Brain Tumour Survivor

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 Post subject: BACK AGAIN
PostPosted: Wed Sep 05, 2007 5:48 am 
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Joined: Wed Feb 21, 2007 9:57 am
Posts: 7
Location: BRISBANE, AUSTRALIA
HI EVERYONE,

WELL WHERE DO I START. SINCE THE RECURRENCE OF MY HUSBANDS TUMOUR ITS BEEN GO, GO AND GO. HE'S HAD 6 WEEKS OF RADIATION, 5 WEEKS OF CHEMO (TEMOZOLOMIDE) AND WAS HAVING MONTHLY CYCLES OF CHEMO UP UNTIL 3WKS AGO.

THE RADIATION AND CHEMO DIDN'T AFFECT HIM TOO BADLY BUT IN THE MEAN TIME (OBVIOUSLY BEFORE THIS ALL STARTED) I BECAME PREGNANT FOR THE SECOND TIME.

EVERYTHING WAS GOING SO WELL UNTIL HE HAD A SEIZURE ABOUT 3 MONTHS AGO. WE THOUGHT THIS WAS ALL DUE TO THE RADIATION (SO WE WEREN'T TOO WORRIED ABOUT IT). THE NEUROLOGIST INCREASED HIS DOSE OF TEGRETOL AND IT WAS ALL GOOD.
THEN LAST WEEK HE HAD ANOTHER SEZIRE (OUT OF THE BLUE), WE PUT IT DOWN TO STRESS AT WORK. THEN ON THE WEEKEND HE HAD ANOTHER TWO SEIZURES, NOW I'M STARTING TOO WORRY.

WENT TO MEDICAL ONCOLOGIST ON MONDAY 3/9/07 AND WAS TOLD THAT THE SEIZURES ARE NOT DUE TO RADIATION, IT LOOKS LIKE THE TUMOUR IS GROWING AGAIN. I AM NOW 30 WEEKS PREGNANT AND AM BASICALLY FRIGHTENED, WORRIED, ANXIOUS AND SO ON!!!!

HAD AN MRI SCAN ( I WORK FOR RADIOLOGY) THAT DAY AND RESULTS ARE NOT LOOKING GOOD. THE TUMOUR LOOKS LIKE ITS MOVED UP TO EITHER A HIGH GRADE GLIOMA OR GBM IV!!!

WE ARE GOING BACK TO THE MEDICAL ONCOLOGIST TODAY AND ARE FINDING OUT WHAT OUR OPTIONS ARE. WE HAVE BEEN TOLD HE COULD HAVE ANOTHER LOT OF CHEMO CALLED AVASTIN BUT IT IS NOT COVERED BY THE MEDICARE SCHEME, SO THEY'RE WOULD BE A HUGE OUT OF POCKET EXPENSE OR MORE SURGERY. HE WANTS TO HAVE SURGERY AND I AM SO SCARED ABOUT THIS, SECOND OP AND HE HAS ALREADY LOST THE USE OF HIS RIGHT LEG FROM THE KNEE DOWN - NEXT TIME HE COULD BE IN A WHEEL CHAIR.

WAS JUST WONDERING IF THERE IS ANYONE OUT THERE WHO HAS BEEN IN A SIMILAR SITUATION TO US? ANYONE WHO HAS SURVIVED THIS AND WHAT THEY DID, WHO THEY SAW (IN BRISBANE) AND JUST THEY'RE OVERALL HEAD SPACE.

IT IS SO HARD HAVING THIS HAPPEN TO SOMEONE WHO IS SO YOUNG (33YO) AND HAS SO MUCH TO LIVE FOR (WE HAVE A 19MO AND ANOTHER ONE ON THE WAY). I STRUGGLE WITH THIS EVERYDAY AND NO ONE UNDERSTANDS WHAT I'M GOING THROUGH. MY PARENTS HAVE BEEN SO GOOD TO US BUT I CAN TELL THAT THEY REALLY DON'T KNOW WHAT TO DO OR SAY. MY FRIENDS DON'T KNOW HOW TO HANDLE THE SITUATION AND I FIND THAT I'M COMFORTING THEM. EVERYONE SAYS THAT I'M SO STRONG BUT I FEEL SO WEAK AND CONFUSED. MY HUSBAND IS MY PILLAR OF STRENGTH AND HE'S ALSO HAVING TO DEAL WITH THIS AS WELL.

