Why not have a pajama day?
Reject decorum, care-less-ness display
Lounge relaxed in sloth-clothed style
Leave your day-wear in a pile
Silence the phone, ignore the door
Sweet release like none before
Enjoy your sleep-wear's soul caress
Nested safe within your mess
And stay
That way
All day
(Preferably with a friend!)
* A homage to a couple of memorable Pajama Days, including Monday this week!!
We experienced a very dreary start to 2015... and we love it!
After a much hotter and dryer 'build up' than usual the monsoonal rain seems to have finally arrived. After some showers yesterday, we woke up to 2015 with a dull, dreary and WET morning. The hot and humid of 2014 was replaced overnight with the (relatively) cool and wet of 2015. The daytime temperature hovered around 25-28 degrees and the rain was persistent, and at times 'heavy' in the way that only a monsoonal rain can be.
If you have lived in the Top End or other tropical area you will appreciate just how wonderful and relieving 'dull and dreary' can be. The positive impact on Sue was immediate and beautiful to watch.
It has been an interesting week. Sue went in for her second round of chemotherapy on Monday. She invited Tessa to accompany us so she could better appreciate this aspect of her Mum's experience. As it turned out, Tessa had a demonstration of how unpredictable this journey can be.
Things started well with the successful use of the implanted port to take a blood sample - though the taking of blood samples at this time was unusual. The pre-chemo blood samples are usually taken at a local centre and tested a couple of days before the chemo treatment. This time we learned that in Darwin there is no way to get a blood sample taken and tested anytime between Christmas Eve and the weekend, even at the public hospital. As a result, the blood sample needed to be taken by the chemo nurse and then sent off for 'urgent' analysis (60-90 mins) before chemo could proceed. We settled in for a wait.
The wheels began to wobble when the nurse took Sue's blood pressure. It has been 'a bit high' for a while now but this time the systolic pressure was 164. Systolic pressure is the 'top number' (always the higher of the two numbers) and measures the pressure in the arteries when the heart beats (when the heart muscle contracts). The nurse informed us that the highest permitted systolic pressure when receiving an Avastin infusion is 150. She left to seek advice from the oncologist. We waited. Eventually she returned and advised that the oncologist had prescribed a 'one off' shot of an anti-hypertensive so the infusion could proceed. The nurse then repeated the blood pressure test and got a systolic reading of 155 which, she then informed us, meant that the anti-hypertensive was not required after all. All good.
The nurse then proceeded to ask the standard 'pre-chemo' questions about side-effects, pain, breathing, sleeping, bruising, bowel motions, bleeding.... At his point the wheels fell off! Sue had experienced some (one off) bleeding from the bowel on Christmas Day. The nurse left to speak to the oncologist again. We waited. After a prolonged wait she returned and reported that the oncologist had now ordered that the infusion not proceed this time (and likely never again we suspect).
End result? Tablets only this round - which has the upside that Sue wasn't knocked around by the (not) infused drug.
Where to from here? Tablets for two weeks then a fresh CT scan and visit to the oncologist for a review (13 January). In the meantime, it seems to be 'steady as she goes' for Sue with life pretty well managed by moderation of activities, rest and some pain relief.
So ended 2014. So starts 2015.
Here's to a further dull and dreary period for us. May your New Year be 'dull and dreary' too (in a good way)!
What a joy it is to have our children and their partners all together this Christmas. Babies are soft and gorgeous. Toddlers are amazing and fun. Pre-teens are interesting and enjoyable. Teens are changeable and challenging. (Our) young adults are richly rewarding, deeply satisfying and to be savoured at every opportunity, especially when they are together. What a joy it is.
Sue is in her chemotherapy 'off week'. This is a blessed relief from the daily doses of poison. The next round starts on Monday. Sue is experiencing a slow but noticeable increase in pain and discomfort in her left side. This means more frequent (and sometimes stronger) pain medication and the reintroduction of the trusty 'wheat bag' heat pad.
