8.30pm. I am reading ‘Anticancer’ by David Servan-Schreiber – aloud, word by word, sentence by sentence. It’s not exactly painful, but my mouth and what’s left of my tongue don’t really do what my brain requests them to. My target for tonight is five pages read aloud. Somewhere mid-way, I miss the idea, don’t quite follow what the author says, yet I’m determined to finish this five-pages long marathon. It’s been a drawn-out, tiresome day – a day when I achieved nothing, yet did what I was supposed to do – given the circumstances…
The day starts around 8am, when I wake up from my semi-dreaming state to anticipate pain in my operated left shoulder. When you know what to expect it’s not as bad and you can manage. I turn around, adjust to the pain, look across the room to the kitchen table (I live in a studio-flat and am so happy now, since everything is within reach), where I have my medicine piled. I don’t like it being so out of order with plastic, foil, papers all over the table, yet I don’t feel like spending time on laying these all nicely. This disorder and my inability to deal with it irritate me.
I get up, walk four yards to the table, take my morphine and co-codamol. No pain when I am upright – thank God for that. Time to have breakfast. No, I’m not hungry, but it’s breakfast time and I must eat. I’ve already lost almost two stone, which I don’t mind, but my doctors and nurses won’t like it and they are so lovely that I can’t really disappoint them. Water for green matcha tea is first cooled down to 75-80C, powder poured into the cup, mixed, then another 10min to wait until it’s tepid – I can’t have hot drinks any more. I feel like I follow traditions of long tea ceremonies – no rushing allowed.
No sandwiches as it will take ages to chew. Besides, there can be crusts and these won’t go down through my dry throat. So, porridge it is: plenty of hot water, oats, raisins, grounded nuts and seeds, maple syrup or honey. I gave up sugar after I had learnt about my diagnosis. And here we are – my breakfast of soupy porridge and green tea is ready. Half an hour to go through it should be enough. Then ten minutes to put my jeans and pullover on. I’m okay with time – my radiotherapy session starts at 10.40am.
It normally only takes 13 minutes from my home to the hospital. These days, it takes half an hour or even longer though. Frustrating, but I’m lucky – I don’t need special transport – hence less communication and logistics to deal with; I can walk, I can enjoy still warm air, the weather is nice – I shouldn’t complain.
I look at my watch, hmm, seems like I’m going to be late. This week I’ve been late every single day, I’m going to be told off by radiographers and so I feel guilty anticipating this. I try to move faster, hope it works. Through the turning doors into the lobby, straight, right, down the stairs and here’s this smell. Even if I were a native English speaker, I doubt I could describe it. So, I’ll just say it makes me sick and I feel sorry for nurses and radiographers, who have to endure it every single day for hours.
I’m late but they’re running behind schedule today, so I’m safe, can take a cup of water and sip it. This is a promise I made to myself, that I should drink at least one cup of water whilst in hospital. I need to be hydrated and get rid of all the chemicals I’m inundating my body with during treatment. Forty minutes waiting time, annoyingly I cannot concentrate on my book, so I gaze at the TV on the wall, some rubbish programme – hmm, I notice that I’m grumpier these days.
A nurse in a dark green suit invites me in. A small changing room to take my pullover off and wrap myself in a hospital robe. A corridor with radiotherapy masks on the wall – all moulded for different people, all looking intimidatingly similar. A large empty room with a wooden bed (or, rather, table ) as in films about Medieval tortures and a giant shiny white machine – out of the future – above it. A desk along one wall. A chair and a hanger in the corner. I put down my pullover, my book, and move towards the bed, just three or four steps away. I lay down, it’s cold, I fix my hand grips in the right holes on the bed – a nurse smiles that I can do everything myself. She fixes my shoulders with a special set of holders. Another nurse brings my mouth gag and a plastic mesh mask, which was moulded for me personally four weeks ago. I’m reminded that these will fix my head and mouth firmly, so that I don’t move. If it’s too uncomfortable during the procedure I should wave my hand, then the session will stop and the help will come…only that everything will have to start again after that, so the torture will just be much longer. I’d better not call for help for the next 25 minutes.
Today, I’m lucky. Occasionally, I drift away for at least part of the session and this helps while away these unbelievably long minutes when the only sounds you can hear are recharge of the battery, zoom, then shot, recharge, zoom, shot, recharge, zoom, shot. I tried to count them but couldn’t really. My mind goes back to the past, then to the future – scary and uncertain, but I make it think about something pleasant – sex, tasty food, walks around Kensington, a comfortable armchair in some smart tea-room. Not a particularly sophisticated list of thoughts, but it will do.
The mask is off, I get up, try to relax my mouth muscles after thegag is out, walk to the chair, try to make a joke and smile, my pullover is on, my book in my hand. Goodbyes. “See you tomorrow”. One more session done. One less to go to. Mission complete. What was supposed to be done today has been done. Shall I call it a day really, even though it’s not midday yet?
I walk through the corridor, up the stairs, holding the rail (a 31 year old male – am I?!), get to the lobby and have to sit down. The less time I spend here, the sooner I’ll be back in my bed at home, yet I need this time on the chair here and now. I think, to an observer, I look perfectly normal and healthy and thus probably weird in my weakness.
My afternoon is filled with taking pills and posting something positive on Facebook, sleeping, a bit of reading and research about healthy living, sleeping, making some super-vitamin-charged tasteless green juices and having an hour-long lunch, sleeping, hoovering and shaving, sleeping…Well, sleeping for 13 or more hours a day is clearly one of the best positive sides to cancer, among many others. I just have to finish this treatment and survive to reap the benefits of my illness.
First published on November 29th, 2017, on Macmillan Cancer Support website as part of their Mouth Cancer Awareness campaign.