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AA042261 380x380 I need surgery and nobody knows what to say...

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by HANNAH BLACKISTON

I am about to go through brain surgery, it’s a fairly simple 3 hour procedure to fix a serious nerve disorder I have. I mainly kept the whole disorder, which I have been suffering from for over a year, under wraps.

It’s quite a rare disorder and I find it’s hard to explain it with people without several diagrams and a medical dictionary. However I am about to disappear for 4 week and word has gotten out, which has in turn has led to some interesting questions.

I need to get one thing straight, I am not dying. There is a tiny chance that I might die during this operation. That’s not to say I’m not scared, I challenge anyone who is having their skull opened up to not hold some reservations but I don’t see the point in worrying. I don’t really have an option here, so why go in to it scared? What scares me more than the operation itself is telling people about it.

When a person is suffering from a terminal illness generally people don’t mention the fact they are dying. There is no reason to remind someone of that fact when they are probably very aware of it. You ask them how they are feeling, how the treatment is going; you stay away from subjects such as fear and dying. This is why it amazes me so how brazen people can be when it comes to asking me about my fears.

Hannah Pic I need surgery and nobody knows what to say...

Hannah

One of my partner’s friends found out about my surgery from another friend of ours the other day. To begin with, the friend that told her doesn’t have the strongest grip on understanding my condition (she constantly asks me if it’s gone away yet, despite my telling her every time it’s like an adopted puppy – not just for Christmas) so I shudder to imagine the conversation.

The next time I saw friend #2 she ran up to me and said - “I heard about your surgery! Are you scared? Because it’s … brain surgery. You could die.”

Oh, sorry. I forgot all about your background in neurosurgery. I also forgot that as soon as my brain is the thing being operated on that automatically gave me a one way ticket to dying. After I had assured her it was very unlikely I was going to die, and I told her that the surgeon who would be doing the surgery does them pretty much daily, she grabbed my hands gravely and said - “You’re being so brave. I just really hope you don’t die.”

Statements like that are the reason I have been holding back from telling anyone. I completely understand that she was only trying to be sympathetic. But if someone had told me this was happening to them, I like to think I would have been able to hold my tongue.

It’s not just friends who have made these comments either, co-workers have slipped into judging my condition as “terribly sad”, and even my GP gave their condolences. I am usually the first to suck up the sympathy. I have been known to be rather over dramatic. But this forced mortality is beginning to grate on me. The more people that seem sure I’m going to end up a vegetable; the more I am beginning to wonder if they know something I don’t. Perhaps I missed the memo.

All this was until I met my surgeon. God bless surgeons. Everyone told me leading up to meeting him that surgeons are arrogant and generally over-entitled wankers. I was apprehensive; I wanted to like the man who was going to spend some time inside my skull. Then I met him. My surgeon is a god; I am completely willing to say that. He was calm, he was collected and he offered to be there every day I was in hospital.

He took my questions (even the ridiculous such as “are you sure I will be asleep during the operation”) in his stride, covered the possible issues (death, paralysed face muscles, loss of hearing) quickly and calmly and assured me nothing has ever gone wrong in an operation he’s done. I felt calm, I felt under control and I felt like I was going to make it through this just fine.

So now when people come up to me and ask me if I’m going to die, I can calmly say “no, I will be just fine”. Or sometimes I fake bursting into tears. Just to teach them a lesson.

Hannah Blackiston is a fashion copywriter and finds herself hilarious. You can read her amusing life stories/opinionated rants at www.vivalafancy.com.

How do you respond when a friend or family members tells you that they’re unwell?

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46 Comments so far

  1. Justin Bieber Supra

    Interesting articles on information like this is a great find. It

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  2. BB

    I hear you. Had a head surgery (back of neck and base of brain) many years ago and to this day, people go into shock when you mention those two words “brain surgery”. No, I am not brain damaged now. No, I have no paralysis. My hearing even works fine! It’s a much-misunderstood, often-overdramatized thing.

