Update 2

It’s not just what you learn, it’s sometimes the way that you learn it

There’s a relatively new service from the nhs. it’s an app through which you can access your own health records including test results and doctor’s correspondence about your health status. Helpfully the site points out that your record may include something you’ve not yet discussed with your doctor.

I’d had a series of tests relating to a back problem but after two weeks I’d heard nothing about the results so I rang the surgery and asked my doctor if he could could chase up the consultant to which he agreed. When he rang me back later he told me that he’d been asked to prescribe some drugs and that they’d be ready for collection that afternoon. Later  the consultant himself rang inviting me to a face to face appointment in two days time, he also asked what the doctor had told me. I explained that he’d said nothing other than to tell me to collect the drugs.

When I woke at 0625 the next morning it occurred to me that if he’d spoken to the consultant he would probably have made a note of what was said and that such a note would probably be in my online record. I opened the app and sure enough his note was there, revealing in shocking clarity that my prognosis “has a  very poor outcome and was likely a Glioblastoma”. A leap into Google revealed that a Glioblastoma was usually fatal within 3/4 months of diagnosis. My future, or rather my lack of it was suddenly looking rather more dramatic than I’d anticipated.

Yesterday, the recollection of that shocking moment came back to me. At around 3.15 a third doctor called me. ‘I’m Dr Fox (no that one) I’m your Palliative Care doctor”. I’d already heard from Dr Wilson who let me know he’d be my main point of contact with the surgery, and my neighbour Stuart who is a GP and his wife who’s a nurse have both popped in and offered to be as helpful as possible. But this chap was something new - without any preamble he stomped right into his pitch: “We need you to have some extra phials of drugs to be kept at your home including things like Morphine which the District Nurse will need to be instantly available. You can get them from the Pharmacy in a couple of days and can you go to the surgery to pick up your drug plan tomorrow?”

This sort of talk came as another quite brutal shock. All previous conversations had been relaxed reference to weeks of decline followed by my inevitable demise. Now Dr Fox was up there on his death watch, raring to get going with it all and I’m not feeling terribly comfortable with his presentation style. In an attempt to be seen in a more positive light Dr Fox blurted out “Because of your diagnosis, you’ll be receiving gold care treatment”. Now that sounded promising so I pushed a little further: “Will it mean I can avoid the one hour wait before your reception team get around to answering my calls to the Surgery? The weight of his hesitation was palpable. it begins to look like his gold care, might well be be much the same as any other care.

It’s interesting how the detail from previous conversations can re-emerge more meaningfully later. After I put the phone down to Dr Fox I recalled Monday’s meeting with Michelle: she’d talked about a time when I’ll no longer be able to swallow tablets so that my upcoming drug regime will then have to be by injection, but I’d not absorbed the significance. The picture is now becoming clearer.

To add to my weakened left arm, my walking is becoming difficult and last night I accepted a lift to a local restaurant which has always been an easy stroll. I’m advised not to waste energy, or more precisely to conserve it for the more important tasks in life such as lifting a glass to my lips. On which theme, If you are ever in Cheltenham I have no hesitation in commending ‘Prithvi’ as the most stylish, imaginative and hospitable restaurant in town.

Thursday afternoon saw our first meeting with a District Nurse. Gillian is a straight talking fountain of nursing knowledge. She explained very clearly the processes through which we will be moving. The likely need for a hospital bed in my room, the kind of drug regime that will smooth my final days and the support system for Margaret. I am reassured and beginning to sense that these folk really do know what they’re about. The management of the nhs and especially its gatekeeping operations are in a mess, but when it comes to the actual care, I’ve been impressed. I’ve been given a selection of leaflets covering topics including ‘Coping with Dying’, ‘Preparing for end stage Dementia’ and ‘Looking after someone at the end of their life’. It doesn’t get more in your face than this but I’m holding on to Gillian’s oft repeated phrase “We’re not there yet”.

This morning’s by election results have lifted my spirits slightly. Honiton and Tiverton wasn’t just a win, it was the largest majority ever to be eliminated in a by election - it was a huge rebuff to the Conservative Party and the Wakefield result delivered a large enough swing to put Labour into a majority government. Of course they fail to give any guidance as to what might happen at the next General Election, but they do give us a pointer to how millions of folk are responding to the government’s ardent embrace of failure. 

I winced hearing the simpleton Dominic Raab (I hadn’t understood …how reliant we are on the Dover Calais route) trying to defend the government this morning: he said they’d had put their policies out there and he thought the people would respond positively. Nick Robinson pointed out that they had just responded in two fairly clear election results  and their view seemed pretty negative.

When a significant part of the monarchist crowd outside of St Paul’s booed  Boris Johnson I felt something was changing. Now we see that same reaction spreading. The government is not hiring 60,000 more police, it’s not even replacing the 60,000 that Theresa May scrapped,  I see no sign of another 50,000 nurses let alone those 40  new hospitals. My friends in the likes of Blyth Valley have seen little evidence of any ‘levelling up’ and now I read that even Johnson’s former Brexit negotiator Lord Frost is appealing to the Prime Minister to stop saying things that  are “factually incorrect” - he’s still insisting that employment is higher than before the pandemic when in fact it is 598,000 lower. Former leaders Michael Howard and William Hague have said that Johnson’s time in the sun is up. 

The Tory worms are now turning and the next few days will see more of them begin to put distance between them and their erstwhile hero. The ”greased piglet”  has debased everything he’s touched, our standards of public life, our respect for judges and the law of the land, our expectations of fair play, our assumption that common decency still matters and above all, that our leader should set a high standard of behaviour for the rest of us to follow. He undervalues human rights and aided by the naturally divisive instincts of Home Secretary Pritti Patel, seeks to drive an ever deeper racial wedge into the country. I love my country but Johnson seems to want me to prove it by joining him in demeaning most other countries.

As the UK voted on June 23rd 2016 I was visiting the Normandy landing beaches - a grim reminder of what happens when neighbouring nations fail to hang together. The following morning as the awfulness of the result sank in, I made three predictions: 1. That the reunification of Ireland will precede the independence of Scotland, 2. That the UK will lose what for a century has been a significant car manufacturing industry and 3. That the Conservative Party will become a broken political force. I’m not changing my bet.