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.

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.

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!!!  😔 

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 😑!

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!

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. 

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”.