Following a conversation a couple of days ago about my blog and my experiences, I felt I really needed to write this post. The particular person I spoke to raised some incredibly good points (kudos to them) and after our discussion I took this message away: that because I was retelling my story, and was talking about it in hindsight, I seemed incredibly upbeat about everything and could be in danger of failing to convey across how I truly felt at the time. This is completely true.
Right now, as I said in my first ever post, I am in a better position than I was in May. Yes, I have had a cancer diagnosis. Yes, I am waiting for my second operation which could have been prevented if mistakes hadn’t been made time after time. Yes, I am scared. But even though all these things are now, now is better than before.
Before, I was in pain. Before all this happened, I would have described pain as something you experience when you fall down. Something you experience when you’re feeling unwell and you have a painful headache, or a painful stomach. But this pain was different, and in May, my entire life was painful.
Back in the Easter holidays I had met with my senior tutor hoping to defer some of my exams, as I knew there was no way I would be able to make it through them all. I deferred three, but not the whole year, based on the knowledge that my MRI had shown nothing: no sign of any abnormality. There was no explanation for my pain and no hope of an explanation being found. In my mind this could go on forever, and considering the extent I had deteriorated already, I knew I might be unable to even take any exams the next year. I had five exams to pass, so I studied and struggled on.
I would wake up in the morning and be sorry that I had woken up. This was normally at 6 or 7. I would crawl out of bed, no matter the time because it was too painful to lie there. I would load up on codeine and Pregabalin and if it was a good day try to make it to my revision lectures, taking the bus as I was physically unable to cycle. Getting to the bus stop was a mission, as I would have to stop multiple times to catch my breath due to the panic attacks I was experiencing every few minutes.
In my revision lectures I could not focus; the codeine would make me drowsy enough so that I could manage the pain, but so drowsy that taking anything in was impossible. I was a total zombie. I would fidget the entire lecture, trying to find the comfortable position that was never there.
Normally I would stay at home, doped up so that I could manage to sit in bed or at my desk, trying to study for my exams. Often I would kneel on the floor, using my bed as the desk. The Pregabalin made it difficult, and has done so again this time, to look at a laptop screen. The screen would appear extremely bright, with black splotches all over; it would become difficult to read the words, and impossible to look at. After an hour of work and realising I had taken nothing in, I would often give up and sit watching television with hot water bottles and wheat pillows, stressed that I was not studying but knowing I couldn’t.
I had no interest in eating, no appetite. With no one making me eat I would neglect to cook, regularly skipping meals. I had lost at least a stone by this point.
I had no interest in anything.
I dreaded going to bed. Although I was constantly exhausted, lying in bed in the dark meant there was nothing to distract me from the pain and whole situation. I would become angry, frustrated that I hadn’t fallen asleep before the hot water bottles and wheat pillows had cooled. I would storm out of bed, feeling sick with exhaustion, and begin, for what seemed like the hundredth time that day, the ritual of heating the pillows and hot water bottles.
I was going back to my family home in between exams for appointments. I had lost all hope in finding any way to resolve my problems but continued to attend with my mum driving me from university to the appointments, as I knew I would never make it on public transport.
My exams were a joke. I had a separate room and extra time but this was not enough. It was not enough to stop myself from hurting the whole way through, to stop me from feeling as though I was going to faint as I repeatedly failed to catch my breath. I sat my exams on the floor, kneeling on a cushion I had brought into university and that I was actually having to take everywhere I went. I struggled through my first four but lost it on the fifth. I left early, almost in tears. I was so angry and disappointed that this had all gone on for so long, that I had worked my whole life to get myself to where I was at that point, just to lose it all because I was in pain, seemingly because I had fainted that one time in December.
I was planning to stay with my friends at our house after exams had finished, but this didn’t happen. After one pint at the union (multiple for my friends of course), we returned home and I sat with my housemates whilst they were having drinks. I was in too much pain to sit for long and instead I topped up on codeine and went to bed. I called my mum and asked her to pick me up the next day because I couldn’t bring myself to stay. The following day we packed my stuff and moved most of it out. Although my friends were brilliant and supportive, I felt isolated and alone.
A few days later I was told I had a tumour and I had my operation. Things became better. I can’t even explain how much better they were, and everyday I am thankful for this.
Although this all sounds awful, it’s easy in other posts to play it down in retrospect. It’s difficult to remember physical pain, and I am glad for that; I don’t want to know how I felt in those days. Something I will never forget, however, is how I felt after one particular phone call in Florida, where I was having treatment. In this phone call I was told that my tumour had regrown and that I would have to wait to hear from the UK what they would be doing about this. I was told there was a possibility they may come back with the news that it was not operable. This would give me a 25% survival rate.
This hit me. It hit me deep down in the stomach. As I write this I get the sensation of heat rushing up my back and front. I begin to feel a little sick. It hit me that I had cancer. It hit me that I might die. It’s hard to write this because, for me, this was my darkest moment. You never really truly consider your own mortality until you are faced with it. At 21 you feel invincible, and so you should; you’re in your prime and it’s your time to do stuff. You matter to the world because you can change it. But the truth is, although you can change the world, it doesn’t mean the world needs you. This is depressing, but this is true.
After I received this phone call, I had a shower and I cried. I cried the hardest I have ever cried in my life. It’s hard to talk about these things, and you don’t want to upset the people around you, but I messaged a friend, and I told her that I didn’t want to die. Messaging someone about your own potentially imminent death was a scary thing. Seeing the words in front of you makes it more real, and it was terrifying. But I needed to see it at that time because I felt like I really needed to consider it. At that point, everything for me had been in the past tense: I’d had cancer. It was never I have cancer.
I sat in the shower and I cried. I put on some depressing music and cried some more. Crying in the shower is good because once you have finished and you have exhausted yourself, letting the water wash over you feels as though your worries and fears have been taken away.
And indeed after that shower I felt better. Honestly, I have felt better ever since. I got the good news that it was operable and it hadn’t spread, and my worries were back to being what I would like to call life worries, because these worries are over things that may happen when you are alive. And having these are good. I feel lucky every time I have these life worries. They may be serious and they may be scary, but I will be alive.
I will finish on that note, because although this has been an INCREDIBLY depressing post, I like to think that very last paragraph is a little less so. And I promise I will not post anything this depressing again… well, at least for a while!