30/11/20 Neurological complications and parking

Had a phone call from Springfield - the neurologist I was due to see tomorrow is unwell (not COVID-19!) and has cancelled all future appointments. I understand he was pretty much half-retired anyway. So the appointment is changed by just one day to Wednesday and will be with a different neurologist who also works at both Springfield and Broomfield. No big deal really from my POV.

Today's post included a £100 parking ticket for Springfield on the 5th November, when I was in for bloods to be taken. I was parked in a disabled bay with my blue badge showing. What I don't recall 100% is whether the machine that you put your registration number into was working or whether the system was switched off that day - as it has been for most of the time during lockdowns etc.. Anyway I did what we've been told to do and 'phoned the Oncology Centre and they will sort it out. I now have to send them the original ticket - apparently emailing a scan wouldn't be enough.

29/11/20 Better

Feeling a lot more human today. I did get an early night - if only by half an hour or so - and then couldn't get to sleep for the best part of an hour and a half, not least because one of our cats decided she  needed some company. The sore jaw is still there, but less so, and my tongue seems to have adapted to the chipped tooth. Going back to maximum paracetamol is helping, I'm sure.

We thought about going somewhere for a walk, but it's another damp grey November day and less than inspiring so we ended up doing the local triangle instead. Heinz Cream of Tomato Soup with some grated cheddar in it for lunch afterwards - that kind of day.

28/11/20 (2) Low

Not a very good day today. I spent most of the day feeling as low as I've felt since the day of the infection last year (but temperature is OK today and no other indications of an infection). The sore jaw - or whatever it is - was bad this morning and made breakfast difficult. I've put myself on maximum paracetamol and that seems to be helping. Made butter and did the cat drinking fountain this morning and then just collapsed in my chair downstairs. Couldn't find the energy to get out even for a short local walk, or even to turn my phone on. Improving now (mid afternoon) enough to start working on our Tax Returns. Inevitably there's an immediate problem - the login details I have for Sue aren't working. Will sort that out later as she's doing something musical online at the moment.

Not happy about having to go another six days before seeing a dentist, but there's nothing to be done about that.

I might even give myself an early night (by my standards) and try to sleep this bad phase off. Although I've had more than enough sleep already during the day...

28/11/20 Zometa and teeth

I've emailed my haematologist Dr.Ch to forewarn him about possible problems with Zometa and the problem in my right jaw and the chipped tooth. I'll email again after the dental appointment on December 4th, if the dentist has anything useful to say.

Nothing much else today - we had a bit of exercise (and coffees) in Oaklands Park. Poached eggs on toast for lunch, and the usual Friday dinner of salmon fillets (with crispy blowtorched skin) served with crushed potatoes and peas, this time with sweet chilli sauce rather than the usual Hollandaise. Cooking is one of the things that keeps me sane these days, although I'm not doing as much complicated and experimental stuff as I did a year or three ago, We had some pasta sauce in yesterday's Tesco delivery, so maybe I should get the pasta machine out and make my own tagliatelli to go with that...

27/11/20 Chipped tooth and dex

Dentist appointment for that chipped tooth on December 4th. I've had some soreness around the angle of the jaw on that side for a couple of weeks, and bearing in mind the possible dental effects of bisphosphonates (Zometa) I'm a little concerned that there may be something else going on. 

Woke up a bit early after the scond dex night of the week in that familiar dex way - lost maybe an hour and a half of sleep. So any thoughts about the sleeplessness fading away have to be cancelled.

26/11/20 Chipped tooth and kitchen cupboard

Did the "long walk" through Tower Gardens, Admiral's Park, and Central Park to the cafe for coffee.

Chipped a tooth during dinner, although I didn't notice a thing at the time. Will 'phone dentist tomorrow - not hoping for a quick appointment or an appointment at all, I just want to get it logged in the system and maybe some practical advice. Have been exploring DIY dentistry solutions online...

As for the problem with the slide-out kitchen cupboard that I couldn't fix? A good night's sleep gave me an idea and it's now back to perfect working order. No need to call in the helpful neighbour.

None of that has anything to do with myeloma, but life goes on. It's just life with myeloma instead of life before myeloma. And at this stage, apart from remembering to take the tablets and dealing with a few relatively minor side-effects, it's not TBH all that different. I just know that sooner or later it's going to get (a lot) worse, so I need to make the best of the remission.

