30/11/19 (3)

We had a good walk in Thorndon Country Park North on the edge of Brentwood - the paths there are mainly flat and in decent condition so Walter Walker handles them easily. Bright sun and didn't feel too cold, so a very enjoyable trundle followed by toasted cheese sandwiches (they were out of tomatoes) and coffee.

One Facebook friend noted that I was looking a little green in this photo. Possibly a little-known side-effect of chemotherapy?

30/11/19 (2)

Still a bit under the power of Dex, went to bed just after 03:30 and slept through until 08:05. Drew the curtains to be met with the first real hard ground frost of the year. Must be careful to avoid any more finger splits if we do go out in the cold - I have enough of them already as a result of steroid skin-thinning. Fortunately the problems we've been having with heating and hot water (have I mentioned those here - can't remember?) are now sorted. It turned out to be a problem with the boiler valve head (controller unit) which needed replacement. The first transplant turned out to be defective as well, so we had to do a second one. I hope that isn't an omen.
Also got a new oil-filled electric radiator from Amazon as back-up heating. One of the end panels isn't fitted properly, so that'll have to go back. Normal life returns...

30/11/19

That Laxido is powerful stuff! Stayed off it yesterday, just had a couple of Sennakot (the mildest laxative in my armoury) a bit before midnight. We want to get out somewhere later today, and that means I need to have some confidence in my bowels. Under the influence of three sachets of Laxido in a day, I can't risk being more than seconds away from a WC - it can strike at any time. I think it's going to take a while to work out a regime that will work for me.

No evidence yet of the new diuretic having any effect on the oedema, but I was warned it might take a few days to show some benefit.

Otherwise, things are ticking over steadily and there isn't a lot to write about. I was up until after 05:00 last night with the Dex sleeplessness but now (02:04) on the first dex-free night of the week, I think I'll be in bed in another half hour or so.

Laxido and water

It looks as if a few days of 3 x Laxido a day has pushed things beyond the balance point and into the other direction. I have no desire to remember the unpleasant details, so I won't record them. Unpredictability and urgency feature strongly, and fear of that was why I didn't want to disrupt things while having to drive to the Basildon Cardiology Centre and back last week. So cutting back to 2 Laxido sachets daily for the time being, see how that goes.

After another lecture from Dr.Wi about drinking lots of water I'm doing my best but it doesn't come naturally. It also seems odd to be taking in as much water as I can at one end while also taking a diuretic to increase output at the other end - and that seems plenty high (and frequent) enough anyway. I know it's all about establishing a new and better water balance equilibrium but the instincts resist...

More pills

Had my same-day appointment (Dr.Wi not my usual Dr.Ku) and didn't have to wait too long after 11 to be called in. I now have a diuretic (Furemoside 40mg) to address the oedema. Seven days on, then off if there's an improvement and see what happens. Otherwise continue for the rest of the 28 days and report back with a week to go.

We have a continuing problem with the boiler / valve / programmer / thermostat, meaning that we have no, or very unpredictable, hot water or heating. Except for the immersion heater, of course, which is invaluable backup. Have just ordered a new electric oil-filled heater from Amazon Prime, should be here tomorrow. There goes the electricity bill... The weekend is forecast to be cold, and there's no way our plumbers or heating engineers are going to get this sorted before Monday. If then. Not directly myeloma-related, but just more problems we could both do without.

Update: plumber's been back and replaced the new (and possibly faulty) valve head with a new one. Everything SEEMS to be working OK so far. Fingers are crossed, toes also.

28/11/19

38 minutes hangin' on the telephone listening to "The number you called is busy" and re-re-re-dialing. Finally got through to reception, no appointments, no point in a telephone consultation (needs to be hands-on and, hopefully, to collect a prescription) so the best I can get is to go in at 11:00 and wait with lots of other people to be seen. However long that takes... And it won't be with my own GP Dr.Ku because he doesn't work on Thursdays, so I'll probably have to go through the whole story again...

27/11/19 (2)

The cancer nurses at Springfield weren't happy about the delay to seeing my GP about my consultant's advice re diuretics, and they advise using the same-day "emergency" appointment system tomorrow, so at 08:00 I'll  be doing this. (NB that's a link - doesn't show up too well with the colours in this theme!)

It can take an hour or more...

Velcade injection done again (subcutaneous and slow, stings a bit but not much) with none of the adverse reactions that many people report.

I now have to work out how to fit a sleepless Dex night together with being up and awake enough to be on the phone at 8 in the morning.

Problems, problems...

