"Glioblastoma - Diagnosis to Palliative Care"

Recently I took my husband to Busselton Hospital Outpatient with a chronic headache which was soon to turn my world upside down.  We were initially sent home with a request to return the next day for a CAT scan.  Despite thinking it was overkill we did so only to be told that he had a brain tumour and needed urgent transport to Perth which had been confirmed by review by the doctors at Sir Charles Gairdner Hospital.  We raced to Perth with no clothes or any other goods to arrive on a Friday before a long weekend.  We then sat for a whole weekend awaiting tests wondering why we had been rushed to Perth if nothing was to be done.  This was the start of our nightmare experience of healthcare where nothing seemed to work for us.  After finally getting tests done on the Tuesday my husband who was not cognitively functioning at his best was advised by the doctor on his own that they suspected a meningioma, but he could go home and return the following week for surgery.  As the carer I rang and spoke to the doctor myself to try and get the true picture and this was confirmed.  We were sent for discharge to sit for half a day in a room with a number over my husband's head just to await medications which in hindsight could have been gotten by us from any chemist with the scripts. When I arrived home I read the discharge summary only to discover that the MRI had actually shown suspected high grade glioma, imagine being home in a country town on your own with your husband who was not functioning well and having that face you.  Luckily I had worked for a community care service for many years previously and had many contacts whom I could call upon, but my world was shattered.  On our return a week later we had surgery with very little availability of doctors to discuss the outcome. I raised the discharge letter only to be told they were sorry that it shouldn’t have been written, but still no discussion on the diagnosis.  

During my husband's time in the high dependency unit I watched patients being restrained regularly with restraints only loosened when visitors were there.  In my opinion I was abused by staff for being in the unit outside of visiting hours despite being told by other staff it was okay so soon after surgery and made regular complaints about the lack of communication. After three days we were sent home still with no diagnosis and assuming that meningioma was the likely cause. I however suspected the worse so was left over the next 14 days with the GP to try and prepare my husband for what may not be a good outcome.  We had our follow up by Telehealth 14 days post (I believe the delay isn’t for patient convenience, but so SCGH can have their team meeting first) with another doctor we had never met to be told that it was Glioblastoma, something my husband had never heard of and I only knew of from my previous work life.  We were given little information and only when we asked on likely prognosis were we advised that it was about 14.6 months.  The whole conversation lasted less than 15 minutes.  From there we were sent for radiotherapy and chemotherapy and whilst the radiotherapy experience was as good as it could be our experience with Medical Oncology was nothing short of uninspiring.  Only when I asked about the genetic markers was I informed that it was unmethylated, when questioning effectiveness of chemotherapy we were not given clear information and we were never told all of our options including do nothing.  'Standard of Care' became catch phrases we began to despise.  After much research which we were left to do on our own we decided to not continue with the chemotherapy post radiotherapy and advised the medical oncology registrar (again yet another person we had never met before) of our decision, travel and quality of life was our choice. We then faced the tirade of objections at our choice, discussions around the surgeon approving my husband driving again also met with disbelief and disapproval.  This was to be the way our next few visits were to go to the point of us ringing and requesting never to see the registrar again.  Six months after chemotherapy we went back for follow up with radiotherapy only to discover the tumour had returned, the next day we had yet another Telehealth visit with medical oncology only to have to tell them of the return of the tumour because they had not read the result, we were then asked what we wanted them to do.  If we had not been well read and researched we would have been left with nowhere to go.  We requested to see a surgeon to see if surgery was possible and named the surgeon ourselves after asking around for the best neurosurgeon, this time private due to our lack of faith in the public health system.  Since this time we have had two surgeries, been told by medical oncology that they have nothing to offer because we won't look at chemotherapy and been left with the surgeon as case manager.  We have now requested referral to the palliative care and a new story begins.  

Last week we had a visit from the palliative care nurse who had general discussions about palliative care, but when it came down to the issues of what was available to support me as carer when my husband deteriorates in terms of care aide and nursing support all that apparently is available in the south west is Monday to Friday nursing support.  This now means that the palliative care I have spent my life working in is not available for me.  It was suggested I could get an ACAT (Aged Care Assessment Team) despite my husband being only quite young. This seems another pointless exercise.  Not only is my husband too young to access the aged care system, even if he wasn’t, a package of care has a two year wait list and CHSP (Commonwealth Home Support Program) is not for the provision of palliative care, this is the responsibility of the health system. In the past personal care was available and equipment was able to be accessed. So where to for me, I believe I will be forced to pay for private carers to support me at a time when my income has diminished and will be a struggle till my retirement.  I am lucky enough to live in a great community that will support me, but in my opinion the current situation is appalling.  It is sad to think that services in areas like the Pilbara are better than that able to be accessed in a heavily populated South West.

So my story continues and whilst the diagnosis has been hard, nothing prepared me for what I feel are the inadequacies of a system I work within.  It seems the national standards mean nothing when staff don’t apply them and the system pays lip service to them.