    I wish you all the best with it – and remember to treat it like any other surgery: positively ready to recover!!
    :-)
    BB

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  3. jordan pas cher

    I love the way you wrote this article. This is wonderful. I do hope you intend to write more of these types of articles. Thank you for this interesting content! jordan pas cher

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  4. Synapse

    This coming week is brain injury awareness week (August 13-19) and to show your support for the 1.6 million Aussies with acquired brain injury (like beautiful Hannah) visit http://www.BangOnABeanie.com.au

    All the best Hannah! xx

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  5. Diamond

    I have just had surgery and when people responded with things such as you must be nervous or scared I said why, I am not performing the surgery. It always stopped the morbid conversations.

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  6. sparkie

    All the best with surgery and post op. Once you have the operation and are on the road to recovery I think alot of these comments will stop. I dont have advice what to do about them now, it’s impossible to stop /censor people’s reactions.

    Good luck

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    • sparkie

      Could someone please tell me why I have these edit and delete circles at the end of my comments?

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      • Faybian

        So you can edit your comment, or delete it if you wish.

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        • sparkie

          thanks for your reply but why dont they disappear , cant see them on anyone elses . sorry this sounds like school

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          • theoriginalpinny

            you can’t see them on anyone elses because you can’t edit or delete their comments – only your own. I used to be a teacher, there are no stupid questions.

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  7. Kristine

    I too underwent brain surgery for a rare nerve disorder – twice. The first time the surgeon stuffed up and to make matters even worse, I contracted bacterial meningitis from the surgery. One of the most prominent Sydney hospitals – I don’t want to scare you, the likely hood is slim to none but of course I defied the odds and contracted it. I won’t bore you with the story but,

    I was only saying to my friend the other day that I wish I had have had cancer. Please don’t take this the wrong way. The reasoning was that people who are sick with cancer seem to get a whole lot of support, people understand their illness. There is so much to be said for that support. So much.

    When you have a rare illness, you not only have to deal with being so incredibly sick, you have to deal with trying to justify why you are so sick (and people become skeptics) and you have to deal with everyone’s reactions around it. It’s enough to have to deal with your illness which is impacting every area of your life, let alone the emotional fallout from those around you.

    I lost friends, largely because they didn’t know how to deal with me any more. Brain surgery and the symptoms of the illness make it incredibly difficult for you to communicate with anyone effectively. I remember being at home after my last surgery and trying to recover, only to hear from my husband that my in-laws effectively had their noses out of joint because I was not answering their calls to my mobile…… I couldn’t see out of one eye yet, was wearing an eye patch and still couldn’t get to the bathroom unassisted. Answering my phone was the last thing on my mind. It’s no wonder I lost so many friends through the 2 year ordeal when my own in-laws couldn’t even wrap their heads around it.

    That’s why I say I wish I had have had cancer. Everyone knows how to deal with that, how to respond. I have watched a girlfriend go through a journey as a result of breast cancer and I have been interested to see how so many people come forward and want to run marathons on her behalf, donate to her fund raising page, sit with her through chemo……. And here I was, having had my skull split open twice, nearly dying from meningitis and a lot of friends, let alone my own family couldn’t reach within themselves to understand what I was going through.

    Thanks for raising a topic that is quite raw for me still. I wish you a speedy recovery and if I can offer any advice, please make sure you arrange a support team to surround you in the recovery process. When you reach out to your people, don’t take responsibility for their reactions, just focus on you and let them deal with themselves.

    x

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    • Anonymous

      Sorry couldn’t read beyond the first couple of lines… “I too had brain surgery for rare disorder, twice, surgeon stuffed up!’ Really?!?!? Aren’t these the kind of comments Hannah was hoping to avoid? I’m sure the rest of the story went on to be positive & encouraging but…

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  8. Scarlett Harris

    Is your surgeon McDreamy? They sound awfully similar…

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  9. Bradley

    When we found out that my late FIL had cancer, I immediately wanted to know what the doctor had told him what we all could do to make him feel comfortable.

