Saturday 29 February 2020

Feb 28 5/5 Radiotherapy .. & Feb 29

Friday it’s the end of the week...and our last Radiotherapy treatment!
The lovely lady at check-in remembered us! (She remembers everybody) and sent us off to the recliner ... the two blondes ignored us but the lovely girl with the accent looked after us and we were in and out the fastest of all the days.
A call into Nimit to request IV fluids due to 🤮 during the night and bless him and the lovely staff on the 3rd floor who squeezed us in (right after r/therapy) even though it was the (very) end of the day for them.
A lovely 1.5 hrs in a(nother) recliner then home and a(nother) 🤮. So a(nother) night with no food and early to bed.
“Date night”!! 


Feb 29
A goodnight and breakfast in the chair followed by a visit from Jasper and Billie


Back to bed for a sleep after a “you know what” and a delivery (to his bed!) of freshly-picked organic apples (again before the public even sees them!).  

Later, still in bed, it seems my attempt at egg-salad sandwiches is moderately successful (ever-so-finely chopped spring onions+ ever-so-finely chopped celery+just the right amount of s&p+mayo - it’s a science and precision that escapes me). 
Joseph has his tiny little victories, and if this stays down, I’ll take this one

Thursday 27 February 2020

Feb 27 4/5 Radiotherapy

Uneventfu day - Joseph spent the morning in his chair and afternoon in bed getting ready for the 5.00 p.m. treatment.  (Cassia babysat while I had a haircut and pedicure! Oh bliss!)

We stocked up on the Oxy and anti-nausea and he made it through the waiting (45 mins), in the recliner, and through the treatment and back home by 6.30 p.m. - but just before he crashed into bed  - a 🤮.  Dear me he almost made it! So nothing to eat - he’ll just stay in bed now.


It still seems that the moving pain is less than before but the low-level pain that only goes away when lying down remains .... but ...excited by this teeny tiny development.

Last radiotherapy tomorrow.

Wednesday 26 February 2020

Feb 26, 3/5 Radiotherapy

Not sure if it was the 75mcgm of Fentanyl, the top up of fluids or ??, but we (both) had  6 + 2hrs sleep and less pain getting out of bed!  We added the new anti-nausea pills along with the extra Oxy before we leave, we followed the recliner-plan and even though the treatment was 1hr+ late and 1hr+ for the doctor-review there is NO 🤮!!

We were pretty excited about the less-pain part of the day and softly wondered if the radiotherapy was working ... until the review doctor said “no” it’s usually 1-2 weeks before you see any results!  Bummer - we didn’t ask and nobody told us before this!  Anyway tonight we are back to the usual pain level and with two more treatments to go still wondering what lies ahead!

Did I mention how impressed we are with pretty much everything and everybody we’ve encountered since we started this journey!! Apart from the one admin/receptionist who is too busy to look up and serve ... well anybody ... and one slightly grumpy night nurse (Jospeh came to understand why he was grumpy - buzzers go off all night because patients, alone in their dark (private) room are scared), everybody has been very nice. A bit nervous about how young some staff are, but we’ve learnt we have to stay alert no matter how old or young or experienced or inexperienced. We’ve lightened up a bit from our solemn not-so-jolly start and make sure we show our gratitude to all.

So - we aren’t sure what we have done to the nurses on the admin desk at radiotherapy! Is it Joseph’s 🤮 across from their desk? Is it because he requests a recliner (so he doesn’t 🤮 in the waiting room)? Is it because he insists on getting up/down at his own pace?  (So he doesn’t 🤮). Is it because he returns to the recliner after treatments (until he feels he can leave without 🤮) -well we already know this annoys them given their “I thought you had left” yell across the room!  It’s the two loud-blonde Australian ones - not the efficient one with the accent - if it wasn’t for her we’d still be sitting there! 

 So it will be interesting for the last two treatments, because for sure he’s heading to the recliner!


And we found the perfect bottle-holder for the walker ...
Our friends Mary & Scott’s company makes these for bikes
But hey!! They work here as well.  



Tuesday 25 February 2020

Feb 25, 2/5 radiotherapy

It’s a 9.25 a.m. appointment urgh! (That’s early for us!) but we made it and we have decided on a different plan of attack ...

