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

Life is like a box of chocolates

A Bertie Botts every flavour beans kind of box of chocolates. There are the Strawberry ones, the sweet moments that make your heart mushy. The Peanut Brittle ones, for those tough times when you feel like you may just break. The Minty ones, those times where everything is clean and clear. The Sick flavoured ones, self-explanatory. Marshmallow for those times when life is cushy and floaty. Then there are the Onion ones, those are the ones that bring you to your knees and you can't stop the tears.

Hello Onion chocolates! I have had some pretty Peanut Brittle time in my life. There have also been Onion moments. Right now it is Peanut Brittle and Onions..... Quite the combination!

The Peanut Brittle - knowing I have an exam on Saturday, an assignment to do with a topic I loathe the more I look at it and the opportunity to rewrite the previous one, two more exams before the end. My Husband is having some peanut brittle moments with his study as is my Son. It is the Peanut Brittle end of semester.

The Onion - Living with my father three days a week. He is shrinking away before my eyes. He finds breathing more and more difficult. Some days are better than others. I have some people ask me why his doctor is bothering to do anything to keep him going and my own doctor offering to write him prescriptions for opiates to make things more comfortable for him. Don't get me wrong, he isn't about to drop off the planet tomorrow, but then there is a possibility he might.

I have managed to get him to stop taking his insulin (was backed up by him diabetic care team yesterday). His BGL was getting far too low. It is better now, I don't have to worry so much about him dropping off quietly into a coma or dying in his sleep. I bought him a wheel chair some months ago so that he can go out with family or friends on days he isn't breathing so well. I have been looking at shower chairs as he is finding it more and more difficult to dry himself after showering. I think we have come up with an alternate solution, getting a chair for the bathroom so that he can sit after the shower and dry himself. Today were going to look at a bunch of wheelie walkers to see if we could find one that works for him so he could regain some independence and have somewhere to sit if he runs out of breath part way through a shop etc. We didn't make it there today, next time if/when we do, and he can hire to see if whatever he likes will work for him.

Last week I had to send him to bead each night. One of those nights he woke up at 1 and wasn't really awake but was not feeling 'right'. I took his temp, tucked the blankets in around his back and settled him down and he went back off to sleep. On the weekend I had to help him put his jacket on and thread his belt through the belt loops on his jeans. Last night I had to send him to bed. When he got there he couldn't get the last three buttons on his shirt undone, he couldn't get the bottom on his jeans undone either. So, we got the shirt and the jeans off, got the pyjama shirt on but couldn't manage the buttons, there he tried putting both legs on one leg of his PJ pants. Got him sorted out, lifted his legs into bed tucked him in and turned out the light. I left the bedroom doors open 'just in case'. I spent the next hour lying in bed listening to him moan in pain in his sleep.

Onion chocolates suck. I had a little cry as I went to sleep. Today, as I mentioned earlier, was a bad day for him. Tonight I came home to my own home, he didn't really want me to go, and I've had quite a bit of a cry (Including writing this). I came home to a beautiful, thoughtful and unexpected gift from my very dear friends on Flinders Island. I also received the tickets I bought for the three of us and Dad to see a show at the end of the month.

It has been a hard week. I have a full day of University tomorrow and another on Friday so I can study AND go to lectures. Saturday is exam day. Sometimes I feel like I would like to throw my hands in the air and run away.

I am glad that some of Dad’s family have started visiting him and or calling him. It brightens him up.

3 years 3 months

Since the last episode…

I have had the great opportunity to meet and spend some time with other brain tumour survivors and their families. We had a lovely afternoon chatting over coffee. One pre op, two post op. I'm one of the post op the other is only 5 months out but doing really well in his recovery.

I have three exams and an assignment coming up. I am thrilled no end. It is that end of semester when the melt downs happen and the “why am I even doing this” and “I am not smart enough for this” come out of the cupboard. So far I have managed to push through. That isn't to say I haven’t hit any other those bottoms, more that I have found ways to have some rational ‘self talk’.

