13/03/21 The importance of bushes

Nothing new yesterday, except that the Furosemide had its usual disruptive effect on my morning and required me to nip behind the bushes during a shortish afternoon walk up to Marks Hall Lane and back. You have to plan things very carefully while on a potent diuretic. Possibly a slight reduction in the ankle swelling, but too soon to be certain.

In the absence of anything else, here's an image I found online. It's called Pathogenesis of Multiple Myeloma, and no I don't understand all of it either...

12/03/21 Central Park Lake, oedema

Did the long version of Admiral's Park today, getting my step count up to a better level after yesterday; Here's a different view of the lake, with the Central Park Cafe on the left and the viaduct in the background. Unfortunately no train on it at the time.

Wide angle by the  S21 Ultra.

Nothing else exciting today apart from  a phone appointment with Dr.Ch on the 15th, as the two week experiment in cutting out dex and Len comes to an end.

Still nothing from the mysterious oral surgeon or from Dr.Zo about the DaT scan. I'm starting to get annoyed.

Definite ankle/feet oedema tonight, and hands and fingers a bit puffed up as well. Time for some Furosemide later, and will just have to fit the exercise around it. It's a bit strange, because last time around I thought dex was the culprit (as in so many things) and this time I'm off it. "It a mystery" in the words of Detritus the troll.

10/03/21 Rain, Parkin

A familiar tale of a cold, wet, and windy day. Continuous rain and unpleasant to be outside so I limited myself to one trip from the back door to the garage and back. I've had the under-desk exercise bike out again...

Made some parkin this morning. Now "maturing" for a day or two.

I have fallen asleep a couple of times today, both during attempts to finish my recording of the Celebrity Bake-off. There must be something particularly somnolescent about it. Nevertheless, it's part of "Stand Up to Cancer" so I feel slightly obligated to  watch...

Still a bit of ankle swelling, but not quite enough to make me reach for the Furosemide.

Now to write a 3-paragraph bio for Myeloma UK's Advocacy Panel before the first Zoom meeting on the 24th.

That's a stock photo. Mine hasn't got that far yet.

It's a year since I did my stem cell harvesting...

10/03/21 Egress and Oedema

Copies of Dr.Ch's monthly reports to my GP usually arrive in hard copy through the post. This time it arrived electronically in the form of an Egress message - a rather complicated secure encrypted system. Fortunately I got my computer set up for it about a year ago for The London Clinic so it wasn't too hard to get it in clear. It confirms that he is considering cutting the Lenalidomide / Revlimid down to 15mg from 25mg after the two weeks off. I'd be happy to try that.

It's not very obvious in any other way, but I must be getting a bit of the ankle/foot oedema back again. My evidence is that it's become harder to get socks on. Shoes OK so far. I think I might get some of those 40mg Furosemide tablets out for a week or so.

Only a short walk today up to Pepper's Green Lane, but  enough to meet my targets. And again I haven't fallen asleep during the day, although it did come close a time or two. 

09/03/21 Blood test results and new walk

March blood test results are through, and all good. Paraproteins undetectable, free light chains ok - the kappa/lambda ratio (most important number) is slightly out of normal range but not enough to worry about. Other things normal or slightly outside but no more than can be expected considering the disease and the treatment.

For my daily exercise I turned right out of the house, ignored the triangular attractions of Ongar Road and Marks Hall Lane and carried on north-west along the A1060. I've not done that before, because I had it in my head that there's a stretch with no footpath on either side with some quite fast traffic. Not too pleasant pushing a walker on a road without much width. But there isn't. Went along almost as far the church and turned left along a Public Footpath through the fields:

Exciting, isn't it? Looks like something out of the Fens.

Good to see the recently cleared out ditches after the recent flooding, where many of the problems were caused by badly maintained drains and ditches. Anyway, good 6,000 steps walk, all activity targets met.

08/03/21 Fatigue and sous vide

Another day without falling asleep or feeling completely exhausted, so it's pretty clear that either the dex or the len or a combination of the two is behind the 'fatigue'. Obviously I can't come off them indefinitely so it's going to be a case of reducing the dose(s) to find a regime that keeps the myeloma suppressed without also causing too much 'fatigue'. But I'll take the fatigue etc. if that's the price of keeping the myeloma at bay. At least I'll know what the cause is.

We did an extended version of the short Admiral's Walk in the morning, including coffees and a millionaire's shortbread (shared) from the Central Park Cafe. The day's activity targets all met. This afternoon did sous vide fillet steaks in the slow cooker (which has a sous vide mode) with oven chips and steamed broccoli. 

06/03/21 Braintree and John Ray

I sent my email to the NHS person (see previous post) and within a few moments this came back:

Please note I am away from the office until Monday 8 March.  If your matter is urgent please ring 0113 2433144 and ask for a Haematology secretary.

Aaargh! Still, it is the weekend. Can't really get annoyed about that.

This morning's email included a reply from the supposedly out-of-conatct Professor XXXX:

Thank you Ian. Very helpful indeed

VBW

Gordon

And that will probably be the end of that. Job finished.

A new destination for today's exercise, and one we'll certainly be returning to - Braintree and Bocking Public Gardens, Very pleasant, lots of benches, and plenty of variety of paths so you can "go round twice" for more steps without going over the same ground in the same direction too much. It will be better still in a couple of months when the many fine trees will be in full leaf.

The history of the gardens goes back to the Courtauld family (yes, that one) and there is also a section that commemorates local man John Ray:

Link to a full-size image with readable text HERE. Use the + and - zoom buttons at the bottom of the screen.

14:55 and haven't fallen asleep yet today...