Light in the Darkness

Surprise, I’m still alive!

At the moment, most days feel like groundhog day. Days start with the squishing my fluid-filled feet into my sneakers and carrying my sore body to the bathroom so that my bowels have their “last hurrah” before being temporarily silenced by several little pills. It takes me the better of 5 minutes to change out of my pjs and about another 15 to re-change to find an outfit that is comfortable enough without making me feel like the only thing I wear is trackpants and mums’ tops (they are so much thicker/warmer than my own). After that, it’s usually more pills, followed by gym, a post-gym pre-breakfast nap, a bowl of cut up fruit salad and re-packing for hospice. Sometimes I shower at home and other times I save it for when I return, only to regret my decision when standing under the piss weak shower pressure and negotiating space in the bathroom around the never-used shower chair. Late morning is usually an appointment with a palliative care doctor and/or the physio (who talks too much but tries to massage in between telling me about my aura). Then it’s lunch time and most of what follows that is determined by the number of visitors, my level of pain and/or nausea and my natural energy levels. Usually, it’s anything from art to writing, to making arrangements for my funeral and will. By 4pm, I hit a slump and try to have a lie-down before pensioner-time dinner is delivered around 5:15/5:30; then settle in for my nights of discomfort.

I’ve noticed the small things getting harder. I’m slower at walking now, and naturally find it difficult to bend at my ankles to get up stairs. I also now find my body is less inclined to do any unessential movements, and I’ve become bossier on the tasks I’ve ordered my family to do for me. My responses have shifted from “I’ll do it” to “Can you get me…” in what seems overnight, and I feel helpless against my weary body that has decided for itself that it needs more help than my ego likes to admit.

Despite my dwindling energy, pregnant-feeling belly, swollen pelvis, nausea and pain, I’ve given my best effort to still engaging in some pleasurable memory-making activities with my family and friends. Last weekend, Sunday was dads’ birthday and Fathers day, and the hospice volunteer coordinator was kind enough to help me organise a special day for us. It took a lot of calling around and Facebook stalking to find some decent Asian restaurants (dads’ favourite cuisine) that were open for lunch, had availability for fathers day, and had a menu that was more than just the generic fried rice and spring rolls. We eventually found Sunny’s Shop & Mr Chans in Prospect, where we were able to get an expensive hospice-sponsored meal for the six of us (Nadia and Aunty Lou joined). So naturally, dad ordered himself a feast, everyone enjoyed the free alcohol, and my half-dead taste buds were dancing over to the flavours of some new foods.

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Clearly too busy with the Pad Thai for photos

In the second half of the afternoon, everyone was ready for an afternoon nap to sleep off their food coma. However, I’d already organised the second half of our day out. Dad seemed excited when we pulled up for the zoo, and the enthusiasm rolled on through the afternoon. The hospice arranged a private animal meet and greet experience where we met a very well-trained galah, baby possum and quokka. While I’d rather have personally fed some lions, I genuinely smiled trying to get a selfie with the quokka that seemed like it was smiling just for us (and it might have been, given we were feeding it some very delicious raw corn). Begrudgingly, I even agreed to photos of my disgusting face just to capture the moment:

We also got free zoo entry at the same time, where we were lucky enough to actually see Wang Wang and Funi amongst a range of other animals. The air was fresh, but the sun was out and the family atmosphere was there. Honestly, the mood couldn’t have been much better; and there was nothing worth more to me than seeing the smiles on the faces of my family. Like nothing more sinister was going on; as if nothing had changed. Returning to hospice that Sunday night, I wished to die. Not because I was in terrible pain, but because I wasn’t. I had genuinely had an excellent day, felt more ‘myself’ than I had in a long time, and wanted my last memories of my family uplifting and heart-warming. However, we don’t always get what we wish for, and a week on, I’m still here. Heart still beating, abdomen still filling, legs still pooling. But still here.

Which meant I had to try to carry my positivity and ~good vibes~ through to this week. To quickly summarise – I’ve had two more guests from Brisbane visit on Monday and Tuesday, an absolute write-off day where I was bedridden, followed by days of some small wins. On Friday, I was able to catch up with my godmother and godsisters for a manicure, and went totally “out there” with the design (for someone who only gets neutral or dark colours. It makes me feel a bit crazy when I look down at them, but hey; my body might get sick of me before I get sick of them?

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I also managed to see one of my best friends and my cousin – albeit suffered horrible pain at the time – in addition to finalising some death admin.

