"Coldfingers" (with apologies to James Bond)

You'll be pleased to know that our social life has continued and life isn't just restricted to hospitals, doctors appointments and visits from Donna, our wonderful Community Nurse.

While Kiwi Pete was staying with us, it was decided to again make use of the "smoker" that John & Nerida had given us a while ago.  Having neighbours like John and Nerida is priceless.  They came for dinner along with Joe & Leona and we decided to have smoked trout. 

So Pete and Alex headed off to the Sydney Fish Markets to purchase said trout.  While they were trout hunting, a serving of Sydney Rock Oysters jumped out and Alex managed to catch them ...  Thanks Pete for the photo!

Pete saw some green mussels and decided he would treat us to one of his special "Kiwi Mussel entree". 

For me this was a real treat - all I had to do was make the salads and dessert, and the boys were looking after the entree and trout.  This meant that the boys congregated around the smoker

waiting for it to heat up enough for the trout to be put in to cook.  Apparently a few cold beers helped the process as well.

Pete then did his bit for the entree

and we all enjoyed a delicious meal washed down with a bottle or two of red wine - courtesy of John & Nerida - and enjoyable conversation.

We went up to Bathurst for the weekend to help Tracey celebrate her birthday.  Back in Sydney this week was taken up with visits from Donna and then to hospital for two doctors appointments on Wednesday.  Alex had to give blood on Wednesday because chemo was booked for early on Thursday morning, and just after we left hospital on Wednesday the hospital called to say that he needed another blood transfusion and this was booked in for Saturday.  This came as a shock but we were very thankful one could be arranged so quickly, and during the Easter weekend as well - and that his chemo treatment could still go ahead.

We arrived early on Thursday for chemo and Alex's favourite corner chair was available.  He had his laptop and movies organised and just before Nurse Jane came to insert the cannula and drips, one of the volunteers came around with a huge smile & bunny ears offering mini Easter eggs.  She was lovely and she certainly added a lot to the atmosphere.  Knowing what was the come with the treatment, Alex had his hot coffee early and so the mini eggs were very well timed.

Alex has dedicated this chemo treatment to James Bond - and has called it "Coldfingers".  All we need is Shirley Bassey in the background and perhaps the make-up and costume crew ...

Thankfully this time Alex only had to wear the cold mits and he was spared wearing the cold boots.  The treatment went very well and thankfully there were no bad side effects.  We've been very lucky in that regard.

We decided to keep up the tradition of going from chemo to a cafe for lunch and we settled for "Jack and the Beanstalk" - a new cafe around the corner from us in Dulwich Hill.

We spent a quiet Good Friday at home and this morning we were back at hospital early for Alex's 3rd blood transfusion.

It is surprising what you get used to isn't it? 

It really is hard to believe that we would ever become so familiar with the layout of the RPA car park (and get very excited when we find a vacant space!) and walking in and through the hospital up to the Chemo Suite has become "normal".  Alex has his favourite corner chair, and instead of going to the cinema in the evenings to see a movie, he now watches them while having a coffee as the chemo or blood transfusions do their thing.

A very different week ...

I am trying NOT to blame my Banana Bread for this week's events.  Since Alex had his new chemo treatment last Thursday, life has been good.  Alex has been well but tired and his appetite has been quite good.  On Tuesday night we enjoyed dinner at home with Leon and Celina and we finished up with a slice of toasted banana bread.  I'd made it that afternoon.

Alex left to drive Leon and Celina home and returned home around 10pm very unwell.  The information sheets about the new chemotherapy treatment did list nausea as a very common side effect, but we had both assumed this would not happen 5 days after the treatment.  Alex continued to be unwell and so just after midnight we drove to the Emergency Department of RPA.  Thankfully we were admitted immediately and the staff on duty looked after him incredibly well.

On Wednesday morning Alex was sent up to 6E3 - the ward he had been on when he was in hospital the last time.  This time, he was given a private room.  He had settled down well after drips had been inserted to rehydrate him and he responded incredibly well to the treatment.  He had his laptop, movies and two books to read and this time one of the nurses even managed to buy him a newspaper to read, so he was very comfortable indeed.

He was allowed home on Thursday afternoon.  This was perfect timing because on Thursday evening we were due to be at the Sydney Conservatorium of Music at 7pm.  One of our friends - John Marhin - had won two tickets to attend the 'New Beginnings' performance by the Enigma Quartet.  John had given the tickets to Alex and I - thank you John!

