Thursday, December 22, 2011

10 Month Brainaversary!

Things to update. I had my scan and it came back to hypolordosis and osteophytes. So no spinal surgery for me *happy dance* I will be having LOTS more physiotherapy but I can mange that. My latest round of bloods came in as well. Best bloods EVER! No cancer markers found *Happy dance again*
Have been madly preparing for Christmas which got sneaky and caught up while I wasnt looking. I have just finished the 2nd christmas cake (the first was devoured by the boys). The pudding is ready to go. Shopping is done (I think) I made a list and then promptly forgot to update it in the middle so I THINK I have everyone covered but there is a lingering doubt... the chilling thought I have forgotten someone cringe.

I made 6 million steps the other week which was incredibly awesome. It gives me a great sense of achivement. I can now start exercising properly which is something I haven't been able to do for oh............. 8 years. I have an amazing team helping me out with all of this and can not believe how lucky I am.

Have a safe an happy holiday!
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Thursday, December 8, 2011

Hiccups

I'm now sitting at about 9 and a half months post op. Since I last posted there have been a few developments. I am heading of for a scan of my neck (3 doctors I have seen so far are recommending surgery) for the profound weakness in my left arm. Tomorrow I have a blood test. Today I am supposed to be returning a call to "Synapse" the State Brain Injury Association. 
In a lot of ways I'm getting pretty frustrated with it all. I am not looking forward to or wanting to have ANY surgeries in the new future let alone a spinal surgery so soon after brain surgery. I am not pleased about being classified/boxed/classed as having "Acquired Brain Injury" either. However I have decided that I will use whatever resources are available to me to work as hard as I can to get better. However long it takes or hard it gets. I have fought pretty darn hard to get this far, I'm not about to give up now!
I made a video about my journey through brain surgery to help me remember things and keep things in order; it has helped me to do that and much more. Another photographer on the other side of the world to contact me as he is facing brain surgery himself and was inspired by my story that life does go on and that photography isn't something that has to go away; in fact it can be a great tool. I too have been inspired throughout this journey (it is not over yet) by some incredible artist and photographers.
I could not have done any of this without the support, love and help of my family and friends and for them I am eternally grateful. All these bumps are just hiccups in the road and can be overcome. Life does and will continue to improve and so will I.
Stay safe, inspired and look after each other.

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Saturday, November 12, 2011

Amazing News

I saw my neurosurgeon Dr Charlie Teo, on November 1st. He had a look at my MRI and did a check up with me. The end result is that he has cleared me. No more trips to Sydney every 6 months, no more brain scans, no tumour growing back! i have "A pristine brain" Happy happy happy days. I have my life back, I have a future I didn't dare to hope for. 
I won't be properly recovered from the surgery for 18 months to 2 years but I feel SO much better already it amazes me each day I wake up not in agonising pain. My memory is getting better too. It's like having a whole new life and I intend to make as much of it as I can. At the end of this month I am doing a trip with my father in law to Bourke, Coober Pedy and Bridsville via Lake Eyre, Warburton Grove and the Goyder Lagoon. I am really looking forward to it!
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Wednesday, October 19, 2011

8 Month Brainiversary

Yesterday was my first post op MRI. It was a bit of a challenge. First of all I am claustrophobic so I wasn’t particularly looking forward to it. When we arrived at the centre we discovered it was directly across the road from where my mother died. It was a rude shock.  I have to wait 2 - 3 days now for the results of the MRI to arrive in the mail. Those are going to be some very long days indeed.
I have been very stressed about this scan as i tis the first since surgery. I have to say I have been terrified that something will show up on the scans and I'll have to have more brain surgery. I don't ever want to have to go through this again. Recovering my memory, my self, my life over the last eight months has been a massive journey, its been an adventure and its been frightening at times.

I have been consoling, calming and attempting to de-stress myself by drowning in my photography. Playing with ideas and things I haven’t done for a while or never tried before. I am really looking forward to catching up with family and friends while I'm away and especially once the hard part is over.

I'll update more another time. Be safe, have fun and get out there and Live life.
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Tuesday, September 20, 2011

7 month Brainiversary

Tomorrow is my 7 month brainiversary!
I have continued to run around taking photgraphs though I was slowed down a bit by illness. I have been continuing with physio and have managed to get myself a week off for good behaviour. My legs seem to be working much better now, hip pain is less, messages from brain to feet are clearer! My arm is also improving.
I have in the last month managed to do my first lot of proper baking since surgery. From scratch following a recipe and I didn't mess it up. Small victories! My memory is improving though tracking time is still off and diffcult to manage. I am relying on writing things down and using automated calendars.
Life is so much better than it was before surgery. The hurdles and challenges I have been dealing with post op are a walk in the park compared with what I was living before. I am so happy to be alive and honestly value every day I have.
Next month I have to go for another MRI and then early November I go back for follow up with my neurosurgeon. We'll be spending time with family and friends while we are away and I am really looking forward to seeing them all.
We have had an odd weather pattern the last few days combined with over 200 fires which has conspired to make for a blanket of smoke over the city. It has created some amazing sunsets!

