Just a refresher on my approach to stage 4 cancer - something I like to call dual tracking.
Track 1 - This is the happy path. This is the path where treatment, whether it be 1st line, 2nd line or 3rd line, is successful and I get a NED ('No Evidence of Disease') diagnosis. Remember that, at least in the medium term, as a stage 4 cancer patient there is no scenario where I'll be deemed "cured", the best I can hope for is that treatment eradicates any evidence of cancer in my body.
Track 2 - This is the not so happy path. This is the path where treatment is unsuccessful and we need to start planning for an end of life scenario.
Since I was diagnosed I´ve been careful to try and balance track 1 positivism with track 2 pragmatism. It is not easy to do.
One of the things on my track 2 ´to do´ list has been palliative care planning. I had read about terrible situations where patients ended up in palliative care scenarios that they were not comfortable with - values & beliefs not aligned with their carers etc. Then, when I was in hospital after my 1st major surgery there was a patient in the room opposite mine - a young women who had been battling breast cancer for several years- who had obviously come onto the ward to die. This was not ideal for me. I could hear her family talking outside the room and I could hear her wailing inside. It was like witnessing first hand my worse fears about my own poor prognosis. I remember lying there thinking, shit I really don´t want to die in the ward like this, I need to plan my death better and make sure everyone knows what I want.
And so, I thought it was perfectly reasonable trying to plan my palliative care, however I´ve been surprised by how hard it is. For various reasons I put off doing the palliative care planning but it has been one of my projects over the last few weeks after I recovered from my last liver surgery. The system is not really designed for a ´healthy person´ (or more accurately, someone who is not on the verge of dying) to do advanced planning for their own palliative care.
I started by approaching some death doulas, asking them for general dying advice. They were great. I should say that I got some great advice in particular from Zenith Verago. I also watched a few documentaries about dying and palliative care. Not to deviate too much into the philosophy of death (I´ll save that for later, if need be), but if you´re up for something a little more on the hippy scale I highly recommend this talk from Ram Dass.
Things got tricky when I wanted to specifically identify who my palliative carers would be so I could meet them, understand the process and visit any of their facilities. I was told I would need a GP referral just to have those conversations.
My GP thought I was absolutely crazy. I struggle to believe this, but he said I was the first healthy / not yet dying person, to approach him about palliative care planning. After some convincing he provided the referrals. He also explained the normal process to me. Apparently the GP is usually quite central to that process.
What is likely to be my palliative care plan
In my case, once all my treatment options are exhausted and a decision is made to refer me to palliative care it would become a group effort - GP co-coordinating, the Sydney Home Nursing service providing any necessary in-home care (wound dressing etc), and the Neringah Community Palliative Care service managing the palliative care. Once things got too hard to manage at home there would be the option of transferring to the Neringah Hospital - essentially a hospice facility. Only if necessary, in situations requiring acute treatment, would I go into a normal hospital ward. The Neringah facility is only equipped for palliative support, not for treatment - so you would only be there if it was definitely your end.
I visited Neringah Hospital yesterday and actually saw the suites used by énd of life patients and their families. My wife came with me.
I can´t believe more people don´t do this. I don´t feel like it is in any way being fatalistic. I can be hopeful but - with very bad statistics on my likely medium term survival - I can also be pragmatic. Personally, I find huge comfort in knowing in advance what is likely to happen, to meet the people, to see the places.
So, I´m going to call my palliative care planning project finished, and store my findings in the distant mental box I use for all my track 2 preparations.