A (Literal) Open Mind
A key part of my diagnosis has been the treatment, the most prevalent of all being brain surgery. The biggest, scariest sounding surgery you could possibly ever have, one in which I’ve been ‘fortunate’ enough to only need 3 times. I initially had a biopsy, to find out what type of tumour Bertherb really was, we already knew he was a damn nuisance but we had a better chance of fighting him if we knew just how to repel him. The next two surgeries were to remove the rest of the tumour, which unfortunately had returned by January of this year.
So what is like really like to have brain surgery? Explaining my experiences in person is always interesting, you can see the shock in people’s eyes and the pure amazement they have for what modern medicine can do. Normality for me is having these surgeries, but isn’t really a normal thing to come across in everyday life when the scar isn’t on show. Luckily though, it will make a pretty great ice-breaker, so I always have that to look forward to. Having brain surgery is the biggest clusterfuck of emotions you’ll go through, on the one hand you know it is a major surgery (so much so, you’re feeling like you’re legally signing your death warrant when the consent forms come in) but actually going through the surgery just feels like any other, they put you to sleep the same way but you just spend a bit longer in recovery (for obvious reasons). So I decided to break it down, step by step, what having brain surgery really feels like.
Pre-Surgery
The nerves kicked in, I signed the consent form like you do with any surgery as the registrar explains all the possible complications. Death, stroke, loss of fluids, not being able to diagnose the tumour, all that fun stuff. In all honesty though, there is more danger in not getting the thing taken out of your head if it is operable than leaving it where it shouldn’t be. The normality of preparing for the surgery always struck me as odd, I was embarking on the biggest moment on my life and all I had to do was not eat after midnight. Preparation for surgery is a pretty constant thing whether you’re having your arm fixed or a tumour taken out. I woke up the morning of my surgery, had my shower and put on those stylish compression socks, hospital gown (that was definitely showing the ward my arse), and those strange knickers that look and feel like you’re wearing a loose shower hat to cover your dignity. The only part of preparation that isn’t common is drinking 5-ALA, the fluid that will help surgeons see what tissue is tumorous as opposed to healthy, which for the record is a great invention that tastes absolutely horrific. Imagine drinking liquidated cardboard mixed with battery acid, because girl I was gagging.
Luckily I was first on the list for surgery which meant I didn’t need to be waiting around nervously, and I was fortunate enough to be wheeled down to the operating room with my Mum and Dad right behind me. The room was absolutely freezing, and I took my place on the bed shivering, likely a mixture of the temperature and the adrenaline kicking in as I was minutes away from the biggest moment of my life. I tried my best to stay calm, saying hello to the surgeons walking in and out of the room for preparation, as if these people weren’t actually going to have my life in their hands, but most of all seeing your neurosurgeon and there being this strange look between the both of you. I’m saying ‘Don’t fuck it up,’ and he’s saying ‘I’ve got this,’. That’s really the last I remember of pre-surgery, the anaesthetic going through your cannula always feels funny, and I’m only present for a few seconds and then I’m gone. Out of it. Talk later, Mum!
Recovery
Having been in recovery 3 times, not all of them were fun experiences. The first time from the biopsy I can scarcely remember, although seeing my parents either side of the bed was incredibly relieving, specifically seeing the box of cookies Dad had bought that were resting by my feet. I fell in and out of conscience, almost as if I was just going back off for a nap and waking up a little later. Recovery is full of a lot of questions, namely ‘What is your name? When is your birthday? What year is it? Where are you currently?’ while a light is shone in your eyes to check your pupils are with it. I remember smashing these questions, but there is a high chance I probably got them wrong when I first awoke, my parents informed me that they actually saw me twice in recovery, but I only remembered the second time. The first and third time I had a reaction to the anaesthetic, and I was sick in recovery, but that is a given most of the time. Although, the third time was made worse by the fact I still had my oxygen mask on, so you can imagine how that went. The second surgery however, recovery was absolute heaven. I was so high on morphine and steroids that I could not feel any pain, all I could feel were those lovely compression boots on my legs giving me a massage while I sat around living the dream. My nurses were all amazing, and I fancied my main recovery nurse, so I don’t think I stopped telling her how pretty I thought she was, and I distinctly remember talking about how her lunch break was and what she had to eat that day.
