pippy longstocking Posted January 25, 2017 Share Posted January 25, 2017 That was lovely of them to do that . Well we both believe what will be , will be for a reason ...so although this is a massive blow I have an inkling suspicion this is for the good of you xx Link to comment
sara-pezzini Posted January 25, 2017 Author Share Posted January 25, 2017 Thank you cheet! And everyone! Agree pippy...i have that same feeling! It just had to be.... It was a massive blow this morning but now I'm okay. The only thing about it that's terrible is that i had a date set for a reason, so i could plan everything, now it will be unexpected and i have a hard time dealing with that as you know. Now everything was done and clean and stocked and laundry done, bed changed, house clean, i worked up to this moment..... My brother just let me know he will absolutely try to come the next time as well! Awww Link to comment
sara-pezzini Posted January 25, 2017 Author Share Posted January 25, 2017 I know it is crap but at the same time you really know who is there for you in bad times, all day long been getting such sweet reactions from everyone, my brother is trying very hard to still come the next time as well, my special guy has been messaging me non stop since he heard and very sweet messages at that. So it is heartwarming to see all this! Link to comment
pippy longstocking Posted January 26, 2017 Share Posted January 26, 2017 How you feeling today darling ? I hope at least the cold isn;t turning into anything nasty xx Link to comment
happyfrank Posted January 26, 2017 Share Posted January 26, 2017 I wish you the best. I hope your okay. Link to comment
Seraphim Posted January 26, 2017 Share Posted January 26, 2017 How is your cold today? Link to comment
sara-pezzini Posted January 26, 2017 Author Share Posted January 26, 2017 Thanks frank and evad! My cold is getting better but i think they wouldn't have done the surgery on me anyway. Too much snot, risk too big. So maybe they wouldn't even have admitted me yesterday or if they did, canceled the surgery this morning. Think that would have even been worse. So now i have no clue when it'll happen but my cold has a chance to clear up. I have however been completely exhausted today, maybe all the emotions of yesterday and working up to this moment for months, but i woke up very late and even since then can barely keep my eyes open and i drift off often. Guess i need it...... Link to comment
HeartGoesOn Posted January 26, 2017 Share Posted January 26, 2017 Thinking of you Sara, hang in there! Link to comment
sourhead Posted January 26, 2017 Share Posted January 26, 2017 Be "Hype" for the surgery!! Link to comment
pippy longstocking Posted January 27, 2017 Share Posted January 27, 2017 How are you doing sara darling ? Has your cold eased off xx Link to comment
sara-pezzini Posted January 27, 2017 Author Share Posted January 27, 2017 Yeah my cold is subsiding so i think when they call now it can happen! Been to work today to visit.....always nice to see certain people lol. Other than that I'm waiting.......annoying waiting! Link to comment
pippy longstocking Posted January 28, 2017 Share Posted January 28, 2017 Glad you are feeling better at any rate ..lets hope you get the call soon . Link to comment
Silverbirch Posted January 28, 2017 Share Posted January 28, 2017 You are in my thoughts Sara. All the best for you with the surgery. Xx Link to comment
Seraphim Posted January 28, 2017 Share Posted January 28, 2017 At least it will be ago this time when they call you . Link to comment
sara-pezzini Posted February 4, 2017 Author Share Posted February 4, 2017 I've been having extreme nightmares these past few nights about the surgery. Ugh! I wake up very upset and terrified and it even ruins my days. I suppose it's normal though i didn't have them before when it was actually almost happening...... They all revolve around something very personal and upsetting to me that i don't want to talk about but they are so extremely real.....ugh!!! If it had happened when it was supposed to it would have been over by now and i would have been home by now on my way to recovery. Now it's still ahead of me. That sucks! Link to comment
