Good News

ALEX  IS  HOME!!!

We've spent a week worrying about the meeting with the surgeon, scheduled for 2pm today.

This morning Alex had the last of the C1 Glowing Sessions.  The nurses had asked us to be back at the RPA Motel by 1:30 and they were quite surprised to see us back at 1:20 and were good enough to laugh and joke about it.

This was the longest wait we've ever had.  The neurosurgeon, Dr. Jeffrey Brennan, came in and immediately put us at ease.  He'd studied yesterday's scans carefully, and was very pleased to report that the fracture is holding its own and he would definitely NOT recommend surgery.

He said he would recommend another neck scan in 6 weeks and if the chemotherapy allows Alex's tumours to be controlled, he expected the C1 fracture to heal.  Three months is the earliest time to see if the fracture has healed.

After he left, we both let our breath out.

The physio came to show me how to deal with the neck brace and the nurses all came by to wish Alex well.  We were pretty happy to be leaving.

We don't have to go back to RPA until tomorrow - we have a meeting at noon to learn about the chemotherapy.

So tonight Alex is off to boys night!

Woohoo!!!

What does a Wolf and a Honeybee have to do with "One Day"?

Today was a really good day.

Alex was wheeled over to his Glowing Session quite early.  Again, he managed to convince the staff that he didn't need to be wheeled back, so they found a clean pillowcase for his medical files to be hidden in, and we walked back to the ward.

By now the nurses I think would be surprised if he did stay in the ward for the day.  If he did, they would have to assume he was ill!  He returned his medical chart, and assured them he was going out for a "coffee" and he'd see them all later in the day  ...  quite funny really.

Before heading to the office, Alex had in mind the coffee shop he'd like to try.  So with the "One day ..." theme in mind, we were very fortunate to find a parking spot right opposite today's cafe of choice.

Inside it was retro furniture, well patronised and a good vibe.

We ordered a latte each and shared the freshest slice of toasted banana bread we'd had in a long time

The coffee really was good, and when I saw the take-away cups, I thought back to Heather's comments yesterday about the 4 full time barristers at Campos and I did have to smile ...

Well fortified, we set off for some time at the office, then deliveries in Chinatown, a too-brief trip back home and Alex returned to Royal Prince Alfred Motel a bit later in the afternoon than we'd originally planned.  The nursing staff on duty when we returned just said hello to us as we arrived - as if this was quite normal for a patient to be away for most of the day!

Alex's parents and Simon arrived not long after we returned, so the timing was perfect.  Alex also had a visit from Joan, who is one of the Community Nurses.  Donna had advised Joan that Alex was in RPA so she visited to touch base and to see if he needed any extra help with anything.

Joe and Leona arrived next, just as Mr & Mrs Hage and Simon were about to leave.  We moved downstairs to the coffee shop and had a great catchup with Joe & Leona for a couple of hours.

Alex was due upstairs for his B12 injection.  This is part of the preparation for his upcoming Chemotherapy treatment we'll be finding out more about on Friday.

The return of Spiderman

Yesterday turned out to be quite a big day.

It was wonderful that Alex could spend a few hours at home. 

We celebrated with some of Tracey's delicious lemon tart that she'd made but all too soon it was time to return to the hospital.  As it was the weekend, we decided to try our luck finding some street parking.  Our luck was in, and we ended up with a free parking spot relatively close to the hospital.

Walking up Missenden Road, we spotted Bernie.  She was on a short break from work (within the hospital but in a department across the road) and she had gone up to the ward to visit Alex.  She did get a 'surprise' when she saw the mask and we were lucky enough to catch up with her.  Almost at the same time, Margaret & Frank and Marlene were walking out from the main hospital main entrance and so we all met up on the footpath.  By the time they had got up to the ward, one of the on duty nurses must have decided to cover the mask with the sheet and Marlene said she did wonder if Alex was hiding under the sheets  ...  ???

Marlene had brought Alex some of her mouth watering salmon log that she'd also made for the party, and since we now grab opportunities with both hands, we all had a mini party out on the footpath.  Margaret & Frank had brought Alex a box of Moon Cakes - who needs hospital food?

 

OK, I would have taken some shots of the salmon log, salmon dip & Marlene's Melba toast but I was busy joining in scoffing it!

Bernie had to go back to work, and we all escorted Alex up to his ward.  We hadn't even had time to all sit down when one of the nurses came around and told Alex that he was being moved.  This was his third move in as many days.  His "address" had changed from 8W2-10 to 8W2-3 (this was supposed to be a quieter area) and now his address was to be 7E1-42.  Simon, Dolores & Nicholas arrived just as we were about to move.  So we packed up all his belongings and the porter wheeled in the wheelchair to move him.  We all followed.

Later Muddy & Liz, Mark & Paul came to visit, so we moved down to the coffee shop downstairs.

So quite a good, social day! 

This morning, Alex managed to wangle a gate pass again (ie, he left the ward) and he spent a few hours with Simon.  I think by now word must get around the nursing staff that Alex is completely mobile, unlike many of the patients on the various wards, and the hospital is treated more like a motel!

He had a visit this afternoon from one of the doctors, but Alex was unable to convince him that it would be a good idea to discharge him early, and so he conceded this round of negotiations ...  :-(

Kitty came to visit in the early afternoon and was able to come along to see what happens during the Glowing Sessions.  A porter wheeled Alex out of the hospital, across the road and along to the Radiotherapy section.  By now, the girls in the reception area just smile and wave, calling out their hellos when he arrives.

We didn't have to wait at all, and Alex went straight in for today's Glowing Session.

This round of Radiotherapy is specifically targeted at the C1 area of his neck.  Instead of using his "tattoos" to line everything up, a mask is used.

After he is comfortably lying on the slab, his neck brace is gently removed, the mask is fitted and they adjust the slab.

Toby Maguire - be worried!  The entertainment industry has heard the rumour mills that after playing the lead role in the first three movies, and being replaced in the fourth, your agent was determined to have you reinstated in the lead role.  But Alexander Hage has wowed Sony and director Marc Webb and he is touted to replace Andrew Garfield as Peter Parker in the hush-hush fifth Spiderman movie, to be secretly filmed in Sydney.

So there! 

This is rumoured to be the "leaked promotional shot" for the fifth Spiderman movie.  You saw it here first!

