March 29 SUNday

Another crazy night; not falling really asleep until 4.00 a.m. and wide awake at 6.30 a.m. reading emails that said nice things about him, out loud to me, until I finally woke up as well and consequently after Joseph finished his shower, something that normally occupies most of the day, it was still early morning and we were ready to go -  to the beach - because right now, that’s what Joseph wanted more than anything.

So we drove in our lovely Mercedes with the sunroof open and sat in that same old brown chair with the pillow, looking out at the water in yummy weather.

There’s the beautiful Merc in the background!

Me thinks that chair needs to be cleaned if it is to be in more photos!

Back home in bed he was back to those very deep sleeps for most of the afternoon.  Now here we are at bedtime and he’s waking up

March 26-28

 By Wednesday we had confirmation that all of our visitors had made it back home, so joseph could rest easy ... 

We had our weekly visit from the lovely Kirsty the PC nurse and it seemed as though joseph had a UTI and in no time at all we had the specimen bottle dropped off, the specimen submitted and the script ready at the pharmacy  - hello Morag! It’s me again 👋🏻 and we were back  home with another pill to add to the stash!.  

After a pretty horrible night came some deep sleeps that came on suddenly, even when holding coffee! and I became concerned and called Palliative Care.  I guess I must have sounded a tad deranged because they not only arranged for the lovely Kirsty to come back again but also a nurse to come and stay the night!!  The more I tried to explain I didn’t need one the more i think they thought I did!

Kirsty arrived to check on us and also with the news that, in fact it wasn’t a UTI. What should have been good news, was of course not, as we realized that the cancer was causing the problems. So we laughed and cried a bit with Kirsty, god love her, and then later at 10.00 p.m. Frances arrived to spend the night!

 I kissed joseph goodnight and trundled off to the room at the opposite end of the house (was the office, now Julie’s room) to sleep in the bed we setup for Julie. It’s a small room for sure but with the biggest window and views that you can see from your bed!  I slept 6 hrs!  Down the other end, Joseph slept 3 according to Frances, and then they spent a few hours in the early morning chatting.  Poor Frances, she now knows everything about us and they even figured out that her father is Pablo’s boss (he provides the funding for the project).  Still in all that she left at 6.00 a.m. declaring joseph to be the best patient she has ever had!!  

So on Saturday we made it down to the playing field across the road to sit in that same brown chair with the pillow and talk to Jasper and Billie who kept their distance except to give Grandpa their painting and a special hug when they left. Lots of hand sanitizing and hand washes on return, in the hopes we didn’t spread anything other than our love.

Jasper and billie had an art lesson from an artist-friend of their Gran’s and we could love their pieces they drew just for Grandpa

I drove the car around to the playing fields so Jospeh could also sit in it for a while and pretend to drive! Mostly he counted the buttons ... he counted 60 buttons to control just about everything your heart desired except the one thing he desired most was to drive it ... but he didn’t.

March 25

I should tell you that the pickup of the white Mercedes GLA180 never did happen on Tuesday afternoon.

There was a mixup with the dates they said - it wouldn’t be ready until tomorrow, it needed a final detailing they said.  So Mischa and I drove to the showroom in the hopes we could find a way to make it happen, but finally we decided it wasn’t the end of the world (that was what was happening outside) so I mentioned the Mercedes clock I had spotted while Julie and I were having our free coffee (seems Jospeh can never see a clock from his bed) and we took that home instead.

He liked the clock so Mischa hung it and now he can almost always tell the time
Unless the glare is too bad or the shadows too dark!
This clock makes no sound!

So today (Wednesday) Joseph came with me for the pickup. We took a beach chair that reclines and is padded (we bought it to use for star gazing) and we took a cushion as well and set it up at the salesman’s desk and it meant joseph could be there while I signed the papers for his gift to me.

Whoops we should be behind the tape-line for proper distancing!

