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).