And while this weekend may not have anything as exciting planned, I scheduled a 2-hour oncology massage yesterday and gave my body what is needed and deserved – a rest. I limped out of the massage feeling relaxed and at peace. Sure, I won’t underestimate the power of morphine in aiding my relaxation; but I will give full credit to my newfound mental clarity to the power of an effective massage. While I’m taking it day by day (ew, cliché), I realise that not much matters in the larger scheme of things. The small moments make and break my days, and the people add or detract from the experience of living. Dying or not, that’s the same for us all. So do the small things that make you happy and surround yourself with people who make you genuinely smile – that ugly, jaw-pinching, eye-squinting smile. Or the smile you secretly make to yourself over a big plate of Pad Thai while trying to ignore the camera phone.

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Buying Time

It’s scary hearing that you’re going to slip into a coma next week and cease to exist shortly after. That’s the news I received last week, and I seriously considered putting myself “out of my misery” on more days than not. Watching myself slowly disintegrate into nothing, feeling weak, spending nights in the toilet and days in agony over trying to move/pee/function, I was ready to let myself go perhaps sooner than my palliative care team.

Fortunately, I didn’t kill myself (this post obviously not typed from the crematorium), as I’ve bought myself another week of seeing some of the most important people in my life. Albeit exhausting, having friends visit from Brisbane, seeing family and watching the progression of the emotional breakdown of the girls from the Bachelor has been worth pushing through the daily pain and nausea. By some miracle, it happened to be that the chemo side effects wore off, tweaked medications kicked in and the absence of fluid in my abdomen and legs worked together to save me from permanent bed rest. Without the reaccumulation of the cancerous jelly, I’ve potentially bought time for a few more weeks while I suck on artificially lemon-flavoured jelly and witness myself slowly starve to death. Which, I’ll be honest, is not a glamorous way to die and often comes with judgement from passers-by who assume I’m some bimbo 20-something anorexic who is “choosing” to starve myself (like that’s a choice, anyway).

However, despite the physical deterioration, these past two months have been some of the most emotionally enriching in my entire life. My family have never been closer, talked more or spent as much time together than they have now. I’ve been blessed to see all the people I’ve been missing, and spent hours with friends I would be lucky to see a few times a year, misaligning schedules considered. Sure, the process of dying is bloody scary. I haven’t yet processed what is yet to come, and not sure that I ever will; but that’s not even the scariest part. The worst part is feeling so close to all you beautiful people in my life and being forced to leave everyone behind. And while, logically, I know I won’t be able to miss people when I’m dead, I feel like I am equally mourning the loss of everyone who is mourning the loss of me.

Each day provides it’s own mental struggle and I’m coping in the best way I know how, but I still feel myself struggling. Sometimes, distraction and dissociation is the only way I can cope, so I colour-in, I draw, I write. Other times, all I want to do is offload to family about my worries, stress and emotional pain. I tell them about how I grieve all the opportunities and life experiences I’ll be missing, and resent the fact that my death will make the life of my loved ones harder (at least temporarily; but some, more permanently). I grieve my place at the dinner table with my butt pillow, and my loss of interest in socialising due to my crippling exhaustion. I grieve my old life, my old face and the old me.

At the same time, I need to find the small wins in the days to keep myself up and moving; and this week, I’ve had quite a few. I’ve stopped leaking out my abdomen and am free of my stoma bag; and have been delighted in the company of family and friends, including three who have made special visits from sunny Brisbane to freeze in Adelaide with me. After much apprehension, I’ve still managed to go to the gym and stay as active as I can without overly exerting myself (occasionally). Also, I have managed to get more than 3 hours of sleep a night. Even though these are small things, I mentally fixate on them to stop myself from catastrophising about waking up with fluid retention, let alone the whole process of dying in general.

Right now, it’s not about staying strong, but about staying sane.
It’s not about seizing each day, but embracing the good moments within the challenges each day presents.
It’s about being as close to people as my energy and lack of communicative enthusiasm will allow, and making memories for them to cherish. Because ultimately, I am gone; but I live on through the thoughts of you people who bring out the me in me when I sometimes fail to recognise myself. And really, if I have to have a few bad jellies and afternoon lie-downs to get those moments, there is still some solidarity in living.

