5 years *cough* months

I know. I have missed a whole bunch of posts.

Question time

This morning I was asked by a friend

What would you say to your younger self today? When you look back you must be amazed at the path you have walked and your incredible strength

This is my rather wordy reply

5 years

As of today (14/02/2016) I am 5 years post op.

I am very very very lucky to be alive and I am very well aware of it. There are so many who don't make it this far.

This year instead of my annual trip to take photographs of the sunrise with friends, I will be at Tunes for Tumours an event this weekend to raise funds for the Peace of Mind Foundation.

4 Years 11 months

One to go!!!!! Not really a lot in this blog.

December was a bit crazy as per any other December. There was family, food, and fun. Having the Robertson clan here for Christmas was wonderful. Having Kaitlin, Sarah and Adam here was fantastic.

I've been accepted back into University this year. I have switched to neuro-psych instead of neuro-science. I am really looking forward to it and to being back at Uni!

Next month Tunes for Tumours will be hitting the ground running. We have 4 events over 2 days, all culminating in the art show (with Stormtroopers) You can find out more at tinyurl.com/tttickets There are links there to take you to the ticketing pages. $11.90 per event is not bad at all. That is a grand total of $47.60 for 2 days. Funds are being raised for the Peace of Mind Foundation http://www.peaceofmindfoundation.org.au this all coincides with my 5 year brainaversary on February 16th

Of course there is the BTAA meeting in Canberra as well!

4 Years 10 months

It is that time again. It seems to have come around a lot sooner than I was expecting!

Today is the anniversary of my Mum's passing. She was a big Christmas nut. Everything Christmas would come out. Decorations, crockery, glasses with little glass markers on them, the big meals to feed a small nation. There was a new Christmas T-shirt and flashing Christmas earrings. It is something I miss but I also have fond memories of all those Christmas's and the time spent with family. I have the remaining decorations that belonged to my Grandma and my Mum, I also have a little box with some of Mum's cute Christmas earrings. This is the second Christmas without my Dad.

4 Years 9 months

I left you last time with my impending week of extreme thinking. I went to the Synapse AGM, the BTAA summit, COGNO and then the Cure Cancer Foundation fun run.

Things aka 4 years 7 months

"When you are a Bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thingish inside you is quite different when it gets out into the open and has other people looking at it"

By the time my monthly post rolls around, there will be more things to think that I can honestly remember.

4 years 6 months

4 Years 6 months

Things have changed again!

I have ended up with a whole lot of travel going on over the next few months!

This month we will be going to the Sunshine Coast for our anniversary. I'll be volunteering at a brain tumour charity fun run followed by a brain tumour conference. September Kim and I are going to Tasmania for a week! Kim and James heading off to Adelaide on their own adventure. October I head to Melbourne to volunteer at a women’s retreat for brain cancer patients followed by the BTAA summit and the COGNO ASM. Finally (as far as I know) I will be heading to Melbourne again for BioMed Link 2015!

I have, in the last few weeks, joined the Hand Up Creatives team and am organising an event in February 2016 to raise funds for another brain tumour support charity. Lots and lots of things going on that all look to be positive! I am really enjoying doing the work for the Hand Up Creatives event and overjoyed to be able to help. The purpose of the group is something that really appeals to me and the people involved are fantastic.

I feel like I have really turned a corner with everything. I am coping with life generally a lot better. I am looking forward to things and enjoying life. I actually feel happy! I've picked up photography again. That horrific 7 month chest infection/pneumonia/asthma ride truly sucked but I through that now. I am still having to deal with the effects of it like increasing my fitness, seeing a muscular-skeleto specialist about the costochondritis, a respiratory specialist for the brittle asthma, I'm still on steroids, Salbutamol, Atrovent, and Fentanyl. It could be worse!

At 4 years and 6 months I feel that I have managed to heal and get through most of the post op issues I had. I still have some memory problems and a change in my learning ability. Everything else seems to be fine. I have had the very special opportunity to walk through the pre op and post op experience with a wonderful woman on the other side of the world. Her op went very well and she is having a great recovery. I am so happy that these surgeries can go so well.

I wrote a piece for LinkedIn a couple of weeks ago about brain tumours and the assumptions people make when confronted by someone’s brain tumour diagnosis. It also explains the areas of the brain that can be effected by surgery and of elevated CFS levels in the brain. I have a couple of courses coming up which will add to those I have already completed.

All in all, life is good.

I hope you are all well and enjoying life

4 Years 3 months

4 years 3 months

Big big things happening!

Health wise we are still on the search to find out what has been/is going on with my lungs/chest wall. Super blood test to determine the function of my adrenal glands has been done as well. I should have a clue how that went soon.

