06/09/21 Easy journey and etc.

 A better night again and all the usual things - bowels, rashes, oedema are going OK. There have been a couple of posts on the facebook Myeloma Support Group that make me think about how easy my "journey" has been so far. Two people are six months or so after transplant, still having lots of issues and wondering whether it was all worth while. And one lady with MM who has two brothers each of whom has tongue and bowel cancers and several more besides. Some people have all the luck.And others don't get any of it. C'est la vie.

Boules at Ongar yesterday morning. Played two friendlies against good competition and was on the winning side for both of them. They were both fours (two against two) which means playing with only two boules and I really don't like that. It means you don't get the third boule, which is so often the best one.

The battle with the left hearing aid was mercifully short. It started OK,went dead after twenty minutes, and I got it charging again in another ten, or thereabouts. It;'s still flashing green (along with the right one) now and the app shows left on 99% and the right on 89%.

Boules at Epping tomorrow, and I may have to be home a bit early because we have cleaner problems. One of ours is ill (not COVID) and we may be getting a new pair later today. If so I'll have to be back before they arrive to do the showing around thing. OTOH, they may not come till Tuesday. Won't know until we remake contact at a civilised time in the morning. Sue will be out all day in Cambridge (taking her clarinet for a service and fixing a sticking key) so I will try to use the time after getting back to do some work on VOIP telephony.

Much better weather yesterday, possibly the arrival of a much-needed Indian summer. Here's the back garden in the low evening sun: Long mAy this weatgher spell last!

05/04/21 Pills, and a better night

Another rather lazy day yesterday. Both the recent rashes are completely disappeared, no sign of any new ones. The ankle oedema is still there but at least 50% reduced. I shall continue taking a Furosemide whenever the plan for the day allows. That plan for yesterday did include going out  for lunch (and exercise) but for one reason and another we never made it it. We got into a bit of a tangle with the finances of one of Sue's wind bands now they're starting to emerge from lockdown - that took up a bit of time and patience and is only half disentangled as I write.

Did the Pill Organisation Thing and discovered I had rather fewer of a couple of pills than I thought. I think some of them have dematerialised or somehow found their way down the back of the sofa. I'm off to the GP surgery website to order some more when I've finished this post.

In the afternoon forced myself out for a walk up to Pepper's Green Lane and back with just a stick. It's slightly frightening how slow my walking has become, and how my stride has shortened. It used to be a good metre when I was going well, now it's only about three-quarters of that.

An increasing annoyance (and nothing to do with myeloma) is my left hearing aid. I put the right one in the overnight charger and it behaves perfectly. The left one, however, either refuses to charge at all or goes ok for a while and then stops. It can take all of an hour to get it to behave properly - which is not how I want to spend the  early hours of the morning. I've been in touch with Specsavers about this, and basically there's nothing I can do about it until the rechargeable battery comes due for replacement some time next year, when I can probably get a new charger as well..

I had a better night last night although my Snore Score was the highest yet at 113. But no "can't swallow" events. Oxygen saturation wasn't bad with only 1.6 drops  per hour and nothing below 89%..

Boules at Ongar later this morning - no matches (I've finished those) so I can afford to turn up a bit later than usual. On the other hand, it's Ongar Sunday market day so there will be pressure on parking spaces. Better get there early anyway...

03/09/21 (3) Infection?

It's been a strange day. I cancelled U3A boules and felt lousy all morning and afternoon - did little but sleep in my chair downstairs. Felt as if I was fighting some sort of infection but temperature remained OK and no other symptoms apart from feeling a bit cold on what was actually a warmer day. Anyway, things started to improve early evening and feeling much more normal now (21:25). Hoping for a good night without that "can't swallow" feeling.

03/09/21 (2) Bad night

Not as good a night as I've been having recently. Woke up a bit before six with the feeling of being unable to swallow that I remember from taking Tramodol when I broke my shoulder four years ago. It's not easy to get back to sleep after that, so I didn't. My ring shows good uninterrupted sleep before that, but my Snore Score hit a personal best (or worst) of 97:

and the overnight oxygen saturation monitor shows some drops, but I've had worse:

Temp is OK at 36.5 and BP 123/74 also OK. My hypochondria score would probably be off the scale, if I had one. Thinking about yesterday's developments with that rash, and there's always the possibility of a reaction to the Zometa.

03/09/21 Rash revisited.

