Two impressive strong and capable women who despite the disparity in their age, country of residence and upbringing, apparently have a similar transport preferences if somewhat divergence choice of chauffeur and attire!!

In the picture above Sue is en route to her third radiation therapy session. One to go tommorrow. Today has continued the upward trajectory of alertness, mobility, bodily function and appetite while pain levels are still OK. We had a good planning session with the doctors again this morning with some tweaks to medications and then active discussion about what needs to happen in order for us to get home early next week. All seems reasonably achievable at this stage. The possibility of a final trip 'down south' is now back in active discussion, though far from resolved.

A few photos tell a bit more of the story of the last couple of days

Doing 'laps' with the physiotherapist

 Cuddling flowers received from Tessa

 

Proactive 'name retraining' for staff

 

Weapons of mass disruption!

 

As the sun rises on Day 7 in the hospice, there is a slightly cooler breeze moving the trees and grasses outside our room - enough to chock the door to the veranda open and let the air and 'nature noises' in for a while.

Sue had her first of 4 consecutive days of palliative radiation therapy yesterday. The radiation itself is painless, though the process of getting there and back, and the need to hold an unnatural immobile 'stretched' position for about 15 minutes, brought its own discomfort. The bonus was the 'outing' away from our room. It is amazing how one can appreciate and savor in one context, the very things that go unnoticed and unappreciated in another - a changing 'view', a spatter of raindrops, a variation of terrain, wafting smells, familiar locations and different faces.

The radiation session went as planned and was without any surprises, though I did remember to be impressed by the technology and the skills of those operating it, and thankful again for the access we have to it. I took a couple of photos of the radiation room and the control room (below). Mitchell made the observation that it looked like the Stargate portal (if you are not a nerdy type, that is a 'gate' that allows instantaneous travel across the cosmos - obviously science fiction, at least for the time being!). I have included an image of the Stargate portal below. I guess I see the general similarity, but I am glad that Sue was just zapped with high-powered xrays and returned to me and not removed bodily to join a meeting between Tok'ra and Goa'uld Sytem Lords on planet Revanna!

Things are proceeding okay and the pain and 'dopeyness' levels are adjusting slowly to an acceptable balance. We are working on getting all bodily systems functioning acceptably, and mobility issues improved. When we get all that sorted, we will get back home. At this stage, the agreed target is Monday/Tuesday next week.

There is not a lot else to report other than that a new environment brings a new set of people who are apparently unable to read/say Susanne (soo-zaan). We are again peppered with all the variants reported in earlier blogs with the addition of something that sounded like 'Shizayne' - but that might have been an issue of 'accent'. The best one yet is the (unnamed) person who managed to call us Sandra and David Bates! It would be difficult to get it more wrong than that......

Lucky that we are secure in who we are and amused, rather than offended, by such errors. 

One of the questions often asked of a patient/guest/inmate(?) in the hospice is "Are you comfortable?" or "What is your level of comfort?" In most cases, the assumption is that pain and comfort have an direct inverse relationship - when pain is up, comfort is down and vice versa. I guess that this is simplistically true, but it also shows how the meaning and understanding of the word comfort has changed over time. Today we tend to think of it predominantly in terms of freedom from pain and distress or even prosperity and luxury.

The word comfort comes from two Latin words con ("together") and fortis ("strong"). The combination means "strong together" or "strengthened by being with".

I have to say that I prefer this understanding of comfort even though it is often at odds with popular usage. I suspect that is it also more faithful to the scriptures as evidenced in Psalm 23:4 where is says Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

It is another one of those exquisite paradoxes - we can experience great pain or distress, or be facing significant hardship and challenge, but know great comfort at the same time. Sue and I are understanding this more and more as each day passes. What a joy it is to be secure in the comfort of the Lord, and the comfort of strong loving and supportive relationships with family, friends and even 'strangers'. We are indeed comfort-able - able to be strong together. What a privilege it is to live smack bang in the middle of yet another paradox!

In case you are wondering, things are somewhat challenging at present both physically and emotionally. It seems clear that it is sensible to stay in the hospice at least for the coming week while Sue has four days of palliative radiation therapy starting tomorrow. We are still working with the Palliative Care doctor and hospice staff to strike a balance between pain and lucidity. We are not there yet. However, Sue has just managed an assisted shower, hair wash and a few sips of coffee before slipping back to sleep from all the effort. This is a significant move forward.