4 years, 2 months

Since last time…

I have had a funky chest infection which ran for 3 months and a bunch of antibiotics, IV and oral. It turns out that from all that coughing I developed costochondritis. I have some damage to the muscles in-between my ribs and all of the joints to my sternum and spine are inflamed. I found this out in my last trip to the emergency department and then being admitted. I was put on duragesic patches to manage the pain. I was in so much pain breathing that my brain was telling my body to breathe in a way that got ‘enough’ oxygen to the brain with the least movement. I had laryngospasm to add in there as well. Within a very short time for the first patch going on I realised I could breathe and realised that I had really been in quite a lot of pain.

4 years!!!!

I was lucky enough to spend Saturday celebrating my 4 year brain birthday with friends photographing the dawn at Wellington Point. I also have some very cool lithops which look like brains, on their way to me so I can plant them somewhere!

Four years ago today I was heading into and then out of surgery under the skillful hands of Dr Charles Teo aka Charlie aka the Wizard of Oz. My brain was pretty unhappy. It had been abused by the tumour sitting in the middle of it. The pressure in my brain would increase and drop off as it blocked and unblocked the flow of CSF through my brain. Consequently one half of my brain had slowly began going for a wander to meet the other half of my brain rather firmly at the front while increasing the divide at the back (that isn’t a good thing) and had as a matter of course bent the great dividing line. I was sick.

Now for some information and diagrams that you probably aren’t that interested in.

My tumour was surrounded by some of the most critical structures in the brain. Because of its location and relationship to surrounding structures, abnormal pressure caused memory issues, brain fog, insomnia, heat intolerance and more. As soon as the temperature hit 29 I would be in ridiculous amount of pain and generally unable to function.

The tumour was surrounded by the CPU or motherboard of my brain.  It connects and coordinates the lobes of the brain, the brainstem, cerebellum and spinal cord. It has four brain regions which are: the thalamus, hypothalamus, pineal gland and pituitary gland. (Highlighted in green)

It was located in the middle of some of the most fundamental and critical parts of the brain and brainstem. Atrophy of the thalamus can occur from the increased CSF pressure. The hippocampus is also affected as it forms the ‘roof’ of the ventricle and connects to the hypothalamus. The hippocampus plays an important role in memory as does the hypothalamus. (Pink)

The walls are formed by the inner structures of the thalamus. The front wall is formed by the anterior commissure which connects the left and right thalamus, and the optic chiasma. That is where the optic nerves for the left and right eye come together, as well as cross over to opposite sides before going into the thalamus and occipital lobe in the back of the brain where vision is interpreted. The posterior wall is formed by the pineal gland a structure that connects the right and left thalamus. (Blue)

The floor of the third ventricle is formed by the mammillary bodies are closely related to the hypothalamus and memories, especially memories related to smells, also connected to the hippocampus .tuber cinereum, hypothalamus, subthalamus, infundibulum, posterior perforated substance and the upper part of the midbrain called the tectum, which means roof. Remembering smells is important to all animals that forage for food. (Yellow)

The subthalamus forms a portion of the floor. The subthalamus is closely related to the hypothalamus. It also contains nerves that connect it to and allow for communication with other parts of the brain. It also communicates with the part of the brain that produces dopamine. CSF is produced from blood that has been pushed or pulled through an extra fine filter in the wall of the ventricles called the blood-brain and CSF barrier. (Purple)

This is a diagram of all the parts of my brain that were affected either by pressure from intermittent hydrocephalus pressure from the tumour itself or surgery. I had a septum pellucidotomy which is putting a window through the septum pellucidium to allow CSF pressure to equalise between ventricles.

Chances are you haven't made it this far. If you have congratulations. I hope you a happy and well!

Stories and experiences of other patients

As a part of my journey through pre op and post op I have met some amazing and inspiring people. There are some amazing stories and each of them is a testament to the power of the human spirit. Without strength, often self-advocacy and hope, getting through is very hard. One of the ladies I have met through a support group is Candy. She has allowed me to share her story with you.

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.

3 years 6 months

Last post I left you with a wall of text. This one not so much

So I’m 3 and a half years post op, so far, so good.  There have been some hurdles, bumps in the road and a bit of cha-cha (two steps forward one step back).

When my Mother passed away I knew it was coming. She had lung cancer; there is as yet no cure so it was ‘expected’.  My Fathers death has affected me far more than I thought it would.  I knew that he probably would not make it through this winter. Living with him three days a week made it more and more apparent. I was aware it was a very real possibility but I was not prepared for him to go so suddenly and certainly not the way it happened. 

Thinking about it logically, it makes more sense to me now why it has hit so hard.