 

The Body of a Bubbling Belly

The past few days have been a shell-shock haze of events. After the manual drainage on Friday, I filled up with fluid in my pelvis again come Saturday. Completely frustrated with my body, the weekend was tolerated with heavy doses of morphine, diuretics to try to shift the fluid and anti-nausea medications, which didn’t stop the unexpected dry heaving and vomiting on Sunday night. The weekend rolled into Monday, for which the day passed by with a session with the physio, reflexologist and a few visits from family. I was desperate for the bigger, more effective (albeit more painful) drain to go in, but was informed that it could be done on Tuesday at the earliest. Considering how painful it was last time, I requested some sedation and my wish was granted – amazing the perks you get when you are terminally ill!

Under some midazolam (a ‘light’ sedation) and morphine, the drain was inserted on Tuesday and exhausted me for the 18 hours it was placed. It drained an impressive 7 litres of cancer fluid from my abdomen, which reduced my energy to a semi-coma-like state for the day. I don’t remember much of Tuesday night nor Wednesday morning except that I couldn’t go to the gym in the morning due to the drain. I did go for a walk instead and spent the morning in hospice (something I never do) before getting injected with more midazolam and morphine to pull the drain out. Unfortunately, I still felt the kind nurse cut the drain cord and yank on it as I screamed in pain. The anaesthesia seemed to kick in after it was over, when I slept for a few hours before a visit from the physio to massage my legs.

The outcome of the drain was almost worth it; or at least, worth it on the Thursday. With my legs finally free to bend again and my pelvis returning to normal, I managed to go to the gym, walk the dogs, see my grandparents and a few friends and even go for an afternoon walk (something I haven’t had the energy for in about a week!). I managed to get a manicure while accompanied by a friend, and slept relatively okay on Thursday night. However, the relief was short-lived when I woke up on Friday with a bulging pelvis and pockets of fluid around my drainage site. Damn. I still went to the gym and went on a cold yet peaceful walk with the dogs and my brother, but needed a bit more morphine than usual and certainly more psychological willpower. I felt my abdomen pull as I walked Patty, and ignored the throbbing pain at the sites of my drains. Until, of course, the drainage hole from Tuesday re-opened and started oozing out fluid all over my pants and saturated my freshly washed top. To catch the volume of fluid, the nurse placed a stoma bag over the top of the open hole in my abdomen, and I have since drained another 600ml.

Or, I should say, that is an estimate, because the drainage bag attached to the stoma bag exploded during my afternoon massage and covered the massage room and myself in bodily fluids. Cancer is so glamorous.

Feeling lethargic and inundated with visitors, I didn’t have breaks to rest and suffered a punishing Friday night. Exhausted but needing to use the bathroom every 40 minutes, I fluctuated between too cold and too hot, comfortable to constantly repositioning myself, and as drowsy as Tigger to as alert as Bugs Bunny. I could feel the stoma bag on my abdomen and wasn’t sure whether to blame my nausea on the drainage or the appearance of the cancerous fluid filling the transparent plastic pouch. Either way, it wasn’t my night and I’m hoping for a more positive weekend.

~

I’ll honestly admit that all of this medical ramble has almost been my way of procrastinating the inevitable of typing the reality of the situation. Truth be told, I’m heartbroken and feel completely numb. Underlining the shit-show that was this week, I received some news that I don’t have much time left. The cancer has spread to inside my bowel, and is coating the lining of my intestines so that anything I eat or drink is no longer being properly absorbed. Without being too ‘sciency,’ the fluid retention is a sign that my lymphatic system isn’t working as it should, and the rate at which I have filled with fluid again is symbolic of my body’s inability to remove waste from the body. The rapid weight-loss from chemo and its side effects certainly does not help, either.

I can’t put into words how I feel about hearing this news. Even having a few days to ‘digest’ it has not helped get my head around what happens from here. I’m terrified watching myself grow weaker everyday and needing more help from others, with even getting up to turn the lights off becoming too much of an effort. Perhaps I was naïve before, but so long as you have treatment options, you have hope. I now know that I am not eligible for any treatment, and therefore, have to accept the cruel reality that this disease is going to self-destruct and take me out with it. While that is the cruel reality, I need to make the best of it. So, instead of waiting for myself to “feel better” and “recover from the chemo,” it’s time to start spending time and energy with those of you who have spent your time, energy and love on me (if you’re lucky, I’ll even let you empty my stoma bag full of cancer fluids) ♥

Circling The Drain (Or The Bucket)

Who knew dying would be such an exciting dance with doom on the daily? Here’s a run down of my past few days…

