“I’m scared” – two words you never want to hear come out of your own mouth or the roll of the lips of a terminally-ill loved one. After yesterday, however, all I could feel was fear. Terrified that it was my last day on this earth, a monotonous to-do-list ran through my head… how do I cancel my gym membership? I forgot to write about my small give-aways in my will! I never finished that letter to Criddy… None of it mattered in the moment, but it seemed relatively important; or I should say, my limited time bothered me immensely.
So, before I dive down in the deep rabbit hole of death anxiety, I should give you some context for the turning of the most recent events. After getting the celebratory “birthday drain” ripped out and having a not-too-bad birthday, my body was quick to develop a fluidy mess within my abdomen and pelvis in three days. The week progressively worsened and put my pain tolerances under some serious testing. By last Saturday, I was having discussions with my doctors about inserting a permanent abdomen drain that is similar to a tap (i.e. it’s always there, but you can turn it on and off as required) in the following week. She agreed, knowing the impact of the fluid on QoL, and I was scheduled in for insertion of a ‘peritoneal pleural tap’ on Thursday.
The few days between scheduling and booking seemed exhausting and wore me down, despite them being logistically full of pleasant activities. I caught up with a friend who had returned from Europe after months of being away, saw my Yiayia and other kind relatives, and was actually productive in my day-to-day. I woke up on the Thursday feeling not-too-good, but blamed it on good sleep (sometimes you’re more tired when you get a few hours in a row) and low blood sugar/pressure from fasting for the day’s drain insertion. The nurses agreed with my theories and were not alarmed by my sudden need for sleep and excessive rest. Plus, things were running smoothly – I had Bang there for support and was wheeled in on my own bed, where I woke up from the procedure dignified after being administered appropriate pain medications in recovery. I had been allocated the kindest anaesthetist who made the experience a fair deal more comfortable than any other similar abdomen surgery I’ve had previously (and a pleasant bedside manner puts the cherry on the cake). Within a few hours, I was wheeled back down to hospice and ate my first meal of the day, resting as my puffy body drained 4 litres of blood-filled cancer fluid into a plastic bag. Not feeling too bad that night, the pain was somewhat managed on morphine and “hot” packs; but my breathing started to feel worse. I had a pain down my left shoulder that I was blaming for my breathlessness; accompanied by a general stiffness throughout my legs, which I blamed on being immobile throughout the day.
By Friday morning, any movement from a seated position and I felt like the most morbidly obese on The Biggest Loser who had just started their too-hard exercise routine. My breath was so laboured that I couldn’t swallow water without half of it either coming up out of my nose (hello, watermelon juice nasal detox) and felt sharp stabs of abdominal pain upon standing. Thankfully, the doctor attended to me quickly (never a great indicator of “being okay” but an excellent indicator of a great doctor) and ordered antibiotics, pain medications and a whole bunch of rest (not as if I could move, anyway). By this point, I had to be accepting of my ‘new condition,’ as sitting with anything less than an oxygen tank made it impossible to catch my breath. I also had to be accepting of the fact that none of these symptoms were within my control; and even any chance to relinquish some semblance of control would manifest larger frustrations and exacerbate my fears (i.e. part of the symptom presentation of infection is, in fact, agitation and/or aggression towards self or others). So I took my control hat off and sat and waited for the medications to have an effect. Sure, it wasn’t the most proactive approach – but my body had called the shots and I had no energy to focus on anything on TV.
Instead, I let the antibiotics kick in, was wheeled in a wheelchair around the block by Zia and mum (holding the oxygen tank) and was ordered tests, and subsequently, blood transfusions. I would have prayed for it to work, had I been more religious, but instead I just hoped to feel better. The day drags when you’re so unwell, and reflection of the girl looking back at me in the mirror was completely unrecognisable – the gaunt, white-as-snow, sunken face were not my features. They were features of the the other patients – you know, the ones that were actually dying on bed rest? Not just me and my fake dying… And there I was, hoping for more time. It was challenging to accept that I may have just transitioned into one of those “legitimate” patients, and recognised that how I had gotten through mentally until now was through complete dissociation from ‘that’ group (classic ways that groupthink and racism works!). I was different, I would tell myself, I could still get out of bed, shower alone, go to the gym and walk around… and my biggest fear came through on Friday. Waking up and losing that in a day? Shit, I was scared. And as the words fell from my mouth to my family, I could see the fear in their faces, too.
Yet, after a few blood bags, many antibiotics, and a night of comatose sleep and I can stand without an oxygen tank today. And I’ve managed to write a somewhat coherent post and I haven’t needed the wheelchair yet. I don’t know where the day, or even the next week will take me, but I am really hoping somewhere better than this, fast. Wherever that may look like…