant of the Temazepam so there is about a 50% chance of it knocking me out, but I’ll wake up a few times in the night regardless.

What kind of fucking life is that?

During chemo, it’s rare for me to drink more than a couple or to have anything close to what resembles a night out as I just don’t feel up to it and it can make me feel worse. I barely see any live music, whereas before I’d probably go to a gig a month. I don’t do any kind of activity that would release endorphins. I can’t travel as freely as I want to and often have to take special measures i.e. injections in the leg, to boost my immune system so I don’t get ill just by using the tube. I don’t go out in the sun much because it drains me and I’m more comfortable indoors. I don’t have a sex life. Trips to the pub for a pint have been replaced with trips to the hospital for a blood test. My relationships have been impacted. I pretty much see myself as the ‘sick friend’. I work during the second half of the cycle when I’m feeling a bit better but it’s not like doing my old role and I often feel like dead wood even when I’m being helpful. I don’t feel any sense of purpose from my job other than trying to be useful and using it as a distraction. I have to think of a dozen or so extra things before I do anything more than minor. Any dreams I had for the future are basically postponed indefinitely.

I’ve recovered from the low of February and looking like had spent some time in a concentration camp. But I’m still without hair and I’m not longer in good shape, without even mentioning the scars covering me. I’ve gone from feeling like an attractive enough guy in my 20’s to now having no confidence in that department whatsoever. I really miss going to the gym and being able to do what I could before. Those that know me know I was really in to fitness before I got ill, and apart from the occasional exception I lived a pretty clean life. People ask me if I am pissed off that I became ill when I was active every day, always ate well etc and there are people who smoke, eat shit and don’t give any thought to their health. Normally, no, I’m not pissed off, as life isn’t fair and you just have to get on with it. But sometimes I do think ‘what the fuck have I done to deserve this?' How life can change.

This isn’t the first time I’ve written about being pissed off or frustrated or upset, but this is probably the time I’ve felt it for no specific reason. I just miss my old life. At least this post was cathartic.

The song to sum up my mood is Quiet Light by The National. Whilst I could read and associate meaning to it in a lot of ways, mainly I just want to plug it because it’s beautifully depressing. Summer banger.