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…
“Dear Body,
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.
6 comments:
I am amazed that you managed to keep the big party, celebration and family gathering from your Dad. It is such a challenge when it is very close to where they live. We did the same type of thing for my parents' 60th Anniversary where we took them to the old historic bank they met at and even had them kiss in the vault. It had become a Tea House and the owner let us take it over for a Saturday Evening. They were amazed, surprised and Dad and Mom both cried with joy. I think you sound a lot like me. I do whatever I can and am always stretching the limits to find my boundaries. I carry all the meds and quick carb foods I need in case I crash into it. I do several times a month, but try to do it with a ring of safety practices around me. Sometimes I make big jumps ahead and become a little complacent. Then I crash pretty hard, but I'm never ashamed to say I have to stop and rest or just lay down for a while. Being realistic is a challenge because what helps me so much is being very optimistic. At the same time, that optimism can cause me issues because of the tendency to say I will try and extend myself a bit too far. I have to watch being too optimistic and am gradually learning to be realistic yet willing to stretch. Sharing my medical issues generally with most professors yet saying I thought I could keep up in most cases helped me. I made it a point to be active in discussions and always prepared. They kniew what I was like through those examples. I knew I would get seriously ill at least once and maybe twice each semester. Other students helped me with notes and professors were happy to work with me. I was able to keep up with readings throughout even when I was not able to drive the 110 miles round trip to campus. Each person has to decide on their own what the best way to handle issues like chronic and severe illness is, but handling it informally with individual professors worked out very well for me. I know you are going to be a wonderful student and an example of excellence.
Thank you so much Frank. I completely understand what you are saying, I try to make sure I have a bit of a safety bumper when I am pushing myself and an quite happy to say "I have to stop and rest now"
As always, I am happy and proud to be here supporting you! *hugs*
As always I love you to bits and wouldn't be here without you ♥
I love that letter you wrote to yourself. :)
Thank you :-)
(Your post did come through)
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