Thursday 30 January 2020

Day 8 & 9

Day 8:
Drs.visit, bloods and more i-v fluids - another ½ ltr/1hr.

So this time sitting in the chair while the nurses do their magic,  over and over again; find a good vein, insert a cannula (with as little pain as possible), unwrap the lines, the bags, the needles (oh so much plastic waste!), wash their hands a million times, gloves on, gloves off, etc. etc.  THIS time we managed a laugh! They said febrile I heard feral ... doesn’t matter - a quiet laugh - the nurses and us.  So while I never wanted us to join this “club” - it seems we are.

Day 9
Still no vomiting, still juggling pills to handle pain, still up and down.  But for the first time in weeks he sat at the table with C&P&me, and ate some salad!!

Family:
How lucky are we to have; Simone who with her medical knowledge knows that there doesn’t need to be nausea and is now our hero, Pablo who knows about immunology and can explain to us how this trial drug works ... so we both understand, Cassia who is so-not-like her mother, that she can listen and learn as dad explains how the finances work and Mischa ready at the drop of a hat to leave his family and race over to help his dad relieve his pain! Mischa can get  Marijuana ... medicinal of course.  

That’s a pretty good family to have here with us.

Monday 27 January 2020

Day 7 Australia Day

It was a glorious Monday of a long weekend, so we decided that a walk across the road to the parklands, with our family was in order.  

With the nausea mostly gone and not having to worry that moving would bring on vomiting, he felt he could make it so long as there was a comfortable chair to sit in!
Not a great photo of Joseph!
...but you can see how lucky we are to have this across the (tiny) street from us!


... and there we all sat; for two hours of ice cream and smoothies and kicking balls and running and jumping and turning cartwheels

          ... it was our salute to Australia ... with a little bit of Canada never far away

Day 6 & 7

It seems that days 6 & 7 have been two of those boring days we were looking forward to!

Able to eat a little (it’s tricky to figure out exactly what) and drink. Still spikes in temp and still very tired. Still pain when getting up and down or bending (swollen kidney) and it seems the 6/12/6 didn’t work so he’s back to taking Panadol in between Oxy.

He alternates between sitting in his chair watching the tennis and bed but I think sometime this week he’ll feel like starting on the other puzzles.  (Tennis reduces to nighttime matches only.)


So we are happy with our boring two days and ready for more bloods and i-v fluids on day 8 (tuesday).

Day 4 & 5

Day 4
Not a great day; pain, vomiting, fevers, no eating & little drinking!
A visit from M&S and Simone suggested that joseph needed anti-nausea medication. The OxyContin can cause nausea (we now realize that was the start of it!) but he needs it for the pain! Urgh!  She also reminded me that the immunotherapy drugs can cause spikes in temperature - so I can stop poking poor joseph awake with the thermometer.

Day 5
So given the horrible day 4, and Simone’s suggestion, and one last vomit at 11.00 a.m. - Joseph was ready to tell the doctor exactly how he was feeling. Up until now, a bit of self-diagnosing that the extra fluids were causing kidney pain and that was causing the vomiting, and that meant no appetite etc. etc. - and we were both going crazy. 

Doctor agreed with the anti-nausea pills and added some to the intravenous fluids. Joseph was still nervous about the extra fluids effect on his kidneys, so agreed to have just ½ litre. With the injection of fluids and a-v drug, by late afternoon joseph was feeling better than he had for a while. 😊 

(Not) NurseJill ...
 I raced off to the Chemist (pharmacy) to get the a-v pills as well as more Panadol (Tylenol)  (taken in addition to OxyContin).  I was a bit confused about what kind of Panadol he takes - pretty sure it’s the slow-release but none of the 10+ boxes Morag (pharmacist) showed me looked familiar (they are behind the counter so she has get each out for me) so I texted joseph and it turns it’s the RAPID release!  (The Oxy is SLOW release!) ☹️ 

So then Morag asked me about how/when he takes the pills.  I told her; Oxy twice a day and Panadol as needed.  She started mentioning numbers ... 6s, 12s, 6s!!!  She said them again and again, different ways and finally I think she could tell from my face (and the little tears), that I knew not of what she was speaking!  So she drew me a chart - a chart from her pharmacy school days - and finally I understood.  ... Luckily for poor Morag it was closing time because I think she really needed to go home after all that.

