28 December Christmas celebrations are over, but the memories aren't

I notice from the last entry that it has been quite a while since the last update. Sorry, but like everyone else I have been quite busy. In fact I recently said to Brian "Goodness I really need to sit down for a while" Duh... I spend all of my days sitting down... 

I am very glad to say that after a period of medication adjustment, my back pain has eased considerably (due to a large increase in the nerve drug Lyrica). This was such a relief as I was determined to be able to enjoy the Christmas worship and family get-togethers over Christmas. I haven't forgotten (how could I) that it was on Christmas Day a year ago that things 'crashed' for me - with an ambulance trip to hospital, leading to tests that soon identified kidney cancer and the spread into four tumours in my spine and left pelvic bone.  
I am so thankful that I could thoroughly enjoy Christmas this year.
Unfortunately Brian is still struggling to find the right relief for his pain, so there are more appointments shortly to continue the explorations. I will also have further CT scans in January to check how things are progressing, so our lovely new January calendar is already starting to fill up with appointments. 

It was so lovely to have Simon and Caitlin spend some days with us over the Christmas period. Sonya and Scott also bravely tackled the 8 hour trek from Albury to Portland with their four children, and together with Adrian, and Dale and Kodey, all the 'chickies' were home for Christmas this year! This of course lead to a delightfully chaotic but enjoyable time. 

On Boxing Day we drove to Melbourne for our traditional 'Miller' post-Christmas gathering. We have been doing this for over 30 years - and have all treasured this opportunity to catch up and see the 'rellies' that we often haven't seen from one year to the next. Instead of sharing Christmas gifts with each other, we all bring along 5 photos of the past year, and 'share' these happenings. It's lots of fun!

Enjoying the sharing of photos at the Miller gathering.

Today Brian and I travelled back home - just in time to say goodbye to the Albury crew who are heading back tomorrow (except for the 2 girls who are having extra holiday time in Portland). After such an enjoyable time, I have no shame in admitting that yes, I really am quite weary!

Here we all are on Christmas Day (minus Dale who unfortunately was at work). Note the amazing 'fruit tree' made by Caitlin for the children to enjoy and eat!

 

 

 

 

 

 

 

 

 

I simply have to conclude with the following letter and drawing. It was written the other day by Lauren, who will turn 6 shortly. She is writing to her sister Emily, who died at 11 weeks of age (before Lauren was born), and she also refers to 'Lacee' - her cousin who also sadly died when she was 9 days old. Those precious little babies are so lovingly remembered, and the children talk about them often. Dear little Lauren (wearing a red crown in the above picture) has such a compassionate heart, and sometimes sheds a tear for this sister that she never met.

"Dear Emily, I just want to tell you I made this card by hand. I really miss you. I hope you are having a great time with Lacee. Now have a merry Christmas next year, Love Lauren"

11 December

It's been a little while since I've updated this blog so I'll try to catch things up.
I was very happy to finally discontinue the steroid drug about 2 weeks ago. 
The good news: is that some of the obvious side-effects I had been experiencing (face/ankle swelling, flaky skin etc) have almost gone! I am grateful!
The bad news: is that I have had a gradual increase in back pain since that time, including some fairly debilitating days. Grrr
After putting up with it for some days, I was encouraged by a friend to seek help now! 
So I did. As a result, I was blessed to have an appointment with the pain management doctor who 'just happened' to be in Portland this past week (on her one-day-a-month visits to Portland) and 'just happened' to have a time slot for a home visit on Thursday. She's a woman of action, and likes to leave with an action plan - and I like that! I'm now on a helpful slow release NSAID drug, and she has also ordered xrays which I'll have on Monday - basically to check that there is no disease in the left ribs (where I feel the pain). Hopefully that will not be the case, and the cause of pain is much more likely to be nerve pain. I'll know more next week. 
The amazing thing is that just when I have had a more challenging week, I have had unexpected surprises - phone calls, visits, flowers, and even a trip with a friend to IGA for a slow browsy shop-up (quite a treat for me, when Brian is the usual shopper!).

Meanwhile, although we are not as actively involved in a lot of end-of-year activities, we have been busier that usual. That's good, and we try to take part and contribute where we can. 