Post-Surgery
This part wasn’t so fun, as technically I’m still in it now. While I present as being back to normality the side effects of brain surgery really end up hitting you when you get to go home. My short term memory was, and still is, relatively poor to the point I forget what someone told me on the phone seconds before if I’m not careful. I can recall what has been spoken about, but there is no way I could quote what was said to me. After returning home my vocabulary was mediocre, I’d forget words mid-sentence and would have to stop to focus on what I was trying to say, and as someone who prided themselves on their language abilities and how I was able to write top grade literature essays, I was frustrated with myself at how much I was struggling. It was a defeating feeling. These side effects begin to fade with time, and I’ve come across a saying that for every hour you were under anaesthetic, it will take that many months to fully recover from the surgery. My numbers increased over time, so we’re looking at over 10 months, maybe landing around 16, which makes me feel alot better in my recovery. The fatigue from surgery, however, has stuck with me. I do take into account I’m also going through chemotherapy and I’ve gotten through a long journey including radiotherapy and egg preservation, so if anyone didn’t feel fatigued after that I think I’d be just as surprised.
While I may still be the same person after surgery, if not an improved person, there are still some changes people forget to take into account. At the grand age of 20 I should be out with friends, coming home at 3am and drinking my nights away at university, but I’m not. I can only walk so far without needing to sit down for a bit, I need a couple of extra minutes to comprehend what is going on, but I still get there in time. Mentally and physically I’m morphing into a grumpy old lady, but aren’t we all? What changed the most is I’m an open book now, and my emotions are raw and I’m prone to my feelings getting hurt very easily. In April, my therapist called it my ‘anxiety bucket’, and the stresses of treatment filled most of the bucket up, so by the time someone made a joke at my expense or didn’t meet up with me as planned, I’d have a meltdown. There comes a dependability on others, because you so desperately want to return back to normal. Perhaps this is something people don’t always understand, I’m sure it is no secret how horrifically my birthday celebrations went when only 5 people showed up. While I cried, and was heartbroken at the turnout, I had a good time with the people who understood what was happening and why they were so important to me. That will be a story for another post, but it is still important to understand that just because someone is out of the hospital bed, it does not mean that they are okay.
Perhaps I’m leaving this week on a more sombre note, but that is just where my writing took me this week. I do not wish to post a facade, I have nothing to hide and sometimes just talking things through with yourself can really be cathartic and get your head that little bit more controlled. Throughout my journey, I have found writing to have been an incredible help, whether it be writing as often as possible for my blog or even to writing my own poetry (perhaps I’ll publish an anthology, I could do with some royalties) I’ve been able to map my improvement and see how far I’ve really come. I can look back on how I felt, and know I got through it, and with an illness like this getting through it is all that matters.
So what is like really like to have brain surgery? Explaining my experiences in person is always interesting, you can see the shock in people’s eyes and the pure amazement they have for what modern medicine can do. Normality for me is having these surgeries, but isn’t really a normal thing to come across in everyday life when the scar isn’t on show. Luckily though, it will make a pretty great ice-breaker, so I always have that to look forward to. Having brain surgery is the biggest clusterfuck of emotions you’ll go through, on the one hand you know it is a major surgery (so much so, you’re feeling like you’re legally signing your death warrant when the consent forms come in) but actually going through the surgery just feels like any other, they put you to sleep the same way but you just spend a bit longer in recovery (for obvious reasons). So I decided to break it down, step by step, what having brain surgery really feels like.
Pre-Surgery
The nerves kicked in, I signed the consent form like you do with any surgery as the registrar explains all the possible complications. Death, stroke, loss of fluids, not being able to diagnose the tumour, all that fun stuff. In all honesty though, there is more danger in not getting the thing taken out of your head if it is operable than leaving it where it shouldn’t be. The normality of preparing for the surgery always struck me as odd, I was embarking on the biggest moment on my life and all I had to do was not eat after midnight. Preparation for surgery is a pretty constant thing whether you’re having your arm fixed or a tumour taken out. I woke up the morning of my surgery, had my shower and put on those stylish compression socks, hospital gown (that was definitely showing the ward my arse), and those strange knickers that look and feel like you’re wearing a loose shower hat to cover your dignity. The only part of preparation that isn’t common is drinking 5-ALA, the fluid that will help surgeons see what tissue is tumorous as opposed to healthy, which for the record is a great invention that tastes absolutely horrific. Imagine drinking liquidated cardboard mixed with battery acid, because girl I was gagging.