25/11/20 Pills sorted out

I knew something was wrong with Pill Organisation last Sunday. Today (Wednesday) is a dex day and I would usually take my 10mg after breakfast. It took me until tea to realise that I hadn't taken them because they weren't in the red pill box. The reason, I think, is simply because they came in packaging I haven't had before and I probably thought they were just another box of amitriptyline. All sorted out now, but a welcome reminder not to take these things too casually even after well over a year.

Collected new supplies of Xarelto / Rivaroxaban from the GP surgery, and some more Senna as well. I've survived two days without Xarelto, and all is back in proper order today. Tried for a bit of a walk in Writtle after collecting the pills, but frustrated by light rain. We need a trip out to somewhere for a good long one tomorrow, weather permitting.

24/11/20 Frosty morning, and kidney cancer (not mine!)

 A cold and frosty November morning yesterday:

Bad enough to keep me inside until a quick Peppers Green Lane walk after lunch - followed by the now-inevitable post-exercise "fatigue" snooze. Then we had a kitchen crisis just as I was starting dinner - we have a complicated corner unit with sliding trays, and somehow the lower one fell off whatever is supposed to hold it in place. Getting it back beats me, and we have called in reinforcements (a helpful neighbour) for later in the week. I have a feeling it will need almost complete disassembly before it can be put together again.

I've been reflecting on the experience of an acquaintance who has recently had a brush with kidney cancer. Despite all we hear about cancer services being abandoned because of COVID-19, she was diagnosed and treated (surgery) within the space of a few months. She's lost half of one kidney, but they saved the other half. The surgery, and the recovery period, was tougher than advertised (not unusual, I think) but she has now been given the all-clear. No sign of cancer or the tumour to be found. 

An excellent result, and I am of course very pleased for her. All over and done with in a few months, back to normal life (insofar as there is such a thing these days). One and a half kidneys is very nearly as good as two. That's the advantage of solid cancers - get them early enough and you have a good chance of getting rid of them altogether before they go metastatic and popping up all over the place. It's very different with a blood cancer like myeloma - there is just no way of getting rid of every trace of the cancer. Even the very powerful chemo drugs used before stem cell transplant (e.g. melphalan) always leave a few bad plasma cells behind, or some may make it through harvesting and then get returned to you later. That's why transplant is always followed by relapse, sooner or later. It's never 100%.

Being stuck with an incurable cancer that I know is going to be with me for life, even if in remission for as much of that time as possible, must be very different from being given the "all-clear" from a curable solid cancer. I don't have to worry about whether mine will come back again - I know it will, sooner or later. My acquaintance must have to live with a constant fear that it, or maybe another cancer, will come back. It's the Sword of Damocles. Which is the better - the chance of a bad outcome or the certainty of one? I really don't know.

23/11/20 Great Notley, and fatigue

Not a lot to report. Pill Organisation seemed to go rather quicker than usual, not sure why. Went to Great Notley Country Park for the permitted exercise, and had another sleepy collapse when we got back. After a few better weeks, the "fatigue", if I can call it that, seems to be back. The S/F/L cocktail was if anything, a little more effective than I might have wished...

21/11/20 Out of Xarelto

A slightly better day today, did the local triangle walk in the afternoon. Pill management has gone slightly wrong - ran out of Xarelto/Rivaroxaban (blood thinner) and can't get more until probably Tuesday. Not too much to worry about, I think, but need to work out a way to get them back in sync with the other GP pills.

Last night's Senna/Fybogel/Laxido cocktail worked well. Just the Senna tonight, I think.

20/11/20 (3) House Stark

Did an extended version of the "short walk" in Central Park after the Tesco delivery, including (small) sausage rolls for lunch with our coffees from the Cafe. There go the more physical health benefits...

Coldest day of the year so far. Hat, coat, scarf, gloves. Winter Is Coming.

Fybogel tonight. Maybe Laxido as well.

20/11/20 (2) Mental Health

Slept well for a dex night, right through to 07:45. Got up to see a sharp frost outside but it was gone within an hour or so. Alexa tells me it's 3C outside.