It has also required her to accept and relax even further into BEING mum rather than DOING Mum. This is a particular challenge right now when she would love to be expressing her love and commitment to the gathered family in very practical ways. However, Sue can take pride and joy in the fact that she has raised three children who are capable and willing to express their love and commitment to the family in very practical ways while she sits, watches, absorbs and enjoys BEING Mum. It is the best Christmas present ever, and warms my heart.
Yesterday morning I wrote about A Christmas Carol. During the day I found myself constantly humming the beautiful old hymn Come, Thou Fount of Every Blessing written by Robert Robinson in 1758. This hymn truly 'stands the test of time' and has been covered and recorded by modern artists. It was stuck in my head to the point that I was prompted to listen to a number of versions of it on Youtube. Here are just a few (each opens in a new window).
So why was this song banging around in my head? If you know the song well, or have clicked on any of the above links you may note that the second verse of the song begins with these words: “Here I raise my Ebenezer.” I think my subconscious was enjoying the juxtaposition of Ebenezer between old Scrooge and the hymn. For years and years I have found it hard to shake the mental image while singing the hymn of someone holding up a curmudgeonly old miser who keeps his office way too cold and doesn’t pay Bob Cratchet enough!
Despite having this incongruous mental image for decades, it has taken me until today to explore Robinson's meaning.
The answer to this, as it does for many questions, lies in the Bible - 1 Samuel 7 in particular. There it is reported that the prophet Samuel and the Israelites found themselves under attack by the Philistines. Fearing for their lives, the Israelites begged Samuel to pray for them in their impending battle against the Philistines. Samuel offered a sacrifice to God and prayed for His protection. God listened to Samuel, causing the Philistines to lose the battle and retreat back to their own territory. After the Israelite victory, the Bible records: “Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, ‘Thus far the Lord has helped us’ ” (1 Samuel 7:12).
In Hebrew, the name Ebenezer (or rather eben-haezer) consists of three elements. The first part of the name is the noun אבן ('eben), meaning stone. The final part of the name comes from the verb עזר (azar), meaning to help or support. In between these two elements sits the definite article ה (he). It is usually transliterated as a proper name by dropping the definite article to create "Ebenezer."
Literally speaking, an Ebenezer is a "stone of help," or a reminder of God’s presence and divine aid borne out of His love for us. Of course, there can be many Ebenezers in our life - things that serve to remind us of God's action and support in our lives.
Sue and I have been surrounded by 'Ebenezers' over the last 18 months. Yes, there are songs, scriptures, pictures, gifts, cards and the like. Much more more significantly, there are people who would be called Ebenezers for us. These are people who remind us of God's love, care and support - whether they know it or not. As you read this blog, you should rightly count yourself as one of these. We are deeply grateful.
For years I have associated Ebenezer with Christmas, but for all the wrong reasons. What better time of the year to remember God's ultimate Ebenezer - Jesus Christ.
I leave you with the closing paragraph of an excellent exposition of the meaning of Ebenezer using the Hebrew etemology (which you can read in full here):
Because of the [ommitted] definite article (ha), the name Eben-haezer doesn't simply mean Stone Of Help, it means Stone Of The Help, which in Hebrew denotes an emphasized specification. Eben-haezer didn't commemorate getting help in general or even the help that God gave. Eben-haezer commemorated the help that God IS.
So, to all our Ebenezers we say "This Christmas season, may you know the reality of the help that God is, and experience the grace and peace that flows from that."
Sitting in the lounge within arm's reach of each other, sometimes holding hands or offering a loving glance, sometimes a light caress or quiet word, has become a much more common practice for us over recent months.
Last night as we did so we watched the 2009 animated telling of Dickens' story A Christmas Carol. The graphics were amazing and the voicing impressive (Jim Carey, Colin Firth, Bob Hoskins). While the story of the redemption of Ebenezer Scrooge was both familiar and salutary, the level of scary 'supernatural themes and images' took it well outside of the realm of a children's story - despite being listed as such in the TV guide and aired early evening. For the kid's, The Muppet Christmas Carol is much more suitable and uses humor rather than fear to convey the moral of the story!!
