Below is an X-ray of what my spine looks like today, post spinal fusion. What you can see is the entire thoracic spine, fused together by titanium rods and screws. The contraption you see in the middle is the metal cage that was filled with powdered bone from one of my ribs, as a replacement for the vertebrae they removed. To the left of this metal contraption, on the left image, you can vaguely see an additional missing rib, which was removed as it was also infected by the cancer. The goal is that the rods will not move at all. I am just lucky that the thoracic area is the least mobile of the entire spine so it is not as noticeable as it would be in the lumbar or cervical areas. But, not gonna lie, it’s still a total buzz kill!
After the nightmare of waking up prematurely post surgery with the breathing tube still down my throat, things slowly started to improve over the next several days. By day three I was moved into my own room and out of the madness that was the intensive care unit (ICU). I was finally relieved of the plastic drainage tube that had been wedged between my fractured ribs and partially deflated lung, allowing my breath to deepen from the bird-like sips of air I was previously taking in. Although still painful to breathe, this meant I no longer felt like I was suffocating. Praise baby Jesus! My nurses regularly encouraged me to cough, as to avoid a build up of fluid in my lungs, but the idea of that level of pressure against my bruised and wounded ribs was chilling. So, being the brat that I am, I would just look at them with you-gotta-be-shitting-me eyes, before letting out a pitifully weak, fake cough. This would usually be enough to be left alone for another day or so, before my acting chops would once again be put to the test.
At this stage I was still “nil by mouth”, meaning I wasn’t allowed to eat or drink anything for 5-days’ post surgery. The eating wasn’t a problem, I was so out of it on medication and bloated beyond recognition that I wouldn’t feel like eating for weeks (Disclaimer: However effective, I do not indorse this as a healthy form of weight loss… unless of course muscle-wasting-chic is your thang). However, the lack of water was torturous. I wasn’t even allowed ice chips. On a really special day my concerningly pregnant nurse would lean over me and dab a water-soaked cotton bud onto my dry, cracked lips (the same lips she would occasionally slather a thick layer of my favourite lip balm on, to help them heal. The smell of which now makes me dry heave). I was pathetically grateful and lapped up those cool, droplets of water like heroin! Which incidentally, I was allowed, in the form of morphine. What a world! I began begging the nurses to give me even a tiny sip of water but it was futile. I remember finally being allowed some ice chips to suck on. I must have looked so hopelessly ecstatic because the nurse looked at me and let out a slightly sorry grin as she handed me the tiny cup of frozen heaven. I would place a single chip at a time in my mouth, savouring each morsel. One by one I would let them melt on my tongue, enjoying the cold liquid for a moment before letting it drizzle down my throat with utter satisfaction. Momentary sweet relief.
I don’t know how to describe the pain that could even provide a glimpse of the all consuming, relentlessness of it. It was pain like I have never known before or since, and hope to never experience again. It was pain that made you pray for death just for the relief. But it would be the unexpected losses, which I had zero control over, that would end up testing my already fragile mental strength to the absolute limit. I recall the actual decision making process that I went through just to be okay with giving over any and all remaining dignity, as well as trying to override my basic human instincts and needs. I knew that if I let my desperation or pride get the better of me in any way, I’d be ruined. I would not make it. So you just don’t let your mind go there. You can’t. You must accept the pain of being split in two, because you are already on as much medication as is therapeutically possible. You gratefully accept that fact that your pee drains into a catheter, because you are unable to even roll to one side on your own, let alone stand and walk to the toilet 3 feet away. And you must find a way to let go of any sense of ego, as you will now be whore-bathed daily by nurses you’ve just met (who, for some cruel reason, all happen to look like Victoria Secret models. Is that a perk of private health?). There is no ideal way to prepare for a challenge of this magnitude. I was just thrust in and started to pray (for the first time in my previously self-absorbed life) to everyone and anyone I could think of, that I would have the mental stamina to survive. Sitting with intense uncomfortably and allowing things (everything) to happen to and for me, is a lesson I wish I could have carried out of that hospital, into my real life. Because if you don’t give up, what you find you are capable of is nothing short of superhuman. It’s completely fucked! But it’s astounding. It’s like you are forced to access this tiny corner of yourself that despite everything, still has the ability to find a little glimmer of calm, even though everything else in you wants to scream, cry and die. Let me be really clear. I am not special. I did not access this place out of strength, tenacity or positivity (lol). Quite the opposite actually. I found it because I literally had no other option. All the overt reactions that I desperately wanted to pursue, had been stripped from me. Calmness, found me, out of necessity. It was pure survival instinct.