Tesco delivery due between 10 and 11 - we may go somewhere for the usual "exercise" between that and backgammon time. Got to keep moving, and it's good for what we now have to call "mental health"...

We have a computer disaster downstairs. Must go fix. Or try to... Delayed breakfast, I think.

20/11/20 Eggs and Parkinson's

Another grey wet start to yesterday, and a lot colder than recently, so we decided Maldon was out of the question. Things improved in the afternoon, so I did the local Peppers Green Lane walk and went down to the end of the lane to make it a bit longer. No fatigue collapse afterwards, perhaps the result of two dex mornings.

To return to the eternal topic, the constipation issue has been good since the last crisis but I was tempted to add a Fybogel to the daily Senna yesterday evening but decided to give it one more day. TBH I hate every day being dominated by this and I'd give a lot to find a regime that gave a consistent result day after day. But I probably didn't help myself with three parts of a five-egg mushroom and asparagus omelette a couple of nights ago. A boiled egg for breakfast twice a week and a fried one on Sundays plus occasional poached or scrambled eggs for lunch don't seem to have too much of a "binding" effect but eggs for dinner seems to be a bit different. As far as I can tell, most myeloma drugs can cause constipation but I think dex is the main culprit for me. Unfortunate, as I can see a large pile of dex pills in my future...

Today's post included a copy of Dr.Ch's monthly letters to my GP Dr.Ku. After saying I've had "a difficult couple of years" he suggests that the possible Parkinson's symptoms may be caused by Lenalidomide. That ignores the fact that most if not all began way before I started taking Lenalidomide or even its close relative Thalidomide. Anyway, looking forward to the neurologist appointment on 1st December when I hope to get some clear answers about this. I don't want to have a Parkinson's diagnosis on top of the Myeloma, and having one would mean some difficult decisions about how I pay for treatment. But that's a problem for another day.

19/11/20 Dex and sea air

 Yesterday (Wed) and today (Thurs) are my two dex days of the week. The pattern is now well-established - I get to bed at my usual time of 02:00 or maybe a bit later, sleep uninterrupted for four or maybe four and a half hours, then get up because going back to sleep is just not going to happen. I'm no longer awae and on the computer at 4 or 5 am!

Hoping to go somewhere for a good, long, and preferably different, walk today. Just what you need to keep the myeloma at bay, not to mention an excellent sausage roll for lunch. There's a small issue in that the new shielding guidelines for the vulnerable and extremely vulnerable (that covers both of us) encourage exercise outside while also saying we should not travel unnecessarily to find it. Does Maldon count? A quick look at Google Maps suggests that it is the nearest bit of sea/estuary for that healthy bracing sea air...

18/11/20 Southern Country Park

No sign at all of the right foot problem today. All very strange, but I think I can be sure it was nothing to do with the myeloma. Unless, perhaps, it happens again.

Full results for the November blood tests are now in - all Free Light Chain numbers in normal range, so another very good set of results.

Went into the GP surgery this morning to give up even  more blood for thyroid and ferritin test booked for 09:20. I arrived a few minutes early and then had to sit in the waiting room - masked up and with a changing set of three or four other people - for a good twenty-five minutes before being called in. That's not good. There's yellow & black stripe tape on the floor as a guide to proper distancing, but I saw only one person pay any attention to it. One (other) person took his mask off to talk to a receptionist and she didn't tell him to put it back on. There was a perspex screen between them, but with a large opening at the bottom to pass things through.

After a late breakfast and with the bright early morning starting to fade, we went to Southern Country Park on the edge of Bishop's Stortford. Not the most attractive one but a good path and enough of a walk. Free parking, always a positive point. It's also a bit hilly, and I had one of my collapses when we got home. Out like a light for the best part of an hour. It's been a while since that happened quite so badly.

17/11/20 (3)

The right foot problem has gradually faded through the day and is now (21:18) barely noticeable. That may have something to do with going back to maximum paracetamol dose today and suggests that it was muscle / soft tissue related rather than PN, although I've never known a soft tissue problem appear out of the blue in the middle of the night before. Anyway, it was good enough for a Pepper's Green Lane walk in the afternoon. Now just hoping it won't come back overnight.