We have something in common with old Ebenezer Scrooge. We too have been forced to think about past, present and future as we approach Christmas 2014. Scrooge was forced to take account of his life and the decisions he had made along the way. He was also required to view the impact of his life on others, his death and his legacy. He was shattered, and ultimately redeemed, by what he saw.
Sue and I have been doing a bit of the same really. There is no doubt that we too can identify things in the past and the present that can inform our future decisions and actions. Just as the spirits that visited old Ebenezer were (literally and figuratively) a 'wake up call' that opened his eyes and changed his perspective on his life, so Sue's cancer been for us - and we are grateful to God for the opportunity.
As we move into Christmas 2014 and anticipate the joy of having all our children and their partners together in our home, we reflect on this time last year. At that time we contemplated the very real possibility that we may not be together for Christmas 2014. Ironically, we find ourselves in the position were we are contemplating the same possibility for 2015 - but do so with a sense of peace and deep gratitude to God.
The NT News is renown for its (often croc-infested, sometimes amusing and occasionally crass) headlines. However, just occassionally, they get it exactly and profoundly right. They did so today (admittedly on about page 12):
PS: Sue continues to cope pretty well with the chemotherapy. Other than extreme tiredness/lack of energy she is doing really well. We are looking forward to the 'week off' between chemo rounds that starts tomorrow. We worked that timing out well didn't we!
Bless yuz all.
Monday morning saw the re-commencement of chemotherapy. It was both a return to the familiar, and oddly different. The Alan Walker Cancer Centre was unchanged and thus familiar - but there was only one familiar face among the staff. That felt a little 'odd'. Sue was led to a treatment station (big chair and other medical paraphenalia) that she had never occupied before so the outlook was 'off'. None of the patients were ones we had met before. All this caused us to stop and realise that life had moved on for everyone in the 6 months break from chemo.
One thing that we knew would be different (and better) was the use of the recently implanted 'port' for the delivery of the infusions. WRONG! For reasons unknown, confirmation had not been received that the catheter attached to the port was 'correctly positioned' (in the vein presumably). The report accompanying the x-rays taken for this express purpose was strangely silent on the matter. One wonders what the report actually DID say? Anyway, we were presented with the choice to wait a few hours until a doctor could look a the x-rays or 'do it the old-fashioned way' with a needle in the arm. We chose to be impatient. After two failed attempts to find a suitable vein and a change of personnel, Sue was wondering whether we had made the right decision! It turned out to be 'third time lucky'. The guy in the chair next door who was repeatedly saying how great ports were and how happy Sue will be when they can use hers was not especially helpful in the process!! Once a suitable connection between apparatus and person was established, the rest of the process unfolded over 90 minutes uneventfully.
All that notwithstanding, Sue was her usual sanguine self throughout.
[As an aside, the use of the word sanguine in this context is most appropriate and deeply satisfying to those who enjoy language. These days the word sanguine is used to convey a personality type that remains positive and hopeful, even relaxed and at ease, especially in difficult situations. Interestingly, the word derives from Latin sanguis meaning 'blood'. This 'blood connection' is most evident these days in medical circles where the term exsanguinate is used to describe blood loss of a degree sufficient to cause death. The artists among you may also have the color sanguine in your palette. Many old (or old-style) chalk or pastel sketches are referred to as sanguines for this reason - they are the color of dried blood.]
Anyway, as I was saying, Sue remained sanguine, but under no threat of exsanguination, as she was pricked and probed for a suitable vein!!
Since Tuesday Sue was been taking her 'poison tablets' (her description) morning and night. The intake of these chemicals is already having its expected negative impact on Sue's immediate feeling of well-being - though certainly at manageable levels at this early stage. As we talked yesterday Sue mused about why she was feeling so much worse so quickly, and then realised that last time she started chemo she was already in significant pain and more generally unwell so 'didn't have as far to fall' as she does now.
We leave you with an example of a sanguine in which the subject herself appears to be sanguine (or possibly in the process of exsanguination - hard to tell!). Enjoy.
All these things were able to be savored and enjoyed in and around Yarragon!
