I had written a post about being scared and I was putting the final touches to it, getting some photos when the craziest thing happened. Yes that’s right, you might have guessed it: I got scared!
So I decided that rather than put the original post up, I would write up another one about what exactly has gone through my mind tonight. And then so as not to deprive you of a wonderfully non-uplifting post about what I find myself frequently stressing about, I shall put that one up in a few days. Hooray!
I actually had a really nice day today. It was chilled. We shopped and then we went out for dinner. It was stress free and I felt normal. Then, as I said, I was finishing my blog post and looking for photos to assign to it…
I was trying to find a photo to illustrate what happened after my surgery so that I could show you, rather than just tell you, why I was and am so scared by it. I was looking for a specific photo of me that my mum took a couple of days post surgery. At the time I wanted her to take a nice one for this blog but when I was actually able to see what the photo looked like, I knew there was no way it was going up. This was not because it was particularly gorey or graphic or anything like that, but just because it is totally embarrassing; my face is unrecognisable and I look like a pufferfish.
However I thought my post about my fears warranted inclusion of this picture so I spent the day working up the courage and talking myself up to making it public, partially because it was relevant and partially because I think I am portraying all of this as easier than it actually is. I don’t mean that in an Oh-aren’t-I-so-courageous-getting-through-all-this kind of way, rather I think I tend to write posts when I am in a more positive and pro-active mood. It is because of this that I think the hard parts get brushed over sometimes, which is something I am not at all happy with.
Two of my main aims in doing this blog are to:
- publicise and normalise some of the less glamourised aspects of my cancer diagnosis
- show, for real, what it is actually like going through this. Not just the strong, inspirational parts but also the parts where I feel shitty and weak and scared, the parts where I feel completely overwhelmed and exhausted and completely and utterly pissed off.
I feel that by focusing too much on only the positive aspects of this diagnosis, such as what I have learnt from all this and what I have got out of it, I am myself glamourising it. Positive posts are definitely easier for me to write but whilst, yes, I have gained a new perspective on life, and yes, I often do feel fine or good – sometimes even fabulous, especially after that cheeky sangria the other day – a significant amount of the time I do feel very anxious.
SO! I looked through my albums to find the photo in question but upon seeing it began to stress out and feel nervous. Why is this? I know that since my surgery I been haunted by these memories, but my feelings towards it were seeming to improve as time passed. Recently though, in the last couple of weeks, I am beginning to feel more scared and my reactions to things that remind me of it have worsened and intensified.
So to reflect that, here I will take you through what happened in Intensive Care, in the hope that perhaps you can gain a little more insight into why I am so hung up on it…
After my surgery my face swelled up really badly and I lost my sight because of the four and a half out of eleven hours under anaesthesia that I spent on my front. I did not know this would or could happen and when I woke up, in unbelievable pain and unable to see, I was terrified. I thought the surgery had gone wrong and, under the influence of a heavy amount of strong painkillers and the anaesthetic, I found myself dipping unwillingly in and out of consciousness, trapped under a blurred, hazy cloud of messy thoughts and terror, unable to find comfort in the words of those around me nor communicate my confusion nor pain.
On top of this, I had a septic episode when my neckline was removed, causing me to shake and sweat uncontrollably. My body became toxic and my doctors had to put a new neckline in and pump me full of antibiotics to stop me from, basically, dying. This was the most surreal moment; one moment I was just feeling a bit sweaty and the next I was looking up at the ceiling with medics all around me, tapping my wrists, trying to find veins so they could replace the cannulas I had sweated out. I was quickly sedated so they could replace the neckline as this was the quickest way to get the antibiotics into me. My doctors were amazing, talking and helping me through it and I was never in any pain at all, but that doesn’t mean this memory doesn’t make me nervous. I am nervous because I can remember a moment where I woke up, confused whilst they put the neck line in. It was only a split second, a snapshot view from under the plastic sheet they put over my face as they tugged at my neck, but there is something about this memory that provokes anxiety.
But worst of all there was the pain. There was the pain that continued for days on end, pain that had every muscle within me tightened and my hands permanently locked around my pain pump, like claws. It was pain so bad that I told my mum I was scared I was going to die. Similarly with the prospect of living in such pain, I kept telling myself I would rather die. It is very hard for me to write this.
Nevertheless, the pain worsened three days post-op when my stomach distended and blew up massively. It already felt unbearable and I remember having my parents’ hands tightly squeezed in my own as my dad persistently and precisely pressed my pain pump every five minutes. At this point I was on a mixture of Fentanyl and Ketamine, the combination of which did generally work brilliantly for me. We were trying to get my pain a little under control before I was moved for a CT scan of my abdomen to make sure nothing had been ruptured during my surgery. However, just as the pain was slightly easing and I was about to be moved, my pain pumps broke for thirty minutes. This does not sound like a long time but it felt like forever. My teeth were clenched together and tears were leaking out of my eyes, my breathing loud and desperate. I was in agony as my doctors and nurses rushed around me trying to fix them.
