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  



 

25 April 2016 Autumn, ANZAC Day and a New Drug

ANZAC Day - and I don't think I can ever remember such a glorious Autumn day for this day of remembrance. The sun is streaming through the windows and we are enjoying wearing T-shirts instead of the usual coats and umbrellas for this time of the year. Unbelievably we are still watering the garden as it is very dry so we would very much welcome rain right now.

It has been a lovely time for visitors, and we loved a catch-up with Wendy (my cousin) and Kelvin from Crystal Brook. This weekend Brian and I have also enjoyed the company of my brother Geoff. We've been for a few drives, enjoyed a meal out and also continued the garden reno which is now looking downright respectable! Just a few new plants to buy now to finish off the job - and that's the fun bit.

Geoff and Brian at the 'Yellow Rock' lookout near Portland.

 Last week I had an appointment with my oncologist, following the disappointing results of my recent CT scan. I am now feeling much better and I was surprised at how much more breath I had singing in church yesterday! The oncologist said the pleural effusion is likely to be connected to the cancer - perhaps my lungs just 'throwing a tanty' at the invading cells in my body. It's possible but unlikely that the fluid will build up again - another xray in a couple of weeks should confirm this.
However the primary tumour in my kidney has increased in size by 15% and there are some new spots on my right lung, though strangely enough some other previous spots have disappeared. So the treatment of all this is to continue to fight the actual cancer - there is no point in removing any tumours because (in the words of a previous specialist) "the horse has bolted". 
So we are now up to Plan C - and I've started on a new drug called Sorafenib. It's a similar drug to the first one in that it's not chemo but rather a targeted therapy drug in tablet form. This is a good thing as these tablets target the renal cell carcinoma cells and leave most of the good cells alone. I take 2 tablets twice a day, and despite these tablets looking all very innocent, it took quite a bit of courage on my part to actually start swallowing yet another potent pill. Of course they come with a list of possible side-effects a mile long, but most are unlikely. Weirdly enough, a common side-effect is hand/foot syndrome, where the palms of the hand and soles of the feet can get very hot and painful, and even blister. But anyway, so far so good and I'm feeling hale and hearty at this stage!
Of course these drugs don't come cheaply, and if I was paying full price for these new tablets, I worked out that each pill would cost $50 - so that would be $200 a day! Fortunately we only pay $6.20 for one month's supply.

$50 bucks plus $50 bucks... twice a day!!

It's a bit embarrassing to show my weekly pill collection, but Brian said I should!

Other than a bit of tiredness, I am feeling very well - with no pain. Remarkable, but when you see the pill collection above I guess that explains why. Equally remarkably, I am feeling positive, knowing that even if treatments fail, I am confident and secure in my ultimate destination.
Meantime, there's lots more I'd like to do on this earth, so please pray that this new treatment might have the desired affect!

16 April 2016 Of lungs and 'Mr Amazing'

Oh the difference a day can make.
As stated in the previous blog, I have just had a CT scan, and I was quite pleased to not hear anything back from the oncologist for a few days, believing this to be good news for myself. 
However on Thursday afternoon we had a call from him, saying "Lorraine do you feel breathless?" Well, strangely enough I have had some breathlessness (most noticeable when I am talking a lot, and that's a form of exercise I don't intend to give up!). So when I replied that I do a bit, he said, "You need to get to the hospital today!" Well I talked him into making it the following morning, and that's where further xrays indicated pleural effusion which required draining. So off I went for a relatively painless procedure where they drained off 1.3 litres of fluid from my left lung (not 2.3 litres as I was previously told). There's only meant to be several teaspoons of fluid in the membranes around each lung apparently. Anyway after another xray, the hospital doctor was so excited at the difference that he dragged Brian and I off to the nurses station so he could show the 'before and after' pictures on the screen to us! I will need another xray in a few weeks to see if there are signs of fluid building up again. Hopefully not, but meanwhile, happily I am now back home again.

