Monday marked 11 months since my
surgery! That's a crazy truth. During the last couple of weeks I have been playing the days, hours and minutes that I remember before I
went into surgery over in my head. I remember the fear, the hope, the uncertainty and
the love that was constantly around me. Why do we remember such days and experiences so vividly? I couldn't tell you what I ate for breakfast on Monday but I can tell you the conversation I had with the nurse as I was wheeled into the operating theatre 11 months ago. I remember looking at myself in the mirror after all of the bandaging had been removed and seeing how much hair I'd loss but don't remember what color lipstick I wore yesterday. I remember getting cranky with the nurses who wouldn't let me shut my curtain at night so they could keep an eye on the patient in the bed next to me but not what I gave my sister for her birthday last year. Now obviously the examples that I just listed of what I do remember and what I don't are comparing major vs minor situations and that's probably why I don't remember what my breakfast was, what lipstick I wore or what I got my sister for her birthday. I don't know what the scientific reasoning behind memory is but for now I'll just take the stand that I remember these rather big occurrences as reminders of the journey I'm going through and how far I've come in the last 11 months. I feel the next month will have me thinking a lot more about what happened and at the same time will be quite emotional especially as I am due to have another MRI and see the neurologist to see where things are in September.
In the last year or so I have read many a blog by others who have brain tumors and I have been able to relate in many ways to many of the stories I read. One thing I've found useful and reassuring, albeit in a weird way, was reading other peoples accounts on the highs and lows of being on Keppra and Lamotrigine to control seizures. For me they are a God send of a gift but also a downright pain in the arse. I said to mum a couple of months ago that I do not recall the last time I woke up feeling re-energized (even before surgery). These drugs are draining, I suppose their purpose is to literally slow my brain down from going into overdrive and that they are doing but they also slow me down overall, physically and mentally. When you read the associated risks that come with taking these drugs it's a bit daunting. I realise now that the side effects, mostly tiredness, that I experience when taking this medication are nothing in comparison to some other bloggers who are also on anti seizure medication and have literally had intense suicidal thoughts. However there are other possible side effects, that at this stage in my life I need not worry about but in the next 10 years they may be cause for concern. I constantly and honestly hope that the scientific world will sooner rather than later discover some magic pill that cures all of this stuff that's happening in my brain without the risk of nasty side effects but hey we're still waiting for hover-boards.
Sometimes I feel like this blog is a bit selfish and that's why I don't blog as much as I did a first. A lot of the other blogs I read by people with brain tumours are having a shit time and here I am just reminiscing on a rather successful surgery. I'm not good or in all honesty really interested in researching diets and genetics and sharing all about them and how they relate to this and that. I suppose I prefer to live a bit naively and try not to stress myself out. Time will tell whether or not that's a good thing. Even though I don't have all of this amazing knowledge to share I'm still hoping, almost wishing, that my blog serves a purpose. I think that purpose could be one of encouragement and every now and then reminding us to keep on going and not give up in a terrible situation. I don't know what this blog's actual purpose is, apart from reflecting on experiences, but if you're reading this and about to have brain surgery or have just been through it I hope there is something amongst all of my blabbering that helps you today or tomorrow.
In the last year or so I have read many a blog by others who have brain tumors and I have been able to relate in many ways to many of the stories I read. One thing I've found useful and reassuring, albeit in a weird way, was reading other peoples accounts on the highs and lows of being on Keppra and Lamotrigine to control seizures. For me they are a God send of a gift but also a downright pain in the arse. I said to mum a couple of months ago that I do not recall the last time I woke up feeling re-energized (even before surgery). These drugs are draining, I suppose their purpose is to literally slow my brain down from going into overdrive and that they are doing but they also slow me down overall, physically and mentally. When you read the associated risks that come with taking these drugs it's a bit daunting. I realise now that the side effects, mostly tiredness, that I experience when taking this medication are nothing in comparison to some other bloggers who are also on anti seizure medication and have literally had intense suicidal thoughts. However there are other possible side effects, that at this stage in my life I need not worry about but in the next 10 years they may be cause for concern. I constantly and honestly hope that the scientific world will sooner rather than later discover some magic pill that cures all of this stuff that's happening in my brain without the risk of nasty side effects but hey we're still waiting for hover-boards.
