Steve Miller once sang Time keeps on slippin', slippin', slippin' into the future. D'you know what, he's right!!

Three weeks have slipped by since the previous post. Where did the time go?

Sue has been basically well through this 'reduced potency' cycle of chemo. There are still residual side effects and general tiredness and lethargy, but otherwise she is indeed pretty 'stable' as the oncologist said. We go back to see him again on Tuesday, and likely into the last cycle of chemo on Wednesday.

We have just returned home from 10 days interstate - initially in Yarragon with Tessa and Jim, then in Mulgoa (Lower Blue Mountains) where Geoff had a three day work commitment. These two photos might give you a peek into what occurred in each place.

Sue enjoyed strolling in the NSW bush and struck up short but rich friendship with Brother Thomas (the donkey). We were staying at the Edmund Rice Retreat Centre run by the Christian Brothers.		Sue and Tessa had a production-line going for making bunting. The target was to cut and sew enough flags for 50 metres of decoration for Mitchell and Lauren's Engagement Party. Target met - Job done.

The results of the Sue’s most recent scan may be summarized as ‘no significant change from last time’. There is no visible evidence of additional lesions in the body or head. Amusingly,  the oncologist relayed the results of Sue’s head scan as follows – “the two scans of your head revealed that there was nothing there…”.  I tried to keep a straight face and my mouth closed, but failed!! Overall, this is a good result because the previous scan showed that the chemotherapy has been effective in shrinking the tumour and lesions, and slowing the progression of the cancer. This has been maintained and the oncologist is calling Sue “stable”. Again, I had to work hard not to utter any inappropriate comments!

There was discussion with the oncologist about stopping the chemotherapy at this stage due to the accumulating side effects and because further improvement in the cancer and lesions is unlikely. Apparently, the experience with this type and stage of cancer indicates that where the response is positive, as it has been, the benefit is usually maintained for between 8 and 12 months from commencement of treatment – after which time the cancer is likely to get aggressive again.  We are at 6 months now so there is likely a bit of breathing room for some months now.  It is all about statistics, averages and odds of course so there is nothing we can actually ‘bank on’. There are also further treatment options that can be considered in due course.

Sue has completed 6 cycles of the current chemotherapy regime – which is considered a complete course of this particular regime (Xelox). There is apparently some potential value in continuing on so long as the patient can cope with the accumulating side-effects. After working through the options, we decided that Sue would stop the major infusion (Oxaliplatin) but continue with the minor infusion (Avastin) and tablets (Capecitebine/Xeloda) for two more cycles. This should mean that Sue will not feel as ‘wrecked’ after the infusions, nor should her neuropathy (numbness and tingling in hands and feet) get any worse. Both these things are side-effects of the Oxaliplatin apparently.

Additional Cycle #1 occurred yesterday and was uneventful and much quicker too. Additional Cycle #2 will take place on 26 February. After that, and all things being equal, Sue will then have a period of rest (no treatment) and then further scans to see whether the gremlins are still hibernating or have decided to come out and play.

In short, it is all is about as good as we could hope in all the circumstances. We remain at peace with what is going on and are quick to thank God for the joys and opportunities that each day brings.

On that note, Monday 27th was a day of particular and special joy as Mitchell Ryan Bateman and Lauren Grace McElroy announced their engagement.  Wooo Hooo!

 

Sue had her third set of scans last week and this time I was invited in to see what was going on. Guess what? It is just like on TV! As an avid watcher of House MD, the environment felt quite familiar. It was even more familiar for Sue who is now so well practiced that she barely needed any instruction! All those clean white surfaces, deadened acoustics, electronics, lights, screens, clicks, beeps, whirring, sliding, spinning and a dull pre-recorded voice telling Sue to "hold your breath", "breathe normally" and "I love you" (OK, that last voice was my voice!).

As Sue reports it, it is was 'quick and painless' though slightly disconcerting when they inject the contrast fluid as it made her feel like she had wet herself. She hadn't of course.

While sitting with the operator in the control room watching images of Sue's body and head appear on the screen in real time I was struck by just how amazing the technology is, and how privileged we are to have access to it. I asked the operator whether she too is amazed by the technology?  She admitted that it is now so much part of her everyday life that it has ceased to have that effect on her.

As I watched the machine whizz around and 'do its thing' I realized that for all the knowledge, skill and creativity of researchers, inventors, manufacturers and technicians, we are still only able to see 'the physical self'. No machine can scan and display the core, the essence, of our humanity and person-hood.

