Tuesday, December 16, 2014

3 years 10 months

I had so very much planned for this post but have since forgotten what any of it was. I should have written it down!

Most of my regulars and those who have read back will know that I post my monthly update on the 16th of each month because I got to have life 2.0 on February 16th 2011. You would also know that December 16th is not a particularly happy one as my mother passed away on December 16th 2007. Today marks seven years since my mother passed away from lung cancer.  This year I am going to hold back on the usual upset and pain that goes into this post. There has been enough this year.

On the brain tumour front, nothing happening, this is always good news. On the TBI front, there is a bit of an issue I am having with Event Cinemas. ‘The Hobbit’ will only be shown in 3D from December 27 to 31.Sound fabulous right? Wrong. People like me, who have vision problems cannot watch 3D movies, sometimes 3D glasses will not fit over prescription glasses, some people with brain injuries cannot watch 3D movies, some people with downs syndrome cannot watch 3D movies. Why am I upset? Only showing in 3D precludes people from seeing the movie in Advance screenings. Apparently they are only for ‘normal’ people.

It can be very easy to get bogged down in the negatives in life even when you are in life 2.0 and sometimes because you are in life 2.0. It is easy to fixate on things lost, things which have not returned and things that are seemingly unobtainable. I have been getting very bogged down in the negatives as they relate to me over Christmas. My mother died 2 weeks before Christmas. My eldest and youngest sons have never been able to have a whole Christmas day together. My step daughters have never been with us for Christmas, my eldest son hasn’t been here for Christmas since the Christmas he was 15, our unborn child will never see a Christmas, my Dad won’t be here for Christmas, I won’t be spending Christmas with my brothers. These are all things I have managed to get bogged down in and obsess about.

I am massively looking forward to going to my Husbands graduation for his Masters on Saturday!

To turn it around, I will have my amazing Husband and beautiful youngest son for Christmas. We will be spending Christmas day with friends with no stress or pressure. We will be going to my in laws on Boxing Day. My brother in law will be coming home with us and staying until New Year. My youngest son’s friends (our new apparently adopted children) will be coming around through that period to hang out and role play dungeons and dragons. 2015 is not far away and holds many adventures and surprises. I will still miss those who will not be here but I have something positive to look forward to and enjoy.

2015 does hold many adventure and surprises. I’d list some of them but I think you need to wait as well.

I am pretty exhausted right now so if I have forgotten anything, I will put up another post.

Stay well and safe through Christmas and New Year.

*Event Cinmas have now posted regular 2D showings

Wednesday, December 3, 2014

Brainaversaries/Brain Birthdays for those who don't 'get it'

There seems to be some confusion about my "Brain Birthday/Brainaversary"

This is not an annual attention seeking event. I understand that some people just won't understand.

This is my celebration of the life I have in credit. Long story short, if I had not had that brain surgery on February 16th 2011 I would absolutely be dead.

I think that celebrating the fact that I survived is worth it. It is a personal thing for me and I don't expect anyone else to behave any differently or 'join in'. I spent 8 years in excruciating pain which didn't ever actually stop. I was extremely ill and towards the end didn't get out of bed very much. If the temperature went over 29 degrees I really struggled. I dropped down to 70kgs. I missed a lot of my childrens childhood. I listened to them telling their friends 'oh we can't do that. Mum is sick' I spent a lot of time feeling that I was a burden and making life generally difficult for everyone.

Apart from having the tumour, it was shifting one half of my brain around. Even without blocking the CSF, the continued midline shift would have put me in a coma and death would have followed soon after. I have some extra fun things from the increase in intracranial pressure combined with the midline shift that my 'brain buddies' didn't have. One of them is partial deafness in my right ear.

The surgery took me from constant, unrelenting agony which I cannot compare to anything else or even try to describe, to no pain. Suddenly I was 'normal' and I could do all those things I hadn't been able to for the previous 8 years. To give you a tiny window in to it, I was in so much pain that I know I have significant pain now if my teeth are sore from clenching. Kim knows because I will start jiggling my foot or some other body part subconsciously.

There have been a number of things I have had to work very hard on since surgery. Movement, memory are just a couple of them. I would not change this, with all of its setbacks, hurdles and permanent damage and side effects for the alternative.

My Brain Birthday is very important to me. 

I would not have been able to spend that precious time with my Dad. I not have seen my son graduate from highschool. I would not have seen him turn 18. I would not have been able to plan that surprise party for Dads 70th. I would not have been here to see Kim achieve one of his lifes dreams. I would not have been here to see him graduate with his Masters.I would not have been here for Brendans wedding next year. There are so very many important things I would have missed.

I wouldn't be able to support those I do now who are going through the same thing I did.

I wouldn't have that cool party trick balancing things on my brain hole either!

Monday, December 1, 2014


I will be 4 years post op in February 2015.

