31 May 2016 We're off!

Yes, after not having left Portland this year, other than day trips for appointments, we decided it if high time to see some different scenery.
A week or two ago, Brian and I looked at our calendar and discovered that there were no appointments for most of this week, so we decided to go for it and head away for 4 days. We decided to make Albury our destination, so I spent some time searching for accommodation that suits our needs (not so easy as some places that say they are wheelchair accessible have showers that are too poky for me to get into). 
Anyway we've decided to make Bendigo our first port of call, because Brian actually has a dental appointment at 8am today (he's there right now) and we don't want to make too much driving for today in case it's too uncomfortable for him.Over 15 years ago, when Brian was doing a lot of pretty serious cycling (such as cycling from Perth to Sydney in 2000!), he had a fall off his bike, landed on his face and broke his helmet as well as smashing some of his front teeth. Of course the time has come that the work done on his teeth at that time has deteriorated, so today he has a new rod put in to replace the one that has started to poke through the back of one of his front teeth. It really doesn't sound too pleasant... Hopefully we'll make it to Bendigo and then a shorter drive to catch up with Sonya, Scott and the 4 grandchildren.

Healthwise we are going along pretty well. I continue to tolerate the cancer drug well, and the minor side effects are well managed (though my hair sadly is thinning). On Sunday I had a minor glitch - nothing to do with the cancer - when my heart rate did a bit of racing and jumping about. It has done this on odd occasions before, and unfortunately makes me feel very faint so I was sidelined from church - most disappointing as I missed the faith statements of the wonderful young people being confirmed. It's all good again now.
Brian too has been quite well - continuing with pill adjustments to try to improve his quality of life. 
We had a busy weekend, enjoying the company of Simon and Caitlin, and also doing what we could to help Dale to shift house. I felt a bit useless, but managed to scratch together some food for everyone that was helping. Apart from some sore backs and achy bodies, we all survived!

I've always enjoyed this perspective on life!

24 May 2016

It's been a little while since I updated this blog, but there's not a lot that has changed. I have been back on the cancer drug Sorafenib for almost 2 weeks and seem to be tolerating it better this time. I still get a rash but it is the weirdest thing as it only appears when my skin is warm eg when I shower - when it covers my whole body but then it just disappears. The palms of my hands also go rosy red by each evening - a common symptom of the drug. 
Sadly my hair is definitely thinning a lot - it might not be too long before you'll see me in an assortment of hats. Not happy Jan! Apart from that I'm feeling very well. 
Brian is going a bit better now that he has 'upped' the patch for pain relief. Next week we will have an appointment on skype with his Geelong-based neurologist, together with his GP. Saves us a trip to Geelong for probably a 10-minute appointment, so we're happy about that. 
Meanwhile I can't resist putting in the following photo. 

Brian's wallet - after going through the washing machine!

Brian put a load of washing into the machine and at the last minute threw in his jeans as well. When he opened the lid, there amongst the socks and jocks were 2 $50 notes, some scraps of paper and 17 cards, not to mention a decidedly ruined wallet!  He was not such a happy chappy, but recovered quite quickly by going straight down the street to purchase a lovely new wallet from RACV while I dried off all the cards (checking carefully inside each item of clothing for any missing cards).

Makes you think! We just take literacy for granted in our lives, but imagine what we would be missing if we hadn't been blessed with the opportunity to learn to read - and be transported away by the combination of those 26 letters! I for one would be lost and am truly thankful for the books I can read and enjoy.

 

12 May 2016 Rash decisions?

After days of worsening rash (to such an extent that the spots were joined on my upper arms, thighs and torso), I followed the phone instructions of my oncologist and stopped taking the offending drug Sorafenib. The rash disappeared almost before my eyes, and within 2 days had virtually gone. My relief at seeing the rash disappear of course was tempered by the thought of the cancer cells being given the chance to multiply unhindered, so I had a few questions today for my visit to the oncologist, and we have a new plan of sorts. Basically I am back on the drug, and if the rash flares up again I will stop taking it to allow my skin a few days to recover, and then resume the drug on a lower dose. Hopefully my body will adjust quickly, as I am otherwise tolerating the drug very well. 
I was a bit disappointed to also learn that my latest chest xray showed a return of the fluid around my left lung. It's not bad enough to cause symptoms yet, but no doubt that will have to be dealt with again in the coming weeks. There's always something to stop boredom setting in.
Meanwhile Brian battles along with his typical scenario of good days and bad days. His GP continues to try new ways of managing the pain and discomfort he experiences regularly. He is currently putting up a new clothesline (ordered online, and which arrived in 4 days from Newcastle) in our undercover area. He will be very happy to not have to dash out to the outside line whenever a dark cloud appears (not to mention birds that seem to aim specifically for the largest items drying on the line). 

 

5 May 2016 And life gets a little bit dotty...

Well I've been on the new 'targeted-therapy' drug Sorafenib for two weeks now, and all has been going well. Well, that is, until a few days ago when I noticed some itchiness in the scalp. Hmm, was this an ominous sign of hair thinning or loss (one of the possible side effects)?
However this morning I awoke to a very impressive covering of red spots over my whole body. 

My upper arm - just a small sample...

Fortunately it hasn't been too itchy at this stage, though this evening my scalp is beginning to drive me crazy.
I decided to check with my GP as I wasn't looking very socially acceptable (my face and neck are covered too) and I was planning to interact with other cancer patients during the afternoon and I wanted assurance that I didn't actually have bubonic plague. Of course I didn't, and not long after this I had a call from my oncologist. He said that if it gets worse I should stop the tablet drug, let my skin recover, and he will then probably prescribe a lower dose when I see him next week. 
Hopefully things will improve and my body will tolerate this drug better. Very soon!! 

This afternoon I went along to a "Look Good, Feel Better" workshop. This is a national workshop, run by volunteers, and is available free to women suffering cancer. We were given advice for skin care and makeup changes during our treatments, and also had an opportunity to try on wigs and a variety of hats. The skin advice was certainly timely, and hopefully I won't need the hats, but more helpful was the reassurance from other sufferers who had also experienced skin rashes etc. We also came home with a lovely array of skin care and makeup freebies.

Incidentally I have had various people at different times say to me that they have had difficulty trying to leave a comment on this blog. It seems to be a clumsy system (or we are clumsy operators), but if you would like to contact us personally feel free to email us on blpfeiff@bigpond.net.au