01/12/21 Ongar, positive COVID test (not mine!)

Took my car into the local garage yesterday morning for minor bodywork repairs and a check-up underneath after a few bad pothole incidents and my attempt at kerb-climbing. Then (in Sue's car) we went to Ongar for a walk, some lunch, and a bit of shopping. The walk got me to very nearly double my Activity Target, so that goes a little way to making up for the last couple of lazy days.

We got rid of the bottles of Camp Coffee by leaving them in the "food bank" at the entrance to the church - a fine old one with some parts dating back to the 11th  century:

Hope someone enjoys the "coffee".

All that walking up and down Ongar High Street plus a couple of diversions left me thoroughly exhausted when we got home - spent too much time asleep again, both before dinner and after. As usual of course, now we'/re into the small hours, I'm feeling more awake than I have done all day. The curse of my life - I really should have picked a career where working hours fitted me better.

And now for the bad news. Sue went to a wind band gathering last Sunday, The organisers took all reasonable precautions about Lateral Flow tests beforehand and etc. . However, one of the attendees has since tested positive, and Sue was sitting not all that far away from him at the lunch interval. We await developments with some trepidation (on my part at least). He will be doing a PCR test, and Sue will be doing LFTs daily. I will be doing my best - insofar as it is possible while living in the same house - to keep well out of her way and to keep my distance. I don't want to, but I have to regard her as a potential source of infection for a week or so. Of course I have my good result from the antibody test a week or two ago to rely on - it suggests that I have enough antibodies to fight off a modest infection - but nobody really knows how long those antibodies hang around in the bloodstream ready to go. So it's going to be a nervous week or so with daily LFTs for both of us, I think. 

30/11/21 Pothole repairs

Another quiet (and cold) day - didn't do much except go out to M&S to get an Indian meal for myself as Sue was out for lunch and didn't need an evening meal. Nevertheless, somehow met my Activity Target. 

The car goes into the local garage later this morning for a couple of minor bodywork jobs and to check out tracking etc. underneath after potholes and unintentional kerb-climbing. That means no boules at Tower, even if the temperature is as much improved as forecast. OTOH, it'll be a good day for another Furosemide. And that's about it for tonight.

29/11/21

Nothing much new tonight. I'm cancelling all my boules while the temperatures remain around freezing, I need time for my hands to recover. Here's the right one:

Lots of little lesions that can be quite painful and also make the fingers rather stiff. Cotton gloves and lots of hand cream again tonight. That means I leave the Oura Ring off overnight, otherwise it gets clagged up with O'Keefe's Working Hands and needs to be cleaned up afterwards. No real problem but it probably wouldn't get good readings and I have other sensors monitoring sleep patterns so an occasional night off is no big problem.

The main thing is to be OK for the next Winter League match at Wethersfield on Sunday 5th December. Because that's a team I have to be there if at all possible.

Didn't take a Furosemide yesterday, and no sign of the weight loss returning yet. I can have one for the next few mornings if needed as I won't have boules trips to take into account.

Used the time gained  to prep an 8-hour slow cooker meal for the evening - chicken thighs in red wine - and to do some work on the phone system as we move to VoIP - I need a rather unusual cable or an RJ45 gender changer which isn't easy to find at a reasonable price. One step at a time, there's quite a lot of trial and error needed here.

That's all for now. Back to my recording of Doctor Who...

27/11/21 (2) Zometa

Another wet cold and damp day, made worse by a viciously cutting wind. After breakfast at The Hare we really did intend a short bracing walk in Tower Gardens, but just the short distance from the door to the car was enough for a change of mind. So still a bit short of my Activity Target for the day.

No lunch, venison burgers with sweet potato mash for dinner.

Hands & splits improving after a day almost entirely out of the cold. Took a Furosemide when we got back from breakfast, and ankle oedema looks good pre-shower.

Several posts on the facebook group about people having regular Zometa (usually at 12-week intervals) well beyond two years. This goes against my understanding that there is little if anything to be gained by going beyond 24/2yrs. There's no obvious pattern to the replies to my question, all you can say is that different consultants take different views.

Forecast is bad for the morning so will probably sacrifice Ongar Boules in favour of getting a couple of long-delayed jobs done in the house while Sue is off at a wind band day. Monday at Epping will have to go as well because the car will be in the garage after a couple of bad pothole thumps and my ill-advised attempt to drive straight over a kerb in Ongar Sainsbury car park.It was where I thought it wasn't... The car needs a check that all is OK underneath  at the front, and there are a couple of very minor paintwork issues to deal with. There's also some light snow forecast for Monday...

