Grand Adventure Part 3, Day 1

Picked up form the hotel by the lovely Al and Steve. Found somewhere for coffee and food. The 'Threshermans Bakehouse' lovely coffee, the spinach quiche was yummy as was the greek salad and the chickpea salad.

We dropped Steve off and Al and I wandered off to a school front garden to sit and chat for a while. We headed off to kill some time, fill Al with food and grab some essential food items for later. Spike came with us.

We toddled off to meet up with the ever beautiful Vikki and the amazing Mr Charles. We had a nice chat, the gang was back together. All too soon we had to split off with Vikki leaving on her own. Mr Charles came with Al, Spike and I.

We arrived at Cape Woolamai and unloaded the car. It was time for dinner so we headed to the favourite haunt, 'Magic Lands'. The food was lovely as was the company, although Mr Charles had a disappointing Parmigiana. Back to the bat cave and off to sleep after some chatting and relaxing.

Grand Adventure Part 2

Off to Rydges CBD Melbourne. I checked in, lugged my bags into my room and had a flop on the bed. That is when I found spike! He had stowed away in my suitcase.

I wandered off in search of a late lunch and found 'Self Preservation', it was the planned site for the Melbourne survivors coffee meet. I had the most amazing sandwich and coffee there. The atmosphere was beautiful. The staff were lovely. This is on my favourite places to eat in Melbourne list.

I wandered around a bit and picked up some essentials I hadn't brought with me. I took that back up to the room and then vegged out for a while. I spent some time that evening trying to decide if I would go downstairs and eat in the hotels restaurant, flop on the bed and stay there or order room service. Going down to the restaurant would mean getting 'dressed'. Flopping on the bed would mean hunger and not really being able to take my medication. Room Service would just be obscenely expensive.

I needed food. I didn't want to deal with a crowded restaurant. I put my coat on and found a subway after walking around the block and having a look at things. With subway in hand I walked back into the hotel, past all of the people in the restaurant and up to my room. I got to have food and flop on the bed!

Off to what turned out to be the worst night sleep I have had in a long time.

Grand Adventure Part 1 Day 1

Part 1 saw my brother, the lovely Claire ad little Jake coming to see me off at the airport. The gate was changed as we were almost on it and then delayed. We sat around talking, discussing planes with Jake and some of the things I will do while I am away. We have decided that when he is 10 we will do the Sydney Harbour Bridge Climb!

Jake was very upset when he had to leave and we had to make a couple of deals. #1 If jake is missing me he needs to have cuddles with Dad and Claire. #2 I will be back next time he goes to stay with his Dad #3 I will show him photos from my trip away but especially the climb when I get back. #4 When I was to phone him the day after I got to Melbourne.

The gate for the flight changed. The plane we were supposed to be on the go to Melbourne was delayed on its flight from Sydney. The flight was further delayed when we were boarding. Relatively smooth sailing until landing in Melbourne where the baggage claim carousel was changed.

Met up with Mon and Liz and head off to the lovely home. I got to play with two beautiful bunnies and a cat! I had the most wonderful sleep. I really enjoyed my time with Mon and Liz.

Then it was off to the hotel (Part 2)

3 years 7 months

Things have been a little odd.

Number one - I started pottering around in Mum’s jewellery box and had a bit of a twilight zone thing going on. Some of our jewellery is very similar and some identical. See rotten phone pics below.

 Mine are on the outside. Mums are in the middle

Mine is the blue one

Mums on the right

Mine is on the left

Mums is on the left

Mums is on the right

Number two – I posted a link to the Eumundi Community Fundraiser Concert being held on October 24th. A beautiful talented young lady I have known since she was born will be opening for Katie Noonan. One of my brain buddies asked how I knew her. I explained that I have known her mother for about 20 years and quite literally have known her since birth. As it turns out, he was a teacher at her school. This lovely young lass’ mother also had another mutual friend with my brain buddy. Just to throw some more into that mix, my mother in law used to sing with Katie Noonan’s Mum in Queensland Opera.

There has been some spectacular asshattery. Some nubbin ran up some charges on my Dads credit card. He has been dead since July 6th and these charges were on the 29th and 30th of September. No chance of Dad having made some random purchases… and I had also zeroed out his account before these new charges. The bank is being very understanding and as I understand it, will be writing the charges off.