Quote of the week: If Sue has her dose of morphine reduced, does that mean she is getting less-phine? Thanks Jim, we have been cackling about that on and off since yesterday!

Yours, in rich and mutual comfort.

Thank you to all who have expressed their love and support to us over the last couple of days. The ability to travel together via blog comment, Facebook private messages, texts, emails, Facetime, Skype and phone calls is wonderful. We are also deeply aware that we (and others impacted) are being supported through prayers, conversations, acts of kindness and general mindfullness.

Community builds rich and deep as we commit to carry each other in our hearts and minds - and occasionally let them know that we are doing that. We therefore take the opportunity to let you all know that Sue and I talk about and pray for each of you - by name if we know you are sharing our journey, and also as a 'group' of sojourners that encompasses all of you. You are a gift to us, and the least (and often the most!) we can do is serve you in prayer as you proceed on your own path through life with all its joys and challenges.

Club Hospice is proving to be a stunning resort venue. There almost nothing that you can't do, or get, or be. Nothing is too much trouble it seems. You can:

• Stay up as late as you like
• Sleep in as long as you like
• Take a nana-nap anytime
• Order cooked breakfast in bed
• Have a bath in bed (if you really want to!)
• Shower with your spouse (or friendly nurse)
• Have as many visitors as you want at any time of the day or night
• Have your pets visit you (cant work out the logistics for our pond fish!)
• Bring in your own coffee machine and pods
• Watch whatever you want on TV
• Play whatever music you like
• Enjoy 'in-room' birdwatching
• Have as much salt or sugar in/on your food as you like
• Drink alcohol (they even have a happy hour 'Jolly Trolley' that comes around each afternoon)
• Smoke (outside on the verandah of course)
• Lock the door and (if you are capable) have intimate.... conversations....

So far the only thing that we have tried to do and been told off about was to use a hot water bottle!! Go figure?

Medical Update

Summary: Sue's pain levels are significantly lower now and are not spiking as much as a result of movement, position or eating. Last night was the best night of sleep she has had in months. This morning she is largely 'pain-free' when in bed (at least when compared to recent levels). Right now, this has come at the cost of her being very drowsy and, at times, a little dissociated. She appears as if she is 'semi-sedated' at times, though that is not the aim or intent. The next step is to fiddle the drugs and dosages to find a better balance between pain and alertness such that something akin to 'normal life' can be resumed, even if in a modified way. However, the break in the pain now is most welcome and the 'price' is acceptable while she is under direct care.

For those with a medical or pharmaceutical background, or relevant lived experience, Sue is currently 'enjoying' an astounding cocktail of drugs including:

• Morphine subcutaneous via pump
• Ketamine* subcutaneous via pump
• Morphine (up to hourly) by subcutaneous injection for breakthrough pain 
• Fentanyl subcutaneous injection
• Methadone 
• Pregabalin
• Dexamethazone
• Haloperidol
• Nexium

* Yes, Ketamine is the same drug that is often called 'horse tranquilizer' and is distributed illicitly as the 'party drug' Special K (not to be confused with the cereal!!)

All in all, we are well satisfied with where things are, and are heading. We spent some time first thing this morning recounting how grace-filled our lives are. This is no false gratitude, forced positivity or foolish delusion or denial. Life is very very good.

We read Psalm 3 together in a wonderful moment of lucid praise soon after waking. Among the verses that spoke loudly to Sue were:

But you, Lord, are a shield around me, my glory, the One who lifts my head high.

I lie down and sleep; I wake again, because the Lord sustains me.

The Psalm finishes with the line, may your blessing be on your people. Sue drifted back to sleep soon after, repeating those words in a whisper - may your blessing be on your people, may your blessing be on your people.

We therefore take up that phrase, that invocation, and join in saying to you and those important to you,

May God's blessing be upon you this Easter.

As I write David Attenborough's documentary Life is on the TV. It is a veritable feast of unbelievably crisp and clear images (many in super close up or super slow motion) of insect life underscored by David's distinctive hushed tones. In telling their stories, David invites us into the often amazing life journey of creatures that we either no nothing of, never give a second thought to, or dismiss as irrelevant to (or even an annoyance in) our life journey. The butterfly's life is clearly not all flitting from flower to leaf to twig in a flutter of beauteous color in order to delight us humans. Life for the butterfly can also be surprising, challenging and a demonstration of strength and perseverance though ultimately fragile and beautiful. Perhaps there is more in common with humans than we might first think!