They had the red bow, some lovely flowers and the gift bag and because of the virus nobody was allowed to get in to explain everything, so we said thank you and left with our white GLA180 Mercedes Benz ... and we drove for an hour or so out along the new freeway - on what would have been the route joseph would take on his way to the bird sanctuary - the road that was to save him ½ hr+ each way - and it was the first time he had been for a drive outside of hospital and clinic visits, since Christmas and it was so smooth and lovely floating along in our little bubble.

We dressed up ... why not!

We appreciate that it is grossly indulgent for us to be doing this while the world falls apart around us - and we wish more than anything that none of it was happening.

March 23 & 24

Last two radiotherapy treatments go well, not without pain, but at least without 🤮!  Crosses on the floor keep those waiting and seated apart and people in the elevators keep their distance. We are so grateful to have these treatments given what is happening outside of our little bubble.

Our visitors are all gone; Tom leaving was especially sad for joseph, but we were so glad he came.  The three of us ate pizza together, as a last supper; joseph in his hospital bed, Tom perched on the world’s most uncomfortable chair and me on top of my bed!

Joseph wanted to buy me a nice, new, safe car. Julie has a Mercedes and she loves it and did her research etc. so he decided to ask her opinion/help etc.  So while she was here, he asked me to take her to the Mercedes show room and pickup two brochures on GLA180.  So we went on Saturday -morning - 10.30 a.m. - first/last chance we had to do it.  We went to get toilet paper at Aldi but there was none of course - so we hopped into IKEA to do a return and grab a coffee but that part of the restaurant was closed (assume the whole restaurant is closed now) - anyway - we were a bit chuffed at not having our coffee - but we stopped at the Mercedes showroom and Julie was showing me the car and the salesman came over to talk to us “ladies” and luckily Julie knew what she was talking about and had good questions. Of course there was “a deal” and of course “the deal” was ending soon and of course if we took one of the three left in stock, it would be an even better deal ... so we spotted the coffee machine and asked if we could have one while we thought about it all.   So yep - we had our (free) coffee and then they offered that we could take a black one (i wanted white) out for a test drive and they said we could take it to Joseph (we live about 15 min drive away). So as we were getting into the black one - the white one appeared and another salesman was about to give the keys to his clients.  So we yelled out “NO we THINK WE want that one” , so they said - OK they would hold it until we came back from the test drive but then we would have to make up our mind!!  So Julie drove it to show Joseph & Mischa & Tom who proceeded to open everything and prod everything much to Julie’s dismay - but joseph liked it and she drove him around the block (the seat is padded enough that he could last that long) and he was SO happy!!  So back we hurtled to the showroom to tell them that we DID want the white one!  And so we asked for another coffee as we signed the papers and made it home at 4.00 pm. Next day all four of us drove to the exchange shop to SELL our gold wafers that joseph has had for 15 years!!  And we came home with $40,000AUS in cash! Joseph managed to last the ridiculous time it took for them to process the gold/count notes but he was SO happy.  They only reason they had that much cash is because EVERYBODY is buying gold right now (no doubt they very happy to get ours).  So Sunday afternoon Jospeh did his favourite thing in the whole world - he counted the $40,000 and loved every minute of it. THEN Monday morning Julie and I hauled the bag full of $$s down to the Merc show room to pay for the car!  They were a bit taken aback - getting ready to close the site (except for repair dept.) and said most places wouldn’t take cash (virus) and I didn’t think of that! - but I had called ahead and they said yes - so they had to take it!!  So we had ANOTHER free coffee while she counted it all and now I have to pick it up today (Tuesday) because they are closing down - so like PHEW!!  We just made it by a whisker!  It’s rather ostentatious and I feel a tad embarrassed, but he wants to do it for me so of course I have to go along (Mischa thinks that a bit rich!!)  but oh well ... the things you do for love

It is illegal to take a photo but I took the photo before I saw the sign ...
In between you can see the apparatus (the square thing) they use to weigh the gold ad the water they drop it into to check the density.

Joseph and his pile!

So not only was it a good promotion,
and not only did we get a good price because we took one of the last in stock,
but with the (excellent) price of gold that we bought in $CAN and sold in $AUS,
and the exchange rate on $CAN being quite a bit higher than the $AUS
 And Jupiter was aligned with Mars,
and Venus was certainly in the seventh heaven
Means this was one very sweet deal ...
And a crazy story!!