In 2007, the year my Mother passed away, I was spending weeks at a time with them taking care of them both. He had a lung infection and she was having chemo, she couldn't afford to get his lung infection and he couldn't do much himself.  It was things like cleaning, cooking, helping my mother shower, drying her and shaving those three hairs on her legs.

When she went to hospital and then slipped into a coma, my youngest brother and I took shifts sitting with Mum and Dad so dad could get some sleep. I sat with Dad and helped him make the decision to let her go and sat holding their hands as she passed. That was 2 weeks before Christmas 2007.

Dad came home from the hospital and lived with us for 18 months. He bought a house after the first year but took six months for him to move into it because he was moving in without Mum. While he was moving in I was helping to unpack boxes. There were ‘landmines’ everywhere. The landmines were mums things. They had sold their house and put everything in storage for when they bought a new house together. Each box was peppered with things that belonged to mum. There are still piles of boxes as yet unopened or half unpacked and put back.

Dad would come around every day. It was for a cup of tea or a trip to the shop. We had ‘family night’ when Dad would come for dinner. If I hadn’t heard from him in 48 hours I would phone him. He would go on trips with one of his brothers which seemed to cheer him up and breathe some new life into him.

Anyway, the point is, he was here every day. I saw him every day. He was a constant in my life. THAT is why it has hit so hard.

I have deferred University until 2015. I cannot think clearly enough to make it through this semester. I would prefer to put it off and do a better job than try to struggle through and mess it all up. I still want to be a part of the research to cure brain tumours. I need to do this. While I am out I will be tackling some independent study to ‘keep my hand (brain) in’.

I took some time out and went to Melbourne for a few days. It helped to be away from things for a while. I will be going back mid (ish) September for a week and then on to Sydney for a week. I have booked in for the Sydney Harbour bridge climb on September 30^th. This will be the second of three bridge climbs I promised myself that I would do.

I have discovered ‘Because I said I would’. I am finding the promise cards to be very helpful and will be filling out more very soon. This is where you can find out more about it and start yourself off. because I said I would These are some of the ones I have filled out so far.

So, at 3 and a half years, I am 2 ½ to 3 years in credit. I am starting to plan my 4 year Brainaversary. Starting the new year of that second chance at life with a dawn photo walk seems to the biggest part of the tradition now. Hooray for a second chance at life.

3 years 5 months

I forgot to write this one

Obviously this isn't a "looking back to see how far I have come" post. This is just going to be raw and honest and real. My other posts are raw honest and real, but this one will be emotionally ragged

My father. He had a fall. He was pretty messy when he arrived at the emergency room and it would be 'just a stitch or two, some scans and then back home.

• Then it was 'Stitch, no brain bleed or oedema, but a fractured cheekbone no surgery required'.
• Then ‘No stitch, no brain bleed or oedema, but a fractured cheekbone no surgery required, and a fracture at C4 but they went sure if it was old or new so had to send it off to another hospital to double check'
• Then ‘Fractured cheekbone (no surgery required) NEW fracture at C4 and transfer to another hospital'.
• New hospital 'Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord'
• Then 'Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord, two codes, get him off the blood thinners (approx. 10 days) and try to clear up chest infection to perform spinal surgery'.
• Then Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord, two codes, get him off the blood thinners (approx. 10 days) and try to clear up chest infection to perform spinal surgery OR a chest neck brace until it healed'
• Risk of death during surgery extremely high
• Risk of death after surgery high as he wouldn't be able to cough.

As the days passed he became more confused and couldn't understand what everyone was trying to tell him. Too many people. Too much information.  I explained it to him and explained new information as it came in. I made sure the nurses had on file that I needed to see the doctors who were seeing him so that I could explain to him what was happening.

Saturday night after getting home from a friend's father's funeral, the phone rang. Dad had coded again and they were struggling to get his oxygen levels up. Call Henry and Brendan and get them up there a.s.a.p. We had to make any decisions unanimously so we all had to be there. Dad's oxygen levels had dropped to 72. Even if they could get his oxygen levels up to the high 80's he would have pretty severe brain damage. Do we continue the battle to get those levels up and preserve him for a possible death during surgery? Or do we make him comfortable and let him pass with some amount of peace and dignity with his family around him. We chose to let him go comfortably and peacefully. We all said our goodbyes and told him it was okay to let go.

He got a bit confused, asked for his grandchildren, and then for me, the thing that broke me, He thought I was Mum. I am glad it gave him comfort that He thought she was there with him. It tore my heart out and I broke. I have never collapsed so completely before. I had to walk away from his bed to Kim and then fell apart. I was doubled over and couldn't breathe. Kind of like being winded. Then I had to leave the room. I crying, wept, and hurt so very much.