  • Tuesday night, as you know, I was admitted to the ICU with an infection. It was a great time when the doctor missed a vein in my hand because he “preferred not to use the port.” If the bruise wasn’t scarring enough, I will forever (which isn’t that long for me, to be honest) be psychologically traumatised by the nurse who pulled my pants down, shoved a bed pan into my cancerous lumbar spine and instructed me to have my diarrhea there instead because she had already plugged in all the monitoring equipment. So essentially, she told me to shit the bed. I watched the clock the whole night, met by the beeping of my blood pressure machine which was singing its hell-song every 30 minutes to alert me to my sickness.
  • The night rolled into Wednesday, which was only improved after my CT scan, getting moved back to hospice (and never been so elated to be there), and a free pedicure from the beauty therapist here. Followed, of course, by an upset gut and major lethargy met with a night of poorly timed insomnia. It was also the day where Adelaide had sunshine, and I was more upset about missing out than I was about my terminally ill diagnosis.
  • Thursday was full of new experiences, starting with having to fast in the morning to get a camera put into my butt to check for inflammatory bowel disease. It couldn’t have been possible without the anaesthetist missing three veins and having to use gauze to stop the bleeding in my hands (that was a new extreme); but at least I had a good nap. I woke up in recovery feeling lousy, almost threw up my 2pm lunch, and then managed to catch up with one of my oldest and best friends, Brendan, who drove here all the way from Whyalla. Exhausted by 7pm, I retired to bed with my boyfriend Tempazepam with my legs, now large enough to fill a pool at the Aquatic Centre, feeling like they were going to explode from the pressure.
  • To counter the fun effects of Thursday, we decided (i.e. Miranda decided) to drain the fluid out of my abdomen to give my legs some “breathing space” on Friday. My legs, you see, fill up in response to blocked lymphs in my pelvis and abdomen. In layman terms, a beer would literally go straight to my gut…but then, not as a layman, the beer would probably fill up my feet and legs, too…
    Miranda, the badass that she is, did the whole thing herself with the help of two nurses. She gave me a lot of local anaesthetic, shoved a cannula in my belly, connected a tube that flowed into a bucket on the floor, and started aspirating my gut with a syringe needle. She did it all, of course, wearing a stylish white shirt, which later was sprayed by my cancerous fluids (I have a three-year-old, I can get stains out of everything!” Bad.Ass.). The whole process took about two hours and required me to constantly change positions and massage my abdomen harder than a ladyboy in Thailand so that fluid would move towards the tube. It was incredibly painful so we had to play music and make my-level (which is next level) inappropriate conversation for distraction. Upon reflection, it was kind of fun if you love pain and have nothing better to do on a Friday afternoon than bust open Spotify and drain 1.8 litres of yourself into a bucket. If you don’t believe me, I have photos to prove it:

On a grimmer note, if this can get grimmer, I got my CT results back yesterday. In typical Gabby-style fashion, the scans were not conclusive. There was no evidence that things were worse, but there was no evidence that the disease in my abdomen had reduced because the fluid blocks any clear sight of that. However, the results didn’t matter – I couldn’t sustain this chemo irregardless. The last two months and 4 treatments, I’ve progressively veered closer to the edge of death. Nothing has tested me more; not only physically, but psychologically.

This morning, for example, I woke up after another sleepless and pain-ridden night and tried to get ready for the gym. Except that I couldn’t get my fat legs in my pants, as they had blown up overnight even after a whole afternoon of what was aimed to drain the pressure. With less than 12 hours of relief, I felt defeated and frustrated as I made my way to the gym. I was struggling to go the bathroom, and this time it was peeing. I felt the urge to go every 2 minutes, and was being met with nothing but two droplets and a lot of burning on each go. Unable to tolerate it, or the pain in my legs while trying to walk up and down the stairs, I soon left the gym and decided to go home for a bit. I needed a mental break from hospice, but was soon in more physical pain and further from the people who could temporarily mask it by injecting me with their magical unicorn blood. I lasted about 30 minutes at home before limping back into the car and clumsily driving my fat feet back to hospice. Upon arrival, I broke down into tears and pleaded for some relief from this hell of a body I was living. The nurse gave me a few shots of morphine, followed by IV antibiotics for the bowel infection, then some more antibiotics for the now-suspected urinary tract infection.