 

Marc Webb has joined forces with Robin Cook, and the fifth Spiderman movie is touted to be a medical sci-fi thriller.  So it's great that the filming can be done under wraps, so to speak.

 

With Alex settled, the mask in place, and the film crew's equipment hidden out of sight, the nursing staff return to their desks and monitor the process.

Kitty has been sworn to secrecy, and so we tried our best to act relaxed when the new Spiderman star joined us after the filming.

We had a chat to Heather, one of the nursing staff out in the main waiting area and she extolled the virtues of "the best affogato outside of Italy" served at Campos, our favourite cafe just up the road.  The coffee there is the absolute best according to Heather and I gather at least 85% of the RPA nurses - the place is busy enough to employ 4 full time barristers. 

Sadly, Alex didn't have the energy to walk up that far, so after hearing about this wonderful coffee, Kitty had to settle for a Linford Christie (a long black to the uninitiated) coffee back at the hospital cafe with us.

After coffee and a chat, Kitty left and we met up with Marlene as we headed back up to 7E1-42.  We'd not long settled back at his bed when a male nurse arrived to take Alex's BP, pulse and temperature.  He ended up taking my BP as well - he must have needed the practice!

We were then VERY surprised to see M arrive.  She was as polite and friendly as she was on Friday.  I think we were even more suprised to see that she was accompanied by the female registrar - the subject of our official complaint.  Throughout their whole visit, M did all the talking and this time the registrar kept her mouth firmly shut, writing notes and Marlene noticed that she did glance occasionally at both Alex and I.   

We left soon after as well - after such a full day, Alex needed a bit of R&R ...

 

Good news Sunday

Yesterday - Saturday 22nd - seemed to pass in a blur.  I made several trips to and from the hospital and we were resigning ourselves to Alex being cooped up within the hospital building until at least Thursday.  They were reluctant to let him out of the front door, but he could go downstairs to visit the coffee shop there, and there was a lounge area on level 8 near the entrance to his ward.

Tracey and Mike were visiting this morning.  Tracey was bringing some of the lemon slice she'd made for the Glow in the Dark party we were due to have last night but had to cancel.  Alex phoned with exciting news - they were going to let him out on a day pass for a few hours!

So we went up to the ward to collect him.  Mike had brought with him the mask he was planning on wearing at the Glow in the Dark party, and we couldn't resist this photo of Alex

But we also thought wouldn't it be lovely if we left something for the nursing staff who were going to be on duty while Alex was out for a few hours.  So we made the bed, and thought this may give some of them a giggle.  Just as we had made the bed, one of the trolly ladies poked her head around the curtain to ask Alex if he'd like a tea or coffee with a biscuit, and she certainly got a fright!

We left the ward, and wondered if anything would have been said if anyone had seen Alex wearing the mask and following Mike out of the ward.  This is the signs on the entry doors, that are always secured.

 

???

Continuing the "forklift" theme

We're still waiting for more entries in the "what you can use a forklift for ...." category.

When I returned home very recently, I found the biggest box of chocolates I have EVER seen waiting for me.  It was perched out of public view on the front verandah.

It was so   e n o r m o u s   that I could have done with a forklift to get it into the house.

I struggled with it - barely fitting in the front door - and almost got a hernia lugging it down to the kitchen.  Before opening it, I had to have a rest and of course one has to have evidence of this.

So thank you Michelle!  For the biggest box I've ever seen, for the exercise getting it into the house, for the entry into the "forklift" category and now that it is open, for the yummy contents.

Just to give you some idea, here it is with a couple of well known items to show you the scale of the box.

OK, so wine glasses can be misleading.  So here's one item that you should all be familiar with!

A day like no other

Friday.  21st September 2012. 

Hey, it's just the last working day in the week, yeah?  Well, for most people that's what Fridays are all about.  They've even got an expression for it.  TGIF.

We did have a hospital appointment, but these days, it seems we do have to visit RPA most days for something.  We joked that we should have an entry card for our favourite car park that gives our 10th visit free, just like the coffee cards that most cafes seem to have.

We get the Sydney Morning Herald newspaper delivered every day.  It's usually there when Alex goes out in the morning to pick it up from the front yard, but on Friday morning he went out to collect it and it hadn't arrived.  Then he saw the guy driving down the road delivering the papers, so Alex put his hand up just to see how accurately the guy could throw it.  He had no intention of catching the paper.  The guy threw it, it landed just near him and Alex bent down to pick it up.  In doing so, he felt a twinge in his neck.  Friday's paper is probably the lightest in the whole week, so he picked it up and brought it inside.

He mentioned that he'd tweaked his neck and it was a bit sore, so I said it was lucky that we were going to hospital that morning anyway.  Over breakfast, it didn't improve so we decided not to go to the office for some work first, and just head to RPA.

We arrived at 10am, parked and walked up the road for a coffee.  Our first meeting was at 10:30 and this was with the Radiotherapy Department.  On Tuesday, when Alex finished his course of treatment, there was  no meeting booked with the doctor.  We weren't really surprised, given our experience with the female Registrar. 

During the week, I had put in an official complaint about the female Registrar.  Our reason for doing so was in the hope that she would be spoken to and that no other patient/carer/family would receive the devastating treatment we'd received.  The process had obviously started, because her boss had phoned and made an appointment to see us.

So, we're at Radiotherapy for this meeting with her boss, and Alex mentions that he's got a sore neck and the reason was that he bent down to pick up the newspaper.  This is the first time I'd met the boss - 'M' - and she seemed to be very nice.  Alex had met her previously when he was in hospital.  She was aware of the complaint we'd lodged and she did say she would like that to be part of the discussion.

Her first priority though was Alex's sore neck, so she suggested that we go across the road to the main hospital and have it x-rayed.  We had a meeting with Eddy - the wonderful Registrar - in the Chemotherapy Department immediately after this.  Dr. Steven Kao also joined in this meeting.  He's a lung cancer specialist and also a wonderful Doctor - incredibly knowledgeable, personable and just makes you feel both well looked after AND cared for.

The results of the PET scan were one of the main points of discussion.  They gave us a printout of the results, and then they went through this line by line and translated all the medical-speak.  They answered all of our questions.  They took their time and did not rush us, even though they had a full waiting room of people to see.