27/11/21 The Hare, Camp Coffee

 A grey, damp, drizzly November day yesterday with the temperature only reaching two or three degrees above zero. I went out in the morning to collect two prescriptions, one for me and one for one of the cats with chronic cystitis. Got home sand took a Furosemide with the usual Niagara-like results after an hour or two. I'm hoping for a better weight reading later as I'm sure I've had a bit too much fluid retention recently.

Planning on going out for breakfast later, probably to The Hare where I expect to have an Eggs Benedict with an added local Garnett's sausage. And no lunch...

I think that photo must have been taken a few years ago during the refurbishment, as there are no cars and no markings in the car park.

Did Pill Organisation last night so as to be ready to take the morning pills out with me. The various finger/thumb splits didn't help with that...

Tesco's delivery inexplicably included two bottles of Camp Coffee. I was surprised that the stuff still exists, and that there may be be somebody not too far from here who gets through two bottles a week. However, pleased to see that the old Empire artwork is still on the bottles, if rather smaller than I remember, and rather more "equal".

Sue 'phoned Tesco to find out what to do with these unwanted bottles, and the answer is that they don't want them back and we could donate to a food bank or similar.

Very sleepy again all day yesterday - possibly no coincidence  that it was the first day back on Lenalidomide after the week off?

26/11/21 Springfield, Zometa

Went to Springfield yesterday morning for the vampire nurses to take more bloods and do my Zometa drip. As usual, pleased to report no side-effects. Also had lunch of egg mayo and salad sandwiches and a pot of tea:

Got home a bit late to take a Furosemide. Evening temperatures down to almost freezing, so emailed Ken at Birchanger and told him it was too cold for me to go out (especially with my hands in such a bad way as they are at the moment). He replied "Wise decision". 

It's U3A boules at Ongar later this morning but the forecast is bad (rain and cold) so the chances are that I'll stay at home instead. At least that will give plenty of time for a breakfast Furosemide to work.

I've just started Cycle 20 of the current regime, with the first Lenalidomide for a week. So now the anxious wait for the next set of blood results begins....

24/11/21 RUDY, FGFR3, finger splits

Did my RUDY (Rare Diseases Study) blood samples day before yesterday at the Chelmsford Central Health Hub. A bit more waiting time than on the last couple of occasions, plus the usual referral from a junior phlebotomist up to a senior one even though it's the third RUDY one I've done there, they're familiar with the paperwork and the procedure etc.. The main thing they were concerned about was whether I would post the completed and sealed package or whether they were supposed to do it. I do it as always. Anyway, they had to use both arms to get enough blood out. Something went wrong with the left one after three blood tubes, so over to the other side for the fourth one.

Attended a Parish Council meeting yesterday in person - first time  for quite a while. Updated everybody on the myeloma, wore a facemask and sat up the far end of the table. Most of the others used masks. And I feel OK today, so far... 

A bit of a memory-refresher for me on that FGFR3 gene and its location at 4p16. 4 means chromosome 4, p means the short arm (from French 'petit', believe it or not),  and 16 refers to band 16. The gene itself - of which half of my plasma cells appear to have three copies not the customary two, is  "Fibroblast Growth Factor Receptor Three" and it's responsible for making a protein crucial to production of connective tissues and extracellular structures in general - including bone.  Also known as CD333.

We went to Oaklands Park for a shortish walk intended to be followed by a light lunch at M&S in the Clock Tower  Retail Park. But the cafe is temporarily closed in favour of more retail space over Christmas and New Year, so we ended up at Costa for a toasted sandwich instead.

Costa is just out of sight on the right. Exciting, isn't it? The glories of C21 Chelmsford. Actually, it's rather useful for us to have that M&S Food Store on our side of the city.

Bad news on the finger split front, and on the general condition of my hands. My fault, I think - when I came back from boules at Epping on Monday afternoon Sue was doing some gardening at the front and, wanting to show willing to play my part, I grabbed a pair of secateurs and started to work - all with bare hands in cold weather. It was only for fifteen minutes or so, but enough to do the damage. Stupid, stupid - all this trouble for the want of a moment or two to put some gloves on.  Well, it's a lesson learned, although I knew it anyway. Don't be such a fool again!

Tonight, cotton gloves and half a pint of hand cream. Well not quite, but that's the general idea.