It was my second dex night of the week (just 10mg a time) and followed the usual pattern these days - get to bed at pretty much usual time but wake up and get up early because you just know there's no way of getting back to sleep. So, at about 6:30 I got up to a beautiful rosy glow of a sunrise with trees rising through the remains of ground frost and fog:
There are some compensations for the problems of dex, and seeing early mornings that I usually miss is one of them.
Back to Springfield today for another four-weekly set of bloods to be taken, so the usual nervous week lies ahead, waiting for the full results to come through. Back again on the 10th for Zometa and the next pack of meds. Must remember to tell them (again) that I can get Omeprazole from the GP and don't need it from Springfield. That will knock a tiny bit off the bill that goes to AXA.
Had a chat with the nurse about the Parkinson's thing, strong agreement that the best plan is to self-pay a first consultation and then be in a better place to decide between NHS and private. Ideally I'd like a consultant who works at both Springfield and Broomfield (Chelmsford NHS) as my haematologist Dr.Ch does. There appear to be three neurologists who fit the bill and claim specialist interest in Parkinson's, although the information online about one of them is not consistent. So call it two and a half. I'm advised online to get someone who is an MDS (Movement Disorder Specialist) - I found a website listing them and there are only six in the UK, none of them nearer than London, so I'm forgetting that advice. Have also been recommended to a "top man" but he works in London only and the last thing I need at this time is London trips that could be avoided, so I don't think I'll be bothering him. He's not on the MDS list anyway!
Also had my fifth COVID swab test at Springfield and have religiously logged it on the CoVID Symptom Tracker app. I'm well used to it by now and it really isn't all that unpleasant. Seriously...
Up early this morning (by my standards, and helped by yesterday being a dex day) because we have plumber coming to investigate a leak possibly caused by the nly drain cleaner I know that actually works. Sometimes, unfortunately, a little too well...
Outside, a Herman Melville day. That's a damp,drizzly November. This one has a light frost as well:
From the greatest novel ever written:
“Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires a strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people's hats off - then, I account it high time to get to sea as soon as I can.”
Had my face-to-face appointment with Dr.Ku (GP) this morning, Sue was also present at his request.. Doc in full PPE. We went through the history of the possible Parkinson's again, and he did a variety of tests. He dismisses the possibility of Essential Tremor but thinks I might have early and/or mild Parkinson's. So he is doing a referral to a neurologist - with the NHS this will take approx 45 weeks (!) plus two weeks to get the letter done. Why that couldn't be done next day, if not that afternoon, is a mystery to me.
I have several options here. (1) Go the NHS route. There's no big rush, unless there is a rapid deterioration at some point over the next year, and it's nothing I can't live with. Cost is zero. (2) Start another claim with AXA HEALTH - would move things along much quicker but would cost me another chunk of No Claims Discount and put the monthly premium up quite a bit. Will need to work out just how much - and as is common with NCDs these days, it takes several years to work that increase off. And frankly I feel that AXA is doing enough for me already, don't want to become a problem customer. So not at the moment, but keeping in reserve in case I get that rapid deterioration. (3) Pay for a first consultation with a neurologist myself. If he/she says it's not Parkinson's or Essential Tremor, well, I'm not that badly off. If he says it is one or the other I'll have a better idea of which of the first two to go with.
Back to myeloma, or at least one aspect of living with it - did the "long walk" through Tower Gardens, Admiral's Park, and Central Park in Chelmsford, with coffees on an outside table at the Central Park Cafe. That was badly needed after a lack of decent exercise for the last several days.
Dex night tonight...
From The Telegraph, but unattributed:
"research has found that blood cancer increases the risk from coronavirus more than almost any other health condition."
Nice to know...
A little rain this morning but otherwise a much brighter and sunnier day, although very windy. I did the full triangle of local roads in the afternoon - first decent leg-stretch for several days. Gigaclear (fibre broadband people) have at last moved past us - this run of houses has taken days more than I expected. I think I'll take the car out tomorrow and check up on their progress the other side of Leaden Roding (the next village).
Next set of blood tests at Springfield on Thursday 5th, so mind turning again to that week of waiting for the results. And seeing the GP about Parkinson's (?) on Wednesday 4th so will take that opportunity to get results of his last routine blood tests, including PSA. I've never had my health monitored as closely as over the last year or so and there's a part of me that still isn't entirely comfortable with the whole idea.
It was a year yesterday since I came out of hospital after the infection that sent my temperature up. Tempus fugit! I should be glad I've got through a year without picking up another infection, especially the year we've just had!
With painful splits in the ends of my right thumb and first two fingers (a regular consequence of cold weather, nothing to do with myeloma), doing the Pill Organisation Thing this morning was more difficult than usual. The "is it / isn't it Parkinson's?" hand tremor doesn't help either with handling the smaller pills. It definitely interferes with fine motor control now in a way that it didn't a year ago. The whole pill sorting process took a good hour to complete.
The Laxido did its work, even if after a rather longer wait than usual. It was a good decision last night not to take another dose...
As for COVID and the new national lockdown, it isn't going to make much difference to me but I think Sue will be rather more affected. Already the government is leaking warnings about it being extended into December...
I'm lucky in that my cancer was diagnosed before we'd ever heard of SARS-COV-2 and my treatment is continuing without any interference. Private health insurance with "Comprehensive Cancer Cover" of course helps with that. All the stories of delayed cancer diagnoses (or worse) because GP surgeries and hospitals have effectively shut themselves off from anything but COVID are awful.
At least the Parkinson's - if it does turn out to be real - is unlikely to be urgent so I'll be able to wait for NHS treatment - at least, that's my plan because I don't want to start another private claim while in the middle of a rather expensive one which will carry on for the rest of my life - the only time I've ever come out ahead of an insurance company. On top of that, I don't think we could afford the loss of more No Claims Discount!
