May 5, 2017. It was the first day of a long weekend, my father in law was visiting and we had plans for a weekend filled with food and entertainment. My husband and I had a party to attend and “Poppy” was our slated babysitter – the kids (aged 3 and 7) were delighted. My mum and brother were in town too, a weird collision of overseas holiday planning meant that both my husband and I had parents in town at the same time. So it simply made sense to leave the crowded house and hit an airbnb in town for a change of scenery.
May 5 was a Friday morning, the kids woke early, as they tend to whenever they could potentially sleep in and my father in law, who is, by nature, an early riser was not far behind them. He had landed in Bangkok (where we live) on the previous Wednesday, after a brief break in Phuket. He had complained (in the most non-complaining way known to man) that his feet were puffy and not going down. He also mentioned that he felt short of breath. It was enough for us to be concerned, and so, knowing that my relatives sleep like the dead, we decided that Trent would walk his dad up to the hospital around the corner, while I stayed in our airbnb with the kids and waited for my mum and brother to rise. We tentatively planned to meet for breakfast as soon as they were done at the hospital.
An hour or so later my mum and brother were awake and my father in law was having tests. He arrived at the hospital at around 9am, he was admitted to ICU just after lunch. Diagnosis? Pulmonary Embolism as a result of a Deep Vein Thrombosis. Many tears were shed that day and as I sit her on May 27, I realise that not a day has passed since, when I haven’t cried.
While running the CT scan of my father in law Pat’s lungs, they notice a mass on his pancreas. They were suitably concerned so they ran further blood tests. Blood work showed elevated CA19-9 markers – his were just under 8000 (an average person’s are 0- 37). The doctors told us that there was a 90% chance it was pancreatic cancer… and not to tell Pat. Of course not telling Pat was simply not an option, so we shared the news and all grieved in our own ways.
Pat remained in ICU for three days and spent a total of 8 days in hospital. The doctor’s were great, though often contradicting each other – the mixed messages were infuriating at a time when we needed clarity. As Pat had been on holiday I busied myself being the liaison with the insurance company (who were truly amazing by the way!). At one point I received an equally disturbing yet hope inspiring call from the support team at the insurance company. They said that in a scan the previous year, cysts had been detected and considered to be insignificant enough that no one mentioned them to Pat. The person I spoke to suggested that this may be the same thing that the Thai doctors were seeing on CT scan – ie, they might be entirely benign. Equally, CA19-9 markers can be elevated for a number of non-cancerous reasons, and particularly for non-pancreatic cancer reasons. This was cause for hope, maybe it wouldn’t be as bad as we thought, I mean, maybe it wasn’t even cancer!! I deliberated on it and spoke with my husband and we decided that any hope is better than none, we shared the news with my father in law and we cried in relief that it 100% didn’t mean a pancreatic cancer diagnosis. I’ve realised these past weeks just how powerful and crippling hope can be. It lifts you up but then crushes you in the same swift movement.
Pat was able to fly back to our home country Australia, accompanied by his son/my husband 15 days after his initial admission to ICU. Then the waiting began again.
Gold Coast, Australia
By working with the Thai doctors and insurance company we were able to time the return flight home to Australia so that the ‘boys’ landed on a Sunday afternoon. Trent’s sister had already started the ball rolling in Australia and at 9am on Monday 22 May, they saw a GP for a referral. The GP, who I’m ready to crucify (for reasons that become clear later) was the same GP who had seen the scan a year ago and hadn’t mentioned the pancreatic cysts, note.. did not mention them at all.. not even to say “they’re nothing” or even “let’s keep an eye on them”. The GP was apparently dismissive of the Thai doctors and said he didn’t believe it was cancer, he went so far as to suggest that he had another patient who went to Thailand and returned with a cancer diagnosis which turned out to be false (let’s all compare apples and oranges hey?). So there’s that thing again.. hope. While I was considering this GP to be an A-grade moron, he did give even me a glimmer of hope – I mean, he was a DOCTOR, surely he wouldn’t say anything like that unless he truly believed it?
Haemotologist was later that day to address the DVT and embolism. He was less convinced, in fact, he apparently seemed a bit concerned by the numbers in the blood work and was planning to refer to an oncologist, when he found that Pat already had a referral.
That was Monday, what followed was nothing.. waiting, waiting, until Friday when he saw the oncologist. Even that week was filled with hope, Pat was home, feeling fine and recovering well from his health scare in Thailand, there were no signs of ill health. We’d done the usual investigoogling and found that he didn’t have a single symptom of pancreatic cancer, which again, gave us hope that even if it was cancer, it wouldn’t be that bad.. I mean, surely he’d have to have symptoms….. right??
Friday morning arrived, and my husband, who had until then felt really optimistic suddenly shifted and ‘knew’ that this wasn’t going to be a good day. The oncologist sounds like he jumped straight to it, to him it was clear, no need for biopsies or further tests, it was (is) pancreatic cancer. Furthermore, it’s not looking like a ‘good’ one. The cancer has decided to take the spleen, lymph nodes, and perhaps the liver, out to dinner. Bloodwork now shows CA19-9 at 19,000.
So that was yesterday. I sit here in Bangkok, my children blissfully sleeping while my husband and his dad are thousands of kilometres away in Australia (hopefully sleeping because it’s 2am there right now).
Our options are this (I say our because I think it’s so important that we all continue to work as a machine, together on this).
Chemo 1- ‘old school’ style
Chemo 2 – more modern, once a week, relatively well tolerated
Chemo 3 – more aggressive, not easy to tolerate, twice weekly
I added the last one, not because it was mentioned by the doctor (it wasn’t), but because I’ve read a LOT about pancreatic cancer in the last few weeks and I know the statistics. I also know my father in law, he’s strong and outwardly healthy at the moment – I wonder what Chemo will do to all that.
The oncologist will call on Monday we think, and update us on when Pat can get into the public system, it’s strange to think that someone who is fighting an aggressive, life threatening cancer may have to wait to start that fight, but I guess that’s the status of cancer these days.