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

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!

Conflicted

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 4^th 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 

IF 

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

Hello,

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.

3 years 9 months

Links
Biomed Link 2014, Melbourne, Mental Health, medication induced suicidal thoughts, Acquired Brain Injury

3 years 8 months

It is early...... 

Today, October 15^th, is pregnancy and infant loss remembrance day. Kim and I have experienced this heart breaking situation. Our beautiful little girl Violet would have been 4 years and 8 months old this month. I have imagined what she would look like. Going by our 4 other children she would have been blonde with big blue eyes.  

James when he was about 4

 This is going to sound really odd and perhaps heartless. In the end it was probably for the best. I was very sick with my brain tumour and getting worse. There are a number of different ways this could have played out.

1. I stayed on the medication and she was seriously affected. It would be heart breaking but we would do what we could.
2. I came off medication and neither of us survived. Kim would have lost his wife and his daughter. He would have a teenaged boy without a mother and missing a sister.
3. I came off medication and I didn’t survive. Kim would have a baby daughter and a teenaged son without a mother and he would be without his wife.
4. We both survived and I then went on to have brain surgery leaving Kim with an 11 month old daughter to care for while I recovered.
5. We both survived and I then went on to have brain surgery and didn’t survive it, leaving Kim with an 11 month old daughter etc.
6. We both survived and I then went on to have brain surgery and was profoundly brain damaged, leaving Kim with all of us to look after.

We would have done whatever it took and given it our very best. That was taken out of our hands. We now have each other and our family and miss our little girl.

Thank you Kim Sinclair

I am battling depression. A number of events have caused a knock on effect leaving me in my current state. Depression is an ugly beast and has a massive effect. I am having an awful lot of trouble trying to find the motivation to do much. I am getting things done but it is very much an uphill battle. I was going to head over to Dads house and start scanning slides, negatives, historical family paperwork and photographs. It is something I am looking forward to. I hope that I can possibly put some more pieces together and remember some more of my history. I want to wade through that richness, life and history documented there. I can’t seem to get myself over there. I plan it all out, I will get there early and work my way through while I shred that mountain of paperwork that was left to be done after our clean-up of the filing cabinet. I can sit around doing that, grab the mail, pay any bills, stop for lunch and then keep going til the last bus or alternately walk home. So far I have managed to get up late. I have sat around in my pyjamas. I have found any number of reasons not to go and do it.

Along with that, I am looking at the courses I am doing at the moment and either putting them off or thinking about bailing on them altogether. It feels like it is too big, too hard and I am not smart enough to understand what I am doing. Depression really rips your self-confidence to shreds and takes the wind out of your sails. I am feeling like I have slipped backwards a long way in my recovery. I probably haven’t even a little tiny bit, but I feel like I have. Basically it sucks and it hurts.

I went through a step by step illustrated explanation of the things that were done during my surgery (and now can’t find it). It started with being hooked up to the respirator and ended with being sent to recovery. It was a real eye opener. I’m pretty sure you won’t want me to go in to graphic detail. It does however explain a lot of things that confused me. I had a couple of sore spots on the back of my head, a black sharpie mark in my hair line in the middle of my forehead and a bit of a dent further down from there. Turns out it was from this awesome device. It looks like it has come out of a torture room. It is called a three-pin Mayfield skull clamp.

Along with this nifty gadget and it’s after effects. I now know why I have a section of nerves on my scalp which feel like that creeping gooseflesh feeling. They are so ‘jangly’ that sometimes my hair moving in a breeze or touching my head in that area will feel hideous. When Kim was shaving my head (with the razor) it felt like that part of my head was badly bruised and that he was cutting my skin.

I was about to apologise for being so miserable with this post. Truth is, life isn’t always fun and games. I have an awful lot to be thankful for, I’m just in a really sucky place at the moment.

Be kind to each other.

Grand Adventure Part 6 Day 8

A quiet morning of lazing around generally being sloth like. Then packing upt of the gear and headed to the airport. Said goodbye to Rick and Loni and then popped on my plane for home

Kim and James scared the bejebus out of me at the airport. Gee I missed them... Then off to Grill'd for dinner before heading home. A little bit of gift exchanging, mail opening and chatting. Now it is past my bedtime. We are well into pumpkin o'clock.

This is the end of the Grand Adventure. There will be another smaller one in November!

Grand Adventure Part 6 Day 7

Started out with a beautiful breakfast at Three Rosettas. George and his family are wonderful!

The rest of the day was spent on the couch and packing things up a bit. I head home tomorrow night.

I am very much looking forward to being with my boys and catching up with all the 'Mummy Cuddles' James has been missing. I'll be planning my return trip to Melbourne for BioMed Link 2014 in November.

Tomorrow is the last day of this adventure. I hope you have enjoyed it, I certainly have.

Grand Adventure Part 6 Day 6

I frocked up.

Yes really I frocked up. that wasn't and auto correct. I wore a frock. I bought a beautiful new frock before I headed to Melbourne and wore it for the first time When Al and Steve picked me up from the hotel. I fell in love with it when I walked into the shop and tried it on. It was a little large but it was the smallest they had (NOT a size 8). I talked myself into buying even though I don't normally 'do' dresses. I took it in a bit to fix the sizing issue. Anyway it has become known as the dress. I wore it today!

I met with the lovely Paul Snedden for lunch and talked so much I kept forgetting to eat. I then hung out in Hyde Park for a while until I saw Markham Lane and spent some time with him. After that. I jumped on a train to go and have dinner with Loni, Rick and another friend.

This may seem a little insignificant however the thing to remember here is that I have to have things planned out and my transport known inside out or I panic. I managed the ferry, a bus and two unexpected train trips without wigging out. I am mighty proud of myself for that achievement all by itself. For me it is a pretty big deal.

