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 Post subject: THIRD TIME RECURRENCE
PostPosted: Sat Aug 31, 2013 7:57 pm 
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Joined: Wed Feb 21, 2007 9:57 am
Posts: 7
Location: BRISBANE, AUSTRALIA
HI EVERYONE,

LAST POST WAS SEPTEMBER 2007 AND OPERATION HAD GONE WELL. WE HAD ANOTHER SON IN NOVEMBER, AND I TELL YOU THE NEXT YEAR BECAME A BLUR; WITH FEEDING, NAPPY CHANGES, CARING FOR A TODDLER AND MY HUSBAND, I'M SURPRISED I SURVIVED IT!

I KNOW ITS BEEN AWHILE, BUT LIFE GETS BUSY AND MY HUSBAND HAS BEEN TUMOUR FREE FOR 6 YEARS. WELL THAT ALL CHANGED ON THE 14/08/2013, I WORK IN RADIOLOGY AND HAD ARRANGED FOR MY HUSBAND TO HAVE HIS MRI AT WORK (THINKING THAT ALL WOULD BE FINE), WELL MY LIFE CHANGED AGAIN IN AN INSTANT, THE TUMOUR HAS RETURNED AND IT HAS A DIAMETER OF 2.5CM. AFTER INITIALLY GETTING OVER THE SHOCK, I WENT INTO OVERDRIVE, TALKING TO MY DRS AT WORK AND TRYING TO GET MY HEAD AROUND THE WHOLE THING. I HAD TO PHONE MY HUSBAND AND ASK HIM TO COME TO WORK AND OF COURSE HE KNEW THAT SOMETHING WAS WRONG. WE THEN ORGANISED AN APPT WITH OUR NEUROSURGEON (WHOM WE HADN'T SEEN SINCE 2009) AND AS SOON AS HE SAW US. HE KNEW WHAT WAS HAPPENING. WE HAVE BEEN TOLD THAT BRETT WILL NEED ANOTHER LOT OF SURGERY AND MAYBE MORE CHEMO AND RADIATION (STEREOTACTIC) AND THERE IS ALSO A GREATER CHANCE OF HIM LOSING USE OF HIS RIGHT LEG. WE HAVE ANOTHER APPT WITH OUR DR ON TUESDAY (AFTER PET RESULTS) TO FIND OUT WHEN HE WILL HAVE HIS SURGERY.

WE NOW HAVE TWO SONS AND WERE PLODDING ALONG NICELY WITH OUR LIFE, BRETT HAD GONE BACK TO WORK FULLTIME, OUR CHILDREN WERE INVOLVED IN SPORT, WE WERE ALL SO HAPPY, WHEN POW IT ALL CHANGES AGAIN. IT JUST REKINDLES ALL THESE EMOTIONS, ANGER, FRUSTRATION, CONFUSION AND THEN THROW FAMILY MEMBERS IN THE MIX AND IT ALL JUST ESCALATES!

WE HAVE BEEN VERY OPEN WITH OUR BOYS (7 1/2 AND 5 1/2) OBVIOUSLY IN KIDS TERMS. THEY UNDERSTAND THAT DADDY MAY BE IN A WHEELCHAIR OR MAYBE CRUTCHES AFTER THE OP, BUT WHAT THEY ARE REALLY DISAPPOINTED ABOUT, IS THE FACT THAT WE ARE UNABLE TO GO ON OUR CRUISE (ORGANISED FOR EARLY OCTOBER), GOTTA LOVE KIDS!

BRETT HAS BECOME VERY DISTANT AND WITHDRAWN, WHEN HE DOES TALK TO ME ABOUT IT, I CAN SEE THAT HIS ATTITUDE HAS CHANGED AND THIS REALLY WORRIES ME. I'M TRYING TO REMAIN POSITIVE AND OPTIMISTIC AS I THINK THIS HELPS, BUT IT DOESN'T SEEM TO BE RUBBING OFF ON HIM.

I WOULD LOVE TO HEAR FROM PARTNERS OR FRIENDS OF ANYONE STRUGGLING WITH THIS TERRIBLE DISEASE.

THANKS SAM.


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PostPosted: Tue Sep 03, 2013 11:15 am 
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Joined: Mon Dec 24, 2012 1:14 pm
Posts: 25
Location: Syd, AUS
Thanks for sharing Sam,

I'm sorry to hear that its recurred for your husband. Thats awful news. And yes the ripple effect it has on yourself and your kids is devastating.
I am a carer for my partner/fiance. I'm sure you know that it has a huge toll on everyone involved. I commend you on staying positive. Not just for your husband but for your kids. It takes every bit of you to do that and its not an easy thing especially when you've been given a negative. I hope you are getting support from other family members- that always helps. Even if its them taking care of the kids for an afternoon so that you and your husband have some good quality time together. I've found taking photos and writing my thoughts down in a journal can help.

My partner has been in hospital now for over 3 months paralyzed from the neck down. I am staying positive for him but I also have my emotional days where I can't get out of bed and my mind can't stop thinking. Sometimes I've said/thought things that I regret. But I've learnt that that's okay. We're all human. My partner appreciates that I am staying positive despite his low mood but it reminds him that he has to work forward to be with me and our life together.

I don't know if that helped but I wish you all the best.

x


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PostPosted: Thu Sep 19, 2013 7:09 pm 
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Joined: Wed Feb 21, 2007 9:57 am
Posts: 7
Location: BRISBANE, AUSTRALIA
Hi all,

Brett has had his surgery and all went well, he had a couple of focal seizures the night of the surgery but that was to be expected. Brett immediately moved his arm and leg and we both breathed a sigh of relief. Brett was then moved to the ward and then the real work began. Brett has lost some strength in his right arm and will need to learn how to write again.

We spoke to the Dr and unfortunately there were some foci of an aplastic astrocytoma in the tumour that was respected as well as radiation necrosis, so he will need to start on chemotherapy again. Bit of a shock to both of us, but we will get through this. Brett is now home and is enjoying being in his own environment, he's even talking about mowing the lawn already! Can't keep a good man down hey.

The chemo should start in about 2 weeks, so will keep you posted about this, but at the moment all is good and Brett has a very positive mindset.

Take care all.


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PostPosted: Fri Sep 20, 2013 2:13 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Hi sam

Great to hear about his positive attitude. This disease requires courage, but allows you to enjoy some good times if you are alert to them.

I'm just finishing six cycles of temodal post radiotherapy. It wasn't until the last cycle I felt nausea.

Keep up the good work!


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