For all its intricacy and profound capacity, that scanning machine was able to 'see' Sue physically in astounding depth and detail, yet at the same time was completely blind and ignorant to those unique and special aspects of Sue which transcend her mere physicality. It did not display her capacity for love, nor her tender care, nor her acceptance and appreciation of all. Neither her self-sacrifice, her creativity, or humour, or perseverance, or commitment, or faith.

The machine did not 'see' or 'know' Sue at all! That is our privilege, our joy. As intricate and amazing as medical technology is, in many ways it is much more limited than we are in seeing and knowing each other deeply and completely in ways that really matter. Surely our bodies will eventually fail, but the influence of our lives lived will have eternal impact through our relationships with others.  You can't scan that!!

[PS: Scan results in the next post!]

This blog posting signals the end of ‘the long silence’!  

The more mature (older!) of you may recall that in 1967 The Tremeloes had a Top Ten hit in both US and UK with Silence is Golden. I suspect it was popular more for its catchy chorus than any profound truth in the lyrics.

I was interested to discover the origin and history of the notion that ‘Silence is Golden’. Some attribute its origins as far back as ancient Egypt. There is repeated reference to it being but part of a longer Swiss inscription Sprechen ist silbern, Schweigen ist golden (Speech is silver, Silence is golden).

If that inscription is true in all circumstances, then in the last few weeks you have not just been getting the usual ‘silver service’ but ‘pure gold’!

Silence is an interesting phenomenon. It can be interpreted and experienced as sweet, intimate, profound and enriching. It can also be uncomfortable, accusing, confronting and distancing. Context is everything, so it is most challenging when context is absent or unclear.

Some of you have been silently (and I assume graciously and patiently) awaiting more news. Some have been politely asking when the next update is coming. Others have enquired directly about what is going on and whether everything is OK. It may be that some have assumed the worst and bought a ‘With Sympathy’ card just in case!!

Allow me to put you all out of your misery. The silence has had nothing to do with Sue’s health and everything to do with my busy-ness and choices about priority of activity. Sue has now completed the sixth round of chemotherapy. It knocked her around for 10 days but was otherwise ‘normal’.  Sue had new scans last week and we will update you on the results after our next visit to the oncologist this week.

Thank you for journeying with us – for reading, commenting, thinking, praying and caring. Your support is treasured by us. We love the fact that there is a little community formed by the blog – family, friends, colleagues, acquaintances and even strangers who are travelling with us in some way. What a privilege it is to share a bit of life with you all.

Stay tuned, the next exciting instalment is on its way. God bless.

 

"A change is as good as a holiday" or so it is said.  That may be true, but only if an actual holiday break is impossible! The last few weeks have been a welcome holiday break for us from the more recent routines imposed in response to the cancer and its broad impact in our lives. It is abundantly clear that the embrace of loving family and friends has it's own 'healing power'. Sue was remarkably 'well' all the time we were way - engaged and energized by the presence, the sharing, the fun & silliness, and even the tears.

 

Unfortunately we have returned to routine with a thud! Having arrived back in steamy Darwin in the early hours of Tuesday morning, we were off to the oncologist at 9.00am, followed by blood tests ahead of commencement of Round 6 of chemotherapy yesterday morning. It was interesting to hear the chemo nurse comment that Sue's improved blood test results and blood-pressure numbers reflected someone who had been on holidays!!

There is not much to report on the medical front. We are back in routine - infusions, tablets, appointments, blood tests etc. This may or may not be the last round of this chemotherapy regime. The oncologist is cautious regarding the accumulating side-effects and has further reduced Sue's dosages for this round. He has ordered a full set of scans (body and head) before the next consultation so it will be interesting to see what (if anything) has changed since last time.

As I type, Sue sits in stillness on the verandah, baptized in the morning sun, caressed by the already-warm breeze, staring off into the distance.... She confides that she is re-living recent experiences in South Australia and Victoria. As she wanders the trails of memory, feeling afresh the embrace of family, re-living the moments and days, her face softens, a thin smile lifts her face, and her eyes sparkle with building joy-tears. A paradox of strength and vulnerability eloquently displayed. She exudes a divinely gifted peace. Sue is at her most beautiful in moments such as this.

The cusp of old and new

of ‘was’ and ‘yet to be’

of actions past and imminent

replete with blessing and lament

life’s thread-rich tapestry 

The cusp of then and now

of ‘known’ and ‘yet to see’

of deepest joy and sore regret

of dreams fulfilled and goals unmet

mere ripples in a sea......