It seems I may have been guilty of not treating that wrist rash as seriously as it deserved. I had a 'phone call from my GP yesterday. He suspects vasculitis (inflammation of blood vessels) and is concerned that there may be more in less visible places (i.e. internally). My unofficial medical advisor also identifies vasculitis as "one of the more serious possibilities" and says that if it spreads or I develop fever or feel otherwise unwell I should go immediately to hospital. In fact, under standing orders, I would first contact the chemo nurses at Springfield and put things in their very capable hands. However, the gradual healing has continued and it now looks like this, which is very much better:

Now keeping a watchful eye open for anything similar appearing elsewhere. In fact I've always been prone to a few of these spots here and there, but not in such a concentrated grouping. They come and they go, and I've never been much concerned about them. Perhaps I should have been. Also sent the earlier photos to Dr.Ch for him to have a think about.

All went OK at Springfield yesterday. The canula and the Zometa went in fine with no problems, and the stocks of blood tubes were adequate (there's been a lot in the news about shortages of these forcing GPs to cut down on "non-essential" blood tests). Also had a COVID swab and confirmed that they do get sent off for PCR tests not just the less reliable lateral flow tests which of course I can do at home. For some reason they haven't done the COVID swab the last couple of times, so happy to have another one done.

I had a pot of tea and a plate of egg mayo sandwiches for lunch while the Zometa was going in. Still haven't worked out who pays for these...

Collected next month's meds, and told that as my calcium levels were a little high I should cut the calcium tablets down from two daily to one. I haven't seen the blood numbers yet, but checking back through the last few  months shows calcium comfortably within normal range. So something may have changed, or maybe just a "blip". Hope it doesn't indicate more bone breakdown. Waiting for full blood results in a week's time.

01/09/21 Autumn, and third vaccination

 Autumn already, and goodbye to a really poor summer apart from a few days here and there.

Good news from the JCVI today - blood cancer patients will be prioritised for a third COVID vaccination sometime this month. Apparently it will be either Pfizer again or Moderna with some evidence suggesting that a mix of vaccines may be more effective. I probably won't get the choice.

Went out to Thorndon Country Park (both north and south) for a bit of a walk and a light lunch (cheese and pickle sandwich). My activity target for the day thoroughly beaten again. On the other hand, have felt thoroughly tired out since getting back home.

It would be good to have an autumn like this...

Wrist rash now almost completely gone, ankle oedema is back to a more normal level. Springfield for bloods, Zometa, and meds tomorrow morning.

31/08/21 Dentist, RADAR, phone

The dentist said all clear to go ahead with Zometa on Thursday. This new one is far and away the most punctual dentist I've ever had. I'm used to waiting half or three-quarters of an hour, but he's never been more than five minutes late, if that. Which raises a simple question: if he can do it, why can't all the others?

After the dentist I went for a walk twice round Oaklands Park, and noticed that their disabled toilet has a new RADAR lock fitted. You may recall that neither my old-style nor my new-style RADAR key worked in the old one. So I tried the new one - and it opened the door! First time I've ever got a RADAR key to work. Unfortunately, once inside the door, things weren't quite so good. Flush not working well, leaving ample evidence of previous visitors. No electric hand dryer or paper towels, and no bin. Soap dispenser empty. No hand sanitiser. All not very good. At least the ordinary toilet there has one of those three-in-one hand wash machines.

Dr.Ch 'phoned for our consultation just as I was leaving for boules at Tower (Brentwood) so we did most of it in the car (built-in hands-free!) as I was driving along narrow twisty country roads between home and Fyfield, Nothing much to report about that - I sent him an email half an hour beforehand, just in case he didn't make the 'phone call on the right day- it has happened before:

Dear Vijoy,

In case we miss the phone call this evening:

Saw dentist this morning for bisphosphonate check. He says OK.

Media fuss about daily aspirin for myeloma. Probably not relevant to me?

Have had several small rashes - one to three pound coins in size. Start red, fade to pink and away over a week or so. No irritation or raised areas. Likely side-effect of dex or len? Not a concern unless they get much worse.

Appointment with chemo nurses for bloods, Zometa and meds on Thursday morning  After watching tonight's news, I hope they have enough blood sample tubes in stock...

Finally got a sleep test referral out of my GP. Took a ridiculously long time!

Bowel cancer screening kit arrived in today's post. Always been clear every time so far...

Everything else ticking over smoothly as usual.


Best,

Ian

We covered all of that and agreed to make the next one face-to-face again.

Boules was only moderately good with a few good throws mixed in with a lot of rubbish. Lost both games. The trapped nerve thing in my right thigh was playing up badly, which probably didn't help. That's long pre-myeloma, and the main reason why I take 40mg of amitriptyline every night. It helps, but not as much as I'd like, and I'd rather not increase the dose any further as that would take it into anti-depressant territory and I don't want to go there again.