The x-ray results of Alex's neck were also by now in the system, and so they had a look at those and again involved us in every part of the discussion.  They phoned 'M' in the Radiotherapy Department - she could also see the results on her computer and after discussing the results, it was decided they would fit Alex with a firm neck brace, as a precaution they said, and he would go for an immediate CT Scan and then go back to Radiotherapy to see 'M'.  Once back at Radiotherapy, they would fit Alex with a more comfortable softer neck brace.

So we went downstairs again and Alex had a CT Scan - there was no waiting.  We then went back across the road to see 'M' but since by now it was lunch time, they suggested we grabbed something to eat from either the hospital cafe or one of the other cafes, and came back in half an hour.

We didn't think we had enough time to walk up the road and enjoy a salad or something else from our favourite cafe up there, so he headed across the road to another place, just next to the hospital.  This was Alex's lunch.  Yep.  Amazing eh? 

If you are reading this blog and this looks familiar, then we do feel sorry for you.  If you have any guesses as to what this is, and the well known worldwide famous outlet where it was purchased, then please either add your comments below or phone (or tex) Alex and tell him what you think it was he ate.

After our less than gourmet lunch, we headed back to Radiotherapy.  By this time, it was decided that Alex needed to have another bout of Glowing Sessions, aimed specifically at the problem area in his neck.  So his first session was fitting a mask so they had guidelines for the following treatments - initially, he had the tattoo session but because they were aiming for the neck, a mask needed to be done.

After the Masking Session, he went in immediately for the first of his new Glowing Sessions.  He will have 5 sessions, one today and a rest over the weekend, and then one each day until & including Thursday.  After the Glowing Session, they were going to fit Alex with a different neck brace.  The CT scan results were ready on all the hospital's computers, and we found out that Alex had fractured his neck, at C1, by picking up the paper this morning.

This obviously is incredibly serious, so they wheeled him over to Emergency Department and admitted him while they contacted the Head Doctor of the Neurology Department and the Neurosurgical Registrar.

A physiotherapist came to fit Alex with his 'Miami J' neck brace - apparently the latest and greatest firm but not totally stiff neck brace. Navy and white, so it looks very professional indeed. And after spending a huge chunk of the day in the stiff one, Alex thought this new one was quite comfortable - thankfully!

We thought they would fit Alex with a new brace and we'd then be allowed to go home.  But after various consultations, they decided it would be best for Alex to admit him back into hospital until Thursday. 

This of course was an opportunity for Alex to experience a new ward!  So they wheeled his bed up to level 8.  8W2-10 became Alex's latest address within the hospital.  Once he was settled in the ward, I left.  It was a tad before midnight and we were both tired.

This is becoming a very familiar sight for me these days:

14 hours in the car park at least proved 'value for money' if there is ever a way to justify parking costs.

A very confronting issue to start the day & fun after that

We didn't have to worry about how we were going to replace our daily visits to the Glowing Sessions.

This week we have appointments every day, and this morning Donna arrived on our doorstep at 9am, bright and bubbly and with a wonderful Yorkshire accent. 

Donna is our main contact for the Community Palliative Care Service.  In many ways, this is probably the most confronting of all the services and areas we will be a part of.  Previously, discussing palliative care as a part of the care packages available to clients was quite OK.  To suddenly have it so close to home makes it completely different.

The most common perception of Palliative Care is that it's about dying.  Sure, this is a part of the care provided, but Palliative Care is "about living for as long as possible in the most satisfying way you can, within the limits of your illness."  This is a quote I have taken directly from the Cancer Council's booklet Understanding Palliative Care.

The care we receive from Donna and her team will help Alex to remain at home, independent and in control.  Team members will be able to assist us with medications, we have access to a 24/7 helpline for urgent queries, they will co-ordinate services from a range of professionals to suit us such as dieticians, physios and OTs.  We can have access to this team for years.

Donna will be our main contact, and we are very fortunate to have her.  She is one of those happy, bubbly, personable characters and I am very sure that she is going to be an enormous help in the future.  She's the type of person you often see chatting & laughing with friends in a coffee shop, or on girls day out trips, or you'd chat to in the supermarket queue.

We'll see her next week when she comes to introduce Barbara to us.  Barbara will probably be the main team member we see so it will be nice to meet her early, even if we won't be seeing her for a while.

Once Donna left, we headed to the office to pack some orders.  We then set off to start our deliveries, but on an impulse, we stopped before the first delivery because we saw a coffee shop that we hadn't tried properly before. 

I know I've spoken about the views from some of the cafes we've tried - beautiful parks, lovely huge trees and gardens all under an endless blue sunny sky. Well, this morning's view was a bit different -

Believe it or not, this does carry on with the theme of "one day ....".  For way too long now, Alex has been calling in to servos to pump yet more air into a rear tyre.  It was a relatively new tyre when a stray piece of metal had the audacity to wedge itself into the tyre, causing it to slowly deflate - ALWAYS.  So, after each stop to pump up the tyre, Alex was usually heard to mutter "one day, I'll see about getting a replacement".  And today was "the" one day.

Personally I'd much rather the huge trees, endless blue skies and sunshine, but I can imagine there is a large part of the population who would love to sit and dribble over an absolutely huge display of tyre rims.  If this sounds exciting, then Tempe Tyres would be your cafe of choice.  They do have some yummy cakes and very reasonably priced coffee if dribbling over the view wasn't going to be enough.

After this, the rest of the day was quite normal.  Finding available loading zone spaces, deliveries (sans trolley today) and then home. 

A quick visit to the local "doctor" so I could get yet more prescriptions, and then a visit to our chemist and home with more packets of tablets.

We're heading out tonight for a wonderful Vietnamese meal and it should be fantastic, so I'll sign off now, put some Lanolin Beauty Lip Balm on and we're walking down to the restaurant.

The last Glowing Session

There was no Glowing Sessions yesterday because the machines were shut down for calibration.  It did feel strange not to have to go to RPA.

This morning was Alex's last Glowing Session.  Every other session has been at Chinese Toothache time, and this morning's was at 9:45 - so RPA was our first port of call for the day.  We had been told that there would be a doctor's meeting after the last session, and given our history with the female doctor there, neither of us were really looking forward to it.  But we were looking forward to finding out any information that could be positive or useful.

So for the last time, we parked, registered, Alex changed into his 'Uniform Coat' and was zapped and x-rayed on the slab.  We said our thank you-s to the staff in that section who have all been absolutely wonderful and they all wished Alex well.

We braced ourselves, but it turns out that the female doctor did not schedule a meeting with us.  So we left.