    I knew that my FIL would get upset if we walked around on eggshells, never mentioning the “C” word.

    I’d like to think that we enjoyed having him around for a few extra months because we treated him as if he wasn’t seriously ill. As I say, it was important that he told us how to behave in order for him to feel comfortable. With him comfortable, we were comfortable.

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  10. timelady

    Good luck with recovery. Hoe all goes utterly smoothly with op and moreover, post op:)

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  11. Melanie

    Go Hannah! So refreshing to hear your thoughts, I am so going to borrow your puppy line.
    My daughter had two brain surgeries last year, our surgeon was a woman and I still refer to her as the miracle maker for the incredible changes in our little girl. To me she is GOD!
    Good luck with the opp and make sure you stock up on a few bandanas and wide hair-bands for the crazy hair days post surgery!

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  12. Leanne

    7 days ago I had my 2nd surgery to remove a malignant tumour in my spinal cord in the last 12 months. My new line of whether those I know are friends or acquaintance is very clear. Friends swore/got angry in their various forms, acquaintances offered platitudes, “you were strong last year you can do it again” and similar. And of course there were the very obvious heads in the sand kind of people too!

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    • Beckala

      Real friends don’t need platitudes!!

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  13. Mosswood

    You’re awesome Hannah. So is your surgeon by the sounds of it.

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  14. Anonymous

    Hey Hannah, I have a rare chronic illness which has required me to have brain surgery in the past and most likely again in the future – I’m totally feeling your post, especially the responses from friends.

    I’ve actually cut a lot of friends out of my life because their line of thinking was really dismissive and toxic in regards to my healing process. Lots of thinking along the lines of brain surgery equals death, oh but you’re fine now because you had the surgery, you don’t look sick, etc. A former best friend decided to tell me that the solution to my repeated hospitalisations was to get out more (like it’s so easy to do that when you’re vomiting whenever you move your head?) and even mocked and laughed about me with a bunch of friends above my bedroom when I had one of my flares.

    I don’t know why some people see things as either dead or alive, and nothing in between, no spectrum. Perhaps it makes it easier for them to deal with their mortality and illness issues?

    PS – Re: neurosurgeons. I don’t mind that some of them don’t have the best bedside manner, or are cold and aloof. They’re slicing into people’s brains. I think it makes perfect sense that they might want to be detached and not completely emotionally invested in the patient.

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    • Beckala

      I can definitely relate. I was hospitalised after nearly dying thanks to some medical malpractice ( misdiagnosed stomach ulcer led to burst stomach artery) and one of my so-called friends was, to put it nicely, an insensitive cow. (although I feel I am insulting cows with that comparison ). I had just been brought out of an induced coma with my stomach basically having been gutted like a fish by my surgeon to save my life – something like 3 minutes was the difference between life and death. She decided to “cheer me up”, to send me a message stating “well you know you have to hurry up and get better, you promised you’d help me plan my wedding, this couldn’t have happened at a worse time.” I don’t know if she really realised how utterly offensive she was being. She just honestly believed that the entire world needed to stop because she was planning her wedding. Unfortunately this wasn’t a one-off. While I was in hospital, she kept sending messages wanting to know why I wasn’t going to her hen’s night. I went to her bridal shower a few days out of hospital, she got upset that I left early – and her mother told me off for leaving before she opened her presents – I was in excruciating pain for crying out loud! My stomach still had a few staples in it!! It was my 30th birthday not long after, all I wanted to do was have a dinner out with my friends. She said that they were doing wedding planning on that night and basically told me and them (4 of them) that they couldn’t come to my birthday dinner. I don’t know why. I’m not sure if it was because she couldn’t deal with me being so close to death – after
      It happened she never bothered saying anything meaningful or even make an attempt to acknowledge it – it was like total denial.