A recliner (instead of a bed) and he controls the up/down pace. Then onto the walker to walk (slowly) to treatment table with some pain and anguish hoisting onto and off of that - then back to the recliner while he decomposes and hopefully a slow-no-vomit-ride home!  They recognise us at check-in and he’s in a recliner in no time ready to go ... except the doctor needs to visit.

After my (slightly desperate) call yesterday, in the middle of the 🤮, I guess I freaked them out enough that the RADONC doctor decided she needed to see him. In the end it was decided to increase the anti-nausea pills in strength (a lot) and take them before leaving for hospital/treatment and then a top up from them, just before treatment. ...So OxyCodone ++ and anti-nausea ++++  perhaps that is the right combo?

We’ve now missed the appointment time and are waaay behind schedule.

Meantime I called Renee to request fluid IV at the clinic, after the radiotherapy. (Inspite of the added time and bumpy drive required, Joseph even agreed he needed it after yesterday he has nothing left.).  Renee has to check with Nimit (who is in a different hospital/clinic/land every half of every day!) and today it turns out, he is one floor directly above us!

While Jospeh lies in his comfy chair waiting, I pop UP (to 3) to fill the prescription (and coffee cup), then flip/flopped in my thongs back DOWN (to 2) to find Joseph just leaving for treatment!! Figured I had time to pop UP (to 3) in hopes I might see Nimit so off I flip/flop UP (to 3), and in between patients, Nimit noticed me (👋🏻!!!) and said we don’t need to drive to the clinic, we can have the IV fluids right here!!!  Dear Lord - other than admitting him to hosp, this is the best news and I nearly kiss him!!  ... and off he goes to the chemo-day treatment area to make those arrangements. (Hope some poor chemo patient wasn’t ejected to make room!!) ...Anyway off I flip/flop DOWN (to 2) to get Joseph, but he refuses to move until he is guaranteed a treatment chair is free ... so off I flip/flop UP (to 3) to make sure and then back DOWN (to 2) to assure him and bring him UP (to 3)! ... and there he sits in the comfortable recliner for 1.5 hrs being saturated with yummy fluids.  The movements up and down and walking (gingerly) are still painful but there are no 🤮... until we are back home - but that’s one vs. the six from yesterday!
This is how Joseph handles waiting!!


We left at 8.30 a.m. and it’s 3.00 p.m. by the time we are back home... and I have surely walked a marathon because each treatment area, on each floor, is down a very long hallway ... and while I have no choice but to take the elevator, I am in my thongs, not my walking sandals, and now I think I need an IV ... of something!!  ... but all worth it for a much better experience and the hopes of repeating such tomorrow

Monday 24 February 2020

Feb 24th - first day of radiotherapy

He struggled to RAH for first radiotherapy treatment at 1.00 p.m  Luckily the check-in lady remembered us and took him through to lie on a bed and wait ... 40 mins!

He stayed on the bed after the treatment until he felt he could tackle getting up ... but the bed didn’t have a trapeze or a remote to raise himself up with and half-way into it he had to shuffle off to 🤮 (in the bathroom in front of the nurses station!!). The silver lining was I could ask them to clean it up! 😔 ... sadly it continued during the 10-min drive home (we have a supply of “sick bags”) and didn’t finish until 5.30p.m. when he finally fell asleep. 

I called Oncology & Radiology & Renee with hopes they would suggest he be admitted to hospital - but alas! Just a suggestion of a different anti-nausea pill - so we have that now ... and dear Simone telling me to get it into him now!  (Hmmm should have thought of that earlier).  But we did - along with more OxyContin (lost track of how many he took and lost, then took again!) and decided to put on the new 75mcgm Fentanyl pack!!  We honestly thought “what did we have to lose”!   

So it seems the self-medicating has worked along with him remaining immobile in bed and not getting up for ANYTHING!  But he’s dehydrated and we both fear a repeat performance for the next treatment at 9.30 am.tomorrow Feb 25 - at which point i think we will beg/demand/plead/cajole - whatever it takes to have them admit him until the treatment is finished (Friday).

