06/03/21 Active, awake, and grumpy

Did the extended version of the triangle yesterday afternoon - 5,342 steps and activity targets met. That includes going on down Ongar Road for a bit to to the Marks Hall Farm entrance, and then back again to the Marks Hall Lane junction. I can extend that gradually as the Muscles4Myeloma challenge goes on.

Not much else to say, except that Sue commented that I hadn't fallen asleep during the day. It's far too soon to come to any definite conclusions, but I certainly have felt less tired. So far, coming off dex & len seems to be having the desired effect.  

I finished the job for the Myeloma UK Patient & Carer Information Panel. The email about the job said, amongst other things: 

Logistical aspects of participation: Professor XXXX would like to invite myeloma patients to review and provide a perspective on Section 1 of the attached application (see attached) and email him directly with your comments. Professor Gordon XXXX is cc’d into this email. It would be ideal if you could get back to him by Monday 8th of March.

I reviewed. I provided a perspective. I suggested some changes. I put them all into a .docx file and sent it to the good Professor. This is what I got back:

I am sorry but I am currently on annual leave. I will not have access to emails so please re-direct to the following, as appropriate:

For NHS matters, please contact my NHS PA xxx xxxx (email address)

For University matters, please University PA xxx xxxx (email address)

For UKMF/UKMRA issues, please contact xxx xxxx (email address)

Hmph! That annoys me just a trifle. I suppose I'll send it to the NHS person.

05/03/21 Ongar Road, and leftover vegetables

A decent if cold day, and another walk around the triangle plus a little extension down Ongar Road and back got my activity level up to 594/400 and 5520 steps. Did a bit of work on another document from the Patient and Carer Panel, will aim to finish that off later today. Also started our census forms...

Cooking yesterday (always one of my lifelines to "normality")  was Fusilli with tomato, basil, leek, mushrooms, and more tomato - in other words, mainly using up leftover veggies. At the same time I made an improvised leek, carrot, potato, and thyme soup in the Thermomix out of the rest of the veggies. Will have half of that for today's lunch, the other half is in the freezer.

Here's a photo from the walk. It's our local telecoms mast, and the trees around it have been cut back which make it more visible and, we hope, more functional - especially when 5G arrives out here.

03/03/21 (2) Webinar

The fog never really lifted all day, and rain started just after I got back from walking the triangle. No Dex this morning, and no Len later this evening - still as nervous about that as I was earlier.

The "COVID vaccines and the immune system" webinar was OK but didn't tell me much I didn't know already. Inevitably it attracted a few idiots in the accompanying chat and questions who deny that the virus exists and think vaccination is some kind of con... Everyone is entitled to an opinion, but that doesn't mean that everybody else has to pay it any attention if it isn't backed by any evidence or reasoned argument.

03/03/21 Steps, and lifelines

Just a walk up to Pepper's Green Lane yesterday, followed by an afternoon helping Sue with her new phone. Still comfortably enough to beat my ring's activity target for the day.

Before myeloma I was quite persistent in trying to beat my daily "step target", using the combination of smartwatch and phone to record steps. But once I started using a walker that system fell apart, because the smooth movement doesn't register on the watch as separate steps (same thing used to happen with powered lawnmowers). Now I've joined this Muscles4Myeloma thing I've linked my ring to Google Fit and Google Fit to MoveSpring, which is running the the Muscles4Myeloma "Challenge". All a bit complicated, but the end result is that I've got a step count back. Yesterday was 3,967 (not a lot by some standards or even my old ones, but it'll get better) and I walked - or pushed a walker - 1.81 miles in the day. Monday was 4,675 steps and 2.19 miles. It works, I think, by a combination of GPS and stride length calculated from my height. It's good to have that back instead of my watch telling me I've done just a few hundred steps when I know perfectly well (often because Sue's been with me and her watch works OK because she doesn't use a walker) that I've done something over 5,000.

Today will be the first day of the two weeks without either dex or len. Can't deny I'm a little nervous about letting go of something I've come to think of as a bit of a lifeline. Dr.Ch said no need to monitor bloods for another four weeks but I think I might insist on a check in a week's time and again at the end of the two weeks. If the paraproteins start going up again we need to knock them back asap even at the expense of more fatigue and we won't know what they're doing unless we test... And as far as AXA is concerned, a couple of blood tests will be a lot cheaper than two weeks of Lenalidomide. Which reminds me that I probably should be in touch with them about this change in treatment.

I note a bit of swelling in my left ankle. Not as bad as the first time, but definitely there. I might treat myself to 40mg of Furosemide after breakfast. Nothing on the calendar apart from a webinar (terrible word!) on COVID vaccines and the immune system from 16:00 to 17:00 so should be able to fit in a good walk if I time it right.

02/03/21 Advocacy Parter Panel

 Here's an extract from the stuff I received today from the Myeloma UK Advocacy Partner Panel:

The Myeloma UK Advocacy Partner Panel (APP) is a collaborative group of appointed patients, carers, family and friends that helps shape our advocacy work. The Panel is around 20 members strong and will work with Myeloma UK to help make the patient voice count with decision makers including politicians, Government and senior figures in the NHS, drug approval bodies and industry.

Should be interesting...

01/03/21 (2) Phone consultation

 Had the monthly chat with Dr.Ch today and the main topic was the tiredness / exhaustion / loss of stamina / daytime sleepiness / whatever that has got slightly but definitely worse over the last few months. Lenalidomide is the obvious prime suspect, and the plan is to come off both that and dex for the next two weeks (I'm already at the end of one regular week off the Len) and see how things go. Depending on the outcome, we might go back to Len at a lower dose than the current 25mg.

I am slightly nervous about this because I don't want to see those paraproteins start coming back again. But it's only two weeks and reducing the fatigue would make quite a difference to my quality of life. So we'll give it a try.

01/03/21 Bloods, Panels, Challenges

The blood draw at Springfield went fine, along with my eighth COVID test. Full results in a week, as usual. I have a 'phone consultation with Dr.Ch due at 18:00, and he should have most of the results by then - just not the paraproteins and free light chains, which are the ones I'm most interested in.

Not in the least to my surprise, my application to join the Patient and Carer Voice on the Steering Group for the Myeloma Patient Data Project was politely rejected. I didn't think I would fit the pattern for that. On the other hand, a load of .pdf files have arrived about the Myeloma UK Advocacy Partner Panel, which I have joined. So plenty of light reading for this evening...

Exercise today was the local triangle, which I used to catch up on what Gigaclear (fibre broadband people) have been doing since they came back to the village a few days ago. That also completed my first day's "Challenge" for Myeloma Awareness Week.