I found being washed difficult. Not because I’m overflowing with dignity, in fact, I could probably do with a healthy helping of shame! No, more so because my body was so unrecognisable that I felt obligated to apologise and justify myself. Here’s something you don’t learn watching Grey’s Anatomy; it turns out when your body goes through such extreme physical trauma, it sort of ‘freaks out’ and all the fluid moves toward the surface as a protective mechanism. Don’t ask me the science behind it, but it’s essentially full-body swelling. Not dissimilar to when you sprain your ankle and it explodes into a cankle…only, everywhere. I found this quite confronting; and not only due to the exceptional uncomfortability of having my skin stretched to capacity like a human water balloon, or because my hands looked like someone blew up a pair of rubber gloves. Disappointingly, I was ashamed of my size (I can hear the eye rolls from here, trust me, I feel you!). Let’s attempt to make some sense of this utter head-fuckery, shall we? First of all, I am but a girl raised in an image-focussed world, which from the moment I first blinked was constantly reminding me that skinny and youthful is the only way to be worthy in this world (of what exactly? A man? Success? Existence? This part was never made clear to us women. It is seemingly unimportant as long as we resemble a Hadid or Kardashian). Additionally, I had gone into surgery very thin, too thin in hindsight. As the “good” little, recovering anorexic that I was; I obsessively followed the all-organic, sugar-free, gluten-free, protein-free, joy-free, real-life-free, “cancer-healing” lifestyle (AKA mentally toxic diet) that had been suggested to me at Camp Cancer (not it’s real name)! So, when I woke up looking moon-faced and 6-months pregnant, it was (yet another) shock I was not anticipating. How’s that for a mind fuck?
I think a lot of us have this idea that overcoming something as supposedly life-altering as cancer or a serious illness, guarantees us personal evolution and growth. Well, turns out…it ain’t that simple kids! *insert chain of expletives here* I was in a hospital with brilliant nurses who I was required to trust with everything from feeding me, to wiping my butt and here I was, worrying that they thought I was fat! Even in my morphine-fuelled paranoia I could step outside myself and see how insanely ridiculous that was, but fuck me, old habits die hard. Was I concerned about the foot-long scar that was now lining my back? Nurp. The fact that I would essentially be bed bound for the next 6-months? Hmm, not so much. I worried that my carers were gathering around the water cooler, talking about the HUGE bitch in room 305, as if they had nothing better to do! *Face palm*
On that incredibly discouraging note, I do want to add that 6 years on, the care-factor for how my body is perceived by others has decreased immensely. I am unsure however, if that is the trauma finally settling in and doing some helpful work, or if it just comes with age and experience. Like anything, it’s likely a mixture of many factors. This showed me that managing my expectations would serve me well. As yet, I have not mastered this fundamental skill, but hey, knowing is half the battle right? ….Right..? I was so disappointed in myself for giving a flying shit about my body swelling up like the elephant man, instead of directing all my energy into my healing. This was anxiety that was completely unnecessary and unhelpful. The reason it upsets me so much is that I have seen it before in loved ones who have had terminal cancers. They are dying and yet further their suffering by devastating themselves over the weight gained from their steroids and other medications. It is truly heartbreaking and, in all honestly, I don’t know what we can do about it. How about diversifying the way in which women are portrayed in media, destroying all social media platforms (or why not the internet all together!), and taking down the patriarchy once and for all! Might be a good jumping off point? Who’s with me! … Yeah, this could take a while…
As I was lying in my hospital bed stressing that I looked like a shiny, overgrown baby, my nurses were more concerned about how to turn, wash and moisturise me. I had to be rotated and marinated, like a pig on a spit, a couple of times a day as to avoid bed sores and help blood circulation, as I couldn’t move on my own. The problem was that my spine was in twain and still far to vulnerable to risk twisting it in any way. Therefore, it would take 3-4 nurses to perform said spit-roast… I mean turn. There would be someone on each shoulder, at least one person on my legs and hips and on a lucky day, I would even get someone to man my head. This was all just to roll me onto my side for a maximum of 20 seconds so they could scrub me down, lather me up with moisturiser, and quickly lie me back down. Look, I love attention more than Mariah loves a high note, but I did not look forward to these turns. I couldn’t breathe on my side as the pressure of the bed against my rib was too much for my weakened lungs to push against. I would have to time my breath right before they rolled me and hope I would have enough air in my lungs to last the distance. I only remember one time I was left on my side for too long and I started to splutter for air. I was just starting to pass out as the team of nurses returned me onto my back.
For the most part, my nurses were wonderful with me; kind, gentle and sensitive in delicate situations. One was even so sweet while wiping my ass that I cried and wrote her a thank-you note! She was truly an angel and definitely in the right job. The doctors were different however. Obviously extremely talented and proficient in their fields, but often lacking patience and compassion to the same degree. I had a really horrible experience in ICU when the nurses designated to my bedside were unable to access a vein to insert one of my cannulas. My poor little veins were like dried up worms left in the sun too long, as I was so completely dehydrated. The nurses had tried numerous times in each of my elbows and just as I overheard them talking about shoving it in between my toes, in an ohmage to Amy Winehouse, a doctor came over in a huff. We were clearly wasting his precious time. I was high as a fucking kite and only 24-hours out of surgery at this stage, but even I could tell this guy was being a jack-ass! He was acting as if it was my fault for not having plumb, juicy veins and the nurses’ incompetence for not being able to access them. In his anger for being called down to perform such a ‘menial’ task he started stabbing at my wrist with the thick needle. I don’t know how many times he tried before he decided this was getting cruel and he went to get some numbing cream so he could continue his massacre. However, I do know that 6 years on, I still have 5 small scars on my left wrist from this incident. Just for comparisons sake, I had dozens of cannulas in each elbow and wrist over the course of the 2 weeks I was in hospital and hundreds of blood tests taken in the same elbow over my 2 years of treatment. Despite that, I do not have one single scar in any other area, other than where this c*nt-monkey butchered me. Again, I couldn’t cry, scream or tell him to go “eat a bag of dicks!” as much as I would have loved to, as this would only increase my discomfort. But there was no preventing the silent tears that were rolling down my cheeks. The nurses’ felt my pain and comforted me gently but they had no power in this situation, and neither did I. He probably thought I wouldn’t remember how he treated me because of the state I was in, but this was one of the most traumatic parts of the whole procedure and there was absolutely no need for it to be. I felt like an annoying, irrelevant, pin cushion.