Eyebrows Posted February 5, 2017 Share Posted February 5, 2017 Just want to say. I had brain surgery in October for an arteriovenous malformation, which was quite risky due to it's location, but necessary due to it being very symptomatic and having previously bled twice. I'm four months removed from it and I'm still not feeling that amazing but if you have any questions about the recovery feel free to hit me up. Different conditions, but brain surgery nonetheless. It's the emotional and mental aspects that were harder for me. Not everybody understands. I wrote an article for my works magazine about it and all my friends have been supportive but some people don't quite understand or want to talk about it. I felt like I needed to write the article for two reasons. One, because I'm doing a walk for charity for The Butterfly AVM Charity in October and wanted to raise some awareness before asking for donation and two, because I spent a whole year since my diagnosis last January sitting at work crying my eyes out and nobody knew why! My AVM affected my personality a lot and it was hard reconciling that something in my brain was basically affecting who I was as a person. Sorry...this isn't meant to be about me. Just wanted you to know that I'm here if you need to chat and that there are people who understand. I actually came on here to post about the aftermath of my brain surgery and saw this thread at the top! Good luck! Link to comment
sara-pezzini Posted February 5, 2017 Author Share Posted February 5, 2017 Wow thank you that was helpful! Agree that not everyone understands even though they try, or they are scared of it. Even though my tumor is benign it is still a brain tumor and that is scary to me and also to those around me, in the beginning i had many people ask me how i am but that slows down you know, and there are those who know, but never ask me about it, think they are scared or don't know what to say. I think my tumor has changed me as well, i mean anything happening in your brain is bound to have an effect. Something that's 2.5cm is there that shouldn't be there, it changes you. When i first got the diagnosis i was numb for a very long time, someone at work who had a brain tumor years ago, warned me that it might change me and that it would also hit me hard later on, i didn't think he was right but he was. I'm sorry you went through that and i completely understand! Hope everything will be back to normal again for you, and for me, though I'm scared that it won't ever be as it used to be. I'm also just scared of the fact that they remove a piece of skull and go into the brain you know, surgeries don't scare me, brain surgery does, how was that for you? How long were you in the hospital? How did you find out what you had? I'm dizzy a lot, tired a lot, i have to sleep during the day although that is because of the meds and i hope to be able to get off them after this, which is why I'm doing this whole surgery in the first place. I also have a journal on here in the journal section in case you're interested, that is from the first day of diagnosis till now..... I'm gonna check out your thread now! Lol Again, thanks for this! Link to comment
Eyebrows Posted February 5, 2017 Share Posted February 5, 2017 Sometimes it's not even the physical issues itself but the emotional and mental aspects of it can definitely change you. Still, having something upstairs pressing against different parts of the brain can have an effect, personality-wise especially if it's in the frontal lobe. My AVM was a brain stem AVM so it had an effect on pretty much everything, but I also had some problems with the frontal lobe, not due to the bleed, but because of the reduced oxygen and some vascular steal issues. I was out of hospital in about a week, I wasn't too happy with that tbh, I felt like I was rushed through it but I've read later that it's usual to be out within a week if there are no complications during surgery. There is follow-up care but it was mostly given to other teams, psychological teams, then assessing my speech etc. I found my AVM because it became symptomatic which is quite lucky in a way. Most people don't find out they have one unless they get scans for other reasons. I had a lot of stress on at the time, in the other post I mentioned about my ex-girlfriend. While I had symptoms before our trip I seemed to get worse while we were on it, which could have been a coincidence but it was a VERY stressful situation for me. I had symptoms leading up to that bleed but never had a seizure. Came home and went to the Doctors and he referred me for the MRI. The meds made me really dizzy. If I hadn't had symptoms I'd not have got the surgery done either I don't think. It's hard to look at the risks but having a 'timebomb' in your head is scary! My friend had a brain tumor removed when he was in high school. You can only see his scar because his hair is receding. He did it in the summer holidays and I'm sure he was back at school not long after, I don't remember him being off for an extended period. It's funny, we do think about the superficial things too! You just have to own it. In a few months after the surgery you'll look just like your old self again so just remember that it's temporary. I know how you look isn't nearly as important as the operation and getting it sorted but it's still something that can affect your confidence so don't worry! I felt kinda numbed and so far removed from the process at that point because of the stuff that I posted about in the other thread that I wasn't scared. I honestly didn't care much anymore at that point. Healing takes time. That's the most important thing to remember. Don't get frustrated if you don't progress as quickly as you want after surgery. You'll get there in the end. There is a change in me from pre-surgery to post-surgery but that doesn't mean it's a bad thing. Again, some of those changes are emotional ones as something like this puts other things into perspective. I'll check out your journal! Link to comment