Tomorrow morning I have blood tests for thyroid and ferritin. Not sure why the GP has asked for ferritin as he had it in the last set of GP bloods just a week or three ago (a little high). The form isn't entirely clear as to whether it's supposed to be fasting or not, so I've been googling and both turn out to be a lot more complicated than one might think. I'd better leave  breakfast until after I get back, to be on the safe side.

17/11/20 (2) Neurology

I now have an appointment with the top neurology man at Springfield & Broomfield for my possible early Parkinson's: 14:00 on 1st December. If things work out that it seems desirable to go private with him, I've calculated the cost of losing a year's No Claims Discount - broadly, it's equivalent to two or three live music tickets a month. As I'm not going to any live music at the moment and will almost certainly cut down a lot even when things get back to "normal", that should be affordable. The trouble is that it would take three claim-free years to claw my way back to the NCD I'm on at the moment, and with my myeloma claim set to last as long as I live, that isn't going to happen!

17/11/20 Strange foot pain

My back got through the night remarkably well, but halfway through the night I woke with a new pain in my right foot - bad enough to interfere with sleep for the rest of the night. The feeling is that it's something muscular or etc. - but the obvious concern is that it's the start of the dreaded Peripheral Neuropathy - a possible side-effect of almost everything I take for myeloma.

Right now, unless this improves rapidly, any idea of getting out for a walk is out of the question.

16/11/20 Thermometers, glasses, face-masks

Ever since the start of my myeloma I've been using a digital in-ear thermometer every morning - in theory. In practice I sometimes forget, it's fiddly thing to use especially if I've already put the hearing aids in, and you have to put a new little clear plastic cap on the sensor every time - which means buying a few boxes of new ones every couple of months. No doubt it's more accurate than anything else, but it's also something of a pain. So I've now got an infra-red forehead thermometer which is very quick and easy and lives under my #1  computer monitor so it's always ready to hand. The in-ear thermometer is now reduced to a double-check role if the other one shows a temperature approaching the limit in either direction.

A couple of weeks ago I accidentally damaged my rimless glasses, leaving the right-hand side piece at about 90 degrees to where it should be. I made an appointment and took them into Specsavers where one of their guys very efficiently put things right. But a few days ago the left hand fixing became loose, leaving the lenses sitting wrong and the glasses falling off far too easily. So I made another appointment with Specsavers for today, and they fixed this problem as well, along with a warning that next time would probably mean sending them away for a few days. All OK - but the problem was that you cant go into any kind of shop these days without a facemask on. And there is something about facemasks that nobody seems to talk about - if you also use your ears for hearing aids and glasses, it's the easiest thing in the world to flip a hearing aid out while positioning and adjusting the ear loops. That's what happened to my left one as I was putting the mask on before going into Specsavers. Couldn't find it anywhere - must have gone down between the seats but my big fear was that it had lodged somewhere on my clothes and had fallen off outside the car. They are insured, but...

Got home, found a good torch, and started contorting my spine into shapes that neither God nor Darwin had anticipated in order to look into the near-inaccessible spaces under the seats. Seeing something down there is of course not the same as being able to get it out undamaged. But I did recover it eventually. Whether my back will recover is something I'll find out about in the morning. Lots of Deep Heat before then, I think.

Also collected a copy of the Parkinson's referral letter from the GP surgery, so tomorrow I'll start 'phoning neurologist's secretaries in search of an appointment.

Managed to fit a short walk in between finding the hearing aid (much relief!) and the regular online backgammon at 17:00. Went along the A1060 to the Four Wantz (that's Essex for a crossroads) then down Ongar Road as far as Grays, and back again. For detailed maps of the Parish, click HERE.

15/11/20 FLCs pending

Another wet morning while we were having breakfast and Pill Organising but things cleared up and the sun even came out mid-day, so I did the walk to Peppers Green Lane. A lot of water on the road in places where we don't usually get it, resulting in a thoroughly soaked pair of shoes.

I don't think I've mentioned the most recent set of blood test results, which came in on Thursday, the usual seven days after taking the blood. All good and paraproteins still at undetectable, but the three Free Light Chain numbers given as "pending". Will try again for them on Monday or Tuesday.

I'm sure that's all perfectly clear now...