Sometimes I feel like this blog is a bit selfish and that's why I don't blog as much as I did a first. A lot of the other blogs I read by people with brain tumours are having a shit time and here I am just reminiscing on a rather successful surgery. I'm not good or in all honesty really interested in researching diets and genetics and sharing all about them and how they relate to this and that. I suppose I prefer to live a bit naively and try not to stress myself out. Time will tell whether or not that's a good thing. Even though I don't have all of this amazing knowledge to share I'm still hoping, almost wishing, that my blog serves a purpose. I think that purpose could be one of encouragement and every now and then reminding us to keep on going and not give up in a terrible situation. I don't know what this blog's actual purpose is, apart from reflecting on experiences, but if you're reading this and about to have brain surgery or have just been through it I hope there is something amongst all of my blabbering that helps you today or tomorrow.
If you've been following this blog you've probably realised that I'm a softy. I cried when I was listening
to a talkback program on the radio talking about the death of
Robin Williams and depression. Apart from the horrible way through which
he left this world, I didn't really understand at that moment why I was
so troubled by his passing. I suppose one of the reasons is that
throughout my life he has starred in movies that were some of my
childhood favorites and other movies of, one might say, real depth (Mrs.
Doubtfire, Good Will Hunting, Dead Poets Society, Jumanji, Aladdin,
Hook, Flubber, Patch Adams). However I think, once again, it just hit me
how life, and each day in it, is precious. Probably not the best day to
watch Patch Adams but this scene reminds me of certain medical professionals that I have encountered over the last few years, good and not so good ( also there's a couple of scenes throughout the movie that remind me of my time in hospital).
In other news, today is my birthday and I am now 27! I keep being reminded that it's just a number.
Hey Cass, Hello from across the seas! Just wanted to stop by and say wow 11 months (possibly nearly 12 now!) That time has passed so quickly and you have been such an amazing person to me to have known in that time. As I once said before on another post I think you are an incredibly brave and special lady. I remember seeing your posts before I was due surgery and you really gave me courage to think I can get through this too. Thank you xx
ReplyDeleteI make my 1 year post surgery on 23rd Oct- Cannot believe how quickly that time has gone but also I am looking forward to making that year and feel thankful for all the things that have taken care of themselves and for all the amazing people I have met including you.
I hope that you feel my posts about genes and/or diet etc are in bad taste- I don't post that much on that side as I feel it's a personal thing however I just feel I should let others know what I am doing at the present time and also I figure it could be of use to some as we were so lost in the early days especially the first hospital we were under- we had no clue. I completely respect your way of how you manage everything and I have to admit that sometimes I turn it all off and not look at too much (hence my slow down in posts too currently). I also feel guilt at times as I know I have been lucky to have a successful surgery and minor physical deficit (although the mental health side of things has been more challenging in ways) but I still feel we must be kind to ourselves as we still have the good and bad days and it's still a fear of the unknown too in ways but yes I agree it's hard to read about people having very bad times- I have friends locally through the group I attend who are going through some incredibly tough times with their BTs. I guess all we can do is keep supporting each other and that's the motivation behind my blog, reaching out and meeting others.
Well wishing you a very happy weekend (I think where you are you are closer to Saturday then we are as it's currently the mid morning here!).
With lots of love,
Gem xx
Whoops also forgot to say a Very Happy Birthday to you...and the video from Patch Adams- one of my all time favourite films- bless Robin Williams. xxx
DeleteHi Gem,
DeleteLovely to hear from you. I regularly check to see if you have posted anything. I hope you are well.
I don't think your posts about genes etc are in any way shape or form of bad taste. I really just wanted to post from my perspective and hope that it might help someone who is about to have surgery and feeling overloaded. I remember feeling completely confused by the whole diet, gene thing when I started reading other people's blogs but it is good that people are able to share what works for them. I did discuss diets with my Drs. and our discussions led me to handle post-op in a different way. I don't think there is a right or a wrong way, I think it's simply what works for you and one of the main thing that works for me is staying positive. The mental health part of the healing process has been the hardest part for me and the thought of trying different diets, researching this that and everything in between really freaks and stresses me out which in turn does not allow me to be positive. But like I said time will tell if I need to change things around but I'm just taking each day as it comes right now.
I hope you have had a lovely week and this weekend is a relaxing one for you.
Take care,
Cass xoxoxo
Hi Cass,
DeleteI've just checked the comment and added a new blog post :) Great to hear from you and I am so pleased that we are on the same wavelength with the blogs, as I said your blog was so comforting to me to read when I was awaiting surgery and I am so glad we have kept in touch. I think the approach of every day as it comes is the best way as each day is different- I see you have a new blog post too which looks fab so I am off to comment there now too! I'm commenting everywhere today!
Gem xx
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