Back in January, we had planned to renew our side house fence, but of course that didn't happen with our lives in turmoil after my cancer diagnosis. So it happened this past week, and despite Brian's aching body (from assisting in the removal of the old fence), we can now look out at a brand new fence. Now there's just a few jobs that need to finish it off (moving some dirt and sand etc) but Brian can just potter along and do it in dribs and drabs as none of it is urgent. I'm just glad the big job is done. 
 
Brian continues to take things a day at a time - some days being better than others.         Last week he had a skin lesion removed from his ear and that has proved to be cancerous, so we'll have to be vigilant from now on. When I think about it, in the 60's we didn't give too much thought to sun protection - no hats or sunscreen, lying out in the sun while listening to the tranny and sunbaking, sometimes with added baby oil to increase the tanning potential (goodness, that's like preparing a body for roasting!) and bemoaning when our skin would readily burn. Abusing our bodies certainly brings consequences,albeit so many years later. 
I sometimes wonder about the source of my own cancer - but I won't ever know that as I don't fall into the high risk categories for kidney cancer (being an overweight smoking male!)

The boys in action (while I watch from the lounge window)

 

30 November 2015 End of Spring

And what a Spring it has been - hot one minute and cold the next. Bushfires one minute and storms the next.
This is what it looked like out of our front window last week:  

Yes, cold and wet - but this photo made me aware of the dead roses that needed a prune!

So today I managed to wheel the wheelchair onto the grass and prune the rose bed. It was worth getting bogged in the grass now and again, as it looks much better now, even if it isn't the proper time to prune roses.

 Last week I had my routine appointment with the oncologist who fortunately visits Portland weekly, so we didn't have to travel. All is looking good and appears stable so that is good. I do get a bit more back and hip pain now that I am off the steroid drugs, but I can live with that. He told me of a new drug showing great promise with kidney cancers. It is an immunotherapy drug, and appears to be very effective in activating the immune system to recognise and attack the foreign cancer cells. I like the sound of that - even though the drug costs $120,000 a year!!! Fortunately if I do go onto this drug I don't have to pay that - but I guess someone does. In January I will have further CT scans to check the progress a bit more clearly and to determine if I need any change of drugs. 

Meanwhile Brian hasn't had the best of weeks, with a lot of pain that he just can't seem to get on top of, and he has spent quite a bit of time lying flat on his bed or chair. Tomorrow he is having a skin cancer removed from his ear, so hopefully that goes smoothly. He's having a few tests done and various drugs to try, but we haven't found the answer yet, so we'd appreciate prayers for that. It's times like this that I especially feel my lack of independence - particularly driving. However, this is not something I dwell on, as I am fortunate that there is so much I can do. 

 Wise words indeed.

22 November 2015

There's not a lot to report this week, as things have continued to be stable for myself. I am delighted to be completely off the steroid drug, and already some of the withdrawal symptoms have lessened. My back wound is still being dressed regularly but seems to be healing better. I have a few routine appointments next week- including the oncologist who I haven't seen for 8 weeks - but don't anticipate changes. 

This weekend Brian and I rather sadly said farewell to our camper trailer that has taken us on some wonderful adventures to Queensland, to Western Australia and closer to home too. Our next travel adventures won't be camping, but we'll have to creatively explore other possibilities (such as the holiday home we stayed at in Dunkeld). 

Thank you, camper trailer, you've served us well with some great adventures!

 

15 November A busy fete and a birthday celebration

All in all it's been a pleasantly busy and ordinary week.
Health-wise, all continues to be going smoothly - my back seems to be healing up from a wound infection, with silver and a dressing doing the trick. (I must be worth quite a bit these days - gold in my teeth and silver to heal infection...)
I never thought I would get excited about being able to do such ordinary things as weed the garden, but the other day I went outside to water the garden, an easy task from a wheelchair (though I usually do manage to get myself wet in the process). Well, it was so pleasant outside that I located a hand-weeder and discovered that I could bend over the side of my red chair without falling out, and before long had filled a container of weeds! The novelty may well wear off, but for now I am enjoying the normality of such things.
Speaking of normality - I gave myself the challenge of contributing to the cake stall for our school fete, held last Saturday. I figure that I can reach into the oven with greater ease than before, so went for it!