I have had much experience with Jerks this month. Two on the bus yesterday morning who thought F and C were both adjectives and punctuation marks. There is nothing quite like an hour of that to start your morning. To which I responded

Dear Jerks of the world,
Particularly the two jerks in the back of my bus yesterday morning. F**K and C**T are not adjectives or for punctuation. None of the little old ladies (or men ) or the mothers with their young children needed to hear that.
 I had the rare privilege of spending an hour listening to the tales of your criminal and sexual exploits.I spent much of that time considering how to approach you without risking being clobbered. Unfortunately I couldn't think of a way to do it and so spent part of the journey feeling guilty for being one of those people who don't act.
 I hope that there isn't a next time however, should it happen again, I will not be sitting there on my bum doing nothing.
 Love
Me

The other was one of those middle of the shopping centre selling beauty products sales men. This was my response

Dear Mr 'I'm selling seriously over priced 'beauty' products',
Do I somehow give you the impression by my appearance that I care about beauty products? Why do you think you can suddenly convince me to buy your stuff and have a beauty regime? How in the name of all that is holy (and unholy) do you think you can sell this junk when I can smell your nausea inducing breath at fifty paces?
Beauty is something you cannot buy. You wear your beauty in your personality and soul. I do not wear make up, I do not hide the lines, I do not hide the scars or dye my hair. I embrace life and the privileged it is to have had one as long as it has been to this point and any point beyond this. Life is beautiful as is ageing.
Tear off the masks and be yourself, or keep them if that is yourself.

I am living with my Dad three days a week now. He has reached a point where many things are difficult for him, cleaning, cooking, showering etc. It takes an hour for him to get a shirt and pair of pants on some days. It can be pretty depressing and heartbreaking. I am watching him slowly fade away and suffocate to death. He has lots insane amounts of weight and his breathing is not improving in spite of antibiotics for super bugs. Though I do get to spend time with him and listen to him talking about his life when he was young before and after Mum. He also brings up his concerns about after he is gone, what he wants done when he goes and all those other necessary but morbid subjects. I had these same conversations with my Mum before she passed away and I have had most of those with my husband before my surgery.

Retired photographer, can you tell?

This last week I had another of those ‘isolated episodes’ which of course makes them no longer isolated. This time I was in my doctor’s surgery and got to spend about 3 hours in the back room with the nurse and the doctor popping in to check on me. She came in at the end of her shift and told me I should go to the emergency room. I was apparently sweating. My head was killing me, I wanted to vomit and my right arm was having a tremble. It was similar to the last episode but not as pronounced. I talked her out of the hospital trip. She did however record that she “Strongly advised me to go to the hospital”. I have had a headache and nausea since then but nothing hospital worthy and the arm thing settled down after I got home.

Olav has tagged me in the Five day quest so that is keeping me entertained.  I am still doing my 365 macro project though I have had to play catch up a few times now.

I hope you are all well happy and enjoying life!

3 years 2 months.......... WAY late

It seems my ability to track time has still not improved!

Quick update for this last month.

On April 2nd I was taken from campus to the QEII hospital with a neurological event. It was a bit special. I couldn’t write. Nothing I wrote down was actually what I was trying to write. I couldn’t think enough to make decisions; I had a MASSIVE headache and was shaking. My right arm was shaking pretty violently. I spent 7 hours in the acute care unit in the emergency department had a brain scan and bloods done. Brain scan was fine (YAY). I was allowed to go home after they finished the last bag of medication (4 hours for one bag).

I was then unable to attend University for a few days. I missed an exam and had to have it deferred. When I did return I received a ruling that I would no longer be able to attend chemistry labs as I was perceived to be an OHS risk. I was still quite unwell when I returned. I sat the original exam and bombed out pretty spectacularly in spite of application for special circumstances. I had to defer a different exam because I missed three crucial lectures.

I went to see my GP who called in sick. I ended up seeing another doctor who told me that I really should have taken all that til 17th off Uni. So it has been a bit crappy. I’ve had a headache since my trip to the hospital which varies in intensity. No one seems to know exactly what happened. It has been written up as “Atypical Migraine”, medical speak for ‘we have no idea but it hurt a lot’.