And that takes me to tonight, my second Saturday night spent in hospice. There’s a girl close to my age who moved in next door, which comforts me that I’m not the only 20-something whose life is also shithouse and will probably end soon, so thus shouldn’t complain about aforementioned shithouse life. As I sit here in my PJs, a hole in my abdomen, a pelvis full of fluid and my parents silently watching yet more AFL on mute, I feel the full wrath of depression creeping in. End of life at 24 is an understandably grim concept, but I didn’t realise my options were so limited. After this week, I know that the last two months of agonising treatment have essentially been a waste of time. I also know that my bowel is red-raw inflamed and may not recover, making me ineligible for treatment and killing me via starvation in 6-8 weeks. There is only one other chemotherapy option that may or may not work, and my oncologist doesn’t seem too confident in my body’s ability to tolerate more treatment. And whilst it infuriates me to hear someone say it, I feel the defeat deep in the pits of my cancerous gut. Meanwhile, others are out at the footy, seeing friends, watching TV and binge-eating (yes this is a legitimate Saturday night activity), having dinner with their partners or bad Tinder date, or partying (with not as much drugs as me), I am in hospice feeling like an incapacitated toddler. Without the nurses, I would still be trying to put on my loosest pajama pants because it hurts too much to raise my leg high enough to step into them. You know that you’ve reached a new low when you drive around town in a fleecy dressing gown, socks and no pants. But that’s where I’m at right now.

If we are going by the Bible and all the religious memorabilia I’ve been gifted since I was diagnosed, Sunday marks the first day of a new week. Here’s hoping this week is a boring one, that chemo poison is finally coming out of my system, and that my body starts to recover after the tumultuous week.
~Cheersing you and your glass of wine, tequila shot, hot chocolate, coffee, etc. with my glass of ice chips~

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Intensive CareLess Unit

Thank you to everyone who has offered to visit me, but I politely and respectfully decline. Not because I don’t want to see you all, but I have dreadfully low energy and an intolerance for any niceties and questions at the moment. I recognise that what I wrote is very convoluted way of saying the obvious: I’m sick and I’m grumpy.

The last 24 hours has been testing and threatened my will to live. Yesterday morning, after a night of no sleep and a hideously active gut, I was heading back from the gym when I started to feel off. My gym class had been half-assed as I was restricted to motions that didn’t require basically any torso, or any movements that sped my heart rate enough to reactivate my bowels (which limits the exercises you can do, a lot). Feeling not too bad after the class, I spent a bit of time walking on the treadmill while on the phone before heading home to have breakfast. Within three minutes of attempting to digest, I started to dry retch and had to quickly pull the vomit bag from my gym bag as I doubled over for 10 minutes of agony on the kitchen floor. Realising the time, I got up and made my way back to the hospital to meet up with the palliative care specialist (not Miranda, a different one). I hit the 9am traffic but the nausea hit me harder. Pulling over on the side of the road, I was grateful for my spew bag as the liquefied food remains tried to expel and got caught in my chest. The rest of the trip there was mainly uneventful except for my paranoia of getting randomly drug tested and a hefty fine for opioid consumption…

At the hospice, I spent an hour talking to the other palliative care specialist. She didn’t seem to concerned about the vomiting (or fake vomiting, as most of it was just stuck in my chest anyway) or my general feelings of malaise. Although, nor did I stress the point – believing that it was almost my own psychosomatic reactivity to the trauma of spending 24 hours in the bathroom playing Candy Crush. We explored many practicalities of dying, living in hospice care and some treatment options and choices. Her kindness and empathy made me open to discussing everything with her, and I drove home with a bit of a giddy feeling (despite the vomit caught in my throat). Zia was waiting for me on my doorstep, so she was dragged in to a quick power walk with the dogs before I planned to see a good friend of mine. Which, of course, plans went to shit after I attempted lunch and started round ~enter stupidly large number here~ of sickness.

The afternoon did not improve, and, sparing you the details, I ended up in the ICU for a long night of torture and wishing I was dead. Back in the ward today and getting treated for infection, I’ve been pumped with antibiotics and a few too many litres of saline (which has accumulated as litres of fluid in my now-log legs). Still uncomfortable and in pain, it’s difficult to find a ‘fighting spirit.’ Surrounding myself with friends and family seems like the rational and logical thing to do to help with my lack of love for life, but I feel like I don’t have the reserves for it right now. Not cognitively, emotionally or physically. The fatigue, infection and treatment have affected my ability to concentrate and follow conversations with ease. It has also made me feel like I am not there emotionally; a deep apathy arising the more my body deteriorates or bails on me. Majority of the time, I feel shattered and uninspired. I seek for inspiration, but going out to ‘smell the roses’ has only had me focusing on the thorns. Or wishing I was the roses. I’m sure roses have a better functioning system than I do, right now…