It was also good to be able to help out at one of the fete stalls that only required me to be seated, take money and enjoy a chat with people I hadn't seen in a while - not such a hardship.
After church today, it was a privilege to enjoy a meal out with good friends to help celebrate the 65th birthday of a special friend who has had a lengthy cancer battle. Amazingly after having had some weeks of ill health following grueling treatment, the past week has brought him much better health, and he was able to participate and enjoy the day in a way that would not have been possible only a week or two ago. Great reason to celebrate. 

Yes, an ordinary week - and I am thankful for it. 

ps if you are wondering about our friendly local koala, we're not sure where he is currently located, but we do know that it is in the close vicinity as the noisy night-time grunting continues... 

8 November 2015 Healing backs and that darn koala

This week I had two reminders of the wonderful health services we can access in our country.
Firstly, we have been thankful for the home care which came about after my back surgery, one hour per week of housework - and my goodness what our worker doesn't get done in one hour is hardly worth mentioning! Well she informed us this week that she has pursued our 'case' further, and this care will continue for another 6 weeks. Hey that's truly a help and blessing for us - ensuite cleaned, house vacuumed, kitchen floors swept and washed.
And secondly, although my back scar has healed up well it has recently become a little tender where I lean back, so it requires District Nurses to check and dress it every second day, watching for possible infection. These special nurses have been unfailingly cheery and professional, so we are indeed thankful for their services too. 
The picture below (sorry - not the most attractive sight!) was taken about 3 weeks ago, showing my 35cm scar, but the reddish patch has not healed further, and when you press it, it 'wobbles' at the top of the scar. We're onto it though!

It's healing well except for the 'slower' bit, probably from where I lean back on a chair.

Enough about that.

We seem to have had a koala theme recently and this is no exception - yesterday evening Brian took this photo of a koala on our back garden fence. However I suspect Brian would have been a little more 'active' at moving it along had he known the koala's intent, because it climbed onto our flat house roof overnight, making one heck of a din before a loud thump and then things went quiet again. 
There were no visible signs of the activity today.

"Hope you've learnt your lesson - please stick to trees in future, preferably not too near our house..."

 

1 November 2015 The big ....

Yes - another new month has arrived - and I know this well because I can't easily turn the calendar over (without standing up out of the wheelchair) so it's generally a Brian task.

We've had another basically stable week with little change - except that on the whole Brian is experiencing some improvement in his general well-being, though we both experience a bit of fatigue - then again, perhaps we're just getting old!

Actually I like it when we look at things and appreciative the positives  - not only personally but also in our communities or towns. It's one of the things Brian and I have enjoyed discovering in our travels, and it has prompted me to do some homework into just what it is that inspires towns to celebrate and hold festivals for. 
For example, did you know that:
 *Augathella QLD is the 'home of the meat ant'?
 *the 'big wheelbarrow' is found in Port Hedland WA?
 *the 'big koala' is found at Dadswell's Bridge VIC?
 *and believe it or not, the 'big poo' was once built at Kiama NSW!

Well, did you also know that in recent years Portland has begun a celebration of the Bonney Upwelling? 
This is a 7-month-long natural ocean occurrence where krill form dense swarms which trigger a feeding frenzy attracting whales, tuna, seals, seabirds and the like. Hence the Upwelling Festival held in Portland annually in late October, consisting of a street parade, markets, and a variety of artistic, musical and water-based pursuits. 
Yesterday (31 Oct) was the day of the festival and so Brian and I went for a bit of a drive around, although we didn't tackle the considerable crowds during the street parade. Even later in the afternoon there was still plenty of activity, musical performances, whaleboat races, amazing sand sculptures and the like.
It would have to be better than 'the big poo' wouldn't it?

Each school participated in the street parade, after making huge seabird puppets.  

The end of one of the whaleboat races held during the afternoon. 

Our drive also took us to check on Adrian's cricket - we hoped he would see us in the car  and do a bit of showing off, but not a great deal happened while we watched, although Adrian did take 2 wickets for the match.