Being a weekday, we did need to go to the office but we did have to have a coffee enroute.  We went to Petty Cash Cafe which is opposite the park & AKAC pool in Enmore.  A sunny day, seating outside overlooking the park - to celebrate (for today) the end of Alex's Glowings.  I am really sure the sun was out, but of course on reflection, it could have just been the radiance Alex was emitting ...

We went to the office, packed some orders, did some paperwork and then headed off to do the deliveries.  The highlight of our day turned out to be the show we saw while we were in Hurstville.  We had done our deliveries there, and Alex said that a particular bakery did the best ever pork rolls in the whole of Sydney.  With a recommendation like that we did have to buy one - it was honestly lunch time and Alex was thankfully actually hungry.  His appetite is still here and that's great.

So we sat on a seat on the opposite footpath to eat our rolls and whilst there, we were treated to "The Show".  Nearby there was a public car park.  Parking limited to 1 hour.  One lady in a small 4WD similar in size to a Rav 4, drove into the car park.   V e r y   s l o w l y.   She crawled past an empty single parking space, and on to a space immediately in front of her.  She tried to park in that bay, between other cars, but eventually gave up and so she did a lap of the car park and came back to try and park her car in a single empty bay.  At first it was fascinating to watch but it soon became excrutiating to watch and then utterly unbelievable.  I thought she must be under the impression the one hour limit was given to allow the car to be maneouvered into the parking bay.  Backwards and forwards she went, turning the steering wheel in the weirdest directions.  At one stage, she crawled forward to try - yet again - to reverse the car somewhere between the white lines.  Another driver was also trying to reverse into a bay to one side (between parked cars) and she took this opportunity to drive forward and we both thought "here comes a dingle" but they both managed to find their respective breaks in time.  Phew.

Eventually, just as we were about to finish our rolls, the first lady gave up and crawled around and out of the car park.  The second driver, having spent almost as long trying to reverse her car into the bay between the cars, gave up and decided she would try to drive into the single bay the first hapless driver had given up on.

I was beginning to think we would have enough time to go and buy the delicious looking peanut cookies from the bakery to munch while we watched her try to park.  Somehow, she managed to park her vehicle within the next 10 minutes - and get out of the vehicle, lock it and wander off to the shops.

We had to leave and continue with our deliveries but the show was well worth watching.

We finished our deliveries and headed home.  Michael, our previous wonderful neighbour, was in Sydney on a quick working trip so he called in to say hello and it was really good to catch up with him again.  Just a shame Robin couldn't come too.

Any helpful suggestions continue to be welcome!

We are very fortunate to have so many friends who would love to help Alex make the most of his time.

For example, just today Steve sent a tex to Alex suggesting "Sydney to London by forklift.  Steph drives and Alex is perched in an armchair on top" or words to that effect.

Now this so far is probably the best suggestion we've had.  Steve will no doubt offer a variety of routes - such as Sydney to Perth then sail to Cape Town then forklift to Morocco (a variety of routes for that bit) and then the ferry to Spain and through Europe.  We may cheat and take the chunnel across to the UK.

But we're hoping that this will not be the only helpful suggestion received.

So if you are reading this, and can add a comment, then we welcome suggestions, practical or otherwise.  Or send Alex a tex or an email and we'll consider them all!!!

:-) 

A REAL Glowing Man

As you all know, Alex has lost an incredible amount of weight.  He is doing his best to follow the strict hospital guidelines and our friends are assisting with various offerings.

 

But how to hold up a pair of jeans that are suddenly 3 sizes too big?  Alex did have an old very colourful pair of rainbow braces.  These used to make the occasional appearance.  With the constant use lately, they finally had to give up as they were originally designed more for decoration rather than any practical full time application.

 

Alex was 'forced' to go to his favourite 'Shop of Frivolous Spending' (this translates into a woodworking tool shop for the rest of us) and purchase a reliable set of braces.

 

Aren't these absolutely wonderful???

 

 

 

 

PS  It also helps if you still hold up the jeans at the sides .....

A week's worth of news

It's been a busy week - naturally!

On Wednesday last, we had our Glowing Session at RPA.  Of course.  After this we did have an appointment with the local "doctor".  We needed a new prescription as well as 3 referrals, and so we had to go and see her since she is listed as Alex's doctor.  The last time Alex had seen her was just over a month ago.  She was still prescribing Panadeine Forte like there was no other prescription known to medically trained people, but after Alex insisting, she had managed to say he could have an appointment with the Rheumatologist.  It was at this ECG that Alex was admitted to RPA. 

Soooo much has happened in just a month.

Anyway, we're at the "doctor's" and I wondered how much she had read of the copious hospital letters sent on to her.  So we wait until our turn, and head into the room.  She seated us, sat down and just looked totally shocked.  She said first off that she wasn't sure what to say and that she was so sorry.  I thought that it was good she had the decency to apologise.  Alex said that he'd lucked out twice - a comment that went over her head at the time.  Alex was more generous towards her than I felt.

So we managed to get the script and two of the referrals.  Then I said we needed a referral to the Cardiac Professor at RPA and we also needed his phone number.  I gave her his name.  She just looked absolutely stunned and wanted to know why we needed a cardiac referral when Alex had cancer?  I said that Alex has had a cough all year and this was caused by a heart condition; he needs open heart surgery and we need the phone number so we can call him to make a further  appointment.  Alex said this was why he lucked out twice.  The look on her face was absolutely priceless - 'shocked' wouldn't begin to cover it.

Once she recovered she wrote the referral and then said she didn't have his phone number anywhere but offered to 'google it' for us.  It was at this stage that Alex was hoping I wouldn't explode, given I'd had that very realistic dream a couple of weeks ago that I'd walked into the surgery and asked the receptionist to buy her a laptop and to teach her how to use Google.  If she'd done this months ago ....

She wrote a number on the envelope, we gathered everything and left.  The next morning Alex rang the phone number she'd googled for us and it turned out to be a fax number.  ???  I made a few calls and ended up speaking to the Professor's PA who was a lovely lady and we've got all that sorted now.

On the Thursday morning, we had a meeting out at Castle Hill.  Jenny works in Castle Hill, but that day she and Steve were home on Grandparents Duty so she said to come over after our meeting.

Alex and Steve caught up outside with Jake - I'm sure they could write a TV series about 2 men and a baby!

