A summary of my partner's events to date;
40 year old, slim, fit and healthy IT Engineer, cycled 10km/day, non smoker, light social drinker.
Tonic clonic seizures during the night, about 1 hour after going to sleep. Taken by ambulance to Base Hospital, barely conscious.
Confused and unable to recognise loved ones, unaware of surroundings and unable to remember events.
Diagnosed as having had a stroke.
CT scan interpreted 3 different ways by 3 different Dr's, told he had/hadn't had a brain bleed, had/hadn't developed a clot, should/shouldn't be started on aspirin etc
MRI ordered by stroke specialist to determine the extent of his "stroke" reveals tumour, Stroke specialist states he knows nothing about tumours and has no idea what it is.
Phone call to my previous employer, a cardiology specialist and general physician, results in immediate transfer to private hospital and referral to see Neurosurgeon the next morning.
Consultation with Neurosurgeon. Believed to be low grade glioma (although the "low grade" later turned out not to be the case).
Surgery booked for Wednesday.
Transferred to Greenslopes, Brisbane.
Functional MRI to map brain function prior to surgery.
Partial resection by awake craniotomy, Greenslopes Hospital, Brisbane. The hospital and staff were excellent and the surgery itself was without complications and healed beautifully.
Discharged from hospital looking and feeling completely normal except for surgical scar. Taking anti-seizure and blood pressure medications.
Follow up appointment, Neurosurgeon.
Finally have a diagnosis - Grade III Anaplastic Oligodendroglioma with 1p and 19q loss.
Neurosurgeon will not be drawn on life expectancy, extent of resection or future progression of the cancer. Vaguely indicates that RT should be undertaken, indicates that he believes chemo is a waste of time.
Neurosurgeon indicates that he will direct the referring Dr to write oncology referral.
No further appointments made with Neurosurgeon .... set adrift.
Saw referring Dr for referral to oncology - he rang Neurosurgeon who assured him that the referral had already been sent to oncology by Neurosurgeon.
Referring Dr confirms what google had told us - this type of tumour generally responds very well to chemo.
Referring Dr indicates life expectancy of between 2-10 years.
No contact from oncology - rang to see if referral had arrived - no referral has arrived.
Rang Neurosurgeon about oncology referral - told by secretary that referral is to be done by referring Dr, not Neurosurgeon. Told her that referring Dr is away - reply; it didn't matter.
My partner feels completely well and normal, returns to full time work.
Referring Dr returns from holiday.
Rang referring Dr and said no referral has been done for oncology.
No histology has been sent to referring Dr, so chase occurs to locate the correct pathology company to obtain histology.
Referral immediately faxed to oncology and appointment for RT consultation made for next day! Chemo appointment made for Thursday. Finally getting somewhere!
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.