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Monday, August 29, 2011

Anniversary Weekend Away

For our 15 anniversary we went away to Hervey Bay for the weekend. We did a lot of walking around the beaches and of course Urangan Pier which is the longest wooden pier around. It has been restored to in excess of 800meters long (originally 1.1 kms)! So we walked it a few times! We went to Vic Hislops Shark Show and saw a 14 foot shark, a real one not a replica. Oh and we saw whales, and a dugong! 
We also stopped at Wild Horse Mountain on the way home. I managed to walk up the mountain in one go this time. This is the first time I have EVER managed to walk up the mountain without stopping. Not bad for 6 months post op brain surgery if I do say so myself. My hubby struggled and had a few stops along the way. The walk up the mountain is only 800 meters but its a 1:10 incline. It rises 80 meters over 800 meters. Anyway I'm pretty happy with myself for managing it.
Here are some pictures from our time away.
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Thursday, August 18, 2011

6 month Brainiversary

Yesterday was officially My 6 month brainiversary!

 

This month has so much happening! My Brothers 1st wedding anniversary at the beginning of the month. My very amazing friends wedding in a few days! I only wish I could be there with him to share it. My inlaws celebrate their 50th wedding anniversary this weekend as well. Our 15th wedding anniversary in 5 days! I wasn't sure I'd be here for it and I'm so very happy I am! We'll be away for a weekend together on our own to celebrate.  Our youngest boy selected his classes for senior and has arranged his work experience and mapped out the rest of his working life (as he would like to see it for now). 

 

I have an appointment for follow up in Sydney with my neurosurgeon on November 1st. I'll be having a new MRI done before I go.  On the way down and back (we're taking a couple of days to drive down and home) we'll be stopping to visit some beautiful friends along the way. I miss them so very very much it makes my heart ache. They were very wonderful and put us up when I went down for my initial appointment and again when I went down for surgery. 

 

I have also been offered the opportunity to do a two day flight trip in outback australia. Over Lake Eyre, out to Coober Pedy, birdsdville etc. It will be a great opportunity to take photographs *fingers crossed* That trip will be after I get back from Sydney, so EVEN more to look forward too. This has been a miraculous year and its not over yet.

 

Tuesday, August 2, 2011

Adventures!

What a huge day!
Today was the second of the days trips I went on with Dad and my Uncle.  Our First trip was to Queen Mary Falls, Daggs Falls, Carrs Lookout and various points in between. It was a massive day of 11 hours driving and walking which was absolurtely wonderful. I paid for every bit of it the following day and was completly wiped out by the time I got home but It was such a wonderful breathtaking trip I didnt mind a bit. Seems Im still not quite as "mended" as I think I am.
The second day trip Dad and my uncle went on was to Wild horse mountain and the glass house mounatins. I had to bow out of that trip as I was recovering from physio and not likely to make it up Wild Horse Mountian. As it turned out the rural firebrigage and other emergency services were doing burnoffs and having a big meet about working together efffectively so photgraphically it didnt turn out to be a great trip in the end.
Todays trip was primarily Tamborine Mountain. Starting with Curtis Falls, then the botanic gardens, some lookouts, the Bearded Dragon for a (very) late lunch and then a trip to Labrador. Another 10 hour day of driving and walking. I'm not so wiped out this time!
Today I also recieved in the mail a package from Brent at Capture Imaging. It is his absolutely stunning book "Moods of Port Stephens" if you get the opportunity to see it, please do! I spent a few days staying with our beautiful friends at Anna Bay before and after my brain surgery. It's a gorgeous area and the people are wonderful.
To add to the wonder of my already amazing day, I discovered that I managed to successfull complete my first walk challenge since surgery. So I have signed up for another one this month to see how I go and keep the inspiration going. Oh! and sometime this week or next I should hit 5 million steps since may last year when i started doing these challenges (not including february, march, april and may 2011 which i didnt count due to recoving from surgery). The June challenge I manged 86%.
I have included some pictures from the day trips below.
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Saturday, July 23, 2011

5 Month Brainiversary

Another month has passed. Time is still something that isn't sitting right with me but that's ok, everything will continue to improve with time :DIn the last month a few things have changed. I'm feeling a lot more confident in my ability to get on with things. I'm busting at the seams to get stuck back into life and have SO many things running through my head that I want to do! 
I have had a couple of set backs, first my medication hasn't changed much since last month, that is still something that can change in the not too distant future. Also we have discovered through a new set of scans that my old spinal fractures while healed, have now developed into bulging discs, arthritis and degeneration through my spine, hips and sacroiliac joints. Fear not! I have an amazing physiotherapist who is helping me get back to "normal with that as well and will be helping me to develop a plan of attack to slow down the degeneration and any further damage for as long as possible. So...... more hard work for me! I am prepared for this challenge and I feel confident that we'll do well in the end :D
Meanwhile I have some short day photographic trips planned with my dad and my uncle so that should be GREAT! I have been playing around with old photographs and playing with my camera pretty much daily since I got home. There is still a lot I don't remember but boy am I having a ball relearning my camera :D
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