Monday, 12 July 2021

12/07/21 Self-obs

Just done blood pressure: 117/74 which is "ideal" according to my chart. Pulse 74, also OK. Temperature 36.6, oxygen saturation 96%.

Good to know I'm still alive... Probably about time I did another blood sugar but I think that's downstairs.

Found the blood sugar test kit! Not where it should have been. At 21:55, well over two hours since last eating. But I have had two or three hundred ml of the supposedly sugar-free orange squash it's my habit to drink during online backgammon. I did a test and it came out at 12.5 where my chart says it should be under 7.8 - I'll try again first thing in the morning as I'm not inclined to take that result too seriously. I suppose one must distinguish between added sugar and natural sugars plus anything in the drink that can be metabolised into glucose...

I've checked the bottle. It says "no added sugar" not sugar-free. Beware of easy assumptions!

12/07/21 Probably not PN

All went well in the end yesterday, with the exception of my right foot. It was really bad early morning - could barely walk at all even with a stick, and couldn't get out of a chair (or off the loo) without one. Even then it wasn't easy.

Dr.Ch emailed back saying it didn't sound like PN (OK, it's not the classic presentation but I've learned that like all things myelomatous PN can be very personal and can present in many different ways) and advising anti-inflammatories and contacting 111 or GP Monday morning. He also suggested the  possibility of gout but I don't think so...

I "borrowed" a couple of Cuprofen (high strength 400mg ibuprofen) from Sue and it did get gradually better from mid-morning onwards reaching 80 or 90% of normal by 17:00. I don't know whether that was the Cuprofen or whether it would have happened anyway. I now wait to see if the same pattern will repeat later this morning. I won't bother the doc if it doesn't.

Will go to bed with a stick later. Just in case.

Sue and I both did Government COVID lateral flow tests first thing - both negative - as did our visitors. We had an enjoyable lunch and catch-up chat outside, and the two 9-year-olds - both impeccably well-behaved - were fascinated by the ponds and the cats. Or by Belle at least, because Blue had inevitably made herself scarce with strangers around..



Sunday, 11 July 2021

11/07/21 Foot pain

Back and worse than before at 06:00. Couldn't get back to sleep. Partly it feels mechanical, partly like nothing I've had before. I'm thinking, of course, that it may be the onset of Peripheral Neuropathy.

Couldn't contact the cancer nurses because it's Sunday. Sent Dr.Ch an email instead. Will try the nurses again Monday morning, and possibly try for a GP appointment as well.

More later, I expect.

11/07/21 Butter

Yesterday went more or less according to plan, except that the double cream (Tesco) I was using to make spreadable butter simply refused to churn and give up its buttermilk. Only the second time I've had that happen in all the years I've been making our own butter. Panicking slightly because we need more butter for later today, I 'phoned Sue who was out doing some shopping in Ongar Sainsbury and got her to buy some more cream. I used the rest of the Tesco stuff to make "hard" butter and that seemed to work OK but it was unusually soft and squishy at room temperature - would barely hold its shape. I just hope it'll be OK at fridge temperature, or else I'll have to throw that out and start again. Anyway, I used Sainsbury cream to make spreadable, which worked perfectly well. Then made some tuna mayo to go into rolls for lunch,when we expect to have friends visiting (two adults, two 9-yr old heterozygous twins).











Otherwise we had more-or-less the expected lazy day at home, although I still managed my activity target with a version of the short Admiral's Park walk. The oedema is better, yesterday's strange pain in my right foot was still there in the morning but faded quickly. The Pill Organisation Thing is done for next week, as are Cleaning the Cat Drinking Fountain and Paying the Weekly Bills. The main things I have outstanding are doing the new job for a Myeloma UK Panel, and returning a defective keyboard to Amazon.

There was an item on one of Sue's many fly-on-the-wall hospital TV programmes about life in an A&E (Accident and Emergency) department. A woman with myeloma turned up with new acute leg pain. Lying flat, she could only raise either leg an inch or two (I remember that!)