sara-pezzini Posted February 5, 2017 Author Share Posted February 5, 2017 I was very depressed last year and i really didn't care about living anymore but that was partly due to those meds.... Other than that i get annoyed if i hear people talking about small stuff and how much they get upset by tiny things. I am less patient than i was before. In the other hand the tumor also brought me a lot, i opened up more than i used to, I'm also very shy and talking to people is hard for me, even at work, but now everyone knows and i can talk to everyone there. Friendships deepened and i fell in love with a guy who has been there for me since day 1! I don't care at all about the scar or looks or any of that, so that isn't part of my fear.... But the fact that my brain is exposed and that there are complications possible that have great effects, and the fact that even the surgeon had not done this surgery more than once or twice, that is scary!! I think you were kind of obsessing so much over your ex to not have to deal with what was going on with your health, maybe? Cause that we can deal with and feel all our feelings over and then not have to deal with this super scary stuff..... Anyways it really sucks to have to deal with 2 of those terrible things at once! But now you're on the other side and can look forward! Link to comment
Eyebrows Posted February 5, 2017 Share Posted February 5, 2017 It wasn't just a way of deflecting. I guess there's something about this sort of thing that makes you want to tell people who were important to you how much they meant. After those claims when I was having the second bleed, bearing in mind it's made worse by stress/high blood pressure etc. At the time I didn't care about dying because I felt like the old me had died in Prague and Vienna. I did become close to a few other people and some of the people who stepped up were people who I never thought would. It's great that you found someone through the whole ordeal. It's scary to think about your brain being exposed. Makes me think of the scientist guy in Nightmare Before Christmas! But the methods and techniques are so sophisticated these days. I relate to the people complaining about little things, though. I find it hard to relate to people sometimes now, I'm just getting used to getting back into small-talk at work which mostly seems to be complaining! I'm shy too though you wouldn't have thought it back before I had the first bleed. I'd grown a lot and it was like being put back to square one. Link to comment
maccerz Posted February 7, 2017 Share Posted February 7, 2017 The very best of luck sara-pezzini! What a brave woman you are. I know I dont know you but you're very much in my thoughts xx Link to comment
sara-pezzini Posted February 14, 2017 Author Share Posted February 14, 2017 Well still no surgery. I called them today and turns out there were more surgeries postponed after me but those were more urgent, so those people go first. They don't know much but the surgeon's assistent went to talk to the surgical team for me to find out anything, because this uncertainty is driving me crazy. She managed to find out that they aspire to plan my surgery in for the 9th of March....this is not certain yet, just that before this date nothing will happen, that is certain. So another huge blow and i was pretty upset. It's taking so long! Was supposed to be January 26th, then it'd be over by now and I'd be healing... So this sucks big time! Had a very bad day yesterday, could barely form sentences, forgot everything, was so bad that even my mom who is used to it by now, was worried. And i could barely walk, was so dizzy! Today's a little better again..... Then again if i had had the surgery in January i probably wouldn't have had a date Saturday and wouldn't have gotten a sweet surprise from him yesterday! So maybe all is as it should be...... Link to comment
journeynow Posted February 16, 2017 Share Posted February 16, 2017 Aw, Sarah, sorry to hear you're still in limbo with the surgery. (Well, if there's a bright side, just think, they'll be that much more experienced if they do the other surgeries before yours. Right? You want them at their very best!) Link to comment
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