That way he could avoid the pain of; in/out bed, in/out car, on/off bed and the only pain would be sliding on/off hospital bed onto treatment slab.  The “funny” thing is they want him drugged up so he will/can lie still for the 15 mins of setup/treatment - but for Joseph - that’s the easy part... it’s all the other bits that cause him so much grief (not the treatment) and no amount of painkillers seem to help that ... just the radiotherapy we hope.

Sunday 23 February 2020

Feb 22 & 23

Sat 22
The pain from the fracture is now so bad when getting up or sitting down, that the Dr. agreed to increase the Fentanyl to 75.  So today we added an extra 12 patch (50+12+12) until the pharmacy has 75 in stock, and although nothing takes away the pain when moving - it’s helping the in between bits.  

He spent most of the day happily in his chair, with a visit from C&P & kiddies then Julie and Jill arrived home with a rotisserie chicken as a treat for dinner (him and Julie - not me) and the smell caused a 🤮 and more pain and so it was back to bed for the rest of the day.

Sun 23
... and that’s how Sunday played out as well. A good breakfast and a visit from all four grandkiddies in the morning... but that proved too much (or everything) and another 🤮 and another afternoon in bed.  A late rally in the evening to eat a little with us but then back to bed.


Tomorrow it’s off to the hospital for a radiotherapy appointment (the first of five) and such hopes for some pain relief.   Then looking ahead to the last of the trial treatments the following Monday ...

... and that will be the 2nd March ... three months already since “D” day!


Showing off for grandpa!

Saturday 22 February 2020

Feb 20 & 21

Thursday 20
There was a lineup at the Radiotherapy dept. check-in and even though Joseph stocked up on pills for the event, the chairs in the waiting room defeated him. Thanks to the lady ALONE on the check-in desk - who abandoned the line up and whisked him away to a recliner in a back room. He emerged from the “planning scan” with two black dots on his tummy and longing for his bed.
... and we have a date for the radiotherapy to start on Monday Feb 24.  We don’t know the other (4) dates - for some reason we won’t know them until we arrive on Monday!

Friday 21
Julie from Canberra is visiting and as well as quietly cleaning up behind me - she has agreed that today, come-what-may, we will go to Centrelink and we will submit an application for a SENIORS HEALTH CARD (I’ve spent weeks trying to do this on-line and had all but given up!). 

This card, that I didn’t know existed, is for self-funded retirees to receive discounted drugs and even with the govt. subsidy, the cost of the drugs Joseph now devours grows daily, so, in the words of my other friend from Canberra, Carol ... “Nil bastardum carborundum”, we leave Joseph happily in his chair with Cassia and Mireia and off we go.

An hour wait; I fall asleep, Julie stands on guard for thee and no one gets ahead of us! ... and after another 40 mins of trying to prove that Joseph exists, and lives with me, and that I am who I say I am, and thank goodness I have the photo of our new lease I just submitted, because even though it’s in my name, it also includes Joseph’s name/signature because, well, he lives with me and that crazy form saves the day (afternoon) and we leave with numbers and codes and the promise of a card... and “Nil bastardum carborundum“ ... we didn’t let them!
just 
In lieu of any interesting photos and until the black dots ... this is all I have to break up the text.

I guess that’s a pretty good day.

Thursday 20 February 2020

Feb 18 & 19

A couple of reasonably uneventful days topped off with a lovely afternoon of fluids on Wednesday (19th) 

Fluids!  Yum Yum!!
Not everybody assumes this position but it works for Joseph!

Now we are ready for the start of the radiotherapy on Thursday (20th) - the “dot” tattoo.  
And we find ourselves excited by this treatment ... with side affects (for Joseph) unknown !

Monday 17 February 2020

Feb 15, 16, 17

A weekend of mostly sleeping, drugs, tiny eating and lovely visits.

Critical timing of pills meant a good night sleep for both and so a reasonable day spent in the chair.  Fish and chips (& prawns) with Jen & Michael and C&P and kiddies and Joseph sat in his chair and ate 6 prawns and some ice cream. Not a bad Saturday.