Jenny had baked a fresh batch of scones and this was the most delicious lunch you could ever want - after all, how often do you have freshly baked scones, jam & cream for lunch AND this was in keeping with Alex's food guidelines remember?

 

We all enjoyed the time there.  Jake lucked out on the scones but he had a two course lunch and their dog was very well behaved - no begging!  Thank you Jenny for cooking these especially for us.  We had to leave too quickly because we had to be back for our daily Glowing Session at RPA.

 

 

Barbara - Alex's sister from Adelaide - arrived in Sydney on Thursday night and so she came along with us to Friday's Glowing Session.  That evening at 6pm the Hages (& me!) descended on The Red Snail restaurant in Bourke Street for an incredibly enjoyable dining experience. 

 

Alex enjoyed a quiet day on Saturday and then on Sunday he rode my bike over to the Euro Fest at Frenchs Forest.  Sunday was a gloriously sunny day, and Alex had a great time immersing himself in Kroketten, herrings, chips & mayonnaise and even came home with a "bottle of biscuits" (Original Speculoos - crunchy).  The really surprising thing is that I am writing this on Tuesday afternoon and the jar isn't empty ...



In the 'PET Suite' - are we barking mad?

Today was a biggie.  We had an 8am appointment for a Whole Body PET-CT Scan in a different section of RPA this morning.  Alex was not allowed anything to eat from midnight last night - except water and of course his large diet of tablets.

So we set off early, parked the vehicle and found our way into, up, along and around a few turns to the Department of Molecular Imaging at RPA.  At their Reception desk, they undertook the by now familiar routines, gave Alex a clipboard with yet more paper, and pointed us to the waiting room.

We weren't there long at all.  Only just enough time to scan the information, fill out the consent forms and then the nurse came along to check Alex's current weight and height.  We then moved to a large 'Preparation Room'.  A room with a name like this had all sorts of connotations, but really it was a spartan room with a very pleasant outlook.

The notes we were given seemed to spend quite a few paragraphs on the fact that the rooms are all equipped with CCTV cameras.  Now we've watched and studied programs like The Bill, Scott and Bailey, Taggart and so on to 'know' that CCTVs are a fact of life.  It's just that we haven't always associated them with reducing staff radiation exposure and therefore allowing the staff to work more efficiently ...

Once Alex was settled, a nurse came in to attach a cannular to the back of Alex's hand.  Then a technologist came in with his trolley.  His job was to inject some FDG through the cannular. 

This is basically a radioactive sugary injection.  The body's cells use sugar as a source of energy.  The cancerous tumours by their very nature are hungry, and the more aggressive the tumour the hungrier they are.  So these hungry tumours will eat more of the liquid mix than the surrounding cells and because the liquid is radioactive, they will "light up" more.  This is my explanation, and I'm sure that our friends who are medically trained will correct me if I have this explanation a tad too relaxed.

For the next hour, Alex had to just relax.  This gave the FDG liquid enough time to circulate throughout his whole body.

Since any activity during this time may show up on the scan as increased muscle metabolism which could sometimes obscure important pieces of information on the final scan, we decided that he should just totally relax rather than read and get excited about the wonderful places to explore in Southern Africa.

Once the hour was up, we were then moved to the scanning room.

This is probably the most expensive donut you've ever seen.  It is one of two 128-Slice PET-CT Scanner machines, the best technology in the country. 

To demystify this, PET means Positron Emission Tomography and CT means Computed Tomography.  By combining these two scanners in this machine, you can get a functional scan (PET) which tells how things work, and an anotomical scan (CT) that shows structure and location of the naughty tumours.  So the PET-CT scan tells the doctors who are looking after Alex how the different parts of his body are functioning and they can overlay this on an outline of his body (provided by the machine as well) and they can then really accurately determine exactly where these functions are occuring.  And so they'll know exactly which areas to treat.  This is why they inject the FDG - this is essentially ordinary glucose with a radioactive tag and it acts as the tracer.  One other advantage of having his scan is that at various stages of Alex's treatments, the doctors will be able to determine if his tumours have responded to the different treatments such as the radiotherapy and leter the chemotherapy.

So Alex was strapped into the slab and made as comfortable as possible.  He had to lie very still for the duration of the scan - about 20 minutes.  After this, we went to another room where they removed the cannular and then we went back to the waiting room.  They came out very quickly with a CD, and then we could leave.

Most times when you go out to get a CD, it's a quicker trip into Virgin Records or similar.  You usually get to play the CD in your car on the way home, and then you burn it to your computer once home.

We took a detour on the way home to Cafe Ism, near Eveleigh markets.  We'd never stopped there before and had driven past on numerous occasions, always promising ourselves that "one day" we'd try it.  And today just happened to be THE "one day".

Today was another pefect Spring day, although a tad cooler than the past couple of days.  But the sun was out, the trees were magnificent and could you imagine a better office to be in than this one?



 

 After the past few hours at hospital, and then doing some work at "the office", it was time to tuck into some well earned brunch.

We seem to be in a lucky period as Alex's appetite is returning and the food tastes quite normal.  The amount of tablets he has to consume at two hourly intervals would fill most people up, so with all of those it's lucky that food still has its taste for now.

After brunch, we went to Alex's office to pack some orders and deal with some of the paperwork.  Then we headed home.  Alex loaded the CD into his laptop and we had a look.  The best way to describe it would be to think of "Elvis on a Rope".  Remember the fad of a few years ago when it was almost common to see people with Elvises jumping around dangling from their rear view mirrors?

Well, if you set the body scan to a fast forward, it was a bit like that.  We could see the body outline, and a lot of different shades of blobs.  For those of you who are reading "Fifty Shades of Grey", this would be the Department of Molecular Imaging's online 'chorus line' version.

We will have to wait until the end of next week to have the blobs and squiggles translated and for now, it's way too dangerous to try and guess or google.

So we had a quick break and then headed back to RPA for today's Glowing Session!  This is now becoming an established routine, and meeting the same people in the waiting room each day we're now all at the stage where there are plenty of nods, smiles and comments.

All up, a full on hospital day but with a few extra highlights. 

Photographic evidence

At the beginning of this week, a friendly delivery man knocked on the door one afternoon with a parcel. 

Thank you to Kerry, Dave & Mitchell for this gift:

It is a great mix of goodies, designed to assist Alex not to lose any more weight and for my hips to have that "artistic curve" that painters in years gone by seemed to cherish. 