My eldest son was a complete asshat. He called me. Actually rang. We spoke for a while and then he had to go. I caught the bus home things about nice it would be to have all four of our children in contact. I was sad that Dad didn’t get the opportunity to see him again. I was thinking about suggesting that we go and have coffee somewhere the following week, not wanting to make him feel pressured. I was really looking forward to seeing him again. Then I got another phone call from him. Can ‘we’ stay with you? This is the fifth house I’ve been kicked out of. If ‘we’ can’t stay with you we will either be on the street or in a tent in someone’s backyard. We’ve dropped our ‘stuff’ off at Nan’s. I’ve been through my whole contact list.

I said no. I cannot trust him. Needless to say I was shattered that he had phoned just so that he could try and guilt trip me into letting ‘us’ stay here.

I am the Brain Buddy Coffee Queen! I have had three Brisbane coffee meets, the last one was last weekend. This weekend I will be having one in Melbourne and the week after in Sydney. There will be another one of sorts on October 24th on the Sunshine Coast.

I will be flying out on Friday to spend some zone out time with some beautiful fiends in Melbourne for a week. The following week I will be spending the week with some more beautiful friends. I am very lucky to have such generous, understanding and caring friends.

In terms of Brain things, with the stress and mental health issues I have been and am living with at the moment, I have slipped backward with some things. My memory is horrific. If it is not written down I 100% will forget. I can forget what it was before I write it down. If I have made plans for a day and that pattern is interrupted in a good or bad way I will be thrown right off and lose whatever it was I was supposed to be doing. I am stressing about everything. I have to have things nailed down as much as possible or I get really agitated. I was in tears last week, I couldn’t figure out what my back up plan would be in specific circumstances over this trip away. My thinking is very much not straight.

Thanks to Catholic School, I have the world’s most amazing skill and being filled with guilt. So far I have managed to feel guilty about:

• Going away
• Going away for the period I am 
• Abandoning my family
• Not feeling the appropriate level of grief (antidepressants are working)
• Enjoying the trip away
• Spending money
• Staying with people and being a burden
• Upsetting other people’s plans
• Did I mention going away?
• Doing things I have been planning since I was pre-op
• Having coffee with brain buddies (I’m not sure how that one works)
• Going to the Concert in October
• Generally doing things on my own
• Not doing the Twilight Bay Run this year
• Not being as available as I ‘should’ be for my family
• Not ironing shirts ahead of time (I did 11 yesterday)

Now for some stressing:
What happens if –?

• My fight is cancelled.
• My bag is over weight
• I miss my flight
• My bag goes missing
• My camera get damaged
• I can’t be picked up 
• I can’t find the people picking me up
• I have nowhere to stay on Friday night
• The hotel has lost my booking
• The café is closed
• I can’t find my brain buddies
• I can’t find Al
• I can’t get to PI
• I can’t get back from PI
• Flight stuff #2
• I have no accommodation for the week
• I miss the Bridge Climb
• The Bridge Climb have lost my booking
• I have the wrong day
• I miss the coffee meet with the brain buddies
• I miss dinner with Markham
• Flight stuff#3
• I lose my wallet/bags/camera/bookings/tickets
• I don’t have enough medication
• I can’t contact anyone
• I get sick at PI/Sydney/Bridge climb
• If anything happens to Kim, James, Henry, Casey, Brendan, Claire, Jake
• Anyone gets offended that I didn’t see them

I will be doing the Sydney Harbour Bridge Climb on this trip to Sydney. I am looking forward to this trip and I hope that I will be able to chill out enough to actually unwind.

Things. Random things.

There are things that happen that make you wonder if you are actually on the same planet you were on yesterday.

This last week has been a lot like that. I burst into tears reading the subject of an advertising email about fathers day. When fathers day actually got here.... nothing. Perhaps it was because I was so wound up about it but I kinda flat lined on it. I did have another gut wrenching family event. It tore my heart out and I am not quite sure where that is going to sit with me.

I have been stressed beyond comprehension. I have worried about anything and everything and tried to keep all my bases covered and plans planned. Tiny things set me off in a panic and there doesn't seem to be a lot of rhyme or reason to it, other than change. Certain things, not everything, need to be set in stone. I cannot, rather am not coping with any changes in plans that are a 'threat' to my ability to know the how, when and where of my own movements.

Am I going to x? If I am how am I getting there? What if things don't quite work out the way they are currently laid out? Should I pack A, H and Q now so I don't forget? Should I just make a list and then I will know what I am and am not supposed to take? Should I just give in to this insanity and go and do all those nutty packing things? and which bag am I packing?!?!?!