Today was a day of surprises in a week of challenges for us. We pray that we met the challenges with strength and perseverance whilst treasuring it for its beauty and fragility. In the last medical update we mentioned that Sue was to have a further CT Scan last Thursday and that management of her pain was still 'a work in progress'! On Tuesday morning we met with the Palliative Care Team again and further adjustments were made to medications with hope and (a measure of confidence) that things would improve pain-wise. They also recommended that we consider A week of radiation therapy for the sole purpose of pain relief. We then met with our Oncologist to discuss the results of the CT Scan, the increasing adverse impact on Sue of the chemotherapy, and the possibility of radiation therapy.

The CT Scan revealed that the primary abdominal tumor is increasing in size in spite of the chemotherapy. It is now 'about the size of a fist'. In addition to being connected to the stomach lining, it has infiltrated the abdominal wall and the musculature around the left ribs. It may also be connected to the outside of the colon. For good measure it is also putting pressure on the kidney. All these areas is replete with nerves so, in a classic piece of understatement, it was observed that "it is not surprising that you are experiencing high levels of pain". Good to have one's experience validated so completely!! Given this new information, and the escalating side effects, it was an easy decision to cease chemotherapy immediately (and permanently) so we did not proceed with the cycle scheduled for that day. It was actually a great relief.

We looked forward to an improvement in pain levels due to the changed medications (increased dosage of methadone and substitution of another opioid analgesic liquid, hydromorphone, for the oxycodone). Unfortunately his was not to be. In fact it proved to be a backward step that (we now believe) coincided with an increase in the severity of the pain. Things got so bad last night that we needed to call the Palliative Care after hours hotline. Further significant dosage increases overnight did not help.

This morning we had a scheduled consultation with a radiation oncologist. While we were at the Cancer Centre, the Palliative Care Team arrived to talk to us. They discussed various options and considerations but first wanted to rule out perforation leading to peritonitis (caused by leakage into the abdominal cavity). Next thing our surgeon arrived at the Centre to examine Sue and further review the CT Scans. Talk about feeling amazingly blessed and special. We sat in the one spot and had three sets of specialists come to us within two and a half hours and all without appointments or advance warning. This is akin to a miracle!!

The upshot of all this consultation was that Sue and I are spending a special intimate Easter Weekend away together at 'Club Hospice' at Royal Darwin Hospital. What a gift! We have a lovely large room with big windows looking out onto bushland. There is a private verandah, BBQ, in-room TV, an extensive DVD library, and includes all meals and free parking. How much would you expect to pay for this? $1000? $800? No, it is ABSOLUTELY FREE. Better still, you get $50 in vouchers for the local Coffee Club and all the drugs you want (well, Sue does!). This has got to be the deal of a lifetime. How lucky are we?!!

The doctors have 'started again from scratch' and are currently administering morphine subcutaneously (under the skin) by pump at a slow base rate, augmented by 'shots' as required. The idea is that by the end of the weekend they will have developed a regimen that provides acceptable relief on an ongoing basis, which will then be converted in to a selection of tablets or fluids that can be taken orally at home.

  

Oh yes, I almost forgot...... radiation commences on Tuesday and will be repeated daily through to Friday. If all goes well this will shrink the tumor and reduce pressure on surrounding organs etc thus reducing pain levels further. It takes 1-2 weeks after administration to take effect though.

We pray that your Easter will be as blessed, relaxed and special as ours promises to be. 

Yours in the journey.......

Some of you may not know that Sue's maiden name was Ewing. She was thus S. Ewing until she married. The name proved prophetic and while she stopped being S.Ewing in 1980, she has continued SEwing (and knitting and crocheting and 'crafting') right up to today. In fact, the desire to sew has been among her strongest drives over recent months. It is one of the few things that has had her focusing and persevering beyond the pain. This was often to her physical detriment but always to her mental/emotional benefit.

On Thursday she finished a quilt for Lauren and Mitchell, made from cloth panels inscribed by guests at their wedding reception, and fabric used in decorations (bunting etc).

It was a labor or love, and an exercise of joyful perseverance! The 'next thing' (and the one ofter that) are already well advanced in planning.