So I’m sorry friends, but do bear with me. I haven’t forgotten about anyone, and it’s memories with you special people that I think about in moments of emotional disarray that I look to for comfort. While my body is working towards death, my mind wishes I had more time to make more memories. Because when I’m gone, I’m not leaving a big enough legacy to be remembered for anything remarkable; but I am leaving many special, big-hearted people who I wish didn’t have to face the cruelty of a sometimes malfunctioning ‘circle of life.’

xoxo Captain CareLess

A Narrative of the Palliative

It’s been four (or five) days since I was last poisoned, and getting the chemo pump taken off early was one of the easiest decisions of my life, even if it might potentially limit my chances at a longer life. On Tuesday evening, I made the executive decision that I didn’t want to be alive anyway if the only thing I saw was the four walls of my ugly orange-tiled ensuite, being a burden to my family and the biggest stakeholder in Quilton (loves your bum!) and Sudocrem. It’s about 50-60 years too early for me to be in my position, and I don’t find myself psychologically able to handle the jealousy as I scroll the Instagram and Snapchats of my similar-age peers and witness their diarrhea-less realities. Images and videos of wine tours, raising babies, enjoying meals with friends and family, engagements, and European holidays hurt more than any visceral pain or bone metasteses. Especially on Tuesday night when I hadn’t seen outside the bathroom and the pain, nausea and cruelty of it all reduced me to waterless tears, too weary to cry.

Usually after a night like that, I’d still try to get up and do something. Walk the dog, Gabby. Go to the damn gym, even if you just sit there on the bike and move your legs. But, problem was, there was no end to that particular “night like that.” The night blurred into day, and I felt myself become progressively weaker with the rising sun. I glimpsed in the mirror, wincing at disbelief at my sunken face and scrawny legs as I attempted to manually swivel them from bed. My back felt broken, even with the dull relief of many Endone, and my ribcage ached like I’d been in an alley fight with some hookers in Red Square. After what was 14 hours of constant sickness, the combination of Gastro-stop (13 to be exact) and excessive opioids permitted me to sleep for an hour, only waking to the sound of my phone ringing; my mouth too dry to have a conversation. I rolled in pain to look over at my clock – 7:43am – and promised myself I’d get up at 8am and call my oncologist’s office, knowing that she would send me to hospital. As I spoke, I removed my glued, sweaty PJs from my prickly skin and tried to hold my tears back as I muttered, “I just feel really, really sick” to the empathic oncology nurse on the phone. She called me back with a plan to be admitted to the Calvary at 10am; so of course, I arrived with dad at 12pm and my bed was 15 minutes away from being ready.

Admission entailed the same series of 30 questions that I’d answered the week prior, and it seemed to take hours for the oncology registrar to visit (my oncologist being conveniently away and all). She had decided that it would be best to cannulate a vein for hydration, leaving Portia attached to the chemotherapy bottle. I had decided otherwise; in fact, I’d had my mind set on my decision for around 18 hours – and I was ready to rip the chemo out of Portia myself. After negotiation, the registrar agreed to speak to my oncologist who respected my decision and removed the bottle, instead replacing it with 10 hours of a saline drip. It will make you feel better, they promised. It didn’t. In the afternoon of an incredibly long day, I met a petite red-haired female palliative care specialist who offered a bed in the hospice to trial better drugs. Fulfilling my wish of being a drug experimenter (who doesn’t want free access to another reality for a while?!), I slowly nodded my feverish head at the idea. And later, desperate for some sense of control while confined to the windowless hospital room, I tried to negotiate my way out of it.

“I don’t really need it, need it…like this is a really bad side effect of chemo…yeah, I never sleep but also that’s become normal for me, and it’s just now that it’s gotten really bad due to chemo…which was Tuesday, which is very recent. The side effects will wear off and then I’ll go back to normal, right?”

