It is coming up a week since the previous post. We are now back in Darwin and attempting to adjust to yet another variation of what might be 'a new normal' - at least for a week or two.

Last Friday we enjoyed our first experience of the District Nursing Service for West Gippsland (out of Warragul). A very pleasant, capable and efficient nurse attended our (southern) home and decoupled Sue's chemotherapy pump. This saved us a further trip to and from Traralgon (30 mins each way) which was helpful as Sue was still expereincing pain and discomfort desite the improved medication. More significantly, Sue is now 'on the books' so any and all manner of assistance is only a phone call away in the future (when we are in Yarragon of course!).

The drive to the airport and flight home was as good (or maybe even better) than could have been reasonably expected. Very taxing/tiring for Sue who still had to walk a fair distance from where we dropped the hire care to the Jetstar counter. She was pretty wiped out when we presented for 'check in' but held it together enough not to raise any questions about her fitness to fly. We had that possibility covered though, having gone to the GP and got a 'I may look like I am dying but I am perfectly fit to fly' letter to wave around if needed. I consider it $38.00 worth of travel insurance. Like most insurances, you are glad when you don't need them but at the same time feel a little miffed in having paid for 'nothing'.

It would be true to say that we were not really in a hurry to get back to Darwin. Usually, after a few weeks away we are keen to see our boys and their girls again but this time they had been with us for the previous 10 days. We were just beginning to re-enjoy the quietness and lack of 'demand' after nearly a month of visitors and co-habitants! The saving grace and motivator to be home was two 'social engagements' on Sunday. Both involved good friends who were leaving Darwin for lengthy periods on Monday. Sue held up (or held herself up) well over lunch and the afternoon. She really is quite clever at 'appearing quite well' when the occasion demands (as can be seen in the photo below). It was lovely that the guests came complete with food for lunch so we did not have to go shopping Sunday morning (and still haven't been now that I think about it!)

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Monday, Tuesday and Wednesday have been a bit of a write-off for us both. Apart from a visit to the oncologist on Tuesday, we have had absolutely nothing that demanded our attention and action this week. The combination of the preceding 4 weeks away, travel tiredness/dislocation, release from (wonderful) busyness, and a pile of waiting domestic chores (unpacking, shopping, washing, bills etc) and Sue's still significant discomfort and lethargy/tiredness conspired to create three days of ennui* that we have only managed to break out of today in any significant way. The interplay of body, soul, mind and spirit within a person and between people (especially those in very close relationship) is a truly fascinating thing to observe and contemplate. 

* [I love this word, pronounced 'on-wee' (perhaps with a pretentious little French affectation!), that means a feeling of listlessness and dissatisfaction arising from a lack of occupation or excitement. It shares a Latin derivation with the word annoy which, when you think about it, sounds quite similar. It is EXACTLY the right word to describe the last three days!]

Now to the factual medical stuff (in brief):

Pain levels fluctuate in ways predictable and unpredictable but Sue's pain never disappears. An almost constant application of a heat pack plays an important role in relief. Things are better with the new medication but we are beginning to realise that pain management is part science and part 'art'. We have an initial meeting with the Palliative Care team next Tuesday. They are the 'pain management' gurus, but it is also time to develop a relationship with them so we know each other as things progress.

The oncologist was pleased that things had gone so well with treatment and care in Victoria - as were we!  We also agreed that the side effects of the chemo (rash/itching on face, neck & shoulders, and mouth ulcers) remain manageable. He could offer no immediate specific reason for Sue's pain but acknowledged that it doesn't suggest anything very positive! He could not feel any tumor mass in either liver or stomach. We have agreed to do another round of chemotherapy next Wednesday (to be followed up with a further CT scan the next week. We see him again on 31 March, at which time we will all be a little older and there is the possibility that one or more of us may also be a little wiser!?

In the meantime, we manage the medications and try and make reasonably intelligent decisions about when to 'grin and bear it' and when to resort (thankfully) to additional chemical relief. Given all the quite graphic Gallipoli-related content on TV currently, I am more than usually thankful for the availability of expert medical care and (seemingly) endless options for relief of pain. We are certainly not 'doing it hard' by any stretch of the imagination. It is strange to think that this cancer journey too is an exercise of 'privilege' that few in the world now, and no-one in the past, has been able to enjoy. Puts it in perspective a bit.

If you have stayed with the lengthy rambling to this point, I say "Well done" - you must either be bored at work, avoiding an unpleasant task or there is nothing interesting on TV!

Love and appreciation to you all.

PS: Thanks to all those who have amused themselves and us by offering further alternatives and variations to Sue's name - Suze, Sussane, Suzzanna and even Suozainne!