The other disappointing news from the oncologist is that the immunotherapy treatment is not doing its job - some spots on the lungs have disappeared but other areas have increased (eg the tumour in the kidney itself). It's even possible that the lung fluid is a rare side-effect of the immunotherapy. So this treatment has now ceased and I will find out next week more about what the next treatment option will be. 

In the middle of all this, Brian and I have had to make some decisions about needing extra help for the 'bigger' gardening jobs. It's a hard thing to do, as 2 or 3 years ago we would have had no hesitation in doing these jobs ourselves, so we've just had to swallow our pride and start scouring the papers for possible gardening assistance. One ad caught my eye, and so a short time later saw me dialling "Mr Amazing" Handiman. Within an hour an early model Holden commodore bearing interesting signs like "Caution, Right Hand Drive Vehicle" and signs and stickers like "American Police Car" stopped outside the house and out hopped a bright-pink-haired middle-aged man. We discovered however that Mr Amazing actually has the less flamboyant name of "Brendan" and any initial reservations we may have had quickly disappeared. He said he could start the very next day so while I was languishing in hospital, he arrived and my goodness - Mr Amazing he is indeed! 

Within 2 1/2 hours, Mr Amazing had removed over 15 metres of old rotting sleepers, cut them up and taken them to the tip, put in the new sleepers, and was sitting in the kitchen with Brian enjoying a cuppa! 

So we are looking forward to his return on Monday to continue the garden reno. We also discovered that his pink hair is due to his fund-raising and awareness for cancer research, so all in all, he has turned out to be a real 'find'.

11 April 2016

Once again, I am delighted to report that I have been feeling remarkably well over the past few weeks - with virtually no pain. I am so happy about this that I asked the nurse overseeing my medications if she thought I could reduce some of my considerable number of pain relief medications, but she quickly responded that "if it ain't broke, don't fix it". In other words, enjoy and appreciate it instead of changing anything! 
Brian meanwhile is much the same - that is, some good days and some not so flash. I guess that's better than all days not so flash...

This morning I had a CT scan - this follows 3 months of being on the new immunotherapy drug. Last time I had a CT scan done here at Portland they had a lot of trouble finding a vein, but today before starting, the radiologist and nurse (both Christians that I know well) said a prayer over me, and boom, not a problem - they found a good vein first try! I haven't got results yet, possibly only next week when I go to Warrnambool for the next infusion. 

Less than 3 years ago, I had the privilege to be part of a Compassion Insight Group to travel to the Philippines and visit child sponsorship programs in action. Included in this group of 9 were my brother Geoff and Simon & Caitlin. We met many wonderful people, including some amazingly mature young adults taking part in a Leadership Development Program. One 17 year old girl Jessa, had just lost her sponsor, and so Simon & Caitlin took over this sponsorship so that she could continue in the program. 

Here she is on the left, at one of the Projects we visited. Such gorgeous kids!

The reason I mention this is that Jessa is graduating from the Program this coming weekend, so Simon & Cait are travelling to the Philippines for her graduation! They will also visit some other younger children who are being sponsored by people from S & C's church in Melbourne, so it is all very exciting for them. They'll complete their travels with a few days in Singapore with my niece who shifted to Singapore to live 2 months ago. This mother will be saying a few prayers for them, but trust that they will all experience a wonderful 2 weeks away. 

This envelope in our letterbox recently gives new meaning to the term "snail mail".

 

 

 

28 March 2016 ...and a lovely Easter it was too

The past fortnight has been very stable for me. 
I'm not quite sure why, but over the past 2 weeks I have not had any 'break-through' back pain at all, so I am reveling in this 'freedom' and doing all sorts of extra things, not to mention being able to thoroughly enjoy the Easter season with Simon & Caitlin as house guests.
However I know things can change very quickly for anyone on a cancer journey, so I'll simply enjoy the moment. Pain is such a pain!
On 23 March it would have been my mum's 97th birthday, and despite the fact that she passed away almost 2 years ago, this was one of those moments that I really missed not being able to arrange a visit to Horsham to see her, or ring her up for a chat. It reminded me of the time many years ago, not long after Brian's mum died, that 2 year old Simon asked me who I was talking to on the phone. When I said "that was Nanna" he asked "Was it Nanna in Horsham or Nanna in heaven?" If only we could!

