I am a 47 year old mum of 4 and was diagnosed with a brain tumour after several grand mal seizures in July 08, initially I was told it was a Meningioma and would require a craniotamy and all my troubles would be over WRONG!!!! I had the surgery at John Hunter in Newcastle and woke to my neuro saying bad news! you have something else Ill see you in a few days, after pathology and seeing my arrogant neuro was told i had a grade 2 Astrocytoma and to see him in 6 weeks. I had no clue what was going or let alone anyone explaining to me what was in my head. I returned to Neuro 6 weeks later to be told ( dont be too hopefull) I cant operate as it would be too dangerous so I found my angel Neuro at RPA in Sydney who did 100% recection in Jan 09 but I developed a bone flap 5 weeks later and was flown from my country town by Air Ambulance to Rpa for emergency surgery where the flap was removed and had a drain inserted for 1 week to drain all the infection from my dura which was scarred in the process, I was sent home to wait for the infection to clear with a huge hole in my head and needed to wear a stack hat for 7 months till i had reconstructive surgery to replace theflap with a resign substance. I suffer daily migrane, am on anti sezuire meds and heavy duty pain killers, anti depresants. Meanwhile all this was going on I went down the drain of dispair, I thought my life was over and spent weeks crying but needed to pull myself together for my kids who where having a real hard time trying to understand what was going on. Im off for my MRI next week and neurologist, Neurosurgeon appointments in Sydney to see if any re-occurance but i feel quite well apart from pain, Im aslo chemo sensitive so only radiation left for me. My life has picked up dramatically, I no longer cry, im starting to do the things i love and recently had a wonderful family holiday. Im hear to stay for awhile and wont give up in a hurry I love my life too much.
Thanks Warrior woman
Hi warriorwoman ... wow and good for you for not accepting what you were first told. My heart goes out to you for all you have gone through and still would be going through. Welcome to the site and hopefully you will gain from sharing your experiece.
@ Nicole ... you are another one that has been through the mill and i take my hat off to you. I always read about your experiences with mouth wide open and a lot of omg's thrown in. I can relate re being the country patient and also the financial disaster road this disease puts us on.
Thanks to all for the warm welcome and pm messages, Im still trying to work out this forum so bear with me as im not the best at computers, not long now till I head off to Sydney for the dreaded Mri but I have a good feeling about this one. Hopefully my Neurologist can reduce some of my anti sezuire meds, Im currently on 300mg Tegretol M/N, 1mg Clonazepam M/N, 40mg Oxycontin M/N, 5mg Endone 3times a day, 50mg Zoloft Morning, so if they can bring me down I wont feel like a darn Zombie.Ive just spent the evening at my 9yr olds talent night and managed to stay awake and also enjoy myself.
Back from Sydney with rather good results, MRI showed some enhancement but due to all the scarring I have my neuro concluded that I was ok for now, I also had appointment with a new neurologist who took me off all pain meds so I have been withdrawing for nearly 2 weeks ( not much fun ) I will be cutting back on my anti-seizure meds in 3 months which scares the crap out of me as I do drive but will not be able to if I do have a seizure, then will have to wait 6 months to be able to drive which is real hard living in the bush.Just trying to get my life back in some sort of order again, pay the medical bills, find a smile within my heart and let my children relax from all this crazyness.
Hi warrior woman,
My husband (33yr) has a grade II astrocytoma also. He was diagnosed in Dec 09 after a grand mal seizure. He was also told it was non-operable so he had 6wks of radiation and is currently in month 6 out of 8 months of chemo.
Its interesting to hear you say one neuro said non operable but then another neuro was able to do a 100% resection. I often wonder if we should have got a second opinion but we trusted our neuro's opinion as he has an excellent reputation (but I still wonder if maybe we should have given Dr Teo a call!)
My hubby has had terrible luck with seizures. He is on so many meds yet he still has small focal seizures all the time. We have sort of learnt to live with them now though, but I still hate them!! I am actually an emergency room nurse so I have seen plenty of seizures and illnesses but seing my hubby go through tis is just on a whole other level, it is gut wrenching.
I take my hat off to you (and others who have similar things going on) as I am amazed at what you have to cope with. Being a mother myself I cannot imagine how hard this would be for you as I find it hard enough being the carer, let alone having to deal with all the problems the tumour and treatment give you. Its funny though because as hard as it is to have kids involved in all of this, it is actually a blessing as my son is what keeps me going. I don't even think I would get up some days if it wasn't for my beautiful little toddler calling out 'mummy come' from his cot every morning. You just don't really have a choice when you have kids do you - you just have to get on with it for their sake! You sound as though you have pulled yourself out of a pretty dark place and are getting on with life which is fantastic (and inspirational) to hear.
I wish you and your family all the happiness in the world (ok maybe leave some for me and my boys! :- )
Hi Warrior Woman,
Great to meet you. I feel we have a lot in common. I have an oligodendroglioma 11/111. But as I initially presented with an combined locally invasive facial tumour to the Royal Brisbane (over the xmas period in 08)I am also a country patient. I was diagnosed initially over the first 6 weeks from anything from an aggressive melanoma (nothing we can probably do for you, as I had just had two cut out (only low grades)) to an a variety of horrible facial tumours that had mets to the brain to when they finally found that the facial tumour biopsy came back as a Giant Cell Tumour (bascially one that just eats away your face but won't kill you) then you have an astrocytoma - we may or may not remove it after we deal with your face. Then after I started showing 'neuro' signs, I didnt seizure until Sept 09, the neuro dept decided to do surgery, but at the same time the residents were slipping me cards for a private neuro surgeon as I had private health insurance and basically telling me to go private (almost warning me to). The guy in the bed next to me had your type of complications. So I discharged myself and went private, had the facial and neuro surgeries both done privately- HUGE gap fees that I am still paying off 18 months later. I do have side-effects from both surgeries - my neuro put me on drug trials initially instead of radium as I had 100% resection - I don;t still don;t know if I am 100% comfortable with my decision now that I have some regrowth. I have pain in from the facial surgery, dental problems, no smell, and could still lose my eye as well as vertigo. From the neuro stuff I have migraines, and now epilepsy with grand mals and focals since Sept 09 (6 weeks seizure free at the moment.I have to work full time (not a 38 hour week - closer to 50hours) as I own a business. Good luck with your MRI - mine is not until August this time - already starting to feel the knot in my stomach building. I am 34 and a mum of one. I know what you are saying about the drain of despair - I try and drag myself out of it - but just keep getting dragged down into it.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.