Not such good pill timing the next night and not a great Sunday.  Kiddies both visited while I was out so he made an extra effort to sit in the chair. In bed by 4.00 p.m. and pretty miserable through the night.  

At the 5.30a.m pill taking we decided the 4 hourly Oxy schedule the RAH pharmacist stipulated, as opposed to the “as needed” schedule while in hospital, wasn’t working so he would just take them when he felt he needed (mostly 45 mins before any activity).  No doubt it will be too many once we tally them up and so probably a bigger dose of Fentany will be neededl!  On 62.5 now - how high can you go???!!

Regardless nothing stops the pain of getting out of bed/chair or bending.  So we topped up for the trip to the clinic today (Monday) for fluid infusion and he just makes it to the chair without 🤮 (I hate typing the word).  Two hours for the ½ litre is a tad luxurious (too fast hurts his kidneys) but with another OxyCodone and the fluids seeping into his body and I finally find the right spot for the pillow and Venus aligns with Mars and he declares it the best session ever! ... and he looks like a different person!

More good bits happened through out the day; the Palliative Care Team called - not as morbid as it sounds - help with all kinds of things, pain included and after two phone calls (me to them) we have an appointment with Radiotherapy for the initial scan and tattoo on Thursday!!  Yippee!!  Hopefully they tell us the daily treatments start Monday (too hopeful) or at least one day next week?  We have such high hopes for this treatment.


I took my Mother to a funeral on Sunday (cousin of mine) and while I loved seeing my other cousins and have a timeout from home,it may explain why I ended up rather down on Sunday night and didn’t write a posting .

Friday 14 February 2020

Feb 14 ... Valentine’s Day

... but you wouldn’t know it at the clinic - not a 🌹  or a  ❤️ insight!

Five days late and we are happy (not quite jolly) to be here for treatment! Bit of a tough ride (literally/figuratively) to get here! Even the doctor was treated to a 🤮  ( into a bag) in his office 😔  today!  Into the chair and a bag of fluid and the change is instant!  Then the precious drugs ... with (huge) hopes for some positive effects in the next two weeks.

We often lament about friends/family who need to take copious amounts of pills and suddenly here we are:
He’s gone from ZERO to ...
Fentanyl -  (upped by 12 today) = 62micrograms 
Panadol 💊 - 500 gms 2 x 4/day = 8
Coloxyl  💩 - 2 x 2/ day = 4
Movicol  💩 - 1sachet 2/day
OxyCodone 💊 10 ml - 1 x 6/day = 6
Maxolon 🤢 - 1 x 3/day = 3
TOTAL = 21 (tough) pills he swallows every day - day and night. ... we figure that until he starts the radiotherapy and the back pain is reduced  - 4 hrs (less the 10-15 mins sitting up reading the computer while the pills slide down) is the biggest stretch of sleep we will enjoy. 💤 

... and while we are “awake” I’m really looking forward to “chatting” with my 62mcgm Fentanyl-fuelled husband ... but we won’t be talking about Fentanyl because during our “discussion ” about how often he gets a new patch...  I had heard the pharmacist say “... every 3 days” -  so ON the 3rd day (at 9.00 a.m.) I was ready to pop on another patch (no math needed there)!   Turns out HE knew that 3 days was *72hrs. Even in his Fentanyl-haze HE could do the math - HE knew the consequences of one day early!  Needless to say my contract as the pain-killer nurse has been terminated!

*So why didn’t the pharmacist just say every 72 hrs?? 😢


P.S. do NOT take the 10 mg OxyContin anymore!!

Thursday 13 February 2020

Feb 13

We made it home ... it all worked out perfectly...



I’m sleeping on his and my own mattress ... it might be a bit too high!!


He’s in ... everything at arm’s reach


Wednesday 12 February 2020

Feb 12th

Crazy day ...

We are to be discharged today!   We had no idea! 

... But of course - with the patch, Joseph’s pain is mostly under control and the radiotherapy can be given as an outpatient - so there is no need for us to be here.

The good news is, we have our trial treatment on Friday. Angas the RADONC tells us that next week he will have an exploratory scan and then the radiation itself (hopefully) by the end of that week (Feb 21). 