Update 16:00 - it's raining again! This video shows what it's like at The Hare in Roxwell (pub/restaurant about four miles towards Chelmsford). Full screen (button at bottom right) is best for this

14/11/20 Wet

Wet wet wet again, no chance of getting out. Will have to do a bit on my under-desk "bicycle" thing instead.

Made a batch of spreadable butter this morning, now about to face the paperwork pile...

13/11/20 Central Park Cafe and parking.

Morning started rainy but improved later so we went for a extended version of the "short walk" to  the Central Park Cafe for coffees. The quite large car park we use for this route has just one disabled space and luckily it was available, meaning we didn't have to pay the £5 charge that would have applied otherwise. It really needs another two or three disabled spaces, and I feel a letter to the Council may be coming up.

Nothing else to report today - including no driving incidents...

12/11/20 Marks Hall Arboretum and driving

Went to Marks Hall Arboretum in the hope of a good walk and some autumn colours. Leaf fall still far from over, lots of yellow-gold but not much red around. Probably too late for that to develop now.

Not a good driving day for me. Started by going out with the wrong glasses on - had to go back to change them. Then, on the way back there's what's always a tricky right turn onto a dual carriageway. There was a combination of bright low sun affecting visibility, someone stopped to give way on his "outside" lane (it is marked!), someone else coming up his "inside" lane that I just didn't see (perhaps blocked at the critical moment by the car giving way, and - of all unlikely things - a cyclist riding towards me on the wrong carriageway. I made my turn and then crossed into the inside lane too soon, getting some angry horn and sharp braking from the car I hadn't seen. And should have seen, or waited for. My mistake, no question about it. Then, with my mind still on that, I took a wrong turn off a roundabout and nearly went wrong again on another one. Despite the sat-nav. Some thinking is needed - maybe I need to remember that at 72 I'm older than I was and need to adjust my driving style a bit. And there is the disease and the meds to consider. It was a dex morning and I've noticed recently that the sleeplessness is much better than it was but there's an element of "dex mania" taking its place. Perhaps that played a part.

This is what to avoid!

11/11/20 (3) Good Easter ford

 Here's a little video from yesterday at the ford on the River Can just outside Good Easter:

My walker was parked a  bit out of shot on the left!

11/11/20 (2) Pressure washer & dex mania

Didn't do a lot this morning (apart from take my first 10mg of dex for the week) but Sue went into town and confirmed that all the car washes are closed under the current lockdown. So after lunch I got the big Karcher pressure washer out and we did the cars by hand. Took a while to remember quite how the pressure washer worked for the detergent stage, but got there in the end. Also - because some hose fittings got thrown out in the Great Clearout that perhaps we should have kept, I had to cannibalise some bits from another hose reel in order to connect the washer up to the outside tap...

After that, and before I lost the energy (or perhaps with a touch of dex mania), I took Walter for a walk along to the post at the top of Marks Hall Lane. Got involved in a conversation with a couple of residents (socially distanced, of course) and had to explain what Gigaclear are doing all over again... More importantly, the tyres remained OK and I've passed both Trionic walkers fit for longer expeditions, as long as they stay OK overnight - thinking of the autumn colours at Marks Hall Arboretum tomorrow.

11/11/20 Zometa and white van

 Had a very pleasant walk down to the Good Easter ford yesterday morning

We both really like it down there - it's very peaceful and tranquil and good for healing the soul. Very much a favourite place.

After getting home from that, off to Springfield for my four-weekly Zometa drip. The appointment was for 14:00 and I was bang on time with my mandatory face-mask on. 75 minutes later, one of the nurses started getting the canula in. The waiting time has gradually got worse from almost nothing before COVID to this. I'm not sure whether it's the extra time needed for anti-COVID precautions between each patient, or increasing pressure from NHS patients diverted into the private system or what, but the waiting time just gets longer and longer. Anyway, we got the drip done and I collected my stack of meds for the next cycle of maintenance.

On the way back home, a big white van had been close on my tail for about three miles. Approaching home I indicated right (18:02:23 0n the video) and started slowing gently before turning into our drive. He also indicated right within a second or two and overtook (while I was still indicating right), then had to get back to the proper side of the road rather quickly because of oncoming traffic. My thoughts about his driving are recorded for posterity on the dashcam video... (text lifted from a Facebook post)

That didn't leave me in the best of tempers, and I'm afraid Sue got the short end of it until I calmed down a bit. I'm sorry about that, especially as it was my birthday and she deserved something better.

