8 February 2016

Looking at the date today, I realise it is exactly two weeks since my last blog entry. So today the Warrnambool procedure was repeated as I underwent the second of the immunotherapy treatments and I was better prepared this week with my kindle loaded up. One interesting comment from the oncologist was that the company that is providing this drug Nivolumab to me for free is now discontinuing the free form of this drug as of 28 Feb. This means that while I continue to be eligible to receive the drug for free for up to 2 years, no more free cases will be begun after this date. Nivolumab will still be available but at a massive individual price of over $100,000 per year or until it is approved on the PBA listing. Phew, I just got in by the skin of my teeth! Now I really have to pray that it works for me. I am not quite sure yet about side-effects, as I have had random days of troublesome back pain over the past two weeks, which may or may not be caused by the drug (it’s a ‘different’ back pain to the one I’ve had before). 

We’ve been having glorious summer weather over the past week or two, perfect for going for a drive along some of our favourite bush tracks, and this time we ended up at Dartmoor, a tiny township that is looking a bit sad right now since losing a timber mill - its only employment opportunity. It’s worth a visit though, to have a look at the creative chainsaw timber sculptures made from the stumps of cypress trees that have seen better days.

Brian inspects the chainsaw sculptures, under the theme of 'Fairy Tale' characters.

It always pays to keep an eye out for the 'locals'.

Meanwhile I continue to be amazed at the circuitous route of this blog! It has continued to spread and lead to re-connections with friends I haven’t seen for some considerable time. Thank you everyone for your encouragement – always very timely.

25 January 2016

Well today Brian and I got up pretty early for us. 
Normally the alarm goes off at 6am - and that's when we both start our daily medications. Can't you picture it? Alarm. Flurry of action at each side of the bed as we locate our pre-prepared pills. Glugs of water as we swallow them. Heads down as we resume sleep! Probably in perfect symmetry. A bit sad isn't it?

However today marked the first of my fortnightly immunotherapy infusions in Warrnambool so no luxury of a sleep-in. We allowed plenty of time to get there, though I don't know why as we did nothing for the first 2 hours other than fill out a few forms and wait around in the Oncology Day Unit. It seems that the drug is so costly that they don't prepare it at the hospital pharmacy until they know that the patient (victim?) is definitely there.
Anyway eventually all was ready and the nurse did a remarkable job of finding a vein as I am usually very uncooperative (not intentionally). The infusion itself only took 1 hour - and I was quite astounded at the puny size of the bag - as I had worked out that one infusion bag costs approx $5000 (which works out at $83 per minute - or around $1.40 per second!) Clearly I was bored, as I didn't feel like colouring in or doing dot-to-dots and had forgotten my book - so it was mathematical calculations and doing the puzzles page.
Happily, all progressed well and I couldn't feel a thing as this liquid gold made its way through my body. Hopefully there will not be side effects, but so far so good apart from hardly being able to keep my eyes open. Our prayer is that this drug (Nivolumab) will boost my immune system to attack those rogue cancer cells (and not attack other good cells which is a slight possibility). 

Next time I'll smile!

Pain-wise, I have had a very gradual improvement since doubling my Fentanyl patch, and will have regular catch-ups with the pain doctor in Warrnambool when I go for future infusions.
Brian too has had improvements, and we are very thankful for these positive steps.

Have a happy AUSTRALIA DAY tomorrow.

 

21 January 2016

There hasn't been a lot of progress over the past couple of weeks, except that unfortunately I have had an increase in back pain, so the pain relief options have had to be explored further. 
Today I heard from my oncologist, and I am to start the new immunotherapy infusion drug on Monday. The pain-relief specialist doctor will also see me in Warrnambool on Monday, so it will be good to see what suggestions she has. 

Meanwhile I have had a quiet few weeks, lots of reading, watching cricket and tennis, and even doing dot to dot puzzles (thanks to Sonya and Scott!) 

They go from 1-1000, and you have no idea what they will turn into!

 

Here's a finished one!

 
I've also been inspired by the following story. 
Perhaps it's because my hair is definitely thinning!

There once was a woman who woke up one morning, looked in the mirror, and saw that she had only three hairs on her head. "Great," she said, "I think I'll braid my hair today."

So she did, and had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. "Hmm," she said, "I guess I'll part my hair down the middle."

So she did, and had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only one hair left on her head.