So it’s Fentanyl baby for a few weeks ... at least.

A life saver for joseph - a life taker for some.

But we can’t/won’t go until we have the hospital bed - it’s the only way Joseph can get out of bed - painkillers or no painkillers. We think we can squeeze Jen/Jane’s bed into our elevator but it needs to be delivered - it’s just too heavy!!  ... The Occupational Therapist has found a hospital bed that can be delivered today so we don’t have much choice - we’ll rent that bed for a couple of weeks and work on getting the other bed.

I have a minor melt-down thinking about where to put the bed - where to put the things that are where the bed will go ... and when to do all of that ... and then it turns out the bed can’t be delivered today!!   Hallelujah!! The bed lady apologises - I tell her it’s a gift from heaven!

So tonight Joseph is happy ... happy he’ll have yet another needle stuck in his veins for the trial drugs and happy to get his first tattoo -  a tattoo to mark the spot that will hopefully take away the back pain.   You could say he’s delirious!

Tuesday 11 February 2020

Feb 11th

The BEST night in a very long time so it seems the patch is working!   Hooray!!  
Extra pills still needed through the day/night and any activity requires strategic planning and math calculations to avoid pain and agony.  Many interesting discussions” between Fentanyl-induced patient and no-math ”nurse” jill!!

We hear that the US has agreed with radiotherapy and that it won’t interfere with the trial and they want it to start asap. (The resident relaying this message also tells joseph that if HE was taking as much Fentanyl as joseph is, it would render him unconscious!!) 

Angus the Radiology Oncologist (RADONC) arrives to explain; radiotherapy will not heal the fracture but attacks the lesion/mass causing the break and reduce the pain, treatment will be either one large dose or five (daily) smaller ones, and a “sunburn” at the site seems to be the worst side effect (or that’s what we hear!)  Of all the options it seems this is our best choice to keep us on the trial.

More waiting ... trial treatment at clinic on Friday we HOPE ... radiotherapy session(s) at RAH Monday we HOPE!

So hospital for a few more days - regardless we can’t/won’t go home until we have a “hospital bed”! Joseph simply can’t get out of bed without it. Turns out Simone’s Aunt Jen (her mother’s sister) has a “spare” hospital bed at her house!  

The craziness that has my sister (Jen) with a “spare” recliner chair and walker (and a million other things we’ll need) and Jane’s sister (Jen) with a hospital bed!  

For all the bad luck, we are the luckiest people in the world

The sheepskin makes the already comfortable bed even more so!

Monday 10 February 2020

Feb 10th

Finally a visit from our Oncologist (Nimit - no-one calls him Dr. Singhal!) and we have a plan: 
- The fracture (2nd vertebrae) appears to be the only one.
- Radiotherapy to fix the fracture, should not interfere with the trial (not near main cancer site). 
- Adjust painkillers so he can tolerate the trip to the clinic BY CAR - hopefully by Friday. We know there isn’t room for a bed in the treatment area and presume arriving by ambulance for a trial doesn’t look good!!
- Replace new pill with a Fentanyl patch - not only stronger but also bypasses the gut ... hopefully no need for anti-nausea pills or those little brown ones 💩
- Continue OxyContin and Panadol as well as the patch.  Woah!!

Still waiting for CT scan from last week, and after repeated attempts to insert another cannula - ouch!! (previous one removed after 3 days), and fasting from 10.00 a.m. for 2.00 scan - that gets moved to 4.00 pm.- he finally makes the last CT scan of the day and is back   by 5.30!!




After the Oncologist and before the CT Scan, in the middle of his pain and anguish, Joseph had a little surprise for me ... some beautiful pearl earrings. He remembered how much I missed my lost pearl earrings (that I wore everyday) ... I couldn’t even remember his toothbrush (or hairbrush, or jocks, or t-shirt!!) ... 



He even wrote on the card and thanked me for being so wonderful ... well I feel a tad guilty because all those poor sods who go about being wonderful and kind and loving every day of the year have to perform miracles to be noticed!!  Me - I just be nice for a change ... and he spoils me! 



Sunday 9 February 2020

Feb 9th ...

We know a little more...