And today, Alex bought a long cherished item:

So our lounge room now has a completely different look and feel.  Alex has the most amazingly comfortable chair and that's wonderful.  You can see Rusty is still on guard duty behind the chair.  He's a great Guard Dog.

A huge roller coaster ride

I've deliberately left this post to do this weekend.  I thought I would be doing it earlier than late on Sunday, but that's life.

We've had a roller coaster ride over the past few days.  The meeting with one of the doctors - she is a Registrar in the Radiology section - on Wednesday this week after the "Glowing session" was utterly devastating.  Not only because I have never met a doctor anywhere who had obviously skipped all the University lectures on basic social niceties, empathy, understanding, politeness and a few others I could mention but for the delivery and the content.  She knew the medical side of things.  We thought this meeting was going to be our opportunity to ask a few questions and to get a better understanding of exactly which cancer Alex has in the lung area and what to expect in the recovery process. 

After a rude and awful start on her part, it just got worse.  Her manner came across as utterly condescending and we felt like we were wasting her valuable time.  After mumbling the type of cancer that Alex has in the lung area, I asked her 2-3 times what the name of it was, and she could see I was trying to write it down but she never even offered to spell it for me.  After a few other 'crisp' answers to our questions she crisply and condescendingly said that Alex has 6-8 weeks left.  I'm talking here about life expectancy.  Alex just looked stunned, and to be honest, I went to pieces.  She then thought to close the door to the room we were in.  She passed me a paper towel out of the dispenser over the sink, and then quickly we were out of the room and on our way home.

Once we arrived home, we called Marlene & Rudy who dropped everything and drove over.  Wonderful friends.

We spent that night and the next day adjusting to the news and trying to work out how to cope.  On the Thursday we turned up again for another Glowing Session and I went to see if I could get a script we needed.  The nice girl/lady on the reception area got the idea that I didn't want to see the same Doctor again, and I ended up putting in a complaint.  The complaint was passed on to this doctor and she came out to see me.  We ended up in a "meeting", the result of which she seemed quite surprised that I wasn't "happy with the meeting yesterday".  I said that she could treat me like a piece of s**t if she wished, but that she wasn't to speak to Alex that way EVER again and I hoped that no other patient or their carers/families had the same experience.  She apologised to me and I ended up with the script we needed.

On the Friday morning, we were due to meet doctors at the Chemotherapy section of the hospital.  After the friendly girl at the reception area filled in the necessary paperwork she gave us a guided tour of the area.  We waited for a short time and then the doctor came out  - he said hello, introduced himself, invited us into his room, closed the door and then reintroduced himself and said just to call him Eddy.  WOW.  What a change!  He went through lots of questions, made copious notes to add to the history of Alex's file and even asked us if we had any questions!  He recorded the meeting for us and that obviously made me feel happier.  He gave Alex a quick examination as well.  Then he made sure we were comfortable and with spades of empathy, he said that there was some good news (considering the verdict we had been given). 

He said that Alex had 3 things in his favour.  He was considered young, fit and because he'd given up smoking 21 years previously, he was considered almost a non-smoker.  But with someone with Stage 4 cancer (the worst and final stage) the average life expectancy is 9 months.

We were thrilled.  After 36 hours of a nightmare, suddenly it seemed that this was wonderful news. 

Alex wanted me to say that in his own style, he'd of course skipped Stages 1, 2 and 3 and gone straight to Stage 4.

Of course, there are always stories of people who have been given short life expectancies a decade or longer ago.

Alex has an amazingly positive attitude which is wonderful.  We're on this journey together and to each of us it means different things, although we want the same outcome.  We will enjoy every day that we have and there are always good things happening every day.  We had and have lots of plans, and the only gift we need is time. 

So with this good news, suddenly for us the family lunch on Friday wasn't as bad as we'd thought.  Eva came with us to the Friday Glowing Session and Alex was told that "the" Doctor wanted to see him afterwards.  I thought that she just wanted to apologise for the Wednesday meeting, but it turned out that she just wanted to tell him that she was going to be on holidays for a week!!!  She was going to 'take the trouble' of introducing Alex to her replacement, but her replacement was away that day, so she couldn't.  And of course we were in and out of that meeting in a matter of minutes - I think it would take longer to swim a decent 400 medley than the meeting took.  Alex wished her a lovely holiday.

And then it was the weekend.  This meant that Alex had a recovery period from his Glowing Sessions.  Yesterday afternoon 3 of his mates came over briefly to have a game of cards.  Sean had ridden all the way from Guyra and it was wonderful that Alex had this time with some of his mates to look forward to.

Which brings me to today - Sunday.  It was a glorious day.  We made the most of it and after having a relaxing morning over a cooked breakfast and some time to read the papers, we set off to tick a few things off our list.  I will post some photos in the next blog.

Tonight we went down to the neighbours place for a roast dinner and a good yarn.  Alex's appetite is slowly returning and that's great to see.  We had a lovely time.

I'll finish up for now for this roller coaster episode.  Photos to follow and here's to a good week to follow!

There were no strobe light shows last night as a result of Alex's first glowing session.

We had some work to do this morning and ended up in the city with deliveries.  Whilst there, and because it was - honestly! - lunch time, we enjoyed a trolly dolly lunch. 

We then headed back to RPA, got there early and so headed up the road a little for a coffee / glass of water.  We sat outside - it was a gloriously sunny day, the type of Spring weather that we used to always have and on days like this, we're glad neither of us are cooped up in an office.

Today's glowing session went very quickly.  I was sitting with an older gentleman in the waiting area, and he was so keen to get into his session, the nursing staff had to pull him back at the last minute otherwise he and Alex would have been sharing that single slab!  It was quite funny really.  He was very chatty & lovely, and its amazing what people talk about whilst waiting for their treatments.

After the session we had a meeting with one of the doctors.  We have another appointment with another one on Friday morning, so after that I'll update this blog further.

Glow Boy

After a busy visitor day back in hospital on Sunday, Monday proved to be a quieter day.  I called in early but left after a couple of hours.  I had a Lanolin delivery in town to do.  Later, Zoe called in to visit and to make sure that Alex was behaving himself.

Alex spent the afternoon playing with his laptop and using the internet, apart from the regular nurses visits to check on his progress.  He had his last morphine injection at 2pm.  The idea was to get him re-established on his medications again.  Alex felt well enough to come home, and wanted to leave that afternoon.  The nurses wanted to keep him in overnight just to check that the pain levels weren't going to be a problem and that the medication levels were correct.