After I had gotten myself together and hugged everyone. We went and sat with him. I held both of his hands and the boys were there with him too. I don't remember much of the detail there. I felt his heart and breathing slow and stop and watched his face relax as he drifted off. He passed away at 4 am July 6 th 2014.

After that, there were funeral arrangements and all things that go with the passing of a loved one. The passing of time has been for me, and I suspect for other family members, odd at best. I feel like it was yesterday he passed. It wasn't. Yesterday was the funeral. It wasn't.

I am 40, married to the most amazing man, my best friend in the world. We have four children; they each have their quirks and life lessons. I have two brothers who I love dearly. My husband, the man I only have two photos of with my father. Two, in the 19 years we have been together. Just two.

I am carrying a lot of anger for a lot of things. Things past, things to come. Things I had and have no control over.

I had considered quitting University so I could look after my father better. I don't need to now, he is gone. There is no tie to keep us in this house now. I don't need to be so close to my father to care for him. He is gone. Everything has changed.

I am now flung into the great unknown. I guess I knew this was inevitable, I wasn't expecting it now. How to I hold this family together now? How do I stop my brothers and me drifting apart? How do I preserve that family connection, the events that have kept us together? The traditions.

The thing that most brings me to tears is when people say that my mum and dad would be proud of me. I had always hoped they would be. I never felt that I would accomplish anything they would be proud of me for. Not because their standards were too high, mine were.

So, as I sit here writing this, I am weeping. This is my heart. These are the events of the last few weeks. This is the beginning of a new future without my parents in it. At 15 I was terrified they would die and we would be orphaned. At 40, it hurts just as much if not more.

They are together now. That in itself is a comfort.

3 years 4 months

Since the last episode…

I had the great opportunity to meet and spend some time with other brain tumour survivor recently. She is visiting Australia from Holland. It was quite the adventure. We had agreed to meet at a coffee shop at the airport with plenty of time before her flight to Cairns. I arrived at the airport a little early, headed up through security and for the coffee shop. I waited for about an hour and a half and she still hadn’t arrived. I filtered through Facebook to try and find a phone number to call and find out where she as and discovered I didn’t have it and no one else I could contact had it either. In future exchange numbers BEFORE meeting. So in order NOT to miss her, I headed or her departure gate. The lovely ladies at the desk put a call out to ask her to come to the gate ASAP. I wandered around between the gate and security for a few hours. Meanwhile, she was downstairs. She thought I wouldn’t be able to go through security as I wasn’t on a flight. She was in a coffee shop downstairs (I didn’t know there was one downstairs) at the same time I was walking around upstairs looking for her, she was downstairs looking for me! Eventually she came up to wait for her flight departure. We managed to have about 20 minute talking before she had to get on her flight. It was certainly a comedy of errors but well worth it in the end. 

I am writing this in the middle of a study break. I have my first, of two end of semester exams starting tomorrow morning. The last will be on Thursday. I am very much looking forward to the mid-year break. I am about a week behind on my course through University of Glasgow and the one through University of Birmingham starts June 23^rd. I am also looking forward to spending a week in Sydney catching up with Rick and Loni, Alison and maybe Simon. I hope to catch up with Charlie Teo as well (not as a patient) but we’ll see how that works out.

I have been living with my Dad three days a week. He is not well and less able to care for himself. I had to pack him off to the hospital the other week as his breathing trouble had become much worse and he had a fall and couldn’t get up. They discovered he had yet another version of one of the bugs he has had on and off for the last seven years. He had a fall in the hospital and luckily didn’t break bump, bruise or damage anything. He is now home and has started some community care services including having a nurse pop in and check up on him regularly.

I had and am having a bit of a crisis of confidence and am wondering if I am going down the right path at the moment. Part of me is terrified that I will fail miserably and not be able to continue this particular degree. Part of me is telling me that I could have just been so caught up in the post-surgical wish to give others a second chance at life after a brain tumour that I have leaped into the deep end of a very large pond I should not be in. Part of me is saying it is just pre exam nerves and lack of confidence. However it works out, I have taken a course from a different degree as one of my electives for next semester.

The weekend after exams finish I will be meeting up with another survivor. I am very much looking forward to it. It is nice to be able to reach out and exchange stories, experiences and advice with other people who have been or are in the same position.

I am booked in for some more testing on the 25^th. I’d like for it to all go smoothly. I think I have had more than my share of this stuff. It is funny that even this far out I am still having to recover from the post tumour ans post surgery effects. Brain surgery and brain tumours really mess things up more than you could imagine.

Oh and the fundraising campaign for Cure Brain Cancer Foundation will wind up on 30th June. On 14th July I will post a picture showing how much my hair has grown since it was shaved and my head was painted.

Much love from my quite exhausted self