Annabelle the registrar was able to tell us the plan for pain meds; more of this, less of that and a new one (adds Naloxone to Oxy in hopes of reducing the constipation and vomiting) ... so “we” are pretty excited about all of this!!

“They” are setting up an appointment with a Radiology Oncologist as a backup but the focus is still trying to keep him in the trial. Our Oncologist (Nimit Singhal) will weigh up all of the info he has and make the final decision.   A CT scan also planned so Monday 10th will be busy ... one way or another.

It’s been an up and down day; more uncertainty adds to the pain,  but the updated pill regime seems to be helping (if the dozing is any indication (unless that’s to avoid chatting with jill!)) 😔 




Regardless we are “enjoying” our spa stay!

Saturday 8 February 2020

Feb 8

This morning we found out what has been causing the “new” pain - the pain in his lower back.  Turns out Joseph has a “pathological fracture”. This is a fracture caused by the cancer (as opposed to a fall etc.).

Not great news obviously, but our angel (Dr. Dee) popped her head in to tells us that it can be fixed and it’s not as horrid as it sounds.  It does however, require much discussion with our Oncologist and a million other people - especially regarding the trial (2nd round now two days away).


So we’ll stay in hospital while/until it is all sorted out. Lying or sleeping in his comfortable hospital bed, eating the very nice hospital food, raising and lowering the bed ever so slowly,  and keeping the bright-blue buzzer close by (there are somethings I “can’t” do!!
Joseph is in love with this grip above his bed
Makes moving in bed so much easier he says



Feb 7th

... So since midnight last night (Thurs) they have adjusted the dosage of OxyC and reduced the Panadol and it seems the current pain is under control.  By 4.00 p.m.today he is looking and feeling a lot better.  He’s a tad woosey and tired but otherwise feeling relieved that we have had this chance to climb out of the hole we were in. 

He’s had a bone scan and tomorrow will have another scan and then the Oncologist will hopefully find the cause of the “new” pain. 

In between family visits we had a visit from Danielle (Dee) who is Mischa & Simone’s friend and who, most importantly, is an oncologist at the hospital!! If Simone is our hero, then Dee is our angel!!  She explained so much to us; most importantly that with Immunotherapy treatments sometimes the cancer “explodes” before it starts to shrink (as the drugs start to work). Woah!!  So unless the scans shows otherwise we are hoping that might explain the lower-back pain.

Dee stayed and talked and amongst other things Dee said this ... that the Oncologist no matter how good they are, are focused on the next treatment. The Oncologist figures the sooner he/she can sort out the treatment/drugs the sooner the patient will be free of the pain (or have less) and of course then feel better. The Oncologist (by and large) aren’t very good with the other side of cancer; the effects of the cancer and the effects of the drugs etc.   So, (huge learning curve) you need a palliative-care doctor to work with the Oncologist.  This doctor will sort out the pain and anything else you need help with.

Hallelujah - this is everything we needed to know.  

Perhaps this info was buried in one of the 152,000,000 pamphlets they gave us, and perhaps I should have glanced a tad harder/longer at them, and perhaps I shouldn’t expect that somebody would tell us this ... and well ... it doesn’t matter because somebody did tell us, and as well as being a doctor and an angel ... Dee is from Kirkland Lake!!  
Et Mon Dieu!! ...she’s bilingual!!
... merci Danielle!


This is our angel
I was trying to convince her to remove the cannula from Joseph’s arm so I could post the photo
to show how lucky we are
to have friends in high places!
Turns out it needed to stay in ☹️!
I remembered lots of things I had to bring in
 I didn’t remember; hairbrush, toothbrush, electric razor, jocks that fit, tshirts that aren’t too hot etc.
But we found a brush!


Friday 7 February 2020

Feb 6th

... turned out to be an eventful day ... after a bad night...

Lower back pain started a few days ago and was now agony reaching down, turning in bed and especially getting in/out so leaving bed now limited to toilet duties.  Even resorted to using the walker (my sister happened to have lying around!!) and he was pretty miserable.

Agreed we needed to visit the doctor now and not wait until treatment #2 on Monday 10th.