27/11/19

Velcade injection day again, and that means another two days of dex today and tomorrow. I do seem to be adapting to it a bit, because the sleeplessness hasn't been quite as bad the last couple of times.
The oedema is getting worse. Difficult getting socks all the way on this morning, let alone shoes. Also left trouser leg distinctly tighter than right, which means the swelling is now up that calf as well as in the ankle and foot. Any more than this and I'm going to have to go for an 'emergency' same-day GP appointment rather than waiting for Tuesday.
The right thigh trapped nerve thing (not myeloma-related) is also coming back. Now up to maybe 20% of the worst  but appearing quickly e.g. while unloading dishwasher after today's breakfast. Upping the amitriptyline from 20mg to 30 hasn't worked, so Dr.Ku may want to try a different nerve pain drug - which raises possible complications with the rest of the meds. There is a sort of connection with the myeloma, because when the thigh pain is bad it's exhausting and I just don't feel I have enough spare energy to cope with both.
Be all that as it may, leaving soon for lunch (toasted cheese and tomato sandwich, I expect) in Costa before going to the Oncology Centre for Velcade.

Day Three Update

My GP Dr.Ku has decided that he needs first-hand experience of my swollen feet and ankles before making a decision about which diuretic to prescribe (if  perhaps, any at all). First available appointment next Tuesday, another SEVEN DAYS away and thirteen days away from my consultant giving the green light to a low-strength diuretic. Am I happy about that? You can guess. By that time I'l probably have to go with bare feet, because I doubt I'l be able to get any shoes on.
OTOH he has added Laxido to my prescription list, so it isn't all bad news.

Still no heating. The plumber's been back and determined that it's a boiler problem therefore outside his expertise. Help coming from a local firm on Thursday. At this time of year, that's the best we could hope for, but neither of us need this at the moment!

I think it's a programmer problem or (less likely) a thermostat problem. Boiler's working fine, it's just not getting the right instructions. We'll see on Thursday.

Keys

I have a new RADAR key. That's to say it's actually a National Key Scheme (NKS) key because RADAR no longer exists. New NKS keys have blue handles or are blue all the way along, which probably explains why my new one is brass without a hint of blue anywhere. It also claims not to have been made in China and to meet all current specifications. It even has an octagonal shaft, although I'm less then clear as to why that should matter.

Update: it's to help partially sighted people identify the right key from a bunch. Obvious, really!

I haven't had a chance to try it out yet. I am prepared for disappointment.

Day Three

If bad days come in threes, tomorrow should be a good one...

Still haven't got a diuretic out of my GP. Apparently he wants an appointment before deciding. Unless Reception can do a miracle, that's going to put it into next week or I'm going to have to sit in the waiting room for hours breathing other people's germs before getting an "end of surgery" slot. If I'm lucky.

More troubles with the heating and hot water. The plumber was here this morning to fit a new valve control unit. Everything seemed fine. A few hours later, we have plenty of over-hot water and no heating...
He's coming back sometime later today. Just more trouble that neither of us needs right now.

The one bit of good news is that the GP has added Laxido to my prescription list as senna is clearly not potent enough. I've been using it for a few days now (bought a trial pack) and things have been a bit better.

Gout

One of my regular daily pills has been Allopurinol, which is a treatment for gout. More precisely, it reduces the level of uric acid in the blood. It took me a couple of days after receiving my Cycle 2 package of pills from the Springfield Pharmacy to realise that I had no Allopurinol left. Mild panic ensued...

Three possibilities:

1. The pharmacy failed to issue it,
2. The pharmacy did issue it but I somehow managed to mislay a whole pack of the pills,
3. The pharmacy didn't issue it because I'm no longer supposed to have it.

I phoned the chemo nurses to explain the problem, and had to go in there today anyway for more bloods. It turns out that explanation 3 is correct. Daily Allopurinol is for the first five-week chemo cycle only, after that it's "on demand" if uric acid levels go up or gout-like symptoms develop.

Nobody told me that. It would have saved a lot of worry time if I had known in advance that it was only for the first cycle. I'm now left wondering how many more little surprises like that are lying in wait...

24/11/19

Another one of those days. If it's true they come in threes, only one more to go...

Woke up feeling really good - a mood soon broken by the discovery that the heating was off. Phoned our plumber and he came round within the hour to have a look and do some diagnostics. We expect him back on Tuesday with a new valve. In the meantime things are working, but not at the level where we're exactly confident that they'll stay working. It's a hassle that we could both do without.
Eventually got out for a short walk and a coffee (and toasted teacake, half each) in