Unfortunately, this was not my only disturbing interaction with a doctor. This is tough for me to write, even as the over-sharer that I am. As even for me, it is hard to make sense of. After about one week in hospital, still in an extremely delicate condition, my primary surgeon came in to check-up on me and deliver some news. For context, I had only re-learned how to sit up at day 5 and attempted standing for the first time, around day 6 or 7. This is important, because had I been physically able, I would have flown across the room and beat the living shit out of his scalp-happy ass; Negan from The Walking Dead style. Trust and believe! But, I digress. He entered my room, where mum was sitting by my bedside. He had this strange, nervous grin on his face as he told me the medical team had been analysing the area of my spine they had just removed. I could tell he was dancing around telling me something important, but as he had essentially just saved my life, I was trying to be polite and attentive. I can not recall his exact words, because as he spoke my head filled up with so much burning rage that all I could hear was a high-pitched squeal and the pounding of my own heartbeat between my ears. But the general gist was this…
He stood wringing his hands and standing with his back to the wall, as far away from me as he could physically get. Even as a 23-year-old, weak, immobile girl; I still must have looked fucking terrifying. Good. He stammered anxiously over his words as he told me that the vertebrae they had removed no longer contained the tumour they had cut me open to retrieve. I stared silently at him, oscillating between blind rage and complete heartbreak. My face must have been displaying this, because I’ve never seen a fully grown, highly accomplished man, so petrified in my life. There I was, lying in front of him in agony so severe that I am in and out of consciousness and he has just told me that I am and was, tumour free all along. What the actual dick? I felt like I was going to be sick. I fell into shock and although I didn’t feel in my body anymore, I heard myself ask all to politely, “So…why did you do the surgery?”, to which he nervously chuckled and replied, “I thought you’d ask that.”. DID YOU? Did you think I’d ask that?! My, your powers of deduction astound me sir! Fucking ass hat.
In reality, I have to give the nerd a break, but it’s tough man. He went on to explain that the treatment had been so successful in converting my jelly-like tumour into bone, that it had calcified it entirely. This was a good thing and what we had hoped the chemo would do, but it had exceeded expectations in its efficacy. I think it was assumed it would calcify the outer layer of the tumour but not the entirety. Therefore, they were shocked upon opening it up to find only more calcified bone. He further explained that had the tumour been somewhere less dangerous, such as a toe for example, he would have considered taking me off the chemo and testing whether or not the tumour reverted back to its previous, jelly-like state (which was the suspected outcome) or whether it safely remained as new bone. However, due to the proximity of my tumour to my spinal cord and the risk of paralysation, this was not a chance my medical team were willing to take. I understand this and could even make sense of it at the time, despite my anger and confusion. But in all honestly, I think I would have been happier just not knowing. I could have lived in blissful ignorance for the rest of my life…or at least wait until I have full use of my limbs again! The timing wasn’t ideal…
This whole experience, both in the short and long-term, has taken so much of my health, happiness and life. Therefore, it’s almost impossible not to wonder what could have been. Maybe the tumour comes back and I end up having the surgery, leaving me in the same position I am in now… but maybe it doesn’t, and my life could have been so immeasurably different. Better. I know it isn’t that simple, and getting locked on ‘what ifs’ is a dangerous place to live, but when I look at my life before and after the surgery, I can’t help but think, what if we had just tried. Now, 6 years on and I am unable to work from living with sever chronic pain and trauma-induced fibromyalgia (me and Gaga alike!), my mental health is under constant strain, and my weeks are broken down into which day I see certain medical specialists. I desperately crave a life that isn’t dictated by how I feel when I wake up in the morning. It has been a long time. Way too long. And unfortunately it doesn’t seem to be something you get used to. Not for me anyway. I do not seem to be gaining acceptance of my condition or strength with time. In truth, I feel as though I’m eroding. I am tired; a to the bone, heavy hearted, just fucking exhausted, kind of tired.
So, from the bottom of my old, shrivelled heart, thank you for reading. This little blog gives me purpose and helps me clarify and confront parts of my life that I have been running from and burying for a very long time. I never really expected anyone to read, but you are, and it’s truely humbling. Whether you are simply reading, commenting on my writing or offering an insight into how you have been able to relate to my stories, it is all deeply encouraging. Every one of you who takes an interest in my writing contributes to my life in an extremely profound way. Once again, thank you.