I have decided to drop chemistry til next year. I will have more time to work with disability services to make better arrangements for my labs; it will take some of the stress off. Taking four subjects this semester was overambitious.

I have continued with my macro project. I hit a pretty low point and was struggling to find a reason to pick up the camera at all. I gave myself a good solid boot in the backside and reminded myself that if I change my outlook and see all the things I HAVE achieved and the absolute bonuses of my life at this point instead of wading in the mire of self-doubt and misery, those things are really pretty awesome by comparison. I still have my down days and some of those days I will cycle really quickly between up and really down, but I am human just like everyone else.

I am currently on mid semester break and taking advantage of the time off. I am also allowing myself to have more pyjama days to try and drop some of that stress off.

I hope you are all well, as happy as you can be and at the very least making it through okay ♥

Taking a step back / Pyjama Day / Griffith / Houston Genaux

Almost a year post op I watched a TED talk by Dr Jill Bolte Taylor and following that read her book 'A Stroke of Insight" I emailed her and she replied with encouragement and understanding.

I decided to see if I could study and started a dual certificate in Business and Business Admin. I wanted to get in to a neuroscience field to help find a cure for brain tumours. I was 16 months post op.

I finished that 5 weeks early and decided that I would study Adult Tertiary Preparation to a) see if I could remember anything long enough to make it through assessment and b) If I could do well enough to be able to go to University and pursue my dream. I finished at 2 years 9 months post op. I had managed somehow to score honours across the board.

On my 40th birthday I was accepted into Bachelor of Science (Clinical Science) just under 3 years post op. I started Uni just after my 3 year brain birthday and have had my ups and downs.

I had to fight a long time to stay alive. I had to fight to recover and improve enough to get here. I had to fight to due to a misunderstanding re my vision. I have just lost my lab access. I have spoken with some wonderful Lecturers and other amazing people at Griffith and at Eskitis. Some times it is hard to step back and look at the big picture. Sometimes I am trying to jump hurdles that are too far away.

I am constantly amazed and thankful for all the support and encouragement I have had from family and friends around the world.

I asked for people to be references for bursaries I was applying for and received a beautiful email from my brain buddy Houston. It reads as follows -

Julia Robertson.

I am writing this I guess to give a little testimonial about Julia, Her and I have a common ground that to some would find rather astounding because our commonalty is we are both survivors of a rare brain tumor.

We met in a group on Facebook back when the numbers of the members where in the low hundreds and remained as the little group of rare tumor survivors grew to just under a thousand over seven years, in which Julia has shared her setbacks, personnel grief and accomplishments.

Many of Julia's accomplishments are simply the example she gives to others, like myself. If I am having one of those days that everything from tying my shoestrings is difficult, if she knew I was letting that stop me I am sure she would tell me to put my chin in to the wind stand up and put one foot in front of the other just as I have told her in the past.

Well a bit about what Julia has done.

She has made a tee-shirts with a survivors logo on them that she wears while running in events which draws awareness to the condition that we both share. Her running, shows others that share surviving a brain tumor that sooner or later there is a possibility that they will also.

She 'DOES STUFF', like Youtube video's that graphically show the condition, the surgery and the statistics to show others. They will learn that having it and being in the 'wait and watch' that it is not the end of the road where you use it as an excuse, rather you will stand up, brush yourself off and recover as you discover being normal for the first time.

I know she does embroidery, because she has shown pictures of outfits she has made for her brother and she is rediscovering Photography which has had an effect on me, I may not be able to run but I have taken back up an old love of riding a bike which while I am out on the Erie Canal bike path I will take pictures as I to relearn the art of photography, because Julia can, I do not have an excuse, rather just a reason to start over, she leads and she does it very well by example.

I have failed to mention I am completely on the other side of the planet, just in case you are wondering just how far her motivation can reach. Furthering my education is back on my list because of Jewels.  