The flowers in our garden were an unexpected bonus.
Today is Sue's 56th birthday. Given that we were wondering if she would clock up 55, getting to 56 feels like of lavish gift.
How often do we say the words "many happy returns (of the day)" on the occasion of a birthday? It slips off the tongue easily, habitually, without conscious thought.
Today, on the occasion of Sue's 56th birthday, I certainly pray more thoughtfully and intentionally that she has 'many happy returns'. Returns not only of birth day anniversaries (which is, after all, a reducing statistical likelihood), but of individual days that can be cherished, enjoyed and shared with those she loves and who love her.
December 4, 2015? That is in God's hands, but then again, so is next week, tomorrow, today, yesterday, last week, and the mosaic of 56 elapsed years that mix and merge to form Sue's life.
The journey continues.......
After a long but uneventful day of travel by plane (Darwin - Adelaide - Melbourne) and car (Melbourne to Yarragon), we arrived at Retreat Cottage about 10.00pm on Monday night. As we pulled up in the drive with the wind blowing the trees and the cold rain misting our view, we felt a deep and settled sense of having both left home and come home in the one day. There were no unpleasant surprises as we entered the cottage. All was as we had left it - still clean and fresh. Someone had even come in and made the bed (Thanks Tessa!).
Our plan for this week was to have no plan. No plan for painting. No plan for gardening. No plan for shopping trips to Bunnings or IKEA. No plan for anything much. We have stuck to the 'no plan' plan and let each day and evening unfold as it will.
Sue is healing well from the implanting of the port though there are some interesting (now yellow) bruises that indicate that she was gripped and squeezed in ways and places that I (as a gentleman) will not dared describe. Other then the ever-present tiredness, and issues with sleep, Sue is travelling well.
This morning Sue decided to have a bath in the large spa that is in the lounge room of the cottage (it was built as a B&B). As she luxuriated in the bubbles I received a text message from a friend of ours from a nearby town, Pauline, who announced that she was 'in Yarragon' and had something to drop off to us and asked whether it was convenient to pop in. I replied that Sue was presently in the spa bath but by all means come over when convenient. Pauline replied 'Actually, I am out the front of your place now!" Keeping completely calm and in control I simply announced to Sue that we were about to receive a visitor and she might like to ensure the bubbles were appropriately positioned to protect her modesty. Seeing Sue's look of surprise (shock?) I told her who the visitor was and reminded her that Pauline was a nurse - so had seen plenty of people naked!!
To her credit, Sue handled the whole event with grace and dignity. It was rather amusing though to have a lengthy casual catch-up chat with Pauline and me sitting in lounge chairs and Sue lying in the spa nearby and contributing from there. I assured Sue that what happens in Yarragon stays in Yarragon, but may be reported on this blog!
As well as providing great amusement and a unique start to the day, Pauline also left us with some ANZAC and some shortbread biscuits.
A little place in the country. A morning 'spa-ty'. Home delivered treats. Talk about living the dream!
Sue had her 'port' successfully implanted yesterday. It was a long day as the procedure was scheduled for 12:30 but significantly delayed and not completed until near 5.00pm. We got home around 7.00pm.
Sue now has a titanium 'UFO looking thing' implanted just below the skin above her right breast with a catheter line tunneled upward under the skin to her jugular vein. There it is inserted into the vein and pushed down so that the end rests in the superior vena cava (big diameter high volume vein next to the heart).
Here are some photos that show 'the inside story':
In case you are having trouble picturing the device, perhaps this may help:
 |
This is a close-up shot so don't be confused. It is only about the size of a 10 cent piece! The 'rubber' part in the middle sits just under the skin so a needle can easily be pushed through the skin, through the 'rubber' and into the chamber below. In this way blood samples can be taken, and drugs administered, without the hassle of 'finding a vein' as there is a huge one at the other end of the tube!! Bloody marvelous! (actually 'not bloody' marvelous!!) |
Sue is pretty dopey today as the effects of the anesthetic and the assault on her body take their toll, but otherwise 'all is well'.