The news cycle in this week has been replete with homages, retrospectives and reportage focusing on the life of Malcolm Fraser. Inevitably, his now famous truism "Life wasn't meant to be easy" was oft-quoted. To many, this is read as a harsh and critical phrase akin to the modern "Stop complaining and toughen up". Today I learned that Fraser took this line from George Bernard Shaw's 1921 pentateuch of plays Back to Methuselah. Intrigued, I sourced the text of the play online. Truthfully, it is nigh on incomprehensible to the likes of me - one who is without classical (or indeed any) literature education (in stark contrast to Fraser!).

However, it is evident that Fraser took only the first part of the text. The full text is wonderful and worth committing to memory, a sticky note or the fridge door. It is:-

"Life wasn't meant to be easy, my child, but take courage: it can be delightful"

Here, in its fullness we see a 'double truism' spoken gently. It is not a strident criticism delivered harshly at all. Sue and I want to attest to truth of Shaw's words. Life will never be without hardship and challenges. It just won't. We will all suffer, and some will suffer greatly. Sometimes the suffering flows from our actions and choices - other times we are absolutely without fault or contribution. But for those who are willing to meet hardships with courage (which is always born of hope and faith however understood) life can also be full of delight. We are living that precious paradox every moment of every day - and loving it.

An example (of which there are a plethora) is Sue's description of chemotherapy days. It is certainly not unreasonable to think of cancer and chemotherapy when seeking a context for the truism life was not meant to be easy. However, when asked about chemotherapy days Sue's (truthful) response is along the lines that "it is really quite a lovely time and I quite look forward to it". Why? "It is a bit like a date. We spend a day together, close together. We talk and touch. I get pampered. People fuss over me. It is restful and a pleasant change from running around for appointments." In short, it is rather delightful!

We live in a 'both-and" world where two apparently inconsistent things can be true together. As the apostle Paul wrote in his letter to the church in Corinth when reporting about his own suffering::

I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

 

Medical Update

Among the delightful 'medical' things so far this week were:

• Monday: Sue becoming delirious from the pain medication and whatever else was going on in her body (quite amusing but a little worrying). Attempts to use food supplement (protein) powder in palatable ways!
• Tuesday: Increase in severity of mouth ulcers (lips, tongue, palette, throat) making eating and speaking a challenge; Visit to Cancer Centre for blood tests, fit of nausea and vomiting.
• Wednesday: Chemotherapy all day. Continued weight loss. Ulcers worse. Feet starting to peel.
• Wednesday evening: First use of Lignocaine Viscous - an ingestible anaesthetic gel that is swished around the mouth then swallowed. It numbs the mouth and throat prior to eating but also renders talking almost impossible (quite amusing) and swallowing difficult.
• Thursday: Worst night of sleep for quite some time (won't detail the reasons). Very early start for visit the GP followed by CT Scan.

But Sue continues to meet each moment with courage, faith and hope. She allows me the joy of tending to her needs and finding ways to allow her to love me practically as well as emotionally.  We laugh. We cry. We get a bit annoyed or short with each other. We apologise. We forgive. We live. We love deeply. We delight in the confidence we have in who we are individually and together under God.

There is NOTHING hard about any of it! Carry on delighting..............

 

"I am amazed and grateful about how good life is - even though it sucks, it is an amazing blessing." - Sue Bateman

 

A few weeks ago when we were together with all our kids, they were preparing dinner - each doing a task. Sue could see that Callum was standing at the kitchen bench working with some 'greenery' (Basil, as it turned out). She asked him what he was doing, expecting an answer along the lines of 'making a salad' or (as would have been more accurate in this case) 'preparing to make pesto'. Instead, Callum answered "picking leaves from the tree of life"! I suspect that he was seeking to be funny rather than profound. He was both. 

Upon reflection I realize that our family is inclined to create our own 'quirky sayings' and that many take a similar literary form to Callum's. A couple I can bring to mind are: Suck the marrow from the bones of the day and Make a selection from the smorgasbord of opportunity. 

So I issue a challenge to you all. Can you contribute some more pearls of wisdom in this same general form? Can you Add an apple (or banana) to our fruit bowl of quips. Be funny or profound, thought provoking or absurd......

As an encouragement to your creativity, we are genuinely offering a (modest) sur-prize that will be mailed to the winner. We will publish the compiled list of contributions and announce the winner (chosen by Sue) in week or so. Go ahead and browse the library of your mind and contribute to the fun.