........of life advancing wave on wave

a cadenced journey birth to grave

no selfish gain or comfort crave

my prayer cry “All I am I gave”

Soon enough to rest

replete, complete and blessed

in God’s serenity

 

Geoff Bateman, 31 December 2013

 

In one of the favorite carols of the season, O Holy Night, there is a line that speaks of "the thrill of hope" at which the weary world rejoices.

As we come closer to the 6 month anniversary of Sue's diagnosis we share that "thrill of hope". It is now abundantly clear that Sue's life expectancy will exceed the shorter 6 month timeframe. Our prayer is that it may even exceed the longer 2 year limit offered at the time of diagnosis. Sue's present state of general wellbeing and her current response to the chemotherapy gives us this hope.

Our greater hope though comes through the assurance we have because of the birth, life, death and resurrection of Jesus. Because of that, we know that reality, hope is assured.

Sue has enjoyed meditating on this reality as she has worked over recent months to complete a wall hanging depicting the Nativity. She started this project some years ago but sought it out as one of her pieces of 'unfinished business'. Her changed circumstances meant that she had both the time and the motivation to complete it - in time for the Advent season.  

There had been some discussion between us about turning the photo above (or a better one!) into a card/message to send to the many many many people who we know (and probably some that we don't know) who are travelling this journey with us and supporting us along the way. It is now obvious that we have run out of time to do that individually, so we simply want to say publically (well on this blog anyway) that we are deeply grateful and truly humbled by your love and support.

We are now in Adelaide to share Christmas with family and will then travel to Victoria, returning home to Darwin on 6 January.  Sue is having a much needed break from the chemotherapy over this holiday time, but will start Round 6 on January 8th.

It is our hope and prayer that you too may have the opportunity to rest and re-create at this special time of the year.

Grace and peace to you all.

 

Round 5 of chemotherapy commenced today. It was not completely straightforward, but ultimately essentially uneventful. It was touch and go for a bit as to whether the treatment would go ahead due to a recent development in one of Sue's side effects.  Over the last week, what had previously been only 'tingly and numb' fingers and toes, became a bit more visibly affected by one or other of the various poisons/toxins introduced into her body. A genteel and polite way of explaining it would be to say that her fingers and the soles of her feet are 'peeling'. A similar thing is starting to happen in her mouth.

As far as Sue's feet are concerned, 'peeling' does not really paint an adequate picture. The word 'de-laminating' would be more accurate. If you have ever seen the way a re-tread tyre disintegrates in layers - imagine the tyre as a foot.... Quite visually stunning, and a little confronting. I have resisted the urge to post a photograph!

This is a known side effect of the tablets Sue is taking and is (not very) imaginatively called 'Hand-Foot Syndrome'. What a lost opportunity to introduce some awesome-sounding label like 'Sole Shredding Maceration Malady' or 'Phalangic Destruction Disorder'!!  Sue wondered about 'Foot and Mouth' thereby giving passing acknowledgement of her dairying heritage. We soon realized that the dairying connection was already stronger than we thought!

The doctor's considered response to Sue's 'malady' was to proceed with the infusions today but delay commencement of 14 days of tablets until next week to allow some recovery time for her feet. The nurses' response was to introduce us to Moo Goo Udder Cream - the preferred and proven topical treatment.

 

Apparently this started life as an Aussie-made udder cream (like, you know, for cows...) but has now crossed over to human skin care and expanded its range considerably!

The Direction for Use stay true to the products' roots saying:-

"Wash udder and teat parts thoroughly before each milking to avoid contamination of milk. Apply udder cream to udder after each milking, massaging into the skin. For teat cracks, apply sufficient quantity to fill crack and surrounding area. As an aid in softening swollen udders during calving, apply liberally twice daily with a gentle massage."

My imagination went a little wild at this point as it tried to relate bovine body parts to human equivalents until Sue gave me 'a stern look' and I dispelled all forming images from my mind....

The only bit of the directions that may not have been written by a vet reads:-

"May be used for dry or chaffed skin and as an aid in keeping skin soft and supple."

Apparently the go for those with chemo-induced 'Hand-Foot Syndrome' is to smother on the Udder Cream at night and then put on socks so the feet baste all night....mmmmm.

We will keep you posted on how this bovine madness unfolds.