I THINK I HAVE WRITTEN ENOUGH.

SAM


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 Post subject:
PostPosted: Sat Sep 08, 2007 2:38 pm 
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Joined: Fri Sep 07, 2007 5:19 pm
Posts: 10
Location: Sydney, Australia
Dear Sam

This is my very first posting on the site, but have been watching, looking and reading since my husband was diagnosed with a Grade III Oligoastrocytoma in mid July.

He had surgery to remove as much of the tumour as possible.Our surgeon says around 80% was removed.

He is now 2/3 way through his radiotherapy, but has had to have a week off from it as he was back in hospital after multiple seizures.

It is hard to know how to cope. All I can say that is that from reading on this site, and speaking to quite a few health care professionals, everyone reacts differently to treatment, and there are no definites in any prognosis. I know this doesn't always give comfort, as all we want to hear at this time is that if you do this this and this, you will have this much time, or it will beat the tumour. There are no guarantees with this horrible disease. What I do know though is that after the anger, resentment and horror subsides, we all need to come to a place of quiet acceptance that the future may not be what we planned, and make each day really count.

It is also really important to ask lots of questions, so that both of you really know what's going on. Ask about side effects, costs, and therapy that can improve deficits in movement/speech after surgery/seizures. We found after the initial surgery it was really only our efforts with physiotherapy that got an arm working again that had lost movement and strength after the surgery. The physio in the hospital was limited in what they prescribed, and the time that was allocated. My husband was discharged from hospital with no real "plan" other than radiotherapy to start 2 weeks after surgery.

Enjoy your children, and stay positive. Attitude counts for so much. Have you heard of Charlie Teo - google him on the net - he can give a 2nd opinion on further surgery if you are considering going down that track.

I hope this helps -


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 Post subject:
PostPosted: Mon Sep 10, 2007 11:15 pm 
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Joined: Mon Sep 10, 2007 10:19 pm
Posts: 6
Location: melbourne
Dear Sam,
What a hard journey we find ourselves travelling. My heart goes out to you, what a mix of emotions you must be.
Just take it a day at a time. You friends who haven't been through it will not understand. Interestingly my friend who has been the most support for me has lost her Mum. But prior to cancer she wasn't my most supportive friend.
I am sorry that you are both so young and going through this. My hubby is 47 and I am 40 but I feel so much older. He has a GR4 GBM of the brainstem. Docs give him 12 months, he has had surgery, radiation and chemo. He was diagnosed on the 5 July.
It has been a tumultuous ride as at first he was only given a few weeks to live and we had to tell our 6 children aged 7-15 what was happening and it felt we had such little time.
Russell tends to sleep a lot and has been so very tired. We are hoping he picks up a bit as his radiation is finished. He is very unsteady on his feet andis basically 24 hour care at the moment anyway ,. Who knows what the future holds. We truly are living each day as if it were our last. I only pray that Russell can get well enough to enjoy some time with the kids.
I am happy to chat anytime. I'm new to this site so I am not sure if we send private messages . But I truly believe we need to be able to support each other on this journey. Anita


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 Post subject:
PostPosted: Tue Sep 11, 2007 3:54 pm 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
Hi Anita, All,

post as freely as you like, or use the private messages if you think it appropriate. I personally think the more that is posted the better as you never know who you might help out with information you never knew you knew (if you know what I mean!).

It is the worst of times and the best of times, you do get an incredibly new perspective on life and what is important. I found friends I never knew I had, friends that just disappeared, and many that just couldn't come to terms with what we were going through and so avoided us.

One of the golden rules for me was never letting thoughts of tomorrow, and what it might bring, rob us of today. Easier said than done but worth remembering, especially when told of a prognosis or diagnosis.

Cheers and best wishes to all,

Ross.


