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 Post subject: My First Birthday
PostPosted: Wed Mar 12, 2008 9:49 pm 
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Location: Australia
I am looking forward to my first birthday, 12 months since my operation to debulk my 4.5cm grade II Oligoastrocytoma. My scans are stable and the future is alot brighter than 12 months ago. I am one of the lucky ones.

Highlights

Having such a supportive wife, who spent 12 hours a day with me in hospital and then gave birth to our daughter 9 days later.

Not being in pain nor suffering headaches. I know how much our quality of life depends on avoiding pain.

Returning to my gym, its my second home. Being awarded gym member of the year for my efforts. Then returning to work and having a job open after 5 months away in private industry. Unbeknown to me my work paid for income protection, which came in very handy - those bills dont stop coming.

Our daughter who I got to share the benefits of parenting with. She seems so special after all that we have been through.

Lowlights

Telling family and friends was very difficult. After about the second call, we worked out a better way to break the news and lessen the shock value. The initially MRI said inoperable grade 4 GBM - we learnt not to trust such reports in the future.

I have hemiparysis on my right side - total after the operation, but improving steadily since. This has led to three falls, but no broken bones. Another side effect has been DVTs in my legs, but thanks to warfrin appear to have cleared up.

I voluntarily sought out the authorities about driving and have been put down to a learners licence, which was diappointing.

Best Resources

No doubt about it, the book 100 FAQs About Brain Tumours. Web resources, especially virtualtrials.com have been great.

Tips

Take control of the management of your health. Perhaps because of my corporate background, I viewed each specialist as a health care provider. If I didn't get the right service, I went to see someone else. Because we had researched through reputable online journals, we knew ahead of time what to expect (or not as the case may be).

Relax and avoid panicking - very easy to say. Sometimes you just have to close your eyes and focus on your breathing. This helped when I had to wait an extra day for surgery with my arm flailing everywhere.

We never once said no to help, we weren't too proud :wink:. Success is a team sport. Recovery requires alot of physical and emotional energy, especially when you take that one step backwards.

Future

Take one step at a time. Although I am planning to go in a natural bodybuilding contest in October. I said to myself after my first one in 2006 that I would compete again and improve. I'm not a highly competitive person, so its about playing the game.

My glass is half full. If I can be a better person I'll try. I am not engaged in a fight with my tumor. I'm going to get the best treatment and continue to manage my illness as best I can. I am succeeding as a parent, husband, worker and bodybuilder - that's good enough for me.


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 Post subject: Re: My First Birthday
PostPosted: Mon Mar 17, 2008 11:18 am 
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Joined: Thu Oct 11, 2007 3:28 pm
Posts: 130
Location: Brisbane, Australia
Hello

Thankyou for sharing your recent experience with Oligo. This post will be a catalyst for many of our members battling brain tumours.

I'm inspired from reading your personal journal with it's high & lows. I pray you continue to go from "strength to strength" (no pun intended with the bodybuilding!)

Congratulations on passing your 1yr MILESTONE!

Cheers, Angie.


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 Post subject:
PostPosted: Thu Oct 09, 2008 11:55 am 
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It's time for an update

Bodybuilding

The bodybuilding contest is this sunday. So I'm looking forward to ticking off that goal. Weight training is easy compared to the dieting. That's why there are lots of big guys in gyms who you'll never see in a contest.

I got up to 75.5kg before I started dieting. I'm now 71 and applying layers of spray on tan for Sunday. I have focused on contest preparation this time and that has gone well.

Health

Things have been going really well until this morning. I had my first partial seizure since leaving hospital (16 months ago). It was on my left side - which is not good news as my hemiparysis is on my right.

My tumour crosses the corpus callosum and now it appears that the left side is starting to act up. Last MRI was ok but will see neurologist at hospital tomorrow morning. They may keep me there for tests tomorrow.

So there is a possibility that I may be entering the next stage on from Grade 2. Ironically, this may make treatment cheaper as they may count my oligoastrocytoma as a recurrent astrocytoma. I'll let you know.

Anyway, for now I'll be like Stavi (movie "The Ringer") and "I look on my bright side" :o).


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 Post subject:
PostPosted: Thu Oct 09, 2008 10:00 pm 
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Joined: Sun Jul 20, 2008 10:42 pm
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Location: North Qld
Can I say I am sorry to hear the news of the possible upgrade of your tumour. But good luck for your bbing competition. I wish you all the very best from the bottom of my heart. You are inspirational. Bbing itself is a very hard and demanding sport, to accomplish the goal of stepping on stage going through what you are is amazing! I am hoping to get my husband back in the gym, so hopefully, this will inspire him.

You know what this means now don't you? We want to see pictures of you all muscled up!

Seriously though, I am a member of an Australian bbing board, very friendly and I am sure, they would be happy to make you a member.


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 Post subject: Re: Update
PostPosted: Fri Oct 10, 2008 10:05 am 
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Joined: Thu Oct 11, 2007 3:28 pm
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Location: Brisbane, Australia
Dear Ken

I too am sorry to hear about a "possible" recurrence/upgrade. Those damm seizures! Impossible to ignore with your illness but I hope a simple/straightforward adjustment to anti-seizure meds is all that's required.

As for the Bodybuilding. Well you continue to surprise & inspire me with your tenacity & enthusiasm! I too am looking forward to the photos of you all "Buffed Up".

Thinking of you,
Cheers, Angie.


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 Post subject:
PostPosted: Fri Oct 10, 2008 9:30 pm 
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Whew! Neurologist thinks its a false alarm, he said that he doesn't believe it was a seizure as not localized.

I have been on Dilantin since the operation and he is going to help to transfer to Kepra. So this was another positive from the meeting; new neurologist.

Boy it shows you how easy it is to go from feeling good to on the verge of panic. Thanks for the kind messages.

Looks like I may have landed myself in it with the picture. I'll see what I can do after the contest. At 70/1kg don't expect me to look huge :o).


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 Post subject:
PostPosted: Sat Oct 11, 2008 6:31 am 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
Dear Ken,
By entering the contest alone youve won in our eyes , good luck !

Regards Stacy


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 Post subject:
PostPosted: Sun Oct 12, 2008 8:16 pm 
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Location: North Qld
kenobewan wrote:
Looks like I may have landed myself in it with the picture. I'll see what I can do after the contest. At 70/1kg don't expect me to look huge :o).


From a bbing point of view, I actually don't like the "huge" guys. I enjoy bbing as a sport, but the professionals are far too big in my opinion. The natural bbers look so much better. Athletic and real.

I am glad the news came back good about the seizures. Here's to continued health and lots more bbing and training to come.


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 Post subject: great pics
PostPosted: Tue Oct 21, 2008 8:59 pm 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
Hi Ken,
Great pics !!!!!!
Regards Stacy


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 Post subject:
PostPosted: Mon Nov 17, 2008 10:13 pm 
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Some good news

This months scan is showing further improvement. Nothing major but enough to keep me happy. I'm feeling better than at any time since the operation last year.

That I am still making improvements means that my first neurosurgeon may have been right about the grade 2. My latest says to expect the worst and hope for best, thinking that it is more likely despite the pathology to be grade 3. Time will tell whose right.

For now there appear to be too many risks and opportunity costs to go after the rest. But that's a good thing while my quality of life is high :o).


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