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.

March 17

Joseph now has his pain pretty well under control and 🤮  almost nil. He is now taking pain meds, anti nausea and steroids via pills and liquids (no intravenous). He eats scrambled eggs, soups and drinks chocolate milk ... and he is amazed to be feeling this well even without the radiotherapy (on his brain lesion).

So given the uncertainty with Coronavirus and potential restrictions within the hospital (visitors, staffing pressures etc.) we feel perhaps home is the place to be. We will deal with radiotherapy later - it seems the steroids are having a similar effect in helping with the vomiting (that was almost the undoing of him).

He is able to take small walks with his walker and big rides in the blue chair (just a🤮 stifle!) The brunch (thanks Ken & Eileen) with kiddies was the best medicine.

We’ve been here for two weeks - we’ve gone from 2-8 on the wellness scale or 8-2 on the pain scale. We’ve had such good care but are ready to leave and with assistance from the Palliative Care team we can. We don’t have a blue chair at home but we do have extra bits to help and I think they will send a nurse to check in on him and up on me. Tomorrow would be good but by Friday at least.

On this roller coaster ride, we feel we are stuck at the top while something is happening below but we can’t see down. We didn’t exaggerate - he was very sick - the doctors said he was - but for now we’re happy for the ride to the top and we’ll enjoy the view - for a week, a month - who knows.

He asked me again to tell you that Joseph loves reading your wonderful notes and beautiful words.

Brunch

March 14

This morning the wonderful Simone found Joseph a Princess Chair - hiding in the 6E (cancer ward) Wing 2 closet  - so we borrowed it. (She knows about them because of course she’s a physio at the hospital).

It fit him perfectly ,so we topped him up with painkillers and Tom wheeled him down to the ground floor and outside into the sunshine and shade and he stayed there for most of the afternoon.  There were kiddies and parents and visitors and even sushi and by the time he plopped back into bed he was floating on cloud nine!  It was the first time he has been outside in the sun since Jan 26th!

There are a few empty beds on our floor 6E - Coronavirus preparations we suspect-  and the staff seem not-so-frazzled, so I left joseph still floating on his cloud and in their capable hands and have come home for a top-up sleep!

We’re gonna enjoy the chair ...while we can!  So in the morning it’s a family ++ brunch outside in one of the lovely gardens in/around the hospital.  We don’t know how long this high will last but we’ll make the most of it while we work towards coming home.

... Unless the Coronavirus gets in the way ... and sadly it seems to be getting in the way of a lot of things in these crazy times.  

March 14

We are still in hospital! 

They have been true to their word and not forcing us out.  Letting us trial pills instead of intravenous, then walks and a home-visit.  Still, I think their generosity must surely run out sometime next week, so we hope to be ready.

The roller coaster continues with a bit of a dip with pain and vomits returning yesterday, so we are monitoring and ready to beg for intravenous if need be.   He walked the halls yesterday and was so happy (as were staff as he walked by!) but then a bit of reality 🤮 and some sad bits before finally a good night.

Today the weather is spectacular and we plan to get out there - somehow!!

Enjoying our visit from Sharon and Tom... both staying at different locations with absolutely no effort from me, so I’ve been able to stay in the hospital.  Erin and Cassia & babies filled our large room yesterday - we’re gonna need (a) bigger room - and Jospeh is anxious to see the walking ones today.

Another thank you for your notes filled with kind words.  He likes me to read them to him ... over ... and over again

Mar 11

Good days ... 

Today the oncology dr. was pleased with pain/vomit and said they are happy to hand over to palliative care team and ... most importantly ...  told us they weren’t rushing us out.  Hallelujah!

Radiotherapy treatment is not until next week ... but the Palliative Care team are trying to negotiate that we stay and have the five treatments from hospital.  Might be asking a bit much - but hey! Why not.

Meanwhile PC will get meds, logistics etc.sorted out and we will go home either Friday or next week.  So we are very relieved by all of this and he’s feeling the best he’s felt in a long time  AND he walked down the hall AND he ate some lunch (too much 😳??) and ... and !!!

Just trying to remember that it’s a roller coaster we are on - but right we are flying high

Mar 9

It’s taken a couple of days to figure it all out -but Joseph is now having some good days ... pain is pretty much under control and vomiting is reduced (nil today). Mischa cut his hair (short! - but no photo allowed 😞) and that helps him feel a lot better.  ... So who knows what tomorrow brings ... maybe radiotherapy (for pain) or maybe home sooner that thought?  Meanwhile he is enjoying visitors and calls (Face & Phone) from Canada. 

... and all the while your messages come in (I had to turn the sound off lest the nurses thought the “dinging” was Joseph and disconnected him). I read them to him and of course it makes him cry, makes us both cry.  How wonderful of you all to send your messages of love and hugs, kisses and memories ... he’s overwhelmed to think he touched lives!!  He’s a nerd, a birdwatcher, a geologist, a (hobby) astronomer, an environmentalist, a reader and a retailer... and somewhere in there people found inspiration and he wants me to tell you how honoured he is by that.

Mar 4-7

Mar 4

Chris the (female) Palliative Care Doctor came the next day (Mar 4) at noon and everything changed . By 3.00 p.m. we were admitted to hospital (Mischa helped me drive him) and at 6.00 he had a brain scan as per PC Dr’s orders (in consult with Nimit) and I slept the night.

Mar 5

First thing in the morning the Oncology consultant (& 100 medical students) arrived and delivered the bad news that the cancer had spread to the brain... at the base and it wasn’t good. He was very sorry and then they left.

Good gracious -  I had a feeling the trial wasn’t working but this totally blindsided me.   Joseph was still holding out that the trial would still work, so this was very difficult news.

