Hi Sandra Hubby was on tablet form of chemo for the 2 doses he took, the leg issue caused an absess in the lung which is now thankfully gone, but no chemo until it totally heals. we have our next mri in august. my youngest son lives in wondia so yes it is a very small world some days. we travel to toowoomba for treatment and to see doctors. long term stays hubby prefers greenslopes in brisbane he has made some amazing friends in our stays down there. 3 of August hmmm i think that is our next appointment in toowoomba. we see Jefferson Webster. who are you guys seeing? Nic ... View more

sorry for the wait for the reply, i've been catching up on some home maintence, oiling the deck :D. GBM wise hubby is fine, he was on long term dexamethasone, which in a way caused a fall (because it takes away the thigh muscles) and he had just had his first chemo does after the second tumour was removed; low imunity caused a small scratch he got when he fell to go septic. a month in hospital and home again he is still very week and needs me to be around 24/7. the ups and downs of this you just have to take each day as it comes. we are out near Kingaroy about 2 hrs northwest of bisbane. How is your son doing? Nic ... View more

Hi Sandra My partner has had this, but right hand side.(left side of the brain is where the tumours grew) after the first tumour was removed it happened every now and then. it got worse again when the second tumour was growing. his right hand would stop working then just decide to work again. we spoke to different people about it and the best we came up with was it was the brain retraining and finding a dead or missing pathway. the brain would then try a different pathway and it would work again. hope this helps, Nic ... View more

Thankyou, We have at least had good news this time from a short stay in hospital all the added complications from my hubbies leg going septic from a small scratch then the ensueing lung issues when the infection traveled to his lung causing a gretefruit sized absess have now all nearly gone much to the Drs disbelief. So we are home again and Brucie is slowly rebuilding his strength. Life goes on and we take each day as comes cause another day is another day and i hope to have many more. ... View more

Hey Maya, yes the small things count, and what was hopes and dreams before this journey started seem now to have changed to getting to the next birthday or christmas, mowing the yard or at the moment Brucie being able to get down to the yard on his own (waiting on a ramp to start being built). some days my daughter seems more grown up than i am and will aproach questions straight out that at times i can find it hard to face. She is still a happy bubbly child most of the time but like the adults involved; she does have days where her fears show through, or a small thing will make her cry, her friends at school find these times hard to deal with and can tease her through not understanding but she is at a small school, and we have some fantastic teachers who keep me informed. Brucie is on clonazepam for siezures after trialing a whole big range this was the one the he found easiest to take, it is one that our Dr gaurenteed he would not have a seizure on unless his levels became to low. He has only had one seizure since the big one that showed the tumour was there and it was a massive one. After travelling 6 hrs in one day back and forth to the big hospital in Brisbane. we now split the trip over a few days so have not had any issues. i do suspect he has mild black out seizures at times but the are so fleeting i am unsure. We were also told no chmoe to begin with and would look at it when the tumour regrew, after the 2nd one was removed in feb this year they sent us off to start, i had major concerns over health issues as Brucie was not well ( from at the time minor issues) and the Dr said no we want to start him now. Brucie had one weeks does of temadol; Bang the minor issues were now major issues, and we have just returned from a months stay in Brisbane hospital, with "NO Chemo" stated by his lung doctor. It will kill you. So the waiting again to see when a new tumour pops up and just take each day as it comes, I'm just happy we have another day. ... View more

Hi Maya No we live is a small area so not a lot of help we have wonderful neighbours who help out heaps, I still have some freinds who drop out to see us, one has just finish a similar journey with her partner so thankfully i do have someone i can chat to who understands the issues. Hubby has been retired for a while due to a parachuting injury in the army, he is nearly 43 and yes reclusive is what we have now both become after his leg went septic from a small scratch from a fall. we have a 12 year old daughter who is now to old for her young age with all she has been through. Brucie does not suffer head aches until there is a new tumour; i think its more from pressure. Doctors could not understand that as he didn't have migranes before he was diagnosed or after. He was taking ibrufen which seem to help but it is also a strong anti inflamator (stoped now after meds were changed). The leg issue has caused more problems than the tumours he is at the moment bed ridden, i attend all his care needs even down to shaving, not to many men let thier wives near there throat with a razor. he was on long term dexamaethasone, this caused the iffection to accelerate causing absess' in right leg and lung (grateful size) so off the dex and home from a month in hospital he is slowly getting stronger; off the dex means he now has no apetite, and gets grumpy when he knows he has to eat. he had done 1 lot 5 days of chemo in May which unfortunately added to the leg issue. but after the absess in the lung was found and treated it has left a huge pocket, so no chemo for the forseeable future. Blood clots in the lung from the infection now put him on hepron shots. All hubby wants to do is be back on his feet and mowing the lawn, one day soon i hope. ... View more

Morning Maya I have just joined the group and your post came up in my search, my husband has anaplastic oligodendroglioma, he was diagnosed after a massive seizure in april of 2010. He has just had his second tumour removed in feb this year. he has partial right hand body paralisis due to his tumours being remove from the left of his brain. His tumours also are coming back in the dead space. please feel free to chat personally if you don't want to do public posts. ... View more