Luckily I was first on the list for surgery which meant I didn’t need to be waiting around nervously, and I was fortunate enough to be wheeled down to the operating room with my Mum and Dad right behind me. The room was absolutely freezing, and I took my place on the bed shivering, likely a mixture of the temperature and the adrenaline kicking in as I was minutes away from the biggest moment of my life. I tried my best to stay calm, saying hello to the surgeons walking in and out of the room for preparation, as if these people weren’t actually going to have my life in their hands, but most of all seeing your neurosurgeon and there being this strange look between the both of you. I’m saying ‘Don’t fuck it up,’ and he’s saying ‘I’ve got this,’. That’s really the last I remember of pre-surgery, the anaesthetic going through your cannula always feels funny, and I’m only present for a few seconds and then I’m gone. Out of it. Talk later, Mum!
Recovery
Having been in recovery 3 times, not all of them were fun experiences. The first time from the biopsy I can scarcely remember, although seeing my parents either side of the bed was incredibly relieving, specifically seeing the box of cookies Dad had bought that were resting by my feet. I fell in and out of conscience, almost as if I was just going back off for a nap and waking up a little later. Recovery is full of a lot of questions, namely ‘What is your name? When is your birthday? What year is it? Where are you currently?’ while a light is shone in your eyes to check your pupils are with it. I remember smashing these questions, but there is a high chance I probably got them wrong when I first awoke, my parents informed me that they actually saw me twice in recovery, but I only remembered the second time. The first and third time I had a reaction to the anaesthetic, and I was sick in recovery, but that is a given most of the time. Although, the third time was made worse by the fact I still had my oxygen mask on, so you can imagine how that went. The second surgery however, recovery was absolute heaven. I was so high on morphine and steroids that I could not feel any pain, all I could feel were those lovely compression boots on my legs giving me a massage while I sat around living the dream. My nurses were all amazing, and I fancied my main recovery nurse, so I don’t think I stopped telling her how pretty I thought she was, and I distinctly remember talking about how her lunch break was and what she had to eat that day.
Post-Surgery
This part wasn’t so fun, as technically I’m still in it now. While I present as being back to normality the side effects of brain surgery really end up hitting you when you get to go home. My short term memory was, and still is, relatively poor to the point I forget what someone told me on the phone seconds before if I’m not careful. I can recall what has been spoken about, but there is no way I could quote what was said to me. After returning home my vocabulary was mediocre, I’d forget words mid-sentence and would have to stop to focus on what I was trying to say, and as someone who prided themselves on their language abilities and how I was able to write top grade literature essays, I was frustrated with myself at how much I was struggling. It was a defeating feeling. These side effects begin to fade with time, and I’ve come across a saying that for every hour you were under anaesthetic, it will take that many months to fully recover from the surgery. My numbers increased over time, so we’re looking at over 10 months, maybe landing around 16, which makes me feel alot better in my recovery. The fatigue from surgery, however, has stuck with me. I do take into account I’m also going through chemotherapy and I’ve gotten through a long journey including radiotherapy and egg preservation, so if anyone didn’t feel fatigued after that I think I’d be just as surprised.
While I may still be the same person after surgery, if not an improved person, there are still some changes people forget to take into account. At the grand age of 20 I should be out with friends, coming home at 3am and drinking my nights away at university, but I’m not. I can only walk so far without needing to sit down for a bit, I need a couple of extra minutes to comprehend what is going on, but I still get there in time. Mentally and physically I’m morphing into a grumpy old lady, but aren’t we all? What changed the most is I’m an open book now, and my emotions are raw and I’m prone to my feelings getting hurt very easily. In April, my therapist called it my ‘anxiety bucket’, and the stresses of treatment filled most of the bucket up, so by the time someone made a joke at my expense or didn’t meet up with me as planned, I’d have a meltdown. There comes a dependability on others, because you so desperately want to return back to normal. Perhaps this is something people don’t always understand, I’m sure it is no secret how horrifically my birthday celebrations went when only 5 people showed up. While I cried, and was heartbroken at the turnout, I had a good time with the people who understood what was happening and why they were so important to me. That will be a story for another post, but it is still important to understand that just because someone is out of the hospital bed, it does not mean that they are okay.
Perhaps I’m leaving this week on a more sombre note, but that is just where my writing took me this week. I do not wish to post a facade, I have nothing to hide and sometimes just talking things through with yourself can really be cathartic and get your head that little bit more controlled. Throughout my journey, I have found writing to have been an incredible help, whether it be writing as often as possible for my blog or even to writing my own poetry (perhaps I’ll publish an anthology, I could do with some royalties) I’ve been able to map my improvement and see how far I’ve really come. I can look back on how I felt, and know I got through it, and with an illness like this getting through it is all that matters.
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