My husband asked me why I celebrated each year. Was it something I expected other people to be involved with? I don’t really have any expectations. For me, the anniversary, brainaversary, brain birthday, is to celebrate another year in credit. It is the beginning of another year of being alive where I technically shouldn’t be. My tumour would have killed me. The intraoperative haemorrhage I had did kill me, it left me with some damage but I am still alive. For me it is a day worth celebrating.
I do wonder if perhaps it is time to stop, if it there will be a time to stop. When to I stop blogging. This was a blog about ‘Tracking my recovery from Brain Surgery February 2011’ When is the point to stop tracking? When does the recovery end?

There are a lot of things I don’t have answers for anymore. It used to be, do you want this or that and I couldn’t make a decision. I honestly had no preference or, I think possibly any concept of preference. No I can make decisions about some things and others I am caught completely flat footed. I haven’t ever thought about x so I don’t have an opinion. It is like asking a primary school kid for an opinion on using conjoint-measurement models to investigate a theory about probabilistic information processing.

The first anniversary we had a party to celebrate one year in credit

The second anniversary we went and took photos from sunrise to sunset

The third anniversary we took photos at dawn at the gold coast

This anniversary I will plant something.

Should I do my last few posts up until the 4th anniversary and then stop? Should I continue and share the lingering, possibly non resolving effects of brain surgery? Should I keep going to share living with an acquired brain injury? What about mental health issues. Should I perhaps start a whole other blog for those things or just stop all of it.

Life for me at this point is a great succession of unknowns and frustrations as well as anxiety, depression and grief.

Will I cope with Uni next year?
When will the sorting out of dad’s estate finish?
Should I just write Christmas off this year?
Why is my weight insane?
How much longer do I need to see a psychiatrist and psychologist?
What is ‘well’?
What will it be like to have my dad and I not share birthdays?
At what point do my brothers and my families just drift apart and stop seeing each other?

I can tell you that only having one of our five children around for Christmas hurts more than I can possibly explain
I can tell you that having not parents and no grandparents leaves me feeling completely lost
I can tell you that for the first time in almost…… almost 12 years (since diagnosis) the phrases ‘give up’, ‘quit’ and ‘stop fighting’ have crept into my vocabulary and that in itself is frightening to me.
I can tell you that for the first time since 1995 I have been suicidal and that scared me more than any brain tumour
I can tell you that I carry a world of guilt because I feel I have let myself down if I DO ‘give up’ ‘quit’ and ‘stop fighting’
I can tell you I hurt
I can tell you I am tired
I can tell you that sometimes everything feels like it too much.
I can tell you I have a panic attack if I have to telephone to make an appointment, especially for specialists
I can tell you that I am still claustrophobic and still need sedation for MRI’s
I can tell you I love my family with all my heart and soul
I can tell you I appreciate everyone in my life, those I have known forever and those I have met in passing
I can tell you I am paranoid about falling and hitting my head
I can tell you I have to watch my feet when I walk down stairs
I can tell you I know I am really tired when my left foot drags or my left arm won’t work
I can tell you my interest for photography is at an all-time low, as is my passion for music
I can tell you that not recognising people or being able to fit them in to a timeline or situation still breaks my heart
I can tell you I feel like a complete idiot for make this list.

Just to kick my own arse again I will stick in the two posts I made at two different points post op.

A month after surgery I wrote 
I tell you the same thing more than once, 
I forget who you are between games and life
I forget your Birthday, anniversary, wedding, other significant day
I forget to call you back, email you, and do something I said I would do or just do it later than I said I would do something that upsets you

Please let me know, and please try to remember that I have had brain surgery. My memory is a bit all over the place. I forget things, if/when I remember things later I then try to make up for what I have forgotten, some things I just don't remember at all. It isn't an excuse; it's just the way things are. I am hoping that things will continue to improve and with it my memory. Kim tells me it was worse before and that I am just become more aware of the holes now. It is very frustrating.

I hope you will understand

6 and a half month post op I wrote the following: 

I'm now 6 and a half months post op roughly. My memory is improving. There are still some gaping holes and things that are just not there. More recently I went to an event and there were people there I could not remember. I recognised some but could not remember names or matched up incorrect names. Others I thought looked familiar and wrote off to looking like someone else when in fact they were people I had known for many years. I found it VERY upsetting and disturbing. I am feeling much better than I have in a long time but I am still not "better". Please forgive me if I am still not up to speed and please let me know if I have forgotten something I was supposed to be doing. I'm enjoying my new life :) 

After that event, if I met someone I was supposed to know and didn't have memory of them I would say 

"It is lovely to meet you again. Please don't be offended that I don't remember who you are, I had brain surgery and my memory was damaged"

And finally something I think maybe I need to re-read


I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love, your wounded brain

Given to Shelly Malady Chema by her physical therapy team at Sutter Memorial Hospital the day she left the hospital.