It’s a very basic pill-taking schedule
It was the NUMBERS that confused me 😔 

I took the pills and a copy of the chart back to Joseph. He understood the 6/12/6/12. He said he is grateful for my concern but that he would look after his pill intake all by himself.

Thursday 23 January 2020

Days 2 & 3

... not sure whether to post a day-by-day account of the next 9 weeks?  We are hoping there are some really boring days but these beginning days (of treatment) I guess have the potential to be not-boring...

Day 2 (Tuesday) 
... fairly uneventful - running errands while feeling “good” in preparation for maybe worse days ahead, meant a tired joe by the end.  The nausea and pain are fairly constant and we now have vomiting on occasion.  Hydration is a huge part of this trial, so that doesn’t help and to make sure it isn’t a problem they are provide intravenous fluids.

Day 3 (Wed)
... hooked up again - saline not drugs - more vomiting and now elevated temperatures... but otherwise!!!  ðŸ˜” 

Happiness:
Right now it’s a fleeting thing, and at the clinic, we are having trouble dealing with happy people! Most are quiet, efficient and friendly - some chat a tad too loudly and joyfully for us!  Of course it’s our issue (there are always headphones) and I’m sure that little “quiet-like-a-mouse” me would annoy everybody if I had to work with sick people on a daily basis ... and I bet as the weeks go by, and we (hopefully) feel more joyful, they will be complaining about me ðŸ˜‘!

Driving
The trip from home to clinic is 7.5kms and a 17 min drive. I drive (OxyContin + driving don’t work) but try as I might it’s agony for him. I’m pretty sure it’s because I have to change gears! (I think my record shows what an excellent driver I am ☹️).  We have a manual - it’s the smallest SUV Joseph could find - because the extra height was needed to access the various birding sights. Sadly, I think the manual might have to go.

Walking:

He can walk, once he gets upright and then no bending or twisting and he can go straight ahead, BUT dear me “walks” aren’t on the cards yet - next week we hope!

Monday 20 January 2020

Just as the doctor mentioned - not until the drug is flowing through his veins ...

We started this Monday at 10.30 a.m. and after the vitals and bloods and waiting 1.5hrs for the final blood results found out his albumen reading was 30 and if it had been 29 he would have been disqualified from the trial!!! 

Finally at 1.30 p.m. the drugs start to flow and we can “relax”!!  




A long day - fluids, drugs, wait, bloods, drugs, wait, bloods and then leave for home at 5.00 ... but we are OK with all of that.  It’s taken seven (!!) weeks to get to this point ... nine more weeks of waiting (3 lots of treatments) then more scans to assess.  Meantime, and this is our hope; minimal side affects, the trial drugs start working and there is some improvement in how joseph feels.

ONE has become our favourite number ...

Bravo to joseph for forcing himself to eat when he really didn’t feel like it ... and it’s not as though there was my delicious cooking there to entice him!!   I’m thinking that tiny little “oneth” of albumen, the tiny little bit that made it for us, might be from the bowl of my home-made carrot soup?? Of course - it could be that I used Super *Sally’s Stock in it OR maybe it was the excessive amount of butter that makes it so yummy? ... it could have been that he ate some red-cabbage coleslaw Sat. night - the first bit of veg in it’s raw form he’s had for a few weeks ... it could have been the croissants/cheese/ham/jam we had for breakfast Sat a.m. - just the four of us.  

Well it could have been any of those but I think it was mostly all of those positive vibes, prayers and love you all sent our way - and we thank you so much for all of them.

*Super Sally is the wife of the man Joseph does his Mallee-Fowl monitoring with.  Her name is actually just Sally but she’s one of those people who can do anything (I have a few of those in my life!) and loves to cook - hence the stock

Friday 17 January 2020

Not there yet ...