As I weaved my web of excuses, the doppelgänger of Miranda from Sex and the City smiled back at me. She tilted her head to one side empathically and her red hair followed the pull of gravity as she said, “Gabby, no one is forcing you. We want to make it work for you.” Something about her English accent and familiarity of her face and stature (I admit, I’ve watched a lot of Sex and the City) comforted me enough to adopt a willing attitude to at least trying to improve my quality of life. On my terms, of course, because once a control freak, always a control freak. Dying to die but also dying to feel better, I negotiated the following:

  • I would be able to access hospice on an outpatient basis. This includes being able to leave at 5:45am to go to the gym, come back for afternoon medications and then sleep there overnight (when I have the most problems)
  • Be allowed to eat what I like and not bother with jelly and bowel rest that is (a) only a short-term solution, (b) will exhaust me further than I already am and (c) encourage weight-loss that I can’t afford
  • A private room, of course, as I am a private school girl princess
    (I also found out my dog is allowed to visit, which is pretty cool if I were in there all day and night. I didn’t negotiate this – just a perk of being terminally ill)

As part of the negotiations, we set some mutual goals so that we are working towards my return to the land of lull, eventual return home, or descention to hell. Whichever comes first. The goals specifically consist of attaining 4 hours of sleep per night, managing my bowels overnight and attempting to control the side effects from chemotherapy (assuming I still do some sort of treatment). Miranda (because that’s what I’m calling her now) offered many suggestions but was stumped in trying to find an answer to my complex issues. She, like myself, didn’t understand why my body doesn’t want to sleep at night and instead, my bowels are active all night. Do I need to rest the bowel (i.e. starve) or fill it with stool-bulking fibre, or limit fibre to try to bind it up? A perplexed Miranda looked with sad eyes as I told her I’d tried it all. The pain management side was easy for her, and I was soon injected into my left shoulder and my right thigh with butterfly needles that will stay in place for 3 days at a time for use of sub-cut injections (i.e. injections just under the skin into the muscle). Each of the 12 daily injections sting like a wasp caught down your top, but it seems I have to feel more pain to relieve pain. Gotta give some to get some.

~

So after my ~very medical update~ where’s my head at? My time so far in hospice has been mostly pleasant. Almost peaceful, like a retreat away from home where my unpredictable body consistently tests me. I miss sleeping with Patty at night and seeing dads’ tired face at 1am with my wheat bags (and GOD do I miss being allowed a wheat bag), but I also think I rest in a better state of mind knowing that I’m not disturbing anyone. I rest easier knowing that I am a call button away from help when my body rejects me. There is still some sense of freedom in my ability to leave, and I can return anytime when my sickness in unmanageable at home. However, the flip-side is the mental challenge of being a part-time hospice patient. Last night, I woke to the groan of my bowels and returned to bed after 20 minutes of pain, whereby I listened to the death rattle of my next-door neighbour as phlegm pooled at the back of his throat. Today, as I returned for my afternoon medication, he wasn’t there. The room is empty, like he didn’t exist in the first place, and I felt my heart yearn for his daughter (presumably) who sat with him through the cold night.

I’m yet to meet another patient, but have spied into the rooms and realised they all have at least 50 years on me. And are mostly bedridden, or have very limited mobility. However, I have met a lot of family members visiting, who ask me who I am here to see. They are surprised when I say that I am a patient here; probably too polite to say I look like a malnourished rotten balding peach. It feels surreal to talk about my death to strangers, or be visited by the cooky-but-kind pastoral care worker. ‘Hospice’ isn’t a word I thought I’d be uttering at 24, or if it was, it would be for my grandparents (not wishing them any ill will, but circle of life ya know). As I’m part-time here, I’m still surrounded by life outside of hospital, yet confronted with death on the daily. I don’t belong in either universe. I’m at an intersection of comfort and confusion, peace and discontent, humour and fear…I’m too young to die, yet too sick to really live. It feels like I’m a character out of The Sims with a red bar over her head, all “Needs” (except maybe Hygiene) decreasing… Hunger is persistently low, comfort rare, bladder irritated, energy nonexistent, and anything fun or sociable too much effort. There is no option for “cheat need” or “disable needs” in this life, even searching desperately from external sources and medical staff.

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The aim of being in hospice isn’t to be living in a constant state of red anymore, but get back in the yellow. Sure, the green would be great, but not all of us can realistically get the green light in life. So here’s to my new career as a part-time hospice patient, which comes with surprising perks (ask dad about his lasagna and pavlova he had for dinner). However, I’m sure no perks will be worth it to my family; nor is it to me. And honestly, I would say that I would rather be anywhere else, but in reality, I wouldn’t. I can’t. What I do want, more than anything, is to be anyone else. To live back in the green zone, for even one more day; to even live in a different reality that doesn’t require needles and opioids. Or the sound of death gargles, swishing vomit bags and the phrase ‘palliative care.’