The obvious possibility to my mind was spinal cord compression caused by myeloma-related vertebral fractures, and the treatment would be some form of kyphoplasty to stabilise that area of spine with cement. However, an MRI showed no cord compression or change from established myeloma lesions etc.. She was sent home with, as far as we saw, not even any pain relief. The strange thing is that with an established myeloma diagnosis she must have been in the care of a haematologist and must have had a nursing team with an established contact person but there seemed to be no attempt to contact them - and it seems unlikely that they would have supported discharge without wanting at least some direct contact with the patient, the A&E staff, or both. Perhaps it happened but just didn't get through the editing process. If so, just another lesson in not taking these programmes at face value!

Saturday, 10 July 2021

10/07/21 Cycle 15, dragonflies, breakfast

Consolidation cycle 15 begins, back on the Lenalidomide for the next three weeks. Yet again I've failed to notice any difference between the three weeks on and the one week off. I seem to be remarkably free of side-effects in general, apart perhaps from the constipation and the fatigue. And the jawbone, the finger splits... But none of them serious enough to justify changing the first-choice treatment, which is a better position than many people are in.

There's been a (very polite) discussion among the Myeloma UK Support (facebook)  admins over whether we should admit people outside the UK who of course are dealing with different medical systems and often very different approaches to the treatment of myeloma. I took a "no change" position,and that side seems to have come out on top. I also have some more documents to review and revise from one of the Myeloma UK panels I'm on. Must do that over the weekend.

A friendly couple of games of boules yesterday morning with the Rodings University of the Third Age group. My side won both games, and I'm starting to wonder whether it might be tactful to play an intentionally bad ball now and again...

After that I mowed the back grass and a bit of the side, as well as dragging some more weed out of the pond. Gratifying to see lots of dragonflies around there, some of them ovipositing. Was rewarded by a vicious pain in my right foot  - not sure what I did but it must have been connected. Have applied a generous treatment of Deep Heat and hope it will have gone away by the time I get up.

Planning on going out for breakfast in the morning, and nothing else much for the rest of the day apart from watching tennis. I've already done the weekend Paying Of The Bills and have cleaning the cat drinking fountain and some butter-making to do. No Boules on Sunday morning because we are expecting a visit from friends either on their way to a wedding or possibly on their way back from it.

Friday, 9 July 2021

09/07/21 Springfield, soap

 A much better experience at Springfield Oncology Centre than last time, when they all seemed a bit overwhelmed and not coping very well. Yesterday was much quieter and back to the normal standards of calm efficiency. And my nurse Jo got the canula in right at the first attempt rather than a couple of them taking four attempts last time.










Went to the car wash and for a short walk in Tower Gardens on the way home - enough to get my activity target comfortably met. I was hoping it would stay dry for some boules practice on the back lawn, but the rain started as soon as I got back. 

Today's Amazon delivery - and we're not far off one a day - was some more African Black Moisturising Soap. I was advised to find something like it for dry thin cracky steroid skin by one of the cancer nurses back at the beginning, and I've become curiously addicted to this stuff:












That's it for tonight. If the weather stays dry, which it probably should, boules with the Rodings U3A later. That's a very friendly non-competitive game with good company.

Thursday, 8 July 2021

08/07/21 Oaklands,and no Furosemide

Not too bad a dex night - went to bed just after 02:00 as usual, woke up just before 06:00, gave up and got up 06:25.

Plans for another Furosemide went out of the window as we went for a quick once round Oaklands Park - stick only for me as we used Sue's car to go to the car wash afterwards. 









Then home for a quick tuna mayo roll for lunch and off to Ongar for a bit of practice and a friendly game.

No chance for a Furosemide this morning either, as I'm due at Springfield Hospital at 13:30 for a Zometa drip, which will mean being hooked up to a drip stand for an hour or so. I just hope they get the canula in a bit better than last time...

The oedema is a bit better tonight - rings came off easily and ankles don't look as bad as sometimes. 

08/10/2026 The best laid plans...

Well, so much for my plan to post rather more frequently. This may have been the longest break yet. The plain fact is that there hasn't ...