Simone (also a physio) came over to help and stated the obvious; there was no need for this much pain - not in the back, not in the kidneys - not anywhere and the doctor needed to know how miserable he was.

For sure the effect of not shaving or brushing of hair (!!) as well as the look on his face AND sharing that “no it wasn’t 6-8 Panadol a day but more like 12”, was enough to convince the doctor that we needed a time out. A stay in hospital to sort out pain meds, have a scan and figure out what was causing the pain and with his call we skipped admissions and were into a bed before we could find a spot for the walker.

Being the medical experts (we have now become) we are pretty sure that the blocked/enlarged kidney is the cause of most problems so I asked the doctor if it wasn’t possible to “just punch a hole” in it?  Turns out it is indeed possible - we just need the scans to see where we are at.

Joseph insisted I go home so I left him armed with his CALL BUTTON and I handed him over to the nursing staff!


It’s a nice comfortable bed!

NEW Royal Adelaide Hospital

In the new RAH every room is a private room with it’s own ensuite!  Joseph reckons the private patients (the ones who pay huge premiums) get the rooms “with a view” but it doesn’t matter - this is very nice even if no wifi, but there is free TV (only on the cancer ward!!) and internet (on smart TV) so as a public patient we are most grateful ... for everything.

There IS a view ... it’s over there ...

This bench converts to a bed if I wanted to stay overnight
Joseph says no!

Wednesday 5 February 2020

FEB 3 - 5

Feb 3
Joseph is quietly disappointed that there haven’t been more positive effects from the trial drugs - sometimes IF they work it can happen quite quickly after treatment starts. Next week is the 2nd treatment - week four of the nine-week cycle - so we still have time...

Now more pain so adding extra painkillers. Still no nausea, but any movement or, it seems, the wrong word can bring on vomiting! Never sure if painkillers stay down so taking extra pills and that’s a double-edge sword... more waking (to take them) and more sleeping (effect).

Feb 4
Nights are becoming tricky ... rolling over is agony - sitting up is agony ... and as it is for everybody  ... everything is magnified in the quiet of the night.

To avoid the pain of sitting up to take water we bought a 360 cup. It’s just like the one Cedric (& a million other toddlers) uses and it is a minor miracle - there are no drips!  I need to find out who invented it and have them knighted!


Feb 5
It’s all a bit messy right now; increased pain, and still the odd vomit that makes it difficult to think of what to eat (if to eat at all).

Tonight it’s Ribs n’ Wings night at our local hotel and I was hankering for those ribs but the mere mention of them upset Joseph’s tummy. We had (my)Gypsy Soup, we had pasta (with his frozen sauce), we had tinned tomato soup and beans (favourites right now) but it turns out, the food that is probably the worst thing one could eat, is what he wanted.  

So I zipped off to Macca’s (Aus the only place in the world allowed to not call it MacDonald’s) figured I could do it faster than UBER guy on his bike (I hate UBER). The closest is across town, on the edge of the CBD, so you have to PAY for parking!! (Well you have to go to a machine, get a ticket then return to your car and place the ticket on the dash - there may or may not be $$s exchanged - I didn’t have time to find out)!! So I chose the drive-through (I hate drive-through) in the hopes of speeding up the trip and I just know the little girl at the window thought the TWO BIG MACS & LARGE FRIES were just for me - the blob - too lazy to get out of her car!


I zipped back home before he lost his “appetite” and he ate his burger, and most of the fries and even some coke ... and it stayed down ... and that’s about as sad as it gets.

Saturday 1 February 2020

Day 10 & 11

Day 10
Comfortable inside, managing pill intake for pain and nausea - outside Ottawa-like humidity with promise of rain later in the day. Joseph excited by the thought of rain - none to speak of here for so long - and dance in it!
Instead he makes the walk to the pharmacy - just two blocks away but in the 35c-feels-like 40c humidity its agony ... for me anyway. Jospeh plods very slowly - every bump jiggles his kidneys and is agony for him.  Still he makes it there and back but when the rain finally comes - it’s too much to make the trip back down and out so he stands on the balcony “soaking” it in.



Day 11

Planned walk cancelled due to visitors ... and pizza with C&P&C&M ... and that’s OK!