Worst Kind of Legless

“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…

 

 

The Last Birthday

Last Thursday was the last day of my birth that I will ‘celebrate,’ which is both terribly sad and an incredible relief from the social pressure of having to think up and arrange birthday plans each year. In Gabby fashion, my day started as a big fuck-up.

It started with a miscommunication between my doctor and the nurses. On Wednesday afternoon, my palliative care doctors and I agreed that it would be best if I had another drain put in to drain the cancer fluids out of my pelvis (again) that had been giving me grief and discomfort. The procedure itself was quick and not too traumatic, but the pain of the drain had me bedridden for the rest of Wednesday while almost 5 litres of fluid leaked into the bag. Waking up in tears, I needed quite a bit of morphine and was telling the nurses to remove the damn drain so I wouldn’t wake up with it on my birthday (as stated in the initial agreement). The nurses, unsure of this information and unable to contact the doctor, refused to remove it as it was “still draining” (albeit very slowly).

As such, I had to compromise and “turn off” the drain so that I could stick the tube in my tights on the morning of my birthday. I was desperate and determined to still do the gym class I’d waited for all week (it’s my favourite on a Thursday, conveniently), and still managed to get up to the gym (via the gym’s lift and the help of Nadia). After the class, I went home and called the hospice back to see if they could get in touch with the doctor yet so that I could get the drain out asap – they told me it would be until at least 9am before they could get approval; and therefore, could stay put until then or come back to hospice for more sedating pain relief. I fought the pain and reattached the drain in attempts to get out more fluid before getting it removed. Walking usually helps shift fluids, so I went for a slow walk with dad and the dogs, before returning to the hospice. An extra 300 mLs had drained from when I was meant to get the drain off until the time I had it taken off. Not worth it.

In its common hospital fashion, it took about an hour to even get my pre-meds and, in the spirit of my body, I found the removal incredibly painful despite the help of morphine and medazolam. After I’d come-to and was drain-free, I had 10 minutes to get ready for lunch. Quickly getting changed and scrubbing some makeup on my gaunt face was a huge effort and the drive to lunch (2 minutes away) was too short to fall asleep again.
Bitching aside, I got there. And lunch was beautiful, especially after I finally woke up a bit. My Zia Linda joined us (we have the same birthday), in addition to one of my besties, Bang. In true birthday spirit, we ordered too much food, and enjoyed a few hours of laughter together. Afterwards, I was visited by my grandparents and other friends and family who pleasantly joined me to talk about my life rather than my pending death. I fought back my fatigue, ate donuts for dinner and slept through the Bachelor that night.

Now that it’s been almost a week since I wrote this post (and it’s been sitting in my ‘drafts folder’ to proof read [Note: I’ve done such a good job, I haven’t even proof-read this]), I realised that, despite the disasters, it was a positive thing that that my birthday had it’s ups and downs. I guess 25 is an official “welcome to the new age bracket” whereby adulthood is futile; and for everyone reading, you would understand that adult life is also boring and birthdays are typically another day for most. Of course, knowing that these ‘milestones’ will be my last adds extra unnecessary pressure, but I’m still doing what is important – I’m leaving memories for those who love me after my memories disappear. And they are the ones that matter to me the most ♡.

 

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.

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