      Fortunately she was only one. I had amazing support from other people. It’s just a shame I was so rude as to not plan my near death experience for a more convenient time ;-)

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  15. Faybian

    I know what to say. Good luck. Having your skull cracked open and having your brain fiddled with is a big thing to deal with. You can’t live without your brain after all.
    I too have had brain surgery (for a different reason) twice and lived through it. It takes time to get over it, so use it as a good excuse to relax. Oh and if you need sleeping tablets/relaxants to cope, take them and make sure they give you a good pre op too.

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  16. Dulcie

    Great piece Hannah, beautifully written, Thankyou. You’ll be just fine xxx

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  17. Anonymous

    Good luck Hannah, it sounds like you are in good hands. My son had to have open heart surgery when he was 4 and we found his surgeon to be wonderful as well. We are lucky to live in a country where we can get the best medical care:)

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  18. Kathy

    Sometimes there’s nothing to say anything – just give the 3 Hs:
    Hmm, Hug and Hang Around

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  19. Kate

    Hannah, I hope it all goes well- your Dr sounds amazing and that along with your supportive partner will make all the difference to your recovery x

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  20. Nat G

    Hi Hannah,

    I have not gone through what you are currently, but I am still experiencing it due to my mothers series of brain surgeries she’s been having.

    Over the last 11 years she has had, wait for it, 47 brain tumours removed, all of them benign, as well as a series of complications which have lead to surgery to implant various shunts, remove her skull, insert new artificial skulls and lumber drains etc. 18 surgical procedures… 12 in the last 11 months where she has been in hospital the whole time. It has been a exhausting and eye opening experience and no one around me/my family seems to know how to deal with it or what to say.

    I completely understand that. People have said to me more than i’d like to admit ” Why don’t you just let her go?’ with a sincere face that is almost shocking. “BECAUSE SHE’S NOT DYING YOU IDIOTS” I want to yell!!!

    But regardless of my frustrations, I’ve got to the point where I just preface every query they make with a ‘there no right thing to say.. this is just how it is and we’re all dealing with it’.

    So though I don’t know you, I say this. Darling, you will be FINE!!! Neurosurgeons are phenomenal these days, recovery in incredible and if my 68 year old mother can do it I have no doubt you will be fine. You have every right to be sh*t scared and angry and cry and have days where you feel like you have nothing to offer – and I hope like hell you have a few good people around you who can listen without feeling the need to give advice.

    Finally, I’ll be thinking of you, and also, how ace you’re gonna be feeling come summer.

    Stay strong lady!!! One day at a time….It’ll all be over soon. xxx

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  21. jamilarizvi

    Such a great post Hannah. You really made me think. Hope all goes really smoothly for you and you’re fighting fit again in not time. Xxx

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  22. Ros

    Hi Hannah, I hope it all goes well.
    I had brain surgery when I was 10 years old (all very successful) I do get some really ott reactions from some people when it comes up. Like that is the most amazing thing ever I can’t believe you are ok. Then if I feel like freaking them out more, I show them my scar (which is in my hair).
    Hope it goes well and you get a brag worthy scar too :)

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  23. Kat

    I’m so glad I am not the only one who gets this! I have a medical condition that is chronic but in no way terminal – yet in the same week I had two colleagues ask if my illness could shorten my life. Oh, and did I mention I am in my mid-20s? And that both of these people are scientists? It is really horrible.

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    • Kate

      I have a similarly chronic condition, but as it’s not visible (I am constantly tempted to get some sort of cast, carry a cane or just hang a sign around my neck) people just don’t get it; it’s amazing how blunt and thoughtless people can be Hannah! I’m also mid-20s and it makes me even less likely to venture out of the house knowing that people are either confused or dismissive-the worst is when people “share”, like telling you “oh I have a friend whose life was ruined by something similar”, or “right, I also get bad headaches/back pain/period pain” etc. It’s just easier to not say anything much most of the time!

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      • Kat

        I’m also in the invisible illness club. I have had to tell people I work with because of the time I have to take off for treatment. I do like that people can know me before they know about and define me by my illness.