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 Post subject:
PostPosted: Wed Sep 12, 2007 5:11 am 
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Joined: Wed Feb 21, 2007 9:57 am
Posts: 7
Location: BRISBANE, AUSTRALIA
THANKS FOR YOUR THOUGHTS TRACEY AND ANITA. I DON'T KNOW ABOUT YOU, BUT SOMETIMES I FEEL LIKE I'M THE ONLY ONE IN THE WORLD GOING THROUGH SOMETHING LIKE THIS - ITS GOOD TO BE ABLE TO CONVERSE WITH PEOPLE IN A SIMILAR SITUATION.

I HAVE SO MANY PENT UP EMOTIONS AT THE MOMENT AND AM TRYING TO KEEP A HOLD ON THEM. MY BIGGEST PROBLEM AT THE MOMENT IS ANGER - I'M ANGRY AT EVERYTHING AND EVERYONE. I KNOW THIS IS NOT GOOD FOR MYSELF OR THE BABY, BUT I JUST CAN'T SEEM TO HELP IT. I'M LOOKING FOR ADVICE ON HOW TO DEAL WITH THIS IE. COPING MECHANISMS!!

ANYWAY, BETTER GIVE AN UPDATE. WE HAVE GOTTEN A SECOND OPINION FROM DR WALKER HERE IN BRISBANE AND HE HAS TOLD US THAT SURGERY IS THE BEST OPTION. THE ONLY PROBLEM BEING IS THAT IT LOOKS LIKE BRETT MAY END UP IN A WHEELCHAIR. HE WILL ALSO USE GLIADEL WAFERS AND HE MAY END UP HAVING MORE ACCURATE RADIATION (STEREOTACTIC) IN THE FUTURE. BRETT WANTS TO ATTACK THIS THING AGGRESSIVELY AND ITS LOOKING LIKE IT MAY HAPPEN IN A COUPLE OF WEEKS. I KNOW ITS THE BEST OPTION FOR LONGEVITY, BUT WHAT ABOUT QUALITY OF LIFE. WE HAVE 2 WEEKS TO ORGANISE EVERYTHING AND WE ARE FEELING QUITE OVERWHELMED AT THE MOMENT.

DEEP DOWN I DO REALISE THAT IT IS THE BEST OPTION BUT ITS WHAT WE'RE GOING TO LOSE THAT I KEEP THINKING ABOUT.

ANYWAY I THINK ITS TIME TO GO.

SAM


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 Post subject:
PostPosted: Thu Sep 13, 2007 6:30 pm 
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Joined: Fri Jun 08, 2007 6:53 pm
Posts: 21
Hi Sam,

I am very sorry to hear of yours and your husband's situation.

I had a brain tumour removed from the posterior fossa part of my brain on the 1st of March this year. One day i went to work, and that evening i was being admitted to the high dependancy neurosurgery unit at the hospital after collapsing at work.

i can relate to what your saying in that i have been through a lot of the emotions that you are experiencing. Anger, and fear of an unknown future and depression.

i can't really offer you any practical advice i'm afraid. i still have a lot of the feelings you describe along with some others! We recently found out my partner is expecting our first child so i can relate to your situation there also.

All i can say is that i think the advice Ross has posted above is pretty sound. All the best.

Richard


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 Post subject:
PostPosted: Wed Sep 19, 2007 9:28 pm 
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Joined: Sun Aug 19, 2007 5:30 pm
Posts: 7
Location: Kempsey
Writing from a aptients perspective but I think I understand what you must be going thru. Am experiencing a little of the same now that my Oligoastrocytoma has recurred. Stayed with my son last week between the MRI and Neuro appointment and the Oncologist and wondered will I get to see the grandkids grow up, why bother doing all those projects around the house, etc. The first time (5 1/2) years ago I did lots of meditation for the first time. Wasn't a believer or an out there person but can't emphasise enough how much it helped to deal with anger, depression, etc. I was doing it not to try and cure but to help me deal with all the "things" in my headspace. And it worked. Well helped a lot.