"Wow," she said, "today I get to wear my hair in a pony tail." So she did, and had a wonderful, wonderful day.

The next day she woke up, looked in the mirror and saw that there wasn't a single hair on her head.

"Thank God!" she exclaimed. "I was running out of things to do with my hair!"

Let's be grateful for the things God has given us and have a wonderful day!

Psalm 34:1 I will bless the LORD at all times: his praise shall continually be in my mouth.

16 January 2016 Ups and Downs

Ups and Downs

Up - In the past week, we had a hot, northerly windy day of 38 degrees...
Down - ...and the next day we had a 'summery' maximum of 18.
Up - We have air-conditioning, making life comfortable regardless of the temperature.
Down - We haven't had any decent rain for some time, so the garden looks patchy and dry and needs more watering.
Up - Portland has been 'buzzing' over the past week with the arrival of 2 cruise ships. With up to 2000 tourists around the town from each ship, there have been people everywhere (including visitors from neighbouring towns), a large number of market stalls on the foreshore, a carnival and lots of tours going on. 
Down - I couldn't get close-up to the action, as my wheelchair is not conducive to grassy slopes! 
Up -  Brian is getting relief from pain with the nerve drug Lyrica. It just takes a bit of experimentation to adjust dosages for him to have maximum benefit, but on the whole he is feeling better than he has for quite some time. 
Down - Since going off my 'targetted therapy' cancer drug, I have experienced a lot more back pain. It shouldn't have made any difference, but who knows why? 
Up - After 'upping' one of my pain relief patches, I am getting some relief. My oncologist doesn't really know what might be causing the pain, so all we are doing is trying to manage the pain.
Down - I haven't yet heard from the Warrnambool Oncology Team as to when my new cancer treatment will begin.
Up - Brian and I managed to go for a lovely drive into the nearby Cobboboonee Forest. We stopped on the side of the road at a flat grassy swamp (aptly named Grassy Flats Swamp) hoping to see an elusive kingfisher, but it was not to be. However the setting was very peaceful and Brian got some great photos.

Grassy Flats Swamp

Another Up - I have had some lovely encouragement this week, in the form of emails, flowers and a daily 'promise of God' - all just when I needed it the most! 

Is there any more to be said?
 

January 2016 A new year, but no change to the blog name

Apart from the arrival of Arabella Maria Kuhlmann - third child and first daughter for Sally (my niece) and Christian, it's now official.
 
I DON'T LIKE THE FIRST WEEK OF JANUARY! 

January 2015 - scans bring shock diagnosis of advanced renal cell carcinoma - tumours in spine and left pelvis.
January 2016 - scans show cancer has spread to the right lung. 

After a recent xray, there was some muttering (from the report) that suggested I probably had TB. 
However a follow-up CT scan revealed numerous small cancer spots on the right lung. I was not surprised - one has to be a bit suspicious when the oncologist rings to bring forward my scheduled appointment to 'this week' instead of late January.


However, it's not all doom and gloom. 
The CT scan also showed that the bone tumours have been contained and in fact have decreased in size, particularly the one in my left hip (I take this as a go-ahead to do some careful walking with a frame, instead of only using the wheelchair).
So I will now go off the 'targeted therapy' tablet drug - not such a bad thing as I have been losing quite a lot of hair.
The next treatment is to be an immuno-therapy drug (Nivolumab) which I will receive intravenously every two weeks in Warrnambool. It's a fairly new drug - not yet on the PBS scheme but my oncologist will access it free (instead of $120,000 per year). It's not chemotherapy, but to put it very simply it works by assisting my own immune system to recognise and attack the invading cancer cells. I shouldn't experience significant side-effects, but of course they list everything from an itch to death! I'll begin the treatment in a week or two - when all the paperwork is completed. 

Enough about me.
After some very trying days of pain, Brian has now begun (at my suggestion to the doctor!) the nerve drug Lyrica, and after several days of trial we are cautiously optimistic of an improvement. Time will tell.

Meanwhile, we have enjoyed having our two little grand-daughters from Albury around for a play. This included some significant milestones for the girls - Kaylee turned 4, and Lauren lost her first tooth at Kaylee's 'fish & chips' party! 

 They headed back to Albury today, armed with a photo album of all their Portland adventures, and although life will be quieter we will all miss them (and the rest of the family who came for Christmas).


 
 

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)