As we sat together this afternoon and spoke words of love and assurance to each other we were again overwhelmed by the (re)realisation of how lucky we are to have each other, to be surrounded by family and friends, to have (almost!) free access to high level medical care, to have an embarrassing abundance of material 'riches', and to be confident about who we are individually and as a couple as a consequence of our relationship with Christ.
Life actually doesn't get much better than this folks!
Some words are just enjoyable to say. Sue really likes the feel of 'Seychelles' as she speaks it. It is indeed a soft and delicious, even sumptuous, sort of word. A word to be savored and enjoyed. An apt word for the place it names....
I quite like 'fickle'. It is a hard-edged, soft-centred and more of a escaping sound than a word. It is fun to say and becomes absurd said repeatedly at speed.
Perhaps our word preferences reflect something of us? Sue - soft and delicious, even sumptuous; to be savoured and enjoyed. Geoff - more hard-edged, soft-centred and absurd. Something there to ponder!
While the word 'fickle' has its origins in old English and then meant 'deceitful, tricky of cunning', by the 13th Century it had moved toward its current milder meaning of 'changeable' though it still carries a hint of unpredictability and instability.
In case there is any doubt, we wish to formally announce that we are......
The day following our consultation with the oncologist this week Sue was given Thursday 20th November as the date to re-start chemotherapy. She was also referred to our surgeon to discuss the implantation of a 'port' to simplify chemotherapy infusion and blood tests in the future. The idea was that Sue would have two rounds of chemo and (probably) then have the implant before proceeding with further chemo. One of the chemo drugs presents risks to surgical wounds so chemo needs to 'wait' for a couple of weeks afterward.
Then we got to thinking..... Sue is feeling pretty well at present, do we want to take advantage of that? How urgent is the chemo really? Could we get the port implanted soon and delay chemo for a few weeks? If f we have a few weeks grace, what could we do with it? How quickly can we make the necessary enquiries and unpick the current plans if we decide to? Are we prepared to make a 'nuisance' of ourselves? Do we want to more firmly establish ourselves as FICKLE?
Yesterday morning we decided to 'go for it!' A call to the surgeon's rooms procured us an appointment for 2.15pm that afternoon (how did that happen?). After discussion our surgeon made room for Sue's implantation next Thursday 20th. An email to the oncologist last night affirmed that he was content for us to delay chemo by 3 weeks. This morning we rescheduled the chemo re-start to Monday 8 December. Having sorted all that out, we booked flights to Melbourne on 24th November and will spend two weeks in Yarragon at our 'Retreat Cottage' before heading back to Darwin on 5th December. We also booked a hire car.
Not a bad achievement in under 24 hours! We may be FICKLE but we are also FOCUSED!!
It was heartwarming to see the shift in Sue's demeanor as these plans came together. It was a good decision and feels 'just right'. Praise the Lord - we saw the light!
Did you know that it is not only acrobats, gymnasts, divers, skiers, proponents of parkour (urban free-running) and fearless kids that can do back flips? During our visit to the oncologist today it became apparent that medical specialists can do them too!
Despite all indications to this point, the possibility of liver surgery has now been taken off the table. The reason is simple, the specialists comprising the Multi-Disciplinary Team, upon forensically reviewing all available scans and data, discerned that in addition to the liver tumors Sue has at least one tumor on her peritoneum (the continuous transparent membrane which lines the abdominal cavity). A lever resection as was being discussed is only indicated where there is no evidence of the cancer outside the liver. End of consideration.
We are simultaneously significantly relieved and slightly discouraged! The fact that we are no longer needing to contemplate a significant period away from home and all that goes with major surgery is a great release and relief. On the other hand, the identification of the additional tumor, combined with the heightened activity in the liver tumors is a reminder of the reality of this disease. We really do live in a 'both-and' world where opposites can be true together at the same time don't we?
All that is left now is to recommence chemotherapy. The plan is to do this 'immediately' and to start with a cocktail similar to that which Sue had previously. After a couple of rounds of this, there will be more scans to determine whether it is having any positive effect. If not, the chemical cocktail will be changed to a 'second line' of attack.
