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)

 

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!