 

24 October 2015 Some local fauna... and is that flora on a fence??

We've had a stable week - and that has to be good. 
I am going well, and only have about 2 more weeks before I can finally throw away the steroid drug I am on (dexamethasone). The drug has done its job, but it is a very gradual process to reduce and finally stop its use, and my body is giving me some typical withdrawal side-effects - things like bloating on the face and feet, scaly skin, appetite changes and the like - though not nearly as bad as withdrawal symptoms from some people I have heard of. 

The other good thing this week is that Brian has been back to his GP who has placed him on a different (and stronger) pain-relief to trial for a week. While it is not a magic answer, Brian has felt considerably improved in both his foot and bladder issues and is starting to look like the 'old' Brian again.  We'll see what happens when he returns to the GP next week, but I sure hope he can continue on it as it is the first thing in a long while where we have seen a noticeable improvement in his day-to-day wellbeing.

Take a look at this photo, taken on our nature strip this week. It's rather cute but is actually wrecking the tree foliage, as there is quite a large koala population in Portland. They can be very noisy blighters too, especially at night-time (not to mention stirring up all the local dogs). Dale mentioned that a koala was the cause of a 3-hour shut-down at the Portland Aluminium Smelter the other night when it was found in the Electrical Switchyard - no doubt leading to a sad demise for itself (and the potential for a serious smelter shut-down had it continued for much longer).

Mother and child...

And I couldn't resist getting Brian to stop the car on the way to Warrnambool yesterday. Anyone who has traveled this road will have noted the strange 'growth' on the side fence, so take a closer look. It definitely keeps increasing too, so who knows where it will end?

 

 

Friday 16 October 2015 A visit from the Thompsons

In the past weeks we have really been blessed to have opportunities to go away for a few days, or have people come to visit us. During the past week it has been wonderful to have Coral (Brian's sister) and Vivian spend a few days with us. The first thing they did was make the 1000+ km journey from Port Lincoln to Portland in a single day - no mean feat, especially with the strong possibility of getting lost in Gawler - something Brian and I seem to manage with monotonous regularity whenever we travel to Port Lincoln.

On Monday we went to Warrnambool, mainly so I could have a routine post-operative appointment with my neurosurgeon Mr Tiew Han (the same surgeon who operated on Brian's neck about 4 years ago). He was very impressed with my progress, as he'd been concerned I may have been left with a continued legacy of back pain - and he couldn't wipe the smile off his face when I said I basically have none at all. He thinks I must have a very high pain threshold - whereas I think I have a very high prayer threshold! 
He showed us my back xray on his laptop - an intriguing combination of screws and wires. 
I am to have another xray taken in 3 months just to check that I don't have a screw loose - and that is quite literally! Hmmm

After a bit of shopping we headed off for lunch at Fishtales Cafe.

It was a huge lunch at a very respectable price.

Brian was especially impressed with his delectable iced coffee.

 

And on the way home we took the time to drive through Tower Hill (near Warrnambool) - the wildlife reserve in a volcanic crater - something we normally just drive past as we travel from A to B.

I kept my window closed as I've never been all that keen on the beady eyes (and pointy beak) of the emu.

Back in Portland there was some backyard action - with the demolition of the old cubbyhouse. This will enable us to replace the side fence, so it was a great help to have some help to get this task done.

All in all it was a lovely visit, and we hope we haven't worn everyone out with the extra jobs that have been achieved.
 



 

8 October 2015 A Holiday in Dunkeld

Having had to cancel our holiday to Dunkeld several months ago, Brian and I decided the time was right for having another attempt at a stay at the wheelchair-accessible holiday house called Sturgeon View Holiday house. So Monday morning saw us head off in very warm and breezy weather, and discover a slightly dated but wonderfully convenient house waiting for us in Dunkeld. 

It was a very relaxing spot to be and we stayed for 3 nights.

One of the best features for me was the layout of the kitchen - with the low benches I could wash dishes, cook at the stove and altogether just manage the food with great ease, especially as I could wheel under the benches as well. The toilet/shower was very convenient too, and had been well-thought-out. There were no steps anywhere in the whole house, so it was very easy to move around, and in and out of the house.     Despite being a bit low for Brian, it still worked ok for him too.

 

We went for drives, and took this photo (from Mt William) of one of the approx 15 landslides that took place early in 2011 when floods flowed down from Queensland and severely affected this area (including Horsham, when Mum had to be evacuated from Trinity Manor when the Wimmera River flooded).