Enjoy.

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........

 See you somewhere in the vortex!

We meant to post this a while ago (before the onset of ennui!).....

A family wedding in Adelaide provided on opportunity for some enjoyable narcissism. The lure of the camera got Sue up and out of her wheelchair (walking and standing were difficult at the time) and looking vivacious and sparkly. Public opinion is that I look better without hair but Sue pulls off the whole 'masquerade thing' quite nicely! Much fun to be had in the midst of the challenges.

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!)

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!

How much things can change in just 24 hours (or so)......

Yesterday was a pleasant Autumn day with long periods of warming sun in West Gippsland
Today is a cold wet windy and (wonderfully) miserable day (still in West Gippsland)

Yesterday we were surrounded by our kids and partners on the last day of our annual family holiday
Today we are alone again as 4 have returned to Darwin and 2 have returned to work

Yesterday at midday we were sitting in the Harvest Kitchen in Jindivik enjoying a gourmet lunch
Today at midday we were at home still in our pajamas (but enjoying our second coffee of the day)

Yesterday Sue was still in considerable pain and barely functional for much of the day
Today Sue's pain is much better controlled (thanks to a change to Morphine as her base pain medication)

Yesterday the prospect of travel back to Darwin (2 hour car ride to airport then check-in, four hour flight etc) was overwhelming
Today all things seem manageable!

Yesterday God was sovereign and his love and care for us all was well evident
Today that hasn't changed at all!!

Wednesday's chemotherapy treatment was 'as expected'. Anticipating the possibility/likelihood of further days of debilitating pain, we decided to opt for the District Nurse to come and remove the chemo pump this afternoon rather than making a 60+ minute trip back to the Cancer Care Centre. As I write, Sue is sitting up, knitting, joking, talking, engaged and looking pretty darn good. How embarrassing! I have asked her to try and look a little more frail and distressed again when the nurse comes!!

UPDATE: They got Sue's name correct this time (evidence below) so we thought we had finally cracked it - then the doctor called her Susannah! What is it that is so hard?  The now constant refrain to all is "Just call me Sue!"

 

The last few days have been ones of (physical) distance and (family) closeness.

The eight of us left West Gippsland at 6.00am Friday morning and drove to Adelaide arriving about 7.30pm. En route we squeezed in a detour to McKenzie Falls in the Grampians for a bushwalk (for some) and a picnic (for all) AND a surprise rendezvous with Sue's younger brother (a dairy farmer near Mt Gambier) in Bordertown.

The weekend was a 'further flurry of family'. A wedding on the Bateman side on Saturday followed by a picnic with Sue's extended family on her old 'home ground' (Mylor SA) on Sunday.

Monday arrived all too quickly for the drive home. It was an enjoyable and important journey, perhaps almost a pilgrimage? It was tiring for us all, but incredibly taxing for Sue who, as usual, endured the considerable physical discomfort (and at times debilitating distress) with little complaint or demand (apart from a suggestion that we abandon her to a motel room in Horsham....).

Once again we we give thanks to the God who sustains and protects, and who blesses medicos and pharmacologists with scientific knowledge and skills in their respective fields. We could not have done it without them.

Was the trip worth it? ABSOLUTELY! Would we do it again? NOT IN A HURRY! We are recovering today (apart from a blood test) before chemotherapy again tomorrow.

Happy days!

It has been lovely to have 'our adult family' together here in Victoria. This is the first time we have been 'away' together since Lauren and Mitchell married. Our time in Melbourne was enjoyable but a bit confronting as the kids (and we) adjusted to the reality of Sue's slowly decreasing capacity to 'be the sort of Mum they are are familiar with' - that warm, funny, lively, hospitality-oriented, shopping-ready, walk-all-day, enjoy-the-family-and-love-them-to-bits sort of a gal.  With increasing pain levels and decreasing energy, many of these attributes have fallen away, are less evident, or are now expressed differently. Importantly, the first and the last attributes remain unchanged or even enhanced. God is good.

On Monday, after seeing the Lion King the night before, Sue was not able to leave our apartment and spent much of the day in bed. Whereas once we enjoyed our kids (and their partners) on family holidays by 'being in the thick of it' with them, we are now experiencing the joy of hearing them interact as adults, make and execute their own plans, and work out 'the wrinkles' as they go along. There is a strange and deeply satisfying feeling that arises when we hear our kids 'bubbling' out of the elevator into the corridor and through the apartment door after an enjoyable night out together. So too the deep contentment of just 'hanging' about together.

