Red Sky in Morning….
Today has been a very trying day. It started out well enough… Mum had to stay home because we had someone coming around to collect stuff and they were likely to be ‘between 8am-2pm’. So I headed into Sir Charlies around 10am to see how Dad was going. I found him sitting up in a chair chatting to a lovely young woman named Emily who was the senior speech pathologist. When Dad saw me he said “Hi Poss” something he hasn’t said for the past two days… I was thrilled! This was the first verbal indication in the last 36 hours that he actually did know who I was.
Emily said she had gone through basic word forms and cognition tests to find out what if any impairment there was, and that over all his listening/comprehension was great, but that he had ‘language fluidity’ issues… in other words, finding the right words to say wasn’t as normal as it should be… but over all that was to be expected.
Emily left, and Dad and I had a chance to speak. The difference between yesterday and today was great. He was certainly able to verbalise much more than he had. I asked him what the last thing he remembered was and apparently it was breakfast on Saturday.
The Nurse approached me and said that the Doctors wanted to get Mum to sign the consent forms because they were looking to do a biopsy on Monday morning and the nurse sort of suggested that they would prefer to have the paperwork done today. So I decided to go home and get Mum and aim to be back in around 3pm….
And now the tricky bit comes…
When we got back to the hospital this afternoon, the same Dr who had informed us on the phone that they had found other doodads in Dad’s brain wanted to talk to us. Walking in, Dad was laying staring at the ceiling and wasn’t as chipper as I had seen him in the morning… I think now part of me started ramping up my adrenal glands for what was to come next.
The long and the short of it is… based on the tests they have, and the fact that they have been able to rule out any other tumours or cancer in his body… Dad appears to have multiforme glioblastoma or GBM for short. Of the three suspected tumours only one would be ‘operable’ – this is the one on the surface of the frontal lobe and the one they are going to do the biopsy on. The other two are deep and present too much of a deficit risk (ie loss of function) for them to operate….
The actual biopsy findings will take a week to 10 days to get the histology back. So until they definitively know we must work on worse case scenario. We asked what the plan of attack would be going forward if surgery isn’t an option. Chemo and Radio would be the most likely outcomes.
We, I mean I, then asked the $64,000 question… what is the prognosis like? The Dr paused.. a bit too long.. and replied the median expectancy is 9-12 months… how badly do I wish I hadn’t asked that question!
As you can probably guess, Mum is pretty well shattered about now… and I am doing my best not to be… I can only cling desperately onto a couple of things…
- They couldn’t be “sure” and there is a chance a miracle misdiagnosis will have happened.
- The two new tumours didn’t show up on the initial CT, just the MRI and we’re hoping they are smaller than the other which was described as small to start
- The median is just that… middle… and that if we have caught it early with good treatment that we will somehow dodge father time for a little bit longer!
We asked Dad if he understood what was going on and how he felt about it. His response… “Say La Vie.” I’m honestly not sure if he did truly know; was doing that for our benefit; or if he really is that calm.
Suffice to say, calm is not something in spades in our home this evening. And while we love your calls, I’m asking for a day or two just to get our heads around this and ask if any well wishes could be sent in writing via email firstname.lastname@example.org (Barb), email@example.com (Yoli)
If you want to send a card (not flowers thanks) our address is
64 Digby Street
GOSNELLS WA 6110
Love Yoli and Barb