Celebrating Life

Conceived before conception
Perceived before perception
Child of man
Child of God
Doubly precious
Born, and born again

Daughter, sister, mother
Precious wife and friend
Faithfully living
Generously giving
Loving, lover, loved

Graciously redeemed
in fallen, broken, failing life
Divinely perfected
in aging, fragile, ailing state
Healing, healer, healed

Precious in past and future
Loved in life
Loved eternally

 

Geoff Bateman 4 December 2013 (Sue's 55th Birthday)

 

This blog post has been intentionally left blank

 

Wikipedia notes that "An intentionally blank page is a page that is devoid of content, and may be unexpected. Such pages may serve purposes ranging from place-holding to space-filling and content separation. Sometimes, these pages carry a notice such as, "This page [is] intentionally left blank." Such notices typically appear in printed works, such as legal documents, manuals and exam papers, in which the reader might otherwise suspect that the blank pages are due to a printing error and where missing pages might have serious consequences."

I have always been amused by this idea of putting text on a blank page in order to tell the 'reader' that the lack of any text was not a mistake and there is nothing to read. In doing this they obviously are making the page 'not blank' and giving them something to read. This makes the statement itself false. What an exquisite irony!!

Imagine my dismay when I realized that I wanted to do something similar with a blog post!! Seeing that it is over a week since the last post, and realizing that this may cause some confusion or distress (well maybe not that much distress...), I felt the need to tell you "We have nothing much to tell you".

Suffice to say that The Journey continues.

If you are reading this you are expressing your love and care of us, and a desire to travel with us. For that we remain humbly grateful and feel richly blessed.

Maybe the post wasn't completely 'blank' after all?

 

A poem that bubbled out of our anniversary and associated musings.....

 

TIME

Einstein said time's relative

To what? I’d like to know

To me the weeks pass fast

Yet minutes sometimes slow

Next week is tardy coming

But childhood strangely near

I am both older than I feel

And younger than I fear

Thoreau said killing time injures eternity

Minutes wasted lost and gone

The past is past, the web’s been spun

This day, this year, this life soon done

So cherish moments, every one

Look back, live on, love free

 

Geoff Bateman, 23 November 2013

After an extra week of rest for Sue's body, Round 4 of chemotherapy commenced on Wednesday. Sue found it a little harder to mentally prepare herself this time - partly due to the additional week off, partly because she now knows what to expect, and (strangely) because it was on Wednesday not Tuesday like before! There was that sense (mentioned in an earlier post) that the 'rhythm' was a little off.

Things did not start so well as the nurse had trouble finding a co-operative vein. He 'blew' two veins before swapping arms and calling for reinforcements! There are some interesting bruises as evidence of 'Strike 1' and 'Strike 2'! After that, it was fairly plain sailing - pretty much a 'normal' chemo session. The oncologist had further reduced the infusion dosage due to the cumulative side-effects and the inflammation being caused to Sue's colon, but the total infusion 'volume' stayed the same.

On returning home in the afternoon we were blessed with a tropical downpour that both cooled the air and soothed the soul.   Our back veranda deck that overlooks the pool, the garden and the 'bush' continues to be a place of peace and contemplation for Sue. It is not unusual to find her sitting, lost in her thoughts (or possibly complete lack of them) enjoying her continued ability to enjoy her time and place. Other times she will be calling out for us to come and look at the bird she is has just seen, or reaching for the bird book. Or perhaps it is a coffee and magazine and a doze. My heart melts when I see her at peace in the midst of the physical and emotional turmoil. These moments are more than fleeting, they are eternal.

Guess what?  We celebrate our 33rd wedding anniversary today. Wooo Hooo. 

For the first time, we have consciously considered and discussed that it may also be the last one that we can celebrate together with an embrace, a profound and knowing gaze, a kiss, and a deep and enduring gratitude for each other and the life we have had, and are having, together. Oh yea, and for the kids - the precious 'product of our union'.

Strangely, that has been true for each and every one of the previous 32 anniversaries too. We take so much for granted don't we?

Sigh........

Another poem, of a rather different style, and not directly referable to the current journey. "Why is it on the blog then?" you may ask. Good question......

 

Up until now, there had developed a definite rhythm of life - all based around the three-weekly chemotherapy cycle. That rhythm has now become somewhat syncopated, or at least interrupted.

The 4th round of chemo infusions were due to occur today. They have been postponed until next Wednesday 20th November.  

The reason for the postponement is that Sue's colon has become inflamed because of the chemotherapy and the oncologist wants to allow it further time to recover. He is also concerned to minimize the cumulative impact on undesirable side effects. The chemotherapy will resume next week with some further lowering of dosages.

The good news is that the scan results were located, read and interpreted to reveal that the treatment is having an effect in shrinking the diseased tissue and therefore slowing the progression of cancer. I guess that it is literally a case of 'buying time', though we are blessed to not see too many actual invoices at this stage!

As the song says, 'the rhythm of life is a powerful thing' - even when it is syncopated or even unpredictably irregular!!