09/11/20 (2) Waiting...

Had a phone call from the NHS about my Parkinson's referral. I'm now officially on the waiting list, and Broomfield will contact me when an appointment becomes available. That's all I know.

09/11/20 Deja Vu

There was  noting wrong with Walter the Trionic walker when I put him back in the car after Hylands Park, and I left him in there overnight. But yesterday morning when I opened the car to put some other stuff in before leaving for Oaklands Park, I noticed that one of his back tyres was flat. So I heaved him out of the car to go in the garage, and found the other back tyre was flat as well. Hylands is clearly more dangerous than I knew. 

I put Victor the Veloped (off-road walker) in the car instead, and off we went to Oaklands. I parked in one of the disabled slots, Sue went off to get coffees from the cafe, and I started getting Victor out. Only then did I discover that he had a flat back tyre too...

The good side is that I did the walk around the park with just a stick. I've been feeling for a while that it's about time I had a decent walk with a stick rather than a walker, but you can get rather dependent on the extra security and stability of a walker, and it becomes hard to let that go. The problem at Oaklands is more mud than uneven ground, so it was quite a good place for the experiment, and it went well. I must now do more like that and build up the confidence a bit - but remembering that with myeloma-weakened bones a fall and a fracture would not be exactly welcome...

Puncture repairs occupied the afternoon. These small wheels with chunky 12" and 14" tyres aren't that easy to do and really need at least three hands on the tyre levers. I actually had four punctures across three tyres, and removed two small and viciously sharp thorns. Couldn't find a cause for the other two. I threw out the inner tube with two punctures (for some reason the patches refused to stick well) and replaced with a new one, and patched the other two. Now I wait to see if they'll hold air overnight. And I suppose I'd better order up some more spare tubes from Trionic, and another puncture repair kit from Amazon...

Going to Maldon today, and taking Rolly the original Rollator, who's good enough on paved ground and has solid tyres making him puncture-proof! The tyres I repaired yesterday are still holding air OK but I haven't checked the pressures yet and won't entirely trust them until I've had a couple of short local walks first.

08/11/20 Mist and split fingers

 Another misty Essex November morning:

Pill Organisation Day - which will be easier than last week as the thumb and finger splits on my right hand have more-or-less healed. I've been prone to them for years, but wonder if the skin-thinning effect of dexamethasone may be making them worse. I used to take 10C outside as the temperature to start wearing gloves outside but this year's first splits came before  that. Also, the skin on the backs of my hands has been distinctly thin and papery recently but is looking better today. Intensive overnight hand cream is probably helping that.

07/11/20 Hylands Park & coronavirus

Hylands Park today for the customary "exercise" on a remarkably warm and sunny November day. The place was as full of people as we've ever seen it, and not much sign of obeying the "public places" COVID-19 rule about meeting only one person from another household.  People seem to be giving up trying to follow the increasingly confusing rules to the letter, in favour of applying their own version of "common sense" instead. 

06/11/20 (3) Writtle

Had a  good walk today in Writtle - basically a path from the centre of the village (and a free car park!) to the familiar territory of Tower Gardens - a route we did several times back in the e-biking days. Exercise is starting to get back to normal. Otherwise - no  news is good news?

Dr.Ch's secretary 'phoned to give me a time for our 'phone consultation on Monday:1800-ish. Not ideal either for daily online backgammon (usually finishes around then) or for cooking dinner. But if things run according to form, it's likely to be well over an hour late. I have nothing in particular to report, so I'll use the opportunity to get some tips about a good Springfield/Broomfield neurologist to get in touch with.

06/11/20 (2) Dex and sunrise

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.

06/11/20 Bloods, Parkinson's choices, and swab test

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...

05/11/20 Damp, drizzly dex morning

 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.”

04/11/20 (Parkinson's meeting with GP)

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...

03/11/20 Coronavirus risk

 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...

02/11/20 Blood tests and an anniversary

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!

01/11/20 Finger splits and pill organisation

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!