Naturally there were drives into the bush - but because it has been such a dry year, the orchids were in short supply and difficult to find.

That doesn't mean Brian didn't find any though...

In the lovely warm weather, it was necessary at one stage to enjoy a licorice ice-cream at Halls Gap!

I had a look at the Halls Gap Zoo - trying my best to stay on level ground whilst focusing on the variety of animals that are housed there.

I think the fallow deer were somewhat confused to see me in a wheelchair - they are usually very cheeky  and not exactly backwards when it comes to taking food from any bag held by an unsuspecting visitor. Me? They just looked at me, and didn't come near unless I tossed some pellets straight at them!

So all in all we had a lovely time in Dunkeld and the wider Grampians.
We arrived home on Thursday afternoon -  feeling quite exhausted!
Nevertheless, we are grateful for the chance to have a change of scenery like this, and perhaps we'll do it all again one day - but take it a bit easier next time!

 
 

Sunday 4 October A new month, new horizons?

Well the calendar has turned over again - and it has been a time of stable health for myself, but slightly less stable for Brian just now. It's a shame we can't seem to coordinate things a bit better but this evening we suddenly realised that the last time Brian saw his neurologist, he decided to try Brian on a different brand (but same Levodopa amount) of Parkinson's tablet. We now believe that if Brian is having a 'worse' day, it is worse on this different brand - so we'll go back to the original brand we think - and see if that helps again?? Worth a try we believe... 

The month has started with Caitlin's birthday on the 2nd, and it was a delight to welcome Simon and Caitlin here for the (somewhat controversial) footy finals long weekend. 
We met at the very Hawks-inspired Gollasch household to watch the footy, and tried to be gracious in defeat, having decided to barrack for West Coast.

Early in the game we watched the TV with some interest and passion, but as the match progressed, so did the wanderings away from the TV! What a shame it wasn't a more exciting and closer game.

Meanwhile we had a lovely time with Simon and Caitlin, as they 'to-ed and fro-ed' in glorious Spring weather with little walks around the Portland lagoon, or paddling at Nun's Beach. Along with Adrian and Dale and Kodey popping in and out we had a lovely 'Pfeiffer' weekend together. 

Under the 'Peace' sign at our front porch.

Tomorrow the warm weather is meant to continue - and Brian and I have re-booked the Holiday House at Dunkeld that we had to cancel a while back, so tomorrow morning we will head off for 4 days. We will play it all by ear, and be as quiet or as 'energetic' as we want to be. 
We'll let you know how we go!

 

Monday 28 September - An 'Out-of-doors' Time

How nice it is to get out of doors now that the weather is finally improving. 
I include the following photo of our outside fernery - simply to share what a delight it was to get outside the other day armed with gardening gloves and secateurs, and to roll along in the wheelchair clearing things up a bit. This was the first time all year when I was able to actually feel I could do something  useful out-of-doors as it was quite a handy height to manage.

The left side doesn't have a timber border so I rather inelegantly got 'bogged' when I wasn't watching where I was reversing in my wheelchair!

And then on Friday, Brian and I joined with friends Jeff and Eunice to have a day of exploring for Spring orchids. 
We headed northwards past Heywood, Casterton and tiny old townships like Digby and Merino and then had lunch at a pretty spot called Bailey's Rocks. Brian, Jeff and Eunice all had a good explore at the various stopping spots, and found a variety of at least a dozen different and beautiful native orchids. Sometimes I'd hop out in the wheelchair, but mostly I could see some from the car window (and I also came prepared with the paper to read). 
We all enjoyed the day - and Brian and I came home surprisingly tired. 
I'll include a few of the photos taken - but they are only a small snapshot of the day's efforts!

A pretty picnic spot to enjoy lunch.

Jeff checking out an unexpected 'find'.

Eunice and Brian with cameras capturing the moment.

 I marvel that the following all come under the heading of 'native orchids' as they are all so spectacular and different in their own ways.

 

 

 

As  I said, these are only a very small representation of photos taken!