Doctor’s visit today - last one before treatment starts on Monday ... well maybe or maybe not!

Doctor tell us that they are still waiting for confirmation from US and that until he’s in the chair with the injection and drugs pumping only then can we “relax”.  He said they have all different kinds of criteria and he’s even seen treatment stopped minutes before it starts.

So a weekend of beautiful weather ... that we will try to enjoy ... and not think about the “whatifs”.

Thursday 16 January 2020

More tests and nearly there ...

We are well into the appointments and days away from the start of the treatment and it can’t start soon enough! Joseph’s right kidney, isn’t working (hasn’t been for a while) and is causing him grief so he’s upped the OxyContin and counting the hours until Monday.

Today was two scans that required die to be injected -  one of them was a scan of the blood!? (with radio-active dye) - but it seems that the jumping on and off the high tables caused more grief than the needles!!   Yesterday was more blood and another ECG (not sure what they think has changed since their last one a week ago?!) but we won’t complain because Renee tell us we are definitely IN!!  We ask about the results of the biopsy - isn’t there a requirement for the appearance of the protein?

Well not according to Renee - she tell us that it doesn’t matter what the biopsy shows in the US that was just so they know how it all looks - a baseline reading of sorts. Huh?   We explain to her that wasn’t what we were told by Carol (who was filling in for Mel who has since been replaced by Renee and we never did meet).  Carol, who clipped, clopped around in heels (urgh!) told us “oh no you are not necessarily IN - it will all depend on the results of the biopsy test by head office, as to whether you are approved”! Dear me!!  We explain to Renee the agony that the waiting and wondering has caused us and I’m still not sure she understood.  

So far joseph is the only person in adelaide on this trial.  It has a crazy set of requirements - on one hand they need somebody in fairly good health (heart, blood pressure etc.) and on the other hand somebody quite sick with cancer ... that has spread.  So “lucky” is Jospeh to tick off all of those boxes and hence our eagerness to get started.  Joseph says he can’t believe how much he is looking forward to something so horrible.

Pablo did a great job of explaining how the immunotherapy will work and I really did understand what he was saying ... but of course I can’t remember.  BUT - I’ll get him to explain it again and include it in here because apart from how much faith we are investing in it - it is also quite fascinating.


So just one more weekend ... 

Wednesday 15 January 2020


I guess your kind words and love sent from near and far are working ...

We have just been notified that our appointments have been bought forwarded and the treatment is now starting Monday 20th.  We have an appointment time and even an appointment card but I’ll feel better (not sure about joseph) when he is finally sitting in the chair with the contraption in his arm and the serum (or whatever it’s called) set to go.

All being well - it will be treatment on day 1, day 3 and day 5.  Some of that will be fluid replacement but that cycle should repeat every 3 weeks until week 9 when he will have a follow-up CT scan ... and I guess a reassessment.  We also know the treatment won’t be fun but right now it’s what we need.

Joseph is being a trooper and enjoying having me wait on him ... and for a change I’m not complaining (too much) about it! Mostly I make him smoothies!!    Sister Jen offered up a spare recliner (who has a spare recliner sitting around?!) and Jospeh accepted it gratefully and it has become his new home!  With an IKEA table on wheels (urgh! so many screws!!) that wheels nicely over the top of the chair it’s a pretty good setup.  

The table was chosen so he could sit and do jigsaw puzzles but right now he’s in a bit too much pain so Cassia stepped in and finished off the 3D puzzle and it’s amazing!


So more vials of blood (how much does one person have to give) and yet another CT scan (easy to type and say but each time it’s an intravenous injection of dye that’s not a lot of fun). Tomorrow will be #3 since Dec 3rd.

Thank goodness it’s tennis season here down under ... it acts as a nice background to fall asleep to, and even watch!  Thank goodness also for Netflix, Stan and YouTube and as always thanks to Steve Jobs for our iPhones that can double as remotes for our AppleTV because we lost our little tiny silver one (somebody must have received for Christmas!!?? - pretty sure it fell while I was wrapping gifts!). Otherwise Netflix et al, and the entertainment that attempts to take your mind of of life would be out of touch!

