The call

The call for my chemotherapy came through at 11.45 on Wednesday. I was in the middle of a uni tutorial, doing a group plan for a class discussion. The call was expected, had been expected since Monday last week. The tutor knew I would need to run out of the room if it came. What was not expected was the specifics of the news. My neurologist was calling to tell me the approval for my Rituximab chemotherapy treatment had come through and so it had been booked. Lucky for me, there had been a cancellation and so it was scheduled for 11 am tomorrow morning (Thursday 20^th April 2017).

Was I able to attend the chemotherapy appointment?

In my head, I quickly assessed my diary: a day full of lessons and lectures, my mum had been hoping to go home to Lake Grace, I have assignments I need to complete and I needed to do training at my work. I said yes. Everything else could be dealt with later. After that call, I rang mum to let her know. She was thrilled. She would try to sort out somethings and then everything should be fine. Have I mentioned yet that we don’t completely have electricity in our house? We cannot cook any food. An electrician was supposed to come and fix this mess but they forgot and bungled somethings. She would need to come in later, but everything else was fine. It seems the bad luck that had been hanging over my head was infectious.

Preparing for chemotherapy

It is hard to describe how it feels to know you are having this treatment. The knowledge it is most likely going to work the best for the longest is a huge relief. But you know it only lasts so long, so your heart is low and sad, wondering how long this fix will last? There is worry over who you have told, who needs to be told, and how some will feel when they find out. Twenty-four hours is not a lot of time to get organised or share the word. I had to make a quick decision of what I would do, and what could take the most time without requiring a lot of stuff to take into hospital. I packed into my bag a uni textbook, two patchwork magazines, a crossword book, my notebook and my laptop. I would buy one coffee, one sweet, rice paper rolls and take an apple. I needed clothes that were comfortable and suitable for hot or cold climates (hot outside, cold inside). A charger for my phone and one for my laptop. A list of jobs to do and order of priority.

Off to chemotherapy

I hadn’t been able to fall asleep the night before. All the things falling apart around me were just too much, on top of this. At two in the morning I took a sleeping pill. Mum woke me at 9:30 am, not so happy, but trying to hide it. The electrician, due at 9 am, had ‘gotten confused’ and not shown up. She had been ready since 7:30. “Maybe he will be there this afternoon”. Right. I was already agitated, on edge, anxious, excited. I guess I was pleased to finally be on my way but worried about the mountain of things to do and how behind I was. I was peeved at the electrical stuff and that people were dicking my mum around. Mostly I dreaded sitting in that chair. I wanted to wear a giant sign on me saying I was on my way to chemo. How could they the people round me now know how important this day was? Girl’s getting married had sashes, so why not me? We waited for the bus, which took us to the train, which took us to Perth Underground. Up those extraordinary escalators and into the sunlight at 140 Laneway. A cheeky coffee at Max & Sons before our traditional amble up Murray Street to Royal Perth Hospital. We always walk to the hospital for all the appointments and treatments. It is such a lovely walk past the old buildings and street art of the city. We waited half an hour at the Day Medical Unit Reception while my Rituximab was made. It costs so much and is so sensitive that it must be made on arrival, and can only be administered if I am confirmed to be in good general health. All said and done, I was in a chair in ‘The Depot’, with the drip pumping through by 12:30.

The chemotherapy ward

This ward is used for an array of infusions, but today was chemo day. I held on to my upbeat façade until mum left to await the electrician…again. Then it was just me in the long, narrow dormitory-style ward. On the wall side, backs to the windows, twelve armchairs are situated. We ten patients face walls and cupboards covered with medical signs for the nurses, if not a nurse desk or build-up of medical equipment. Partitions of glass with green leaf patterns protrude from the floor and wall every second armchair, and a meter-and-a-half separates the chairs. There isn’t really any room for visitors, one big wall-mounted flat screen is turned off in the ‘isolation cubicle’, and a radio near the nurses station plays a commercial station softly. Being opposite I think I am the only one that can hear Justin Timberlake sing about dancing. When you need to go to the toilet, which you will with the fluids injected into you and the thirst you cannot sate, you will go to the back of the room, IV roller and drip still attached. You will be near the beds. These are the people that are in hospital, not an outpatient, or day patient like me. These are most likely to be the people who ‘look like they need chemo’. They will struggle, and suffer, and be sick. They have room for visitors, and privacy, and respectful tones are used around them. When you see them you remember this isn’t the place to smile, be happy, joke around. This is the place you sit in silence and reflect for hours on your life and chores and what Brad and Angelina, or Kate and Will, or whomever dons the cover of your magazine, are doing. This place could sober Mick Jagger up.

In the chemotherapy ward

The nurses are wonderful. Every fifteen or thirty minutes they chart your temperature, blood pressure, heart rate and saturation. They offer mousse, juice, sandwiches, tea, coffee, smiles, familiarity, comments, pillows and rugs. As they pass they always acknowledge you. In turn you will always respond because you know what they are doing and you appreciate it. Both of you are trying to ignore the fact of where you are and why you are there. They don’t know all the details and they won’t ask.  Privacy here is big. Respect and trust are donned at the door, and worn near all people, like those latex-free gloves or sanitary hand cleaner. The reception is not great and for the life of me I have never understood why the hospital doesn’t offer free wi-fi, or wi-fi for private patients. I sit between a young girl of about my age and a middle-aged man. His wife talks quietly with my mum. Everyone talks quietly here. The young girl leaves early afternoon. I wish her luck. Her place is taken after half an hour by a man, also looking to be of my age. His wife too joins him soon. I recognise her, but we don’t catch up much. This is not the place you do that. Sobering.

End of chemo

The drip stops as 5:45pm. It has taken 6 hours to go through, with the saline flush. I feel…no different than before. Except tired and pissed off. I cannot say why I feel this way except that I do. My desire to leave had kicked in about 2pm. My attentiveness to any of the books or activities I had taken had waned and dried off completely from lunchtime and the level of my restlessness was high. The battery in my phone was almost flat, so I had to turn my audiobook off at 4pm to make it last. If I heard one more Bon Jovi song I was willing to fly to the USA to throttle him soon. The only thing that was different with my body was my head had started to pound slightly. No, not pound, but sting and ache on the back right-hand side. Having my skull crushed would have been nicer. You never feel that thirsty when you have fluids pumping through you but you do feel the desire to drink constantly. This in mind, I ran to the toilet before packing my bag. Finally, the nurses handed me a sick note for uni and told me I was free. Do you feel like I am rushing this? That is most likely because this is how it happened to me, I paid attention to every third thing that happened as I rushed away.

Home

The first available taxi was obligingly able to shuffle me down the freeway and off home where dinner would be ready the moment I walked in the door. Poor mum wanted hugs and to talk about things. I wanted the toilet (them fluids) to drop my bags down (carefully place really as I had a laptop in there) and flop (shoes on and all) on my bed. The lights were off and the kitchen noise buzzed into my room but I just wanted to shut the world out of my head. Which hurt like a motherfucker.