I just thought I would let you know too that the lady I mentioned recently (Villie, from Fiji) has now had her spinal tumour removed in a lengthy surgical procedure at St Vincent's hospital in Melbourne. It is looking like there has been an answer to prayer, in that this tumour appears to be benign, and not a malignant cancerous tumour. She has retained all spinal cord function, and has only minor nerve damage, but is doing very well and should be back in Portland very soon. As I said, an amazing answer to prayer! 

I too am feeling very well, with very little pain and I am continuing to lessen the pain killers. 

Brian has ups and downs with his health and and wellbeing - some good and some not-so-good days so we just have to go with the flow and take each day as it comes.

24 September 2015 Thursday

Last Sunday was a special and unexpected day.
First of all, Brian and I went to church and it was one of those worship times where every word spoken was relevant and every song sung was exactly the right one! We were uplifted  to be there.

After a late lunch Dale popped across the road to say g'day, and then there was a further knock at the door. 
Next thing, in walked Sonya (from Albury) with three of the four children in tow (Morgan was napping.) We had no idea they were coming so it was indeed a surprise to see them all. Scott stayed behind for work (and no doubt some peace and quiet), but the next few days for us were spent having delightful times with Sonya, Liam (9), Lauren (5), Kaylee (3) and Morgan (18 months). They didn't sleep here, but we soon had an impressive coverage of books, toys, games, craft supplies and the like - that remained until they left yesterday. 

These next few photos are unashamedly devoted to them! 

Poor Nan got stranded in her sitting chair on quite a number of occasions, while the children practiced driving the wheelchair around safely inside! Liam took this very seriously.

Kaylee was keen to have a go with a willing Lauren to assist from behind.

No way was Morgan going to miss the opportunity to push from behind!

Meanwhile Poppy and Morgan connected on a personal level - and in fact Morgan showed little interest in the toys, but rather moving stones from the candle holder to Poppy and back again... or locating any remote control within cooee. 

Blonde hair and blue eyes - so different from the other children but just like his Daddy.

Much time was spent enjoying stories... as if Nan minded!

You always know it will never work when you try to get the 5 grandchildren together for a photo (this includes Kodey)          - but it doesn't stop you having a try anyway!!!

It was such a lovely few days and we enjoyed every minute (but I will say we slept well at nights!)
 

19 September 2015 ... and a detour to Mt Gambier and back

Yesterday we made a visit to Mt Gambier. 
Firstly we needed to purchase a new tyre - thanks to our recent mishap (which was irrepairable) on the way home from Melbourne. Now it's done so we hope we never have to play around pulling out wheelchairs in the rain again in order to fix tyres that have been attacked by stray drill bits.

Meanwhile, we had the opportunity in Mt Gambier to check out some different shops and eating spots - and take the new red wheelchair for a bit of a spin. 

Enjoying a meal at Sorrentos

 Actually when I say 'take it for a spin' - I need to say that I am being a bit more than cautious. The day before I had been sitting on a special cushion in the wheelchair when I did a quite graceful slide forward with the cushion and landed on the ground (on my left side) right in front of the visiting OT! Of course, while I knew I wasn't in any way hurt, she had to do the right thing thing and amongst other things contacted my GP who ordered an xray on the left hip and pelvis. What a pill, as I knew I was fine!

On the way home, Brian wanted to check out if there were any scented  spider-orchids at Swan Lake, just off the Mt Gambier Road. So off we went in search.

From the Highway you can see the sand dunes and sea.

While Brian searched for (and found) some of the spider orchids, I stayed at the car keeping watch.

Before long, along came some dune buggies, and with their orange flags up high, off they entered the sand dune area. Brian and I have done this before when we had our Suzuki, and it was great fun getting past the initial sharp dune rise and into the 'lunar-looking' sandy landscape beyond, quite amazing to see.It's one of the few places in Victoria where vehicles are allowed onto the sand dunes. 

From there it was basically back to the highway and home again - feeling surprisingly tired after what was really a rather straight-forward outing.

However I am feeling more than sad right now, as I have just heard today that a dear Fijian Christian friend has just been diagnosed with a severe pain-inducing tumour on her own spine. She has been airlifted to Melbourne for surgery today (Saturday) and the whole family - including 4 school-aged children, must truly be in a state of shock.
And another of our kind local friends has also just had a fall and injured a vertebrae on her back. 
What is going on over here???