           

Her Friend

Houston Genaux

Rochester NY

 As I said I am constantly amazed and thankful for all the support and encouragement I have had from family and friends around the world. Things like this letter from Houston remind me of who I am, where I have come from, where I am going and most important of all, the amazing people I have coming along on this journey with me.

This is of course not meant to in any way belittle the impact and support of any of the other people in my life who have helped, supported and encouraged me along the way. Houston's email was something I had not expected and surprised me by the impact I have had on his life.

This is why I do what I do. I do it for all of these people in these photos I know and for all the others I will never get to meet.

3 Years 1 month

My beautiful friend Al has inspired me to incorporate my own version of the post she made on International Women's Day (found here ), to my monthly blog post.

A little over three years ago, when my life was running out the door I came to some sudden and life changing realisations. I could not remember a time when I felt ‘good enough’. I avoided having photos taken of myself and usually pulled faces because I did not like what I saw.

In primary school – 

When we played games around fairy tales, I was always the wicked witch, the ugly sister, the troll under the bridge or the evil step mother.

I was hit by a car when I was 5 and once healed enough to return to school, I was paraded around to every single class to show the children what it looks like if you are lucky enough to live after you are hit by a car and that looking before crossing the road is very important (it is important)

A school friend asked me to learn ballet with her but then pretended not to know me in classes and giggled and pointed at me with her other friends.

In high school, I was never part of the in crowd. I was not

Smart enough

Pretty enough

Skinny enough

I then found myself a partner who reinforced all of those things for me. 

After thirty plus years of believing this, I finally figured out that those photos are important. You children, husband and family don’t care how you ‘look’ they care that you look and are happy. I had a friend take a set of photos of me (in secret) for my husband and my children in case the surgery went horribly wrong. I gave them (framed) to my husband before we made the journey to what became the beginning of my new life.

Don’t wait. Embrace life, it doesn't matter how you look the people who love you see you as you are. Have memories that can be used to look back over your life where you are comfortable in your own skin. Don’t wait til you lose another 10 kgs, do it now. You will find a million reasons not to, don’t give in to it. 

I have probably said this before but I will say it again (and again and again and again). I embrace my greying hair, my saggy bits, my wrinkles and my scars. They are part of me, part of who I am and how I got here. I embrace them and celebrate them because I know that far too many people will never reach the age I am now. I am one of the lucky few.

This month I started University. I kicked off with the chemistry linking course and managed to get through unscathed. I have been petrified of chemistry since high school. O week was pretty fantastic and I joined a couple of clubs! The first two weeks were a little scary but settled down pretty quickly. I have thoroughly enjoyed my time at Uni… until yesterday.

Yesterday I had a call asking me for a meeting to discuss my ability to study this degree. I am to go for a meeting on Friday morning. I am to bring my course profiles, text book receipts and any documentation I  have (or can lay hands on) re my disabilities (I loathe that word). Yesterday it made me angry and more determined than ever, not only to complete this degree and go on to brain tumour research, but to do it spectacularly. There was much ranting, seething and general expressions of displeasure last night.

Today. Today sucked. Today I was overtired and fragile. I made it through my Human Biology workshop and quiz without too much bother. The wheels fell off after that. It hit very hard that this dream of mine that I have been chasing could be taken away. I cried through chemistry, I cried through my chemistry workshop, I cried through my break, I cried waiting for my last lecture of the day and I cried some more when I met my wonderful husband for dinner before his lectures started for the night. I spent today feeling like maybe they were right and I could not complete this degree, I sure didn't understand anything in any lectures today (I wonder why). I felt that I should probably just go down to student services and withdraw completely. Then my heart broke a bit more. 

I fought for my life for 8 years

I have fought to recover for the last 3 years

I fought at the end of last year to get IN to University

Why must I fight again to stay, to realise my dream of helping to find a cure for this f**king beast and make sure no one else EVER has to go through the things I and others have been through?

Tomorrow is another day. I didn't quit today.

Edit - Since this post the situation has been sorted out!