        And I have to say, for every negative response there is someone who will amaze you. My treatments currently consume all of my sick leave, but I just found out today that my supervisor spoke to his boss and they will work with HR to find the best way for me to access more leave. It is not something I asked for, but he realised it is stressful to not have sick leave left when you are sick.

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  24. MJ

    I think when something serious happens the upside is that you find out who people really are, and who your real friends are.
    The ones who are there for you and make it about you not them are the keepers!

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  25. Anna

    There are some situations that are completely out of our hands, and this is one of them. So you’re right to say there is no point in worrying, natural though it is. Trust that all will be just fine – odds are that it will be! I hope you get the fix you are after, and a smooth recovery. I hope he wont be able to see all you’re secrets while he’s in there ;)

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  26. vivacious

    On the way to have my wisdom teeth out, my mother decided to tell me the terrible time she had and that other people had with the same procedure. Not helpful. Sometimes I think that when people hear news that scares them, the self censorship button gets forgotten. All their fears, misconceptions and worries just come bubbling to the surface. As awful as it is for you, it is probably only because they care about you that they are coming out with their honest fears for you.

    Good luck. I’m sure with the attitude you have, you will be fine.

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    • vivacious

      Oh I just wanted to add, I wasn’t trying to compare wisdom teeth to brain surgery, just illustrate the point that when it comes to medical stuff people always like to talk doom and gloom.

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    • Anon

      Vivacious, I completely agree with your point. I have a beautiful 4 month old baby boy but during my pregnancy everyone wanted to tell me about their birth horror story. Even people who haven’t given birth (men included) reminded me of what a terrible ordeal I had ahead of me. The reality was nowhere near as traumatic.

      Hannah, I’m not saying child birth is comparable to brain surgery but i’m just sharing in the point that people are often insensitive when commenting on other people’s situations.

      Keep that fantastic positive attitude (overcoming fear is half the battle) and all the very best of luck xxx

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      • Innocencelost

        Ha! I have a 3 month old and the same thing happened to me. My MIL even helpfully informed that the pain of childbirth was like 20 bones fracturing simultaneously like, a week out from my due date! Then I really did have the worst possible birth but I generally lie to expectant mothers and tell them it was fine, which is a little dishonest but I found fear made everything worse…

        Which brings me to my actual point. Hannah, good luck. Please dont let the toxic individuals freak you out because fear is a terrible thing. I have the utmost faith that you will be fine and I wish you a smooth and speedy recovery :)

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  27. Petal

    Good on you Lauren. I like your comment about surgeons being wankers. I work for one. I walked past his office once while the waiting room was full of patients and he was on the Qantas website organising flights. Another time he came in an hour late with a red face carrying his gym bag. I could go on.

    If I found out a friend was facing that surgery, I would send a simple text to say I was thinking of her then take a casserole around the night she was discharged. Simple but effective, I think.

    Good luck with it all. Please let us know how it went.

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    • Faybian

      The casserole is a great idea. My first surgery, everyone was pretty shell shocked still because it was emergency surgery and I took a long time to get better. My colleagues make a fantastic effort and cooked us meals for 3 months, until I could start cooking again. It was very much appreciated.

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  28. Mug

    Good luck with the operation. It sounds like friend #2 needs a bit of brain surgery herself :O) Take care xox

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  29. Angelina Ballerina

    Best of luck.
    While I was with my ex he had brain surgery twice.
    This may sound weird but it really wasn’t a big deal. The most traumatic part was the shaved patch on his head.
    I hope you find brain surgery as uneventful as we did and have an easy recovery.

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  30. theoriginalpinny

    Good Luck Hannah.
    Any type of surgery has its dangers and this needs to be acknowledged. You seem comfortable and aware of what you’re about to face. I wish you all the best.
    And as for surgeons being arrogant – they have to be. Look at what they do and do so well.

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  31. Sara

    Best of luck to you Hannah. I look forward to reading your next post after your surgery and hearing how it all went.

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  32. ally

    Best of luck and wonderful to hear that you have a great surgeon. Your friends sound like idiots, though

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