You get the idea...

I feel kind of okay. Not dropping my bundle all day everyday. I think 'Oh I don't need these antidepressants anymore" and then without days my world goes to pot and I am in that place where I know if I didn't have the chemical safety net, I could be in a very bad place. For now I'll keep going with it and see how it all works out. I have no intention of being on these long term and would like to be off them as soon as I can possibly manage it.

This is random and jumping all over the place and probably difficult to read. I'm just running where my brain goes at the moment.

There have been some great achievements as well. I have finished some of these courses and finished some early with pretty reasonable results. I completed one of my many #Because I Said I Would projects. 25 bags of unneeded clothing and manchester packed up and delivered to life line. There are a few more bags at Dads house but There will be more there so we'll wait til we are done with that before shipping them off.

I am questioning myself and where I am going from here. Right now I cannot see myself going back to University. If I do, I'm not sure I can study a science degree. I'm not sure I can wrap my head around it enough. May be I should be studying something else, if at all. I'm pretty lost in all of it right now.

I am looking forward to my time in Melbourne and Sydney. I am feeling guilty for having so much time away. I think part of that is that I usually only go for a week and usually not trips that are so close together, I was only in Melbourne a few weeks ago. I feel like I am somehow cheating the boys out of that time. I think part of it is that I am so used to thinking about what is happening with Dad, who will be keeping and eye on him and how lonely he will be.

On the other hand I will get to complete the second part of my three part, pre op life goal. I will be climbing the Sydney Harbour Bridge. I climbed the Story Bridge earlier this year. The third of three is obviously another bridge climb. The last one is in Auckland. The three climbable bridges in the southern hemisphere, and the world (last I checked)

Story Bridge Climb
Sydney Harbour Bridge Climb
Auckland Bridge Climb

I am also having coffee meets with some of my fellow brain tumour survivors. I am not sure what is happening with the Sydney meet as one of the gentlemen who was going to be there passed away quite recently. I am becoming the 'Survivor Coffee Meet Queen' I organised the one in Brisbane, Melbourne, Sydney and there will be another on the Sunshine Coast. There was also a brief one at the Brisbane airport with one of the ladies from Holland! 

As you can see, I'm a bit all over the place and finding it hard to sort the things out from the other things, it isn't easy right now for me to be able to take that step back or out and see the bigger picture. Right now it is all 'in my face' and raw.

If you made it this far you are a champion and deserve recognition!

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.

The Black Dog

Let’s talk about depression.

Depression as defined by ‘Psychology Today’ is ‘an illness that involves the body, mood, and thoughts. It interferes with daily life, normal functioning, and causes pain for both the person with the disorder and those who care about him or her.

A depressive disorder is not the same as a passing blue mood. It is not a sign of personal weakness or a condition that can be willed or wished away. People with a depressive illness cannot merely "pull themselves together" and get better. Without treatment, symptoms can last for weeks, months, or years. Depression is a common but serious illness, and most people who experience it need treatment to get better. Appropriate treatment, however, can help most people who suffer from depression.

Major depression is manifested by a combination of symptoms that interfere with the ability to work, study, sleep, eat, and enjoy once pleasurable activities. Such a disabling episode of depression may occur only once but more commonly occurs several times in a lifetime.
Symptoms can include

• Persistent sad, anxious, or empty mood
• Feelings of hopelessness or pessimism
• Feelings of guilt, worthlessness, or helplessness
• Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
• Decreased energy, fatigue, being "slowed down"
• Difficulty concentrating, remembering, or making decisions
• Insomnia, early morning awakening or oversleeping
• Appetite and/or weight loss, or overeating and weight gain
• Thoughts of death or suicide, suicide attempts
• Restlessness, irritability
• Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders and chronic pain’

The black dog and I are not new to each other. I lived with depression through my teenage years and then in my 20’s developed an anxiety disorder to go with that as well as agorophobia. At one point during my 20’s I was suicidal and had a complete nervous breakdown. Largely All I know of that particular event is what I have been told. I had a suicide attempt which obviously failed, I was grey and they couldn’t find my blood pressure and were having a hard time finding a pulse. I should not have been conscious but I was talking to the emergency staff quite coherently. I became a guest of the local psych ward until they could sort out what was going on.

By the time I was diagnosed with my brain tumour I had been on antidepressants for 5 years. I was weaned off them in the 12 months after my brain mate made itself known.  