They eventually did fix my pain pumps and I was immediately moved, wheeled on my bed through the long corridors to the scanning department, however there had not been time for me to start feeling their effects. Memories of this are upsetting for both me and my parents. For my mum this was the hardest part as she felt completely helpless. Finally during the transportation to the department she was unable to cope and had to leave me until after my scans were done. I understand why. It was unbearable for me and it showed in every fibre of my being; I can’t imagine how difficult it was for my parents, who know me so well and have looked after me my entire life, to helplessly watch.
For my mum to have to walk away, I know it must have been bad because she is pretty unbreakable. She has stood by me every other moment of this struggle and done anything and everything for me. She has wiped my ass god-knows amount of times when I was unable to do it myself, injected me daily with anti-coagulants and she spends every second that visiting hours will allow with me, sometimes even longer than that. She has spent nights sleeping by my side and talked me back to sleep countless times in Intensive Care when I woke myself up, convinced I couldn’t breathe. She has cleaned up my shit more times than I can count and held my head as I broke down in hospital after wetting myself and realising that I was incontinent. Basically, my mum does everything and for her to have to walk away, things must have been unmanageable.
At this moment in time, more than ever, my dad reaffirmed his place as my rock. He looked after both my mum and myself at this critical time and we both know that we will always be grateful to him for that. He stayed with me holding my hand even though it must have been so difficult for him and walked with me as far as he was allowed. He also was so on it with the pain pumps, I couldn’t have asked for a better drug dispenser at that time – every five minutes he would press that button. Not many dads are cool enough to give their kids ketamine every five minutes. In all seriousness though, my dad and I have definitely grown closer throughout this, particularly due to my stay in Stanmore, and I am more thankful for him than ever.
The very worst moment for me, however, was when I was shifted from my hospital bed to the stretcher for the scan. At this point I was left with medical staff only and I lost all words. As someone who never goes above a five on the pain scale, this was a full blown fifty and it was just the most awful pain I have ever felt. As they moved me, pain exploded in my right hip, managing to be both hot and cold at the same time. I don’t even know how to describe it because there are no real words for it, not now nor back when I felt it, I just remember screaming as loud as I was physically able as I choked back tears.. I haven’t ever in my life screamed for real, screamed how they tell you to as a child if someone tries to take you, scream with all your might because you don’t know what else to do. But at that moment there was nothing going on in my mind, instinct took over, and I screamed without thought nor reason. It was the only thing I could do.
Following that, whilst they scanned me, I remember quietly sobbing, my throat hoarse, with my eyes squeezed tightly shut, to block it all out. I can hear the sound of my weak and exhausted voice, pleading with the medical staff to not move me again, to give me a few moments before they transferred me back to my bed. Weirdly and thankfully, there was barely any pain when they moved me back and I never experienced another pain quite like that one again. I have never been so relieved of something in any one moment.
Although I may not have spoken about these specifics I have gone on and on about this surgery, which is, I would imagine, probably getting a bit repetitive. But I’m not going to stop talking about it because I can’t stop thinking about it. These memories scare me.
I have said to some people that I don’t know what I would do if I needed to have another hemi-sacrectomy. If I needed yet another of those operations I genuinely don’t know if I could do it. There is nothing but darkness and fear when I think of it. The worry that I may need another eats me up at times and although I was getting better, I think I am feeling more scared again.
I am wondering whether me dwelling more on these events is linked to the approach of my finishing proton therapy; the more I progress through my treatment, the more achieved, the further there is to fall and that is a scary thing. Or whether it is because I am beginning to physically feel healthier and stronger. As I recover and this lucky streak continues, it does feel as though there is more to lose. Or perhaps it is just coincidence; I would imagine that much like in any recovery, I am bound to go through some rough patches. Whatever it is, I will work through my fears and anxieties. I have an unbeatable team looking after me both here and back home, helped by my fantastic family and friends who have not stopped for a second letting me know that I am still in their thoughts. The fact I can talk about this openly on here is because they have constantly reminded me that whatever I am feeling is valid and that I should not be embarrassed by anything.
I am comfortable with the fact that I am terrified. I do not think that I am failing myself in any way or letting myself down. I am accepting that I am shit scared by these things and I know that it is okay to feel the way I’m feeling.
And finally, I want to say that the photo of me with a fat face is, for the purpose of taking the piss out of me, off limits. That probably sounds really boring but I’m not joking. If you want to take the piss, here is another ridiculously cringey photo of me and a friend dressed as the Ugly Sisters for a ballet show we did. One of my best friends, my lab partner at university, put this photo as her computer desktop at university so that all my lab demonstrators got a good look at it. She recently lost the photo and has been looking for it so that she could embarrass me further, so here it is as a massive thank you to her for always making me die inside!
I hope that this post has not reflected badly on Stanmore (where I had my surgery). Stanmore and my medical staff there were absolutely fantastic. If I did it all again, I would want the exact same team with nothing changed about any of them. I would recommend anyone go there because it was the loveliest place filled with the kindest and most caring staff. I came out of there blown away by their excellence and the standard of care, pleased to go home but sad to leave my nurses who had cared so perfectly for me. And it wasn’t all woe and misery! I spent invaluable time my with my family and friends, and I met some lovely people!