I thought I'd be very organised for Easter this year, so early on, Brian and I bought a few Easter treats for the family in readiness for the season. But 2 days before Easter, I had a phone call from the pathology department of the local hospital. My heart sank as I had recently had bloods taken there, but then they informed me that I had won first prize in their Easter raffle! Brian had an appointment with the Diabetes Educator (he has Type 2 diabetes) at the hospital that afternoon so after seeing her we picked up our prize and then sneaked guiltily back to the car - hoping we wouldn't encounter her along the way! Anyway all was well, I became very popular, and family and friends didn't object to being to enjoy some early extra Easter treats.

Portland was abuzz with Easter visitors for the weekend.
We went for a short drive to see the gannet colony, and Simon and Cait went for a walk along the Enchanted Forest walk - part of a wonderful 250km walk around the forests and sea views in the Portland region. We also enjoyed a short walk around the outdoor market on Saturday morning. I discovered that being in a wheelchair does have certain advantages, as people readily smile and make way for me amongst the crowds. Simon found that it was good to follow behind me as I could then pave the way for him (he was also very helpful for me whenever we came to rough bumps or uphill treks).

The season of Easter rolled along with its myriad of emotions and it was good to participate in the different worship opportunities, from Good Friday and into Easter Sunday. 

After Easter Sunday worship

It's now Monday, and the house is much quieter today. Simon and Caitlin arrived safely back in Melbourne last night, watching very carefully for koalas as they almost hit one near Tyrendarra when they travelled here on Thursday night. We've got a koala again in the tree on our nature strip. Brian watched it climb up the tree, then promptly climb back down again. Perhaps it noticed that it had already eaten out all the new growth of the tree so there wasn't much left to eat. However, this morning it was back again so the pickings in other trees can't have been much good either.  

A happy, healthy and blessed Easter to you all!

15 March - Another Month Half Done

Another month half done indeed.
Every 2 weeks Brian and I travel to Warrnambool for my treatment. I've had 4 so far, and am very blessed to be suffering no side-effects from the drug (that I know of). The infusion  only takes about an hour (Brian reckons the bag looks like it only has about half a glass of the 'liquid gold' drug in it), but I'm one of the last people to leave before lunch-time as apparently there is a lot of paperwork involved with this drug while it is still in the trial stages.
Ah well, I guess that means we have to look for somewhere nice for a bite to eat before heading home.
My back pain seems to have eased somewhat, and I am better able to manage it with the assortment of drugs available to me. Brian meanwhile still has ups and downs, and after a really good patch, he has just had a few bad days - so disappointing and frustrating for him.

Otherwise I'm going along quite well really, keeping myself occupied writing church news for the local Portland newspaper, playing/singing in a church band, pottering in the garden here and there, lots of reading including some book reviews for my good friend Nicky for 'Abundant Life Books'. Prior to this illness it had given me much pleasure to work as a volunteer in the shop, which is filled to capacity with beautiful giftware, books, music, cards and the like. Unfortunately now I can't fit my wheelchair down the aisles!   
Last week Brian and I felt pretty 'energetic' (for us) so we drove to the nearby Portland lagoon and we were able to hobble and wheel ourselves right around the lagoon track. We enjoyed the bird life and had plenty of photo stops along the way. It was very good exercise, and worth the stiffness we experienced the next day!

This small egret reminded me of myself - trying to balance whilst standing on one leg!

 We are now looking forward to Easter, to the special services and being joined by Simon and Caitlin.