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.
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