Luckily for both of us, Mischa and cassia were able to come over and spend the day with us as we muddled through a lot of doctors and their departments and this and that and finally we are now under the care of the Palliative Care Dept. and we just can’t say enough about them as a whole and in particular the two doctors we’ve dealt with.  Such compassion and knowing how to say what needs to be said etc. is awe inspiring

Mar 7

Joseph is now on a pump to administer most of the drugs and it seems the cocktail is working.  Also, as of writing (sat p.m.) there has been minimal vomiting today.

So in the middle of the horrible, comes a good day and after much anguish and soul-search and discussion we have decided to not have any further treatment (no trial, no back-up-plan chemo) just some palliative radiotherapy to his ribs and brain (help the pain and vomiting). Every doctor agrees that it is a very aggressive cancer and our timeline is looking more like weeks than months.

Jospeh’s family, in the middle of the debarcle that is the Coronovirus, are working hard to come out and see their baby brother.  Tom gave up trying to arrive earlier, so he arrives Thursday, Marie early next week, we hope, and poor Patsy is laid up with severe back pain.  It’s nigh-on impossible to get though to the airline by phone and on-line booking is either shut down or impossible ... Tom said the planes are empty - it’s just hard to get on them!

I must tell you that Joseph is being such a trooper; never complaining, just the teeny tiniest “why me”, mostly incredulous at the speed (3 months ago he was walking 14kms a day mapping mallee fowl) and now reflecting on our wonderful life... such is the tiny silver lining of this horrible news.

Our private hospital room is wonderful when the kiddies come to visit and we’ve even adorned the walls with their artwork!  

We shudder at the thought, that before this beautiful hospital, we would be one of six in a ward, with shared bathroom, and the noise and interruptions, and goodness knows what else ... and here I get annoyed if a distant door slams!  And today Mischa arrived with Canada Dry ... instead of the Schweppes Ginger Ale (which was wonderful) - but now, with tons of ice -it is perfect.

Nurse Billie ... we’ve bought in the big guns!!

We don’t know how long we will be in hospital but the plan is to return home - to our lovely apartment with views to the hills and over the city and down towards the beach.

 On the seventh floor there, we are almost in heaven!

March 3 ... already

It was a weekend mostly in bed and quite a few 🤮 and the realization that we have to do something about it because not only is it extremely painful for him but the tiny bits of food he eats aren’t even staying down.

So Mar 2 is the last trial treatment and a visit with the doctor. Joseph needs a recliner - and I speak to the doctor (Nimit). We agree to a scan TODAY and an increase in pain meds (100mcg Fentanyl patch!!!). With the scan results we will know; if the trial is working, if we can we punch a hole in his kidney, if we go to chemo? Etc. Etc. This is the scan that would normally take place in three weeks time - at the end of the 9week-trial - but we can’t wait that long.

The scan is after treatment and just one floor down, but without a recliner for him he ends up in a bed and ... yep! ... 🤮!!  (Luckily we aren’t in the waiting room!)  Thankfully the attendant takes the bag - but she was genuinely concerned and mortified.  For us - it’s status quo - it’s what he does now ... for no particular reason ... daily .

Today Mar 3 is a visit from the Palliative Care Consultant called Cate ... and Cate is now up there with our “Angel Dee” because Cate stayed for two hours and asked Joseph (& me) questions and Cate also told us all of the things we can have!!  

We can have an over-the-toilet chair (no need to buy it at Aldi on Wed!) ... we can have the bed we are currently paying $96 (a month? A day? A week? I can’t remember) - anyway it will be free!  We can have a pharmacist come to the house to talk about the drugs, we can have a palliative-care doctor come to the house to ...help! ... with everything.  We can have a nurse ... and someone to clean!  (Well only clean every two weeks but that’s right up there with my schedule anyway.)  Cleaning has been difficult because sometimes the noise can be too much for Jospeh! (I know dusting doesn’t make any noise but I don’t do it just in case!)

So I feel as though the weight of a small village has been lifted from my shoulders! ... and now we wait for the results of the scan.

I should mention two of the hardest things about this journey I’m on with Joseph Vomiting & Math.

Vomiting - I’ve never been good with.  I went 30 years without vomiting and would lie still for a week to avoid it.  Our children didn’t do it - well not often ... and up until now, neither did we.  So it’s been tricky learning to “deal” with it ... especially when driving! I think they should teach it in defensive driving school, because it surely took everything i had to a. not join him, b. keep control of the car c. keep driving!

Math - I’ve never been good at math!  - It’s not just adding and subtracting  - it’s numbers! A little blind comes down over my eyes whenever a number is mentioned! That’s why Joseph has tried hard to stay on top of his medication.

So last night, after the doctor wrote out the prescription for 100mcg of Fentanyl, and before i could pick it up from the pharmacy, and after the trauma of the day and 🤮, I suggested to Jospeh that we add the two left-over Fentanyl 12mcg patches, to the 75mcg he has on (i can do that math - it’s almost 100!)! ... a that’s what we did and he had the best night ever! 

Of course the first thing that Cate did today was check Joseph’s meds and commented that he was on 175mcg of Fentanyl. I explained to her that NO - it’s 2 x 12 = 24 and 1 x 75 = a total of 99”! ... SHE explained to me that NO -  it’s 2 x 50 = 100 and 1 x 75 = a total of 175mcg!  Oh dear me!!!. The patches were 50s not 12s!! There are so many boxes of so many pills, of so many different strengths and so many different names and colours on the bathroom counter!! 

  Joseph told Cate I have trouble with numbers ... and we did laugh ... in the end ... but the (really) sad part of this, is that it turns out the 175mcg wasn’t even too much for him