As I sit and type it is already Thursday early evening. Where has the week gone? I have a theory that there is a physical/scientific phenomenon as yet not fully explored that, once fully understood, will show that there is a critical number of medical appointments that can be attended in a week. Above that, there is a wrinkle formed in the space/time continuum in which time, energy and memory is sucked, never to be seen again......

As I said, it is just a theory, but I have no memory of Monday!

On Tuesday, Sue an I went to see Territory Palliative Care (part of the NT Health Department) for the first time. The primary motivation for doing this now was to try and get on top of Sue's severe pain, but we also recognized (as did the Oncologist) that it was 'about time' to take this next step anyway. We were quite relaxed, even eager, going in. We were relieved, thankful, content and hopeful as we exited.

We spent over an hour with a specialist Palliative Care doctor and Clinical Nurse/Case Manager. They spent the first 15-20 minutes asking about us, our relationship, our kids and family, our faith, our work history. 'Medical stuff' was barely mentioned in that time. Sue and I felt that they 'got us' (our journey, our priorities, our approach, our sense of humor, our view of life and death) pretty quickly. In short, they saw us as people within our circumstances - not an illness, not a problem, not a mere receptacle for medical attention. We warmed to them both almost immediately.

When we got to the medical stuff, there was the inevitable, necessary and helpful discussion about Sue's condition and the challenges it presents. We viewed scans together (better views than we had had before) and talked openly and forthrightly together about the range of ways things could unfold from now on. The doctor confirmed, perhaps even reinforced a bit, that while the liver tumors seem essentially dormant, and the clearing of the bowel so well is to be celebrated, the peritoneal tumor and its breaching into the stomach is "a nasty piece of work in a nasty place". The 'nastiness' has many elements. The possibility of rupture, with serious consequences, is real. The area around the tumor is packed with nerves, hence the severity of pain. It affects desire and ability to eat thus affecting weight and condition. The list goes on.

After talking a bit about 'end of life issues' we moved to a most helpful exploration of better options for pain management. To cut a long story short, in addition to her already pretty hefty base dose of morphine, Sue is now also on low dose of methadone. Apparently methadone is particularly effective in many people for relief from nerve pain. I thought all pain was 'nerve pain' - apparently I was wrong.... go figure! They also approved a considerably increased dose and frequency of oxycodone to treat 'breakthough' pain not suppressed by the base medications. When we expressed a concern that, while relief from debilitating pain is a most worthy aim, rendering Sue a 'pain-free zombie' at this stage is undesirable!! Other than the impact of the pain, Sue remains well (with her context). We were assured that aim is to find the balance so that Sue can be freed to engage in life to the full extent of her capacity as the cancer progresses. This could include further travel to our cottage and to see family if all goes well. We affirmed that we can certainly work with that goal!

Jump ahead to today -- the change to the medications (while still taking full effect) has already had remarkable results. Overall the pain levels are significantly reduced and Sue is 'back' and re-engaging more freely and hopefully with each moment.  I am at a loss to describe how different Sue is when she is not having to use all her energy to just 'endure'. She looks better, initiates and sustains conversation, makes plans and thinks ahead, jokes irreverently, embraces warmly, praises freely and loves exquisitely. If today is any indication, she has also rediscovered her desire to visit Spotlight, sew and go to the Outback Bakery in Fannie Bay for a pasty and a bun. That exercise just about did her in and was followed by some top-up medication, a cuppa and a decent nana-nap - but hey......

Back to Tuesday after the Palliative Care consult: Blood tests at the Cancer Care Centre (first time for a trainee cancer nurse taking bloods via a port so it took quite a long time). Substantial destocking of the pharmacy as script were filled!

Wednesday: Chemotherapy all day (Cycle 4 - old hat now) and home with the pump attached. 

Today: See above

Friday: Pump removal

Next week: More blood tests (Tuesday), further chemotherapy infusion (Wednesday), CT Scan (Thursday)

And there is that wrinkle in the space/time continuum again....... and there we go........

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 See you somewhere in the vortex!