Sue is not especially looking forward to recommencing chemotherapy, especially as she is feeling quite well at present. Our hope and prayer is that the anticipated side effects will not kick in quickly or severely so we can all enjoy the lead into Christmas.
In this, as in all things, it is what it is...... and we will relax into it.
Arrangements for our most recent Adelaide trip commenced mid-Wednesday and by Midnight Saturday we were back in our own beds having sorted out and attended an MRI Scan on Thursday and a lengthy consultation with the liver surgeon on Friday.
We are now back in Darwin, at least for a little while. Our unexpected and very quick trip to Adelaide has left us tired, somewhat more informed, still waiting, but overwhelmingly grateful for the quality of medical advice and care that Sue is receiving and the amazing support that we are drenched with, and not only from family and friends where one might expect it (though we do recognize that we are also richly blessed in the nature and quality of these relationships - way beyond the norm). Although still 'bureaucratic' in nature and at times mystifying and frustrating, the variety of practical and financial assistance we have been receiving is astounding. So many things just 'fell into place' beyond reasonable expectation and explanation. Some may attribute this to divine intervention....
'It just so happened' that we were able (through family connection) to secure an MRI in Adelaide on Thursday when the best the oncologist's rooms could do was sometime THIS WEEK in both Darwin and Adelaide!
'It just so happened' that we were able to book flights out to Adelaide on 6 hours notice - still at reasonable rates.
'It just so happened' that both the MRI and consultation ended up being at Ashford Private Hospital - the most convenient location to where we were staying.
'It just so happened' that (according to the liver specialist) the MRI was exceptional and radiologist who interpreted it was 'the best in the business'.
'It just so happened' that the liver surgeon saw us at the end of the day and started by saying "We need to have a long talk about our options, and I have plenty of time" and proved he meant it by talking with us for nearly an hour!!
'It just so happened' that the surgeon knows our oncologist personally and had already had a number of lengthy conversations with him about Sue's situation.
'It just so happened' that Sue's case had already been discussed by the Flinders Medical Centre Multi-Disciplinary Team (doctors from a wide range of specialties who consider complex cases).
'It just so happened' that the surgeon charged us a ridiculously small fee and the Medicare rebate was in our bank account within 2 hours!
'It just so happened' that when we looked at return airfare options late Friday night (once it was clear that we did not need to stay for more tests or further consultations) we could get crazy low fares for Saturday night (less than half of what we could be Sunday or Monday).
I could go on (and back) recording all the amazing things that 'just so happened' but my stock of irony is running out and I can't keep writing with my tongue planted so firmly in my cheek! I have no doubt that we are being both humanly and divinely loved and blessed.
So, where are we up to medically? As a consequence of the MRI and consultation, the only option still open for consideration is a liver resection (operation). There are divided opinions about the value of such major surgery in a case like Sue's. If it were to go ahead it would be for 'local control' purposes (i.e. to prevent/delay the liver tumor growing to the point where liver function is compromised). There is a window of opportunity now for this while Sue is 'well' and there are no other visible signs of the cancer active elsewhere in her body. The matter is under discussion again today by the Flinders Multi-Disciplinary Team who will make a recommendation whether to proceed or not. If the surgery is offered, and we are comfortable about proceeding, it will likely happen on 21 November at Flinders Private Hospital in Adelaide.
We should know more tomorrow when we see the oncologist again.
The whirlwind continues....... but the breeze is nice!
We prayed for action. We got it!!
After an unexpected flurry of activity today we are booked to fly out to Adelaide in a few hours time (1.35am Thursday). Sue will have an MRI tomorrow afternoon and then see the liver specialist at Flinders Medical Centre on Friday afternoon.
Now that appointments are settled, flight booked and checked in, airport drop-offs arranged and accommodation secured, all that is left is to pack our suitcases. (Pack = 'throw random bits of clothing in without extensive thought').
We were planning a quiet night at home and early bedtime. How quickly things can be turned on their head.
We look forward to getting a better understanding of the 'where to from here?' options in the coming days.
When we know, you will know.