March 21 & 22 ... such a good weekend...

No vomits, reduced pain, awake for long stretches, good sleeps at night, rides in car, scotch, wall-to-wall visitors; in-person/on-line, bought a car, sold some gold and my nursing skills stabilise to the point where one must wonder about his improvement!               

Such wonderful helpful visitors:

Tom is with us until Tuesday when he attempts to return to Canada.

Julie is with us until Monday when she attempts to return to Canberra.

Australia has closed both external and internal borders ... such is life in the time of Coronavirus!

Many thanks for all of your wishes, and hugs, and love and continued support.

March 20

Apologies for my very-wordy, rushed and unedited post yesterday. It was such a crazy day and I wanted everybody to know where we were at.

Today we had a home visit from the PC team nurse and my goodness such a lovely, beautiful, gentle, adorable young lady she was. She made us both feel good.

The goodness continued through the radiotherapy trip to RAH and treatment (yes those two loud blonde whatever-they-are’s were there ignoring us), and after a nap, time to sit with Tom and Julie and me and eat two IKEA meatballs in a dab of IKEA sauce with a slither of IKEA broccoli medallion and 1/4 non-IKEA baby potato and now minutes into midnight still with not a single 🤮.   

He is so ready to enjoy this weekend.

March 17, 18, 19 & 20

Well what a difference a day (or two) - and a virus makes...

Monday (16th) Angus from RADONC tells us March 30th is the earliest he can pencil us in for our 5 (obviously out-patient) radiotherapy treatments!!!  Since we had been waiting since March 10th, and that it takes 7-10 days to feel any effects, we were pretty disappointed with this news.   So, in our nicest, slightly-pleading voice, we asked Angus, that given we were already here, in hospital on the 6th floor, and could be at radiotherapy on the 2nd floor in a heart beat, maybe they could just slot us in whenever they could? We weren’t going anywhere, we didn’t have anything else to do!

So Angus went away and after waiting two days and hearing nothing we decided to not push anymore. We know it’s crazy out there (and creeping into the hospital) - so we made our decision and I wrote my (previous) post.  Minutes?Seconds?An hour? ... well not long after at 10.30 p.m. during meds, the nurse mentioned that we have a 7.00 a.m. radiotherapy appointment in the morning. Goodness me!!

Plans for home changed; we stay in, do a short day-visit home Thursday, then go home after the 3rd treatment and return Mon & Tues as an outpatient (total of 5 treatments) ...  OK - we can do that!!

The good thing about a 7.00 a.m. radiotherapy appointment is that it really frees up your day!  We had a good day with Tom helping and Julie arriving ... and then it was Thursday (19th) - the day we planned a trial run home

JJ the Palliative Care doctor arrived with a story - it wasn’t his story and he didn’t think it was a great story but here it is: this hospital was becoming the centre for Coronovirus treatment and they “suggested” instead of going home and coming back that we just go home ...now ...instead of Friday!  Gulp! Gulp!!  Joseph was keen ... me not so much.

I packed, the physio came in, the OT came in, a nurse came in, the cleaner came in, the coffee lady came in ... and then the pharmacist came in. It took her a long time to go over the list of meds and thank goodness Tom was there  - of course the meds wouldn’t be ready I had to come back after 5), but off we went with some free syringes, a roll of toilet paper and lots of unopened chocolate milk labelled with Joseph’s name and a double-sided page of pill names, descriptions, quantities and I was responsible.

We made it home - no 🤮 and back into his lovely (hospital) bed and kiddies come to visit and once I wrestle the Liquid Panadol from the pharmacist (she’s trying to sell me cheaper - I want what he’s used to) and I race back to RAH and pickup the bag full of drugs and have a(nother) slight meltdown when I-can’t find my parking ticket, but the (lovely) little man at the gate lets me through and finally we settle down for the night with me dispensing.

... and here we are ... we made it through the the night and are off for radiotherapy.  

Right now we feel good - we are supported by so many wonderful people.