Fast forward to this evening where I read a post on a Uni forum asking if anyone in the biomed programme knew a beautiful model who has recently been to The Oscars and the Golden Globes. She studies at Griffith. She was in a bunch of my courses last semester and it a truly lovely woman. So I guess that not only have I had a brush with fame, I have studied chatted with and hugged it.

Image borrowed from news article

http://www.couriermail.com.au/questnews/west/brisbane-model-tells-tales-from-oscars/story-fn8m0u4y-1226590124937

Grand Adventure Part 6 Day 5

Having had my plans go a little sideways, I got some washing done and sent off some mail. I decided to head in to the rocks and have a wander around.

In the ferry on the way to Circular Quay I decided I would do the pylon 'climb'. I walked to the first pylon on the Sydney Harbour Bridge and climbed the 200 stairs to the top. From there you have a pretty good view of everything. I took some pictures (on my phone) of the bridge and the bridge climb area. I went back down the 200 stairs and walked across the bridge to the second pylon, turned around and walked back to Circular Quay.

There are a number of things I have seen in Sydney that I find a little disturbing. 10-12 Police cars along George Street. 12 Security guards on the bridge. Last but not least, the security seal tape on every possible opening on the ferry.

Tomorrow sees a lunch with Paul Snedden and I believe I may wear a frock. Yes, I own one. Yes, I brought it with me. Al loves it.

Grand Adventure Part 6, Day 4

Today was pretty quiet. Just elfing and pondering and arranging the rest of my week. I was going to upload some footage onto YouTube but haven't managed to do that yet. When I do I will post it.

I spent some time today recovering from the climb. My feet were a bit sore :)

I made dinner for Rick and Loni. Chicken breasts wrapped in bacon with swiss cheese melted on top, baby capsicum stuffed with havarti cheese and a salad:

4 types of greenery
Snow peas
Avocado
Cherry tomatoes
3 different colours capsicum

Grand Adventure Part 6 Day 3

I have been very lazy and not posted yesterdays update. Mostly because I was exhausted and didn't get in until after 10.

I had a pretty quiet and restful morning. In the afternoon I headed in to the city and wandered around for a few hours before heading off to the Sydney Harbour Bridge Climb. It was very very very hot. So hot in fact that we had to strip off and just ear our undies under the climb suits. It was 32 degrees at the top of the bridge at 5 in the afternoon/evening.

Our group of 14 headed out onto and up the Bridge at 5pm. we did the climb stopping every so often to look at the amazing view. Our guide Daniel was fabulous with his humour and his information about the bridge and various parts of Sydney (some of it not so politically correct) It was crazy windy as we reached the summit. The young girl in front of me looked like she was about to blow away! After the incredible experience we returned to the base at about 8:45. It was a big evening with some lovely people and an indescribably awesome experience

I wandered back 'home' and got in a bit after 10. Time for sleeps

Grand Adventure Part 6 Day 2

A fairly quiet day. Mostly 'Elfing'

Elfing is something I do a bit and has become a tradition in Sydney with my friends Rick and Loni. While they are at work I will clean, iron, cook, etc What ever I feel like doing. Yes really I do like doing housework, especially for other people.

Today's Elfing consisted of:
Ironing
Cleaning the kitchen
Dishes
Fish feeding
Grocery shopping

I became a house elf because Kim asked them to give me a piece of clothing so I could come home

So, Elfing occurred. I had one of my famous 'Sydney' phone calls. This one was fairly benign. In the shopping centre, a customer satisfaction call from the spa Al and I went to last week. It was brilliant by the way.

This evening I had the very great honour of seeing Loni pole dancing, Yes really. The off to pick up dinner from Zeus.

Relatively quiet day.

Tomorrow night is the bridge climb!

Grand Adventure Part 6 Day 1

Lovely morning!

We started off with a lovely walk at Lapstone hill to see the Lapstone Zig Zag.  The site of the Lucasville station. Spike had a jolly good time at the lookout.

Breakfast at the Crusty Loaf at Blaxland. I had the most amazing spinach and feta roll. The off to visit the resting place of Sir Henry Parkes. Next stop, The Prime Ministers' Corridor of Oaks. Joseph Jackson conceived the idea of an avenue of oak trees to be planted by all the Prime Ministers of Australia or their nearest surviving relative.

Then it was lunch at Schwarz Patisserie in wentworth Falls. 'It is not only well known in the Blue Mountains, it is famous as a specialist German bakery throughout the region with visitors travelling from far a-field just to grab one of their delights.' Absolutely amazing food!

We toddled off to Leura cascades, Wentworth Falls and Lennox Bridge. We wandered off to Glenbrook Lagoon to see some ducks for Gem. We had tea with himself's dad and then it was off to the pub for dinner and a quiet trip back to the Elf Sanctuary. Spike and I had a fabulous day in the Blue Mountains. We shall see what tomorrow brings!

Pictures here

Grand Adventure Part 5

Way early start to the day to head off on an adventure with Paul Pavlinovich, Charles Strebor and Xtian... and Spike of course. We went on track patrol and had an amazing time check out the awesome that is checking out a train line in a nifty yellow railcar.

After that it was back to Casa Christensen to do the final packing before flying out to Sydney. Al hung out at the airport with me until it was time to board. The I was off Sydney for another part of the Adventure to start!

Grand Adventure Part 4

We packed up at the Bat cave and headed to Casa Christensen. We stopped for coffee on the way and met up with Shari Mattox and Peter Sherriff. There were some mighty fine cows there as well.

After some time catching up the Steve and playing with Charli, we headed up to Sky High to take photos of the sunset with Paul Pavlinovich. Paul was a wee bit late and managed to scare us half to death resulting in a lost lens cap... We had a chat and coffee than back to Casa Christensen.