"Not everyone knows what to do."

My in-law has recently completed their first round of treatment at Fiona Stanley Hospital (FSH) for pancreatic cancer. The medical care that was received was fantastic, however, I believe some parts of the journey was both distressing and frustrating. 

My in-law is a very engaged Aboriginal person from a country region. They were a very long way from home but fortunately, was able to stay with family during treatment. They spoke very openly to me about some of the parts of care that I believe caused distress. 

Firstly, they returned to Perth early this year for an appointment where they met with the Oncology Team and I believe the plan was for 6 weeks of Radiation and Oral Chemo. As the next appointment was 2 weeks later, to prepare my in-law for the radiation, they travel to Albany to visit family there, rather than travel home. 

When my in-law returned to Perth, the team had decided they might change the plan and then proceeded to run more tests. At the end of each week, my in-law had an appointment with the specialists which they started to call 'Bad News Friday'. As my in-law said, the staff at the hospital were all happy it was Friday and they were winding down for their weekend but for my in-law, it seemed the appointment almost always brought the bad news that they then had to mull over all weekend. It took another 3 weeks to finally decide on a plan. 

The first week of Chemotherapy went well and was told to come in early the following week for a blood test. As a diabetic patient, my in-law regularly has a blood test and when they do they are always told to fast. No one has ever explained what fasting means so my in-law and all of their community assume fasting means no food or water from midnight. They assumed they needed to do the same before the blood on the morning of Chemo. I was sure this wasn't the case so managed to convince my in-law they needed to eat and drink but it seemed they were still quite dehydrated, which I believe, made getting the needle in at the Chemo Unit, difficult. It may seem like a really simple thing but my in-law wasn't given anything in writing so made the assumptions based on previous experience. 

The other part of the journey that both my in-law and their partner found disappointing, was the Aboriginal Liaison (ALO) staff. They asked the Cancer Services Team who let them know where they were located. My family made the effort to go and see them but they felt like they were inconveniencing the ALO staff. As they said, they are very fortunate they have good family support in Perth but they know lots of other people who don't. 

As I mentioned at the beginning the medical care that was received was second to none, but there were still lots of very frustrating parts of the care.