A night out where people "dress up", at the Conservatorium listening to a string quartet play classical music is certainly something different for both of us. 

They played Joseph Haydn's String Quartet in Bb Major, Op.74, No.4 'Sunrise'; Philip Glass' String Quartet No.2 'Company' and Johannes Brahms' String Quartet No.1 in C Minor, Op.51 No.1.  Enigma has Marianne Broadfoot on the main violin, Kerry Martin as second violinist, Shelley Soerensen on the viola and Rowena Macneish on the cello.

It was a wonderful evening - they were all extremely talented musicians and I was very surprised at how enjoyable it was. 

We walked back to the car and then decided to head down to Woolloomoolloo for one of our "fine dining experiences" at Harry's Cafe de Wheels.

We had been here many times before - always on the bikes - so it was good to be back.  It is a Sydney Icon - basically a range of pies and pasties, and served with mash, gravy and mushy peas on a paper plate, complete with a plastic fork and seating is on a park bench.  It certainly doesn't sound much at all, but it is usually delicious and the views are always great.  I think knowing you are next to a series of restaurants where a single glass of wine is probably more expensive than our whole meal just adds to the enjoyment!
Alex had the pastie and I had a "Curry Tiger"

We've also had a very social weekend.  Kiwi Pete is staying with us for a week and on Saturday night we all enjoyed another ISG get together.

The ISG is from my school days - the 4 of us have been great friends since High School (although Marlene - on the left - and I have been friends since we were 5 years old).  So the ISG is now the 4 of us and our partners.  Margaret gave me a sign that sums it up perfectly:  "We may not have it altogether, but together we have it all."

This morning the weather was glorious, and so Pete and Alex headed outdoors.  Alex started de-nailing some of the timber getting it ready to recycle

Pete took one look at our very messy backyard area and decided he would help by tidying it up. 

With the recent wet and humid weather, our brick yard had sprouted. 
Pete did an amazing job, and our yard went from this

to this

The yard was spotless by the time our friends arrived this afternoon.  Hugh & Sue and David & Kaori came for afternoon tea and we all had a wonderful time catching up again.
With a clear yard, Archie was able to kick his ball around and being a strong boy who is "four and three quarters" he managed to kick it over the fence.  Hugh volunteered for 'Dad Duties' and opted to climb over the fence to fetch it, rather than walk around the block.

It was easy from our side because we have a well positioned table next to the back fence.  It was much harder getting back ...
A well earned drink and something to eat went down well and a couple of hours sped by.

Hugh & Sue's son, Archie, really enjoyed meeting David & Kaori's elder daughter, Emma, and they had been playing together really well.  Archie had spied a packet of Whizz Fizz (a powdery sherbet lolly in a small bag) and I will finish this entry with Alex watching over Archie sharing his Whizz Fizz with Emma.  Priceless.

A busy week indeed ...

I'm going to start this entry with some really GOOD news.  We were at hospital on Thursday and Friday last week for appointments to see both Dr. Corey Lau and Dr. Steven Kao.  These are the two Doctors who are looking after Alex and their level of care, knowledge and approach make us so grateful that they are looking after him. 

On Friday when Alex checked in at the main desk, one of their jobs is to weigh him and note it in his charts.  And after his weight losses in the past, we were thrilled to see that HE HAS PUT ON WEIGHT!  Alex did wonder if this was because he had his wallet in his back pocket  ...  ???

It was great to get some good news though.  This was offset with the results of the recent scans.  It seems that the initial effects of the current chemo treatment were not ongoing and that new lesions were appearing.  So a new regime of chemotherapy was required. 

It seems we had the trifecta and so this week we had 3 treatments.

The first was booked for Monday, at Strathfield Private Hospital.  This was a "new" hospital for us so we've broadened our hospital horizons.  Part of the reason Alex has been feeling so unwell is that his lung has been filling with fluid.  This is a direct result of the cancer.  After discussing the options with both Corey and Steven it was decided to drain the fluid from the lung.  This should make Alex's breathing easier and will also give the new chemotherapy a better chance of working well.  Over time, his lung will most probably start to fill again with fluid but it makes sense to start with it as clear as possible. 