Fast forward to 2011

I have not been on antidepressants for 10 years. When I came home from brain surgery I had been told I would be put on antidepressants if I showed the appropriate signs of ABI. That concept terrified me so I hid the terror I was experiencing as much as I could.

Fast forward to July 2014

On Monday I came home from Uni and I was ok. All of a sudden I broke down. Everything was too hard to comprehend, cope with, make sense of, understand, and feel.  I was sobbing uncontrollably. I couldn’t find and upside to anything. I have been trying to be positive about things in my life that bring me joy but I just don’t have it in me anymore. I have withdrawn from all forms of social media.

This isn’t just about grieving.  I have been allowing myself the space to do that.

I don’t know what I want to do.

• Do I defer Uni until next year? But then I may/will fall into that sea of depression and not WANT to go back.
• Do I want to continue with Science and head for that brain tumour research?
• Do I go with neuro counselling/psychology?
• Do I try something else like business or finance?
• Do I go and get a job and give it all away?
• I don’t know what I do and don’t want to do.
• If I just get a job will I ever want to go back to uni?
• If I ditch science will I regret it?
• If I stick with science and find out I just don’t get it enough to do research it is so much more wasted time.
•  It is the same going in any other direction.
• If I am doing something I am not passionate about will I just wither and die inside?

What AM I passionate about?

I feel like everything is impossible. Life will continue to go downhill. Kim won’t find a new job. We will have no car. If Kim’s neck injury prevents him from working how will we cope? I know we wouldn’t make it in any income I could manage to drag in. Let’s face it, I have the current skills but my experience is out of date (Brain tumours kind of suck like that). May be I could get a job at Coles, woollies or Maccas. That isn’t going to help much. Is there really any point at all?

Why did the universe decide to throw us back on to struggle/the world is shitty place to be street? Is this just how things will be forever? Why try?

I don’t have the mental, emotional or physical energy to keep anyone else afloat. I can’t find the words anymore. I can’t find that piece of me that can do that. I have a ‘care’ nerve a million times longer than the circumference of the world and I wish I didn’t and I am glad I do and nothing makes any sense.

Fear not! I am not going to go and try to knock myself off. This brain is a mighty expensive. Today is the first time I have really ‘listened’ to music while awake. I have heard it but not listened to it... there is a difference. ‘Usually’ I have music playing all day. I sing with it, I feel it, breathe it. It is a part of me. I have music playing while I sleep as it soothes me.

Photography leaves me cold. Picking up my camera doesn’t really cross my mind even though it sits next to me on my desk. When I have taken photos (last weekend) I couldn’t get into it. I didn’t have the passion to do it... consequently they pretty much sucked.  Photos that suck do not inspire me to try again for now.

I want crawl into a hole and not come out. I don’t want to crawl into a hole and not come out. I want to be able to share all of this with my friends to help ease the pain. I don’t want to burden them with the pain and brokenness. For now, I cry at/with Kim and I blog when I feel I can.

The only things I have read have been Uni notes and mostly they don’t sink in. I’m flat. I’m a bit (lot) broken. For now that is just how things are.

I have made appointments with my disability officer, my student success advisor, physio, psychologist and GP. 

Yesterday I went to Uni again, different course. I was fine through the lecture. I got out and headed to the assistive technology lab (individual computer room for impaired students) to do some study, I’d booked it for a couple of hours. I went in, the screen said it was loading... and kept saying it was loading…. I rebooted it, go to the same point. If froze again. I went and asked for help at the computer assist desk. Someone came in with me, did the same thing I had done and guess what. It did the same thing again. I was told they would put in a report for repairs. I said that I had booked for another session tomorrow (today) and was told they didn’t know if it would be fixed by then. So, I went outside and burst into tears.

This morning I had to go and have a fasting blood test done. With the right timing I could make it to my 9 am lecture. My lecturer told us yesterday that he did not know if he would be in. I knew I had booked the lab for after the lab as well. So I had a couple of options. #1 Go to uni, have the lecturer be there and the computer running. #2 Go to Uni have the lecturer turn up and the computer still down. #3 Go to Uni have no lecturer and the computer running. #4 Go to Uni have no lecturer and no computer.  #5 Stay home and have a ‘mental health’ day. I’ve opted for #5.  Uncertainty, changes in plans and general disruption are things I can’t seem to manage right now.

I know this is a lot to take in. I know it is a wall of text and most people if not all will just give up trying to read it. If you have made it this far, I thank you for your endurance.

I wish I had something else to tell you. All I have right now is this.