Yes, I know I’ve said in my previous post “Lost for Words” how I dislike the ‘fight’ and ‘battle’ analogies but unfortunately as I start typing this new post in the wee small hours of the morning, I can’t think a more appropriate title.
Last Friday I popped into the hospital day unit to have my blood taken, to make sure I was fit enough – at least from a blood count point of view – to continue with chemotherapy.
Later that afternoon I received a call from one of the nurses asking whether I wanted to continue at the full dosage or reduce it, given my body’s rather spectacularly unexpected reaction to the toxicity of the drugs first time around.
My answer was an easy one.
Yes, I’d like to continue at full strength.
I really do want to do whatever it takes to get rid of these horrid cancer cells, wherever they’re hiding. And, if I do suffer bad side effects again, at least I know much better what to look out for and when to ask for help.
Yesterday morning, just before nine, I rang the department to check the results.
I have to admit I was quietly delighted to hear the nurse describe my blood results as “amazing”. That’s not a word I’ve ever expected to hear in connection with my blood! More importantly, it meant I was all set for Round 2 on Tuesday morning.
Then, at around 11 o’clock, the NHS communications system sprang gloriously into action…
- 11:00am — Text message reminding me of my oncology outpatient appointment on 3 August at 2.40pm
- 11:26am — Email informing me that my oncology outpatient appointment on 3 August at 2.40pm had been cancelled and that, should my clinician decide I needed another appointment, I would be notified
- 11:29am — Another text reminding me of… my oncology outpatient appointment on 3 August at 2.40pm
- 11:33am — Email informing me that a telephone appointment had been arranged for Wednesday 29 July at 12.20pm
- 12:06pm — Another email telling me that Maidstone and Tunbridge Wells NHS Trust had connected my Patients Know Best (PKB) record to a new team, helpfully explaining what PKB is and suggesting I visit their website to learn more
- 1:07pm — Yet another email, this time through PKB, confirming that my telephone appointment on Wednesday at 12.20pm had been booked
This morning, just after 4:30am (yes, I was up and about that early), I checked the NHS App.
It confidently informed me that I had zero upcoming hospital or specialist appointments.
Just beneath that, however, was the wonderfully reassuring disclaimer:
“Not all appointments may show in the NHS App. If you cannot find what you need, contact your healthcare provider.”
Well… that’s helpful.
I’ve explored every menu I can find, but there’s nothing else there. There are links to other NHS systems, each containing different snippets of information, but the app itself only seems to know about some appointments, some referrals and some letters.
Then, at 5.48am, just when I thought the communications saga had finally run its course, another notification arrived from the NHS App.
Apparently my “Hospital and Specialist Doctors Inbox” had moved to a new location within the app.
I dutifully opened it.
There, waiting for me, were the very same two letters that had already arrived by email yesterday.
At least now I know where they live.
I can’t help wondering how people who are less confident with technology cope with such a barrage of messages, reminders, cancellations and contradictory information arriving from so many different directions. The NHS does an incredible job looking after us medically, but sometimes its various IT systems seem to be engaged in a conversation with each other that nobody else has been invited to.
As for me, I was awake ridiculously early this morning. I’m not entirely sure whether it was apprehension about the day ahead, the steroids I’d started taking again yesterday, or simply a combination of the two.
Either way, there didn’t seem much point trying to get back to sleep 🤷♀️
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