I was lucky enough a few years ago to do a stress management class with Dr Lyn Barrow. He wrote for one of the womens mags a long time ago and opened the first stress management clinic in Syd in the 70's. My GP also has a Pshyc background and training. From the two of them I understood that by meditating for even 5 mins a day you learn and train your brain to turn off. Let all the chemicals that pass thru the brain each day (and theres lots) settle to their correct levels. It was hard and it takes practice but it can work to help manage all the fluctuating moods.


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 Post subject: GOOD NEWS!!
PostPosted: Sat Sep 22, 2007 1:55 pm 
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Joined: Wed Feb 21, 2007 9:57 am
Posts: 7
Location: BRISBANE, AUSTRALIA
EVERYTHING HAS HAPPENED SO QUICKLY - I'VE FINALLY GOT SOME TIME TO SHARE THE GOOD NEWS.

SINCE THE LAST TIME I POSTED, THE DR PHONED AND SAID THAT HE COULD SCHEDULE THE OPERATION FOR 17/9/07. DIDN'T HAVE TOO LONG TO THINK ABOUT IT, SO WE WENT AHEAD AND DID IT. THE WEEKEND BEFORE WAS A BIT DEPRESSING, IE HAVING TO DO ALL THE THINGS THAT NEEDED TO BE DONE BEFORE THE BABY WAS HERE (IN CASE BRETT COULDN'T DO THEM) - SO IT WAS GO GO GO.

MONDAY WAS PROBABLY THE SECOND WORST DAY OF MY LIFE BUT ONCE I HAD SPOKEN TO DR WALKER THERE WAS SUCH RELIEF.

THEY GOT 90 - 95% OF THE TUMOUR WITHOUT MUCH LOSS OF MOBILITY!!!! I SAW BRETT IN ICU AND THE FIRST THING HE DID WAS SHOW OFF - MOVED HIS ARM AND HIS LEG. WE COULDN'T BELIEVE IT.
THE NEXT DAY HE WAS MOVED TO THE WARD AND HE SHUFFLED TO HIS WHEELCHAIR WITHOUT MUCH HELP.

MORE GOOD NEWS ON WEDNESDAY, THE PATHOLOGY CAME BACK AND IT LOOKS LIKE THERE WAS A LOT OF RADIATION NECROSIS (WHICH WOULD ACCOUNT FOR THE INCREASE IN SIZE) AND THE TUMOUR CELLS THAT WERE FOUND WERE STILL OLIGO GRADE II. WILL BE STARTING TEMODAL IN ABOUT 1 MONTHS TIME AND HE IS STILL ON ANTISEIZURE MEDICATION.

BRETT IS NOW HOME AND RECOVERING. ALTHOUGH WE STILL KNOW THAT THERE IS A LOT OF WORK AHEAD, WE NEVER EXPECTED THIS GOOD NEWS. WE ARE BOTH SO ECSTATIC!!!!

THANKYOU TO EVERYONE WHO REPLIED TO MY POST - THIS WEBSITE HAS HELPED ME BY TALKING TO OTHER PEOPLE WHO ARE IN THE SAME SITUATION. MY ONLY ADVICE TO NEWCOMERS IS GET SECOND OPINIONS AND ASK PLENTY OF QUESTIONS. DOCTORS ARE ONLY HUMANS TOO AND THEY UNDERSTAND YOUR PLIGHT.

ANYWAY MY SON HAS JUST WOKEN UP AND I NEED TO GIVE HIM A HUG.

SAM


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 Post subject: Your good news
PostPosted: Sat Sep 22, 2007 5:00 pm 
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Joined: Fri Sep 07, 2007 5:19 pm
Posts: 10
Location: Sydney, Australia
Dear Sam

I am so happy for you. Sometimes its good for things to happen quickly so you have little time to dwell on them.

Its fantastic Brett is doing so well, and I know such a relief to you to have him back "whole".

It is so amazing that someone can recover so well after brain surgery isn't it.

Enjoy this special time together, and nurture each other. You've both been through alot.

Tracey


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 Post subject:
PostPosted: Sun Sep 23, 2007 2:17 pm 
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Joined: Fri Jun 08, 2007 6:53 pm
Posts: 21
Thats fantastic news Sam - I am so happy for you and Brett!

Richard


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