I’m off now to buy a sheepskin for the recliner - all that sitting (I know he needs to get up and walk but ...) needs a bit of padding for his poor bottom.  To think we shipped a container filled with 1,000 sheepskins to Ottawa in February 1983.  We had them on beds, on floors, in cars; we gave them as gifts - we sold some (one even to Margaret Trudeau!) and then we sold the last lot to IKEA (thank you Ulf) but now almost 37 years to the day, we need to go and buy one!!



Monday 13 January 2020

Updates on Joseph

Dec 5th  - Joseph was diagnosed with Stage 4 Cancer (in the tubes that lead from the kidney to the bladder).  It’s a not-so-common cancer, but it has spread a bit to his liver, lungs, ribs and lymph nodes.  He has had pain in his groin since returning from Canada in August and figured it was his hernia, but the pain has gathered momentum the past month so off to the doctor.  He looks back now and wonders if the on/off pain the past two years was the start of it and not the hernia?    Dec 17th we met with the Oncologist who said Jospeh would need a biopsy before he could tell us very much. He worked hard to get an appointment for the biopsy on Friday (dec 20th) instead of having to wait over the holidays and into Jan 2nd.  Dec 20th he had a biopsy that will help the Oncologist determine the best type of chemo/treatment.  We go back to him on Dec 31 and hopefully then we can get some idea of what 2020 will hold. 

Jan 6th.
After four agonising weeks of waiting, appointments, checking up, Christmas, waiting, checking up, biopsy, appointments, New Years and more waiting ( while managing his pain with OxyContin + Tylenol and sleeping a lot and feeling the cancer working its way along), joseph was finally due to start Chemotherapy today (Monday jan 6th) at the Royal Adelaide Hospital.

In the background the oncologist was working to see if Joseph would qualify for an Immunotherapy trial. (Neither treatment particularly enjoyable but results from the trial seemed promising and that is where he really wanted to be.)
We are a public patient at the RAH as opposed to those who pay premiums and attend private hospitals/clinics and choose their doctor (oncologist) etc. Ours works at both RAH and his private clinic - and it’s the clinic who are running the trial.

So minutes before they were to start chemo we heard he was IN and we raced across town to the clinic - signed the papers to hand over life as we knew it and then found out - we weren’t exactly in!  That biopsy from weeks ago needed to be sent to the company running the trial for analysis (they are looking for DP-1) and those results will determine if he is really IN.  Well that takes 7-10 days!!  So ... more waiting.  I offered to drive to hospital, pickup the biopsy and fly with it to Singapore on the 3.00 pm. Flight.  They thought i was joking ... but i wasn’t.  Urgh the waiting.

Anyway this afternoon the oncologist called joseph to ask if he was OK with the extra waiting time. Joseph told him yes, and asked his opinion and the doctor seemed to think it was indeed worth waiting. So that’s where we sit (literally) right now.  What to do to fill in this new “gap”?  They are gaps - those waiting periods  - gaps because life sort of comes to a stop until it starts again.  Indeed, it becomes a mind game.  ... and out come the jigsaw puzzles.

Jan. 13
Well we’ve been waiting - moderately patiently to hear news ... we did hear that the biopsy had left for the USA (not Singapore) on Tuesday (jan 7) and were hoping to hear later in the week to setup appointments ready for when approval came through.  

That didn’t happen - so today (Mon 13) joseph called to be told appointments were for Friday (17th) ... and then a call back to say treatment would start ... the FOLLOWING  friday January 24th!!!  Finding this very difficult to digest and joseph mustered his strongest voice to express his dismay at the extra week being added on.  

 We agreed to wait 7-10 days (for treatment to start we naively thought).  Obviously that was 7-10 WORKING days - but cancer doesn’t distinguish between work days and weekends.  Thursday 16th will be SIX weeks since the initial diagnosis - that’s a long time when nothing is happening except the cancer continuing on it’s merry way!   Well that’s not entirely true - the 3D puzzle of St. Peter’s Basillica is coming along nicely.