Sue's limitations have certainly changed the way our time together has unfolded. It is less free-flowing and more measured. The range of possible activities that all of us can do together has reduced. Some things just need to be done differently. A case in point was Tuesday's trip to Harbortown at Docklands (huge collection of outlet stores, cafes etc, and home of the Melbourne Star ferris wheel). For Sue it was only possible because she had access to a free wheelchair. It really was a 'free-wheeling shopping trip'!

Yesterday we saw the local GP again and we have agreed that Sue's pain medication needs to be further increased. We are seeking a balance that brings Sue sufficient release and freedom, but doesn't phase her out too much. This is a challenge. There seems little doubt at this point that whatever the chemotherapy may or may not be doing, it has yet to improve the pain levels around the site of the stomach tumor.  We suspect that this means that it has had little if any positive impact (yet?). 

I have been thinking a bit about pain recently. I was always aware that there is 'purpose in pain'. It is an alert from the body (an organism) to the person (a conscious being) that something is not right and action or care needs to be taken. When it works this way it is an essential protective mechanism that serves the body and the person well. However, once we move into the realms of chronic pain, this changes. The pain then ceases to be primarily protective and becomes its own form of sustained attack that saps the body, mind, soul and spirit and wears you down.

As you know, I am prone to strange thought processes and whimsical notions (that is a polite way of describing 'strange thinking'). I have been imagining 'chronic pain' as a conversation between body and person - much that might be had between a parent and demanding child. Perhaps a bit like this:

Something is wrong (pain).

Thanks for letting me know - I will see a doctor.

It is not fixed yet (pain)

Thanks for telling me. I know what the problem is now.

It is not fixed yet (pain)

Yes I know. I have some medicine now. That should help.

It is not fixed yet (pain). Can you get more medicine?

I am doing the best I can right now.

You don't seem to understand, something is WRONG (pain)

I know it is. I can feel it. Complaining constantly doesn't help.

SOMETHING IS WRONG (pain)

Yes, and the doctors are working on it with me.

THAT IS NOT GOOD ENOUGH (pain)

It is the best we can do at the moment.

HEY, HEY, ARE YOU LISTENING TO ME. YOU HAVEN'T FIXED ME YET (pain)

I can hear you, but it is not helpful at all, it is just noise now

THAT IS JUST NOT GOOD ENOUGH (pain)

It has to be 'cos I can do any more at the moment

IT IS TIME YOU TOOK THIS SERIOUSLY!!! (pain)

(sigh) I am, but I am tired. You are wearing me out.

(Menacingly) Ha, I am just getting started. You can't ignore me. I can go on forever!! (pain)

Please don't

Then FIX me!! (pain)

I can't. I am sick. I am tired.

FIX ME FIX ME FIX ME (pain)

Oh SHUT UP and let me sleep!!

SLEEEP? You have got to be kidding (pain)

Sue has clearly moved from the place of being/looking 'surprisingly well' to being/looking 'appropriately ill'. She tends to walk with her hand supporting her side and bent over a bit depending on the pain level. Yesterday when we were browsing in the Town and Country Gallery in Yarragon, the proprietor approached Sue and asked her if she needed a glass of water and a chair because she looked pale/frail. It was a beautiful act of awareness and caring, and not the first time this question has been gently asked by strangers in Yarragon shops. However, coupled with the demonstrated care is the confirmation that 'all is not well'.

All things considered, Sue continues to do remarkably. We have planned a country drive and lunch out today. Tomorrow is a big drive to Adelaide for a wedding. That will be an interesting and insightful test for Sue. There was a suggestion (I am not saying who made it) that we could just drug her up to the point that she only comes back to consciousness as we approach our destination. What a kind and caring family we have!!

Through it all there are smiles and tears, cherished moments and confronting times. Things we would change if we could and others that we will protect at all costs. We try and receive and live in each moment, giving thanks in all things, and looking for the particular 'sweet spots' in each day. Last night we shared a meal all together in our cottage home, cooked by our kids form the produce of Tessa and Jim's garden. We lazily talked and planned and laughed and breathed each other's air. Bliss.