5 years *cough* months

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

5 Years 5 months

I thought that this time I would throw a bit of a timeline in. A reflection over the last 5 years by looking back at the blog posts I made at (n) Years 5 months.

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

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 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.

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