This seemed a daunting procedure, but Alex said it was the most painless procedure he's had.  There were scans done to determine the best place for the local anaesthetic

and then a needle was inserted.  This was attached to a syringe and following the images on the screen, the needle was moved around so the Doctor could draw out the liquid and it was pumped into a bag.

In total there was 600ml of liquid drained from Alex's lung.  We were assured that this was not considered a very large amount but it was easy to understand why having this amount of unwanted fluid would make life uncomfortable. 

The doctor left to move to the next patient and left us with Joanne, the nurse who had been setting everything up and doing the scans.  My mind was focused on the bag of liquid and I was quite surprised when Joanne said she was finishing up soon and was worried she would forget her chicken livers and post-it notes that were in the corner  ...   ???

It turns out that she teaches nursing at one of the Sydney Universities and that afternoon the student nurses were starting to study biopsies.

On Tuesday morning we were back at RPA very early for Alex's second treatment this week - another blood transfusion.  His red cells had fallen to extremely low levels - 'normal' people have levels between 110-120 and Alex's had dropped to 72.  This was even lower than it was a few weeks ago when he had his first transfusion, and so this time he was being given 6 units.

At 8am we were back in the chemo suite to start the transfusion.  This would take several hours, so fortified with the obligatory coffee and a few episodes of  'Sons of Anarchy' Alex was set.

There were several bags required, and the process was relatively painless. 

Liquid gold looks like this

So with clear lungs and healthy blood levels, Alex was ready to head back to the chemo suite today - Thursday - for chemo.  The new chemo is Docetaxel and this is also given every 3rd week, again by a drip into a vein.  This is a much stronger drug than Alex had previously been given.  It also has more potential side effects, but the main one is that Alex will most likely lose his hair.  One of the other major side effects is nausea and vomiting.

Alex chose his favourite chair, and Dipin was the main nurse looking after him today.  Dipin had looked after Alex for a few of his previous chemo treatments and so the conversation continued from the last time.  First they gave Alex a bag of Dexmethsone and allowed enough time for this to be absorbed - this helps fight the nausea.  Alex's dose of Dex is always increased the days around chemo, and for the Docetaxel our normal chemo doses were already doubled.

 

When they were ready the Docetaxel was started and this time, the nurses stayed with Alex for the first 15 minutes.  This is the critical time - if a patient is going to have an adverse reaction, it apparently is almost immediate.  Thankfully Alex had no problems (of course!) and for the next couple of hours, he was again settled into what is becoming his routine

Yep - coffee, something sweet (today it was a triple chocolate Belgian cookie) and a few episodes of one of his favourite TV shows - this was after he had read the now shrunk Sydney Morning Herald - the time it takes to read it now has also shrunk.

The major difference though soon became apparent with this new drug.  Dipin came out with a very large travelling cosmetic bag, and this was provided by the drug company.  It was like getting a sample bag from the Royal Easter Show - a soft toothbrush, toothpaste, mouthwash, digital thermometer, a tube of hand cream (not as good as Lanolin Beauty!), gloves and a bottle of Intensive Nail Hardener.  When Alex questioned the nail polish, Dipin said that it would be a good idea to use it because one of the potential side effects of the drug is brittle nails.  If Alex does use it, I promise to let you know and will gladly provide photographic evidence ...

The gloves were used - Dipin had removed Alex's shoes and had made sure the chair was extended, so Alex's feet were raised.  He then came out with a pair of slippers and mittens - except they were chilled.  It was like putting your feet and hands into an ice pack.  Hence the gloves on first.  The idea behind these was that the cold will shrink the veins and blood vessels in his hands and feet and so the blood circulation will be much slower.  Since the chemo drug is carried in the blood, it will be more concentrated on the rest of Alex's body and will therefore be far more effective fighting the tumours.

He looked like an explorer, ready to head off with Tim Jarvis should he decide to once again recreate Ernest Shakleton's antarctic survival journey

Thankfully Alex did not have any adverse reactions at all to the chemo, and he surprised Dipin and the other nurses by saying that he was hungry when the treatment had finished and he would be heading out for something to eat.

When we left the hospital, a sky signwriter had just started and we could see the first two letters

We hoped that he was not advertising for one of the drug companies - our first thought was 'Dexmethsone' and we wondered if he would just shorten it to Dex, as we call it.  We didn't have time to wait and see - lunch at one of our favourite cafes beckoned.

We headed off to Little Treasures in Petersham to share a lunch

A delicious reward.