What I would give to live in the buzz of half-time rather than the drag of half-strength. Or fill in those red bars with some green, even if I have to use a few cheat codes every now and then.

 

The Waste of Worry

Typically, most people go to bed at night worrying about tomorrow. Whether it be the lack of time before the sound of the dreaded work wake-up alarm, the presentation they have to give at work, the pending deadlines of assignments; or, if you’re anything inclined like I used to be, whether or not you forgot to lock the front door. Presumably, I’m sure my poor family worry about me at night; whether I’ll deteriorate and wake up in pain, needing hospitalisation or worse. Much to the surprise of others, I no longer worry at night. In fact, the temporary fleeting unconsciousness that night time brings is the only relief I get from the pain and discomfort of living with crippled organs. Worrying is no longer necessary or relevant. There is nothing left to worry about. My body is playing a game of infinitely swapping out one problem for a next, usually via the ingestion of some drug that relieves one problem and emerges another. I compare it to the feeling of being in a constant state of ‘Check’ but not quite getting to ‘Check Mate’ in Chess. If I lost the game, that would not be to my surprise nor my concern; my opponent is already in front and the “fight” is getting exhausting (and really, a bit boring and repetitive). In fact, losing at least might mean I get to change the game.

At 5am this icy Adelaide morning, I woke up after a restful night of 4.5 hours of sleep, and felt defeated; a repetitive loser of life. It took all my remaining steroid-induced energy to get myself up and out to the gym and sit/stand through an hour of cycling. As “I need a miracle” came on the speakers, my vocal cords conjured an unexpected hysterical giggle which, I’m sure, surprised me as much as it concerned my hairy middle-aged lycra-wearing neighbour. The rest of the class was much less eventful and seemingly saner, except that I found my mind deviate to my current quality of life and how to make my days even slightly better. I decided I would try to get myself out all day despite feeling exhausted, even though that would mean I’d need to take a few more sneaky steroids to pep me up (or enrage me, whatever happens). And I did get the temporary energy of a normally-function human. After the gym, I took the dogs for a walk down the river and Patty, much to my dismay, rolled in a dead something-or-other. In my newfound rage, I washed and dried him without sympathy for his disappointed clean face. I then tried on seven pairs of pants and four pairs of shoes in attempts to comfortably and warmly fit my disproportionately fluid-filled body into some socially acceptable attire. Trying to spare you from reading the laborious details, I went out for coffee, walked with my aunty, and got my nails done with my nouna (who didn’t get her nails done due to very poor service, which triggered my ‘roid rage again). I returned home to my Yiayia visiting then had an excessively long shower to remove all my hospital bandages without vomiting over the blood-stained, stuck gauze pad.

At 4:45pm, I noticed something about the day: I was tired. Really tired. Like terminally-ill sort fatigue; but I was also energised. The energy of my coffee date, unconditional empathy of my aunty, real talk with my nouna and educational session with my Yiayia (I taught her how stool softeners work and talked her out of drinking epsom salts – another story for another day), I felt semi-normal. Or at least, pharmacologically energised. Temporarily, I forgot about my crippled organs and didn’t focus on the intensity of my pain. Like the decision for your move after your opponent says “Check”, I had a moment of daunting worry. You see, worrying is for those who have something to lose. Today, I felt as though I could regress at any moment and could sense the onset of my normal nightly pain. So I did a thing that I do with clients  when they are stupidly worried about things they cannot control: I poked fun at it. Here’s how it went…

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Worrying about Dying
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Playing “I need a miracle” on Spotify to recreate my morning cycle class delirium
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Taking a codeine-inspired selfie
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Laughing at my own selfies and how I would look to any onlooker

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

As it is 7:45pm and I’ve been awake for almost 18 hours, I am about to go to bed. Worried? No. Worried is for those with high stakes; and from today, if there’s one thing I’ve learnt, it’s that my stakes are low but also so are my standards. And if there’s a silver lining, it’s that I don’t have anything to lose. Realistically, I understand that the drugs will wear off, the pain will return, the diarrhea will prevail, the sleeplessness will haunt me… But today was the first time I smiled and laughed in a real and genuine manner. Maybe it was the genuine conversations with my friend and nouna; or preventing my Yiayia from hospitalisation from self-induced magnesium sulfate poisoning, or making the right choice of nail colour. Or maybe it was just my own delirium at taking a really blurry ‘sexy’ photo (that I thought was really good at the time) to add to my SugarDaddy profile to top up my disability pension…

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…I’ll let you be the judge of that.