Here's what you get for building an observatory, spending £thousands on kit, and waiting years to record rare astronomical events such as today's Transit of Mercury... just click the green button...
I was on Hambleton Suite on Friday with a minor tongue infection, at that time I told them that I needed to be home all day Monday, they admitted me to Haematology and I told the staff there the same. On Saturday I told the most-senior docs on the ward round, and on Sunday I told the other most-senior docs on the ward round. On Sunday night my obs and bloods were fine, I had all necessary meds, the infection was under control (my CRP marker values proved that) and they agreed to discharge me on the basis that that I would attend again on Tuesday and/or any day after. I had offered to discharge myself in order to save anyone else getting into trouble, but they said that we were all adults and so we reached a grown-up discharge agreement.
OK so far.
Then without any further involvement from me they changed the terms, saying that I was to attend Hambleton Suite on Monday at 3pm, not on Tuesday as agreed. I told them that it would be a long-shot, improbable due to the nature of what I would be doing on Monday (planetary transits are difficult to reschedule!), but I would do my best if the transit wasn't visible and if I could get transport. No promises, though. I confirmed that I would still attend on Tuesday, and/or any other day(s) this week, if I didn't attend on Monday. That was good enough, they said.
On that basis they discharged me late on Sunday. The discharge note stated that I was to attend on Monday at 3pm, no mention of Tuesday, but by then it was too late to get it corrected. I went home.
Against the odds this morning was sunny and clear and the forecast was excellent. I was all set up in the obsy, checking the scope, the mount, the camera and the solar filter, and it struck me that Hambleton Suite, being closed at the weekend, might not be aware of the situation and of the discrepancy twixt agreement and discharge note. I did the decent thing and phoned in to clarify matters.
And far from being grateful, Hambleton Suite called me in under duress. During my call to them, Ward Sister Carol threatened that I may not be considered for further ambulatory care (e.g. for chemo cycle 4) due to me being "untrustworthy". In her book, not being explicit about what you are doing means that what you are doing must be bad. Soon after, I received a call from one of the Consultants accusing me of badgering the staff into discharging me on Sunday. Both aforementioned staff issued denials that I'd ever mentioned wanting to be at home on Monday. They both said that they were unhappy with me, yet neither of them seemed to care that I might be unhappy with them.
You can imagine how I felt as I was packing away the gear and shutting the obsy even before the transit began.
When I arrived at the Hambleton Suite the threat was denied (by the Consultant, not by the Ward Sister), but the denials that I'd ever mentioned wanting to be at home on Monday were maintained.
Then they gave me platelets that could have waited until Tuesday, and sent me home.
I was, am and will continue to be livid. Those that called me in under duress today for treatment that could have waited another day will be forever unforgiven regardless of their apologies which are meaningless because they put the blame on me. The next transit will be in Nov 2019 and will not be fully-visible from the UK so I'll need to be in South America to see as much of it as I would have seen today, assuming that their ultra-long-range weather forecast for Nov 2019 holds and that we could ever afford to go. And don't even think about travel insurance for leukaemia patients! So, failing that, I will need to live to be over 90 for the one after, and that's more of a long-shot than the local city footie team winning a bit of silverware.
I tell you, my bucket-list is being shredded by alleged do-gooders. What's the point when, since my diagnosis, they have screwed up or expressed intense disdain for the perceived risks of the following?
- Christmas Eve, Christmas Day, Boxing Day;
- New Year's Eve;
- Chris's birthday;
- Valentines' Day;
- Anna's birthday;
- Easter Friday to Easter Sunday inclusive;
- Mothers' Day;
- Mum's birthday;
- Abingdon Airshow (tickets were a Christmas pressie from Chris - close access to Spitfires etc.);
- All fell-walking for 2016 and for half of 2017;
- All tending of my greenhouse;
- and now the only Transit of Mercury conveniently observable and recordable by me during my lifetime.
Not a bad hatchet-job since Dec 2015. And not conducive to me keeping a Positive Mental Attitude.
Today I was told that "most of these things could have been managed if only I had mentioned them".
Well, that's ABSOLUTE FUCKING BULLSHIT.
I did tell them about most of ones that I wanted to be out for, and got doom & gloom or sweet fuck-all in return. The only real effort that they have made so far regarding my need to be out was when they released me to attend my Father-in-law's funeral back in March, but even then they made a complete hash of the release process and for me they spoiled what should have been a special occasion.
And now there's one more item for the bucket-list... I want an apology from Ward Sister Carol. She had no right to threaten me with removal from the ambulatory care program, that decision is made at consultant level.
There will be no more Mr. Nice Guy. My mercury's rising!
UPDATE:
I attended again on Wednesday. Staff Nurse Kelly, who I hadn't seen since Friday, called me over to do my observations. The first thing she asked me was "Did you get to see that Sun thing on Monday, the one where you were going to take pictures?" Proof indeed that I had mentioned wanting to be at home on Monday, and had explained what I would be doing.
Carol, how big a slice of Humble Pie shall I cut for you? I continue to await your apology.
