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.

30/08/21 Bisphosphonate check

That wrist rash is continuing to improve very slowly. No other rashes have appeared elsewhere.

Boules at Epping yesterday morning - I played reasonably well but that's all. Won one game, lost another. Also had a splendid chat with the others, accompanied by tea and biscuits, afterwards. One of the great benefits of taking up boules has been meeting new people and making new friends. Very good for me after the last year and a half.

Later today I have the eight-weekly bisphosphonate check at the dentist in the morning, followed by a 'phone consultation with haematologist Dr.Ch. later. We both wanted to make it face-to-face again but the Bank Holiday (yesterday) interfered with his clinic times so it has to be "out of hours". No big problem as there isn't all that much to talk about from my end. There's been a bit in the myeloma media about benefits of daily aspirin as an anti-inflammatory, but I don't think it applies to any significant extent to people in my position, and I don't need another blood-thinner to go with the Rivaroxaban (Xarelto) that I'm on already.

No graphic today. I can't find a relevant one worth posting.

29/08/21 (2) Smashed knee (not mine)

Wrist rash continuing slow improvement, bowel management went a little off-track this morning but OK during a long boules morning at Ongar. Brian and I finally won a match in the Doubles League by 13-12, and particularly pleasing that I won the final end with the last throw of the end, a perfect point right up to the coche. We were well behind on 2-8 but chipped the lead away one point at a time until he glorious finale.

Organisation was a little disorganised because our secretary Carolyn is unexpectedly in hospital. She - a former England squash player - was demonstrating finer points of the pogo stick to her grand-daughter, came off, and "smashed her knee". I have no further details, but surgery expected either in the afternoon or tomorrow.. There's a moral for us all in there!

Boules at Epping in the morning, so another tricky senna / fybogel / laxido decision to make...

29/08/21 False alarm

The good news is that the wrist rash is, if anything, slightly improved. At any rate it isn't any worse or spreading. Too early to judge whether that's related to being off Len this week.

Did Pill Organisation and went out for a walk in Admiral's Park. But we had a false burglar alarm on the front door (I get an automated 'phone call when this happens) so I had to head back for home as fast as possible to turn it off. Fortunately neighbours on both sides are away at the moment. There's a long story behind the recurring problems with Zone 1 (exit zone) but I'll spare you the details.

Despite the frustrated walk I passed my Oura Ring Activity Target for the day. Not quite sure how I did it because I haven't been out of the house again, but I did.

28/08/21 Cat food, boules, wrist rash

Did a few small jobs about the place this morning, including having to track down an alternative source of supply for Blue's specialised "sensitive" cat food. Our usual supplier was out of stock and the #2 one had a problem with its checkout - just kept buffering and never loaded properly. So after some more searching I ended up - yet again - at Amazon. At least we're amply justifying the Prime subscription these days.

Went to Ongar for lunch (sandwich from the Tesco fuel station) and some practice boules. Played well and won the friendly doubles. On Sunday we will try to finish the doules competition - that means one pair (Frank just back from hospital and 90-yr old Felicitie just back from France) have three matches to play, the one against Brian and me being the third. I'm just hoping they'll be too tired to throw straight by the time they get round to us...

Week 4 (off lenalidomide) started last night.Usually I don't notice any difference between len and non-len weeks, but I didn't have all this sleep monitoring stuff back then. Will be interesting to look for any changes in the oxygen saturation and snoring patterns.

After hearing from my unofficial medical adviser who said "sooner rather than later", I emailed the photo of the "rash" on my inside left wrist to my GP. Being the weekend, it'll be a couple of days at least before he gets to see it. I the meantime I'm continuing with the antiseptic cream. Some of those spots are looking quite angry now - bright red centre surrounded by a pinkish circle.

After that bitterly cold night at Birchanger, I have the beginnings of a split on the end of my right thumb. Applying Vaseline. If I'm going to carry on playing through the autumn and winter (not to mention the spring) I'm going to have to find some gloves I can play with. Several people I know use gloves all the time, so it must be possible.