I was waiting at home to see who would win!  OK, I had lots to do so I wasn't just waiting for my nailpolish to dry!

Late afternoon I found out that Alex had won, and so I went to collect him and we arrived home in time for me to cook a late-ish dinner.  Once again, it was great to have him home and he was much happier.  However, in the early hours of this morning (Tuesday 4th) he did discover why it may have been a good idea to stay in hospital.

We spent a quiet morning at home today before heading off for the first of the radiotherapy sessions.  We headed off back to RPA and we were thankful that we didn't have to worry about parking.  One of the nice bits is that there is a parking section for those who are having radiotherapy, and they validate the parking tickets and provide us with a permit to cover the time we'll be visiting.  This saves a lot of time driving around trying to find a parking spot - it's a very busy area.  It probably wouldn't look good if we arrived on the bike, even if Alex was up to it!

As this was our first session, Atirak (one of the very friendly technicians/staff) spent some time letting us know what to expect and the procedure for each of the visits.  He said that for the first 3 visits, they will be taking x-rays as well as zapping Alex with the radiotherapy dose.  He is having a large dose, and the cumulative effect of this should - hopefully - kill off all the cancer cells.  Having the weekends off will give the body a chance to recover a bit. 

So Alex was given a hospital gown - this time, he keeps the gown and he will hand it in at the end of the last session.  I'm sure he won't forget!

 There is an advantage to the gown - um, hmmm, now what was it?  I'm sure there was one, but I'll have to let you all know in another posting.  Anyone who can spot the advantage then please let us know.  Alex is NOT off to the shops, the blue bag is to hold his t-shirt, jumper etc while he's being zapped.

Atirak and Lyndal made sure that he was positioned correctly on the bench/slap/bed, which took about 5 minutes.  The atmosphere was good.  Alex was happy to be there because finally this is the start of actually getting better.  Lyndal explained that during the process, he'd be alone in the room but they could hear and see him from where they'd be sitting outside, and if he felt uncomfortable then he was just to say so, and they'd stop the process.

 As Atirak had mentioned earlier, the hardest part of the whole process was just to stay still for the time it took.

Once Alex was positioned correctly, everyone left the room.  'Non participating chauffeurs' were asked to sit in the waiting area just across from where the staff were operating the machines and keeping an eye on Alex.

During the 10 minutes that the treatment took, there was silence at first but then a few other staff members arrived and everyone was comparing what they'd had for lunch.  Listening to what they'd all had made me quite hungry.   One of the girls was trying to get a booking at Grub & Tucker, apparently a popular restaurant and by the time they'd all discussed this, I was beginning to think we should try it later as well.

Alex needed some R&R time after it finished, just to adjust to moving again.  Lying absolutely still even for that time meant it was quite painful to move around again.

After we left we headed to his office.  Alex won his fight with the computer and was then able to catch up on a bit of paperwork.  I packed some orders and then we headed off to Hurstville for a delivery.

We arrived home just after 5pm.  Alex was tired but had no side effects from his first treatment.  We had a small dinner.  His appetite is obviously seriously reduced and his taste buds are off on an overseas holiday somewhere, because everything now has a different taste.  We're both hoping that they will come back eventually, along with his appetite.

I'm waiting to see if he glows in the dark tonight .......

A busy day

Finally I'm up to date.

Today was a good day.  Mind you, after such a traumatic day yesterday with everything that went on, it was a relief.

Alex managed to get some sleep between visits from the vigilant nursing team.  He did eat some breakfast so it was a good start to the day.

By the time we arrived this morning, Mark was already there.  My usual routine has become to call Alex as I'm arriving at the hospital to ask if he'd like a coffee from the downstairs cafe.  This time, he answered the call with "one for me and a Short Black for Mark please", which was quite funny.

I was with Tracey and Mike, and we'd been to the Telstra shop in Newtown where Mike made sure I purchased the best dongle so Alex could have his laptop and internet access while he was cooped up in bed.  Tracey also had her home made honey sponge filled with cream packed into hospital friendly containers.  I called to cancel their visit yesterday, and the timing was perfect because they were just about to leave home.  Alex was lucky that their taste testing only involved half of the cake!

So Alex was following the dietary leaflet with his morning tea of coffee and cake.  The cake disappeared in record time.  Mike set to work installing the dongle and configuring his laptop.  Mr. and Mrs. Hage arrived with a flask of Mrs. Hage's delicious home made chicken soup and I think that the nurses thought there must have been a party in progress.

Alex did manage to doze after everyone left.  It's both enjoyable and exhausting.

Lunch was another piece of Tracey's cake.  Afternoon tea was coffee and yep, another piece of Tracey's cake.  Dinner was Baked Bacon Macaroni and the hospital sandwich has been preserved for breakfast tomorrow.  Of course a bottle of water and the Dutch supplement drink was also added to the day's intake.  So all up, it was a good day.

Not a good way to celebrate Spring

On Thursday and Friday, Alex had been feeling very well.  One big adjustment now was the huge amount of tablets he needed to take in order to keep the pain at a manageable level.  We ended up with a very colourful spreadsheet that enabled us to make sure we remembered where we were up to and could keep track easily of any time changes made.

After such a long time in hospital and mostly away from his business, there was plenty of catching up to do.  Any heavy work was now completely out of the question and it's great that I can help where needed.  So I had a quick crash course.  Every job has it's own shorthand.  For over 20 years, RTW for me was Round the World and then it changed to Return to Work.  In that same job, I became what I laughingly dubbed a TLA Specialist (to the Eagles, this is a Three Letter Acronym).  Suddenly, I am now in a world where Pink is not shortened to P.  For now, E is Pink; P is Green; N is Lilac and D is Yellow.  Hmmmm ... 

Yesterday morning though, Alex woke at 2:30am with excrutiating pain in a new area in his back.  Hours perched on the lounge did nothing to ease it, nor did the tablets.  As the day progressed, we kept hoping that the tablets would kick in and the pain would dissipate.  It was quite serious because he couldn't walk upright, and it was incredibly painful to move at all.  It took ages to get him out of bed and to the lounge in the first instance and virtually impossible to move from there.

Alex of course was hoping that he would not have to go back to hospital.  But after another serious attack, I called an ambulance.  The 2 guys arrived and took a while to stabilise him at home.  After a while, he was able to be transferred to the ambulance and I had my first trip in the front of an ambulance. 

We did have a bit of a laugh that this time it was Alex arriving at RPA Emergency in an ambulance, so now we're even!

A few hours in Emergency, another X-ray and lots of morphine.  The general prognosis was that the cancer has grown/moved and has hit a nerve.  This scarily makes sense.

Late last night he was readmitted and thankfully he now is in a private room, with regular morphine to keep the pain at a bearable level.

When it's a great idea to stick to the rules!

I mentioned earlier that Alex has lost an amazing 25kg.  He looks fantastic.  Of course, in an ideal world, the weight loss would have been over a much longer period and would have been a real celebration.

For now though, one of the focal points is NOT to lose any more weight because he will need all the strength he can muster to get through the next few months of treatments.  So the dietician at the hospital gave him a sheet titled "Nourishing Snack Ideas" to take note of and to try to follow.

So, how often are you told to eat things like "Scones with jam and cream; Buttered pikelets, muffins, raisin toast, crumpets, fruit buns; Chocolate bar; hot chips and Cake, muesli bars, biscuits, croissants, pastry" ???  And the list went on ...

I turned the same shade of green as the paper the list was printed on.  Envious wasn't quite the word!

New of this list soon spread and on Friday afternoon Zoe visited Alex bearing a Butterscotch Nut Tart.  Mark was here at the time, and really couldn't believe his luck either.  Of course, we all had to join Alex with a piece of this "prescribed tart".  It would have been rude not to.

On Saturday, Tracey checked out her stash of recipes and was due to provide Alex with an afternoon tea delight that would be in line with hospital guidelines.

Events overtook us though.

Alex gets a tattoo

It was great to have Alex home, and he didn't seem to mind a night in a bed that didn't go up and down with the press of a button.  He managed a good night's sleep - fantastic.

Thursday 30th August was his tattoo day.  I've been fascinated by tattoos for a while now, but today Alex was going to get his own tattoo.  At Chinese Toothache time we reported to the Radiotherapy section of RPA for his initial appointment.

We've never had to know much about Radiotherapy before, but I'm sure all that is about to change.  This is one of the main types of treatment for cancer as it uses radiation to kill cancer cells or injure them so they can't multiply.  In Alex's case, it can be used to treat the lung cancer and also the many tumours on the spine.

The process seems to be that he will lie down on a machine called a linear accelerator - this has a flat 'bed' and a huge overhead 'arm'.  Bear with me - I'm trying to explain what is no doubt a highly specialised and incredibly expensive piece of machinery.  In this initial appointment, the very friendly nursing and specialised staff were wonderful and did a great job of taking the apprehension out of the experience.  They had his CT scans already programmed in to a bank of computers and what seemed to be a whole bench of medical equipment.  They used markers on the bed to position him, and then cross referenced the CT scans showing all the tumours with the laser beams in the top of the linear accelerator.  He had to lie perfectly still for what seemed ages but probably was only about 5 lifetimes.  Ooops.  Five minutes.

Then they all seemed to agree on two particular specific points on his chest and these were tattooed.  Watching this gave me a whole new appreciation for how long it must take to produce some of the amazing tattoos I've seen, and if they are done the same way, then how painful it would be (even for those people who are no stranger to needles).

The tattoos will be vital in the upcoming treatments.  Once he is placed on the bed in the same position, they can use the tattoos to make sure the radiation is directed at the same place each time.  In this initial planning session, they also worked out the doses of radiation to ensure that enough radiation reaches the cancer but does as little damage as possible to the surrounding tissues.

His first day of treatment is to be Tuesday 4th September and he will have 10 sessions, one each week day.  Having the weekends "off" allow the normal cells to recover. The plan at the moment is that Chemotherapy will follow. 

The good news is that radiotherapy doesn't hurt, and it doesn't feel hot or cold.  Staying still for the time the machine is zapping you is probably the most difficult part of the whole process.  It doesn't make you radioactive, so we will have to have a running competition on nicknames for Alex during this process.  Simon - you may have to adjust "glow boy" for a while!  With only 10 sessions planned at the moment, the doses must be quite high, and so the side effects hopefully won't be too bad.

August 2012

Way back in January this year, Alex developed a cough that just wouldn't go away.  Two different doctors were perplexed and our new local doctor was kept busy doing the initial tests.  'It' wasn't a lot of things, but we never seemed to get the answer to what 'it' really was.  Endless scripts were provided but the cough was persistent.

At the end of May, Alex flew to Amsterdam and I met him there.  I'd been in Africa for the previous month.  He still wasn't well but he didn't want to miss his family reunion just outside Amsterdam.  We had also intended on spending a few weeks in France.  We thought we'd hire a car in Amsterdam and head to Brittany and stay a couple of nights with really very good friends and then keep touring, ending up with some time in Paris and then back to Amsterdam.  But the cough was stubborn and the new pains we thought were associated with it had the effect of changing our plans.  We got as far as our friends' home in Brittany and just stayed there.  The silver lining of this was that we had a great time with them and obviously saw them for longer than we'd initially thought. 
 
We had two days in Hong Kong for business and arrived back in Sydney at the end of June.  Visits to the local doctor continued for the next 7 weeks and finally she sent him to a specialist for an ECG.  So on Friday morning 17th August he rode off for the ECG.  At the end of this, the specialist had Alex admitted to the Coronary section of RPA.  He does need open heart surgery due to an aortic heart murmur.  This apparently is quite rare in patients so young, and so the student doctors all came to "have a listen" over the next week.  His heart is very enlarged, there's some fluid and the valve doesn't really work properly.

Rather than have the surgery immediately, the doctors were trying to find out why he had such severe back pain.  His 25kg weight loss would also have raised alarm bells.  They found the cancer in the spine first and then more tests located the primary cancer in the lung.  Metastatic adenocarcinoma of unknown origin, soft tissue mass with bony metastases - in medical speak.

This new diagnosis took precendence over the heart surgery, so Alex was moved to the Oncology ward.  He had, thankfully, a private room in the Cardiac section, but once in the Oncology, had to share a room with 4 men and so it was quite a shock in many ways. 

The support given by visits from family and friends, phone calls and tex messages was very much appreciated and certainly it is at times like this when you realise just how fortunate you are to have such good friends. 

After 13 days in hospital, we were both thankful that Alex came home.