Yesterday was my 39th Birthday. Today am 1 year 11 months post op. This year (2013) marks 10 years since I was diagnosed with my tumour and 2 years since my surgery (next month). Every single month I think long and hard about these posts and what I have learned. Sometimes I start writing without really knowing where I am going to go with it or end up. The whole process can be interesting all by itself.
Saturday night, my youngest brother and I managed to pull off the most amazing feat in the universe! No one in history has ever been able to surprise dad. We had been planning it since August without him figuring it out and we pulled it off! We did have to do some pretty devious things like setting up a P.O. box, setting up an new email address and buying a new mobile phone aka the bat phone. The last few days before the event we kept almost dropping the ball and had to come up with some speedy cover ups on occasion. It was completely worth it to see his face when he walked through the door. He had an absolute ball catching up with family and friends after the initial shock.
I had an amazing time on Monday with my husband and my youngest son seeing “The Hobbit” and going out for dinner. There were of course “Birthday Eve” gifts as well. Yesterday I went to Tiger Island with my Dad and our old neighbour from Canberra. It was simply stunning. I have never been so close to a tiger before. They are so regal and strong. The last few days have been a bit of a whirlwind. I haven’t really stopped since before Christmas so it is nice to be able to put my feet up and relax for a while.
I am still raising funds for the Cure for Life Foundation http://www.everydayhero.com.au/julia_robertson_7 I have been “putting my money where my mouth is” and contributing $20 a fortnight. I also made a bunch of donations for family and friends for Christmas.
So the purpose of this blog was originally to help me track where I have been, what happened when and follow my own progress through this healing process. On Monday I wrote myself the following letter…
Next month will be our 2 year anniversary of our brain surgery. I know it has been tough on you and that sometimes I may have pushed you a little too hard (a lot) . We are still going through to see where our limits are but I'm sure we'll get that sorted out soon. This year I'll try much harder to not push you quite so hard. We have a big year this year, you me and our brain. I'm going to give you a bit of break for the Run in March. We'll take our time with that one and make sure you are ready to go. You've been fantastic relearning all those things that were forgotten. I know there are still some things that aren't running quite as smoothly, we'll just give you some more time. There is no race to be better.
Leggies you have done particularly well this last year in spite of or perhaps because of being pushed pretty hard. Hips I know it’s been hard for you but the visits to Torquemada seem to help get you back on track eventually. Left arm, you have worked SO hard the last year to get back to what you were. Neck, I know we've had or differences and I am really happy that we seem to have ironed out a lot of the uncomfortableness in our relationship.
Brain, Yes you are part of the body even if you sometimes think you are a separate entity. You have healed very very well! I know there is still a way to go yet but we'll get there in the end. I am so very proud of all of you and the special efforts you have put in to get us where we are. We have many years ahead of us so let’s keep it going forward.
Love Me ♥ “
I sometimes wish I had known more about the challenges I have faced post op. I wouldn’t change my mind about having the surgery if I had known. I spent 8 years fighting for my life and fighting to have this surgery. I was very seriously running out of time. While I sometimes get frustrated or need to have a wee whine about the things that are annoying me, I still feel that it is all a very very very small price to pay to be alive.
I think sometimes it takes something catastrophic for us to realise just what is and is not important in life. There are things we think and feel are crucial and we find out that really they aren’t. I no longer feel I must prove myself to anyone. I have no tolerance for negative people and don’t feel that I have to keep them in my life. Life is far too short to spend it trying to make everyone else happy and accepting other people’s negativity and unhappiness in your life. Don’t wear it. It is not necessary.
I watched an episode of a series the other night; one of the characters had an experience of dying and in subsequent weeks and months had great difficulty remembering what had transpired. It became apparent that what had happened to him after he had died was vitally important and had been made inaccessible to him for a reason. I don’t feel that there is some great earth shattering reason behind my brain bleed or my memory loss but I have to say I really did Identify with him.
It can be difficult to explain and describe the processes you go through after brain surgery. Everyone is different and experiences it differently but there are certainly similarities. I have found myself having long discussions with my dad about what he experienced with his stroke and afterwards. We have quite a few shared experiences in that regard. There are also a number of people in our survivors group when have had similar experiences to mine and it makes it just that much more reassuring that it isn’t just me or that I am somehow weird or may be even crazy. When reality turns on its head repeatedly in the early days it feels very much like you may be going mad. It is also quite frightening.
The end of January I am back to school! First semester I have Biology (1&2) Chemistry (1 &2) General and Applied Science (1&2) and Pure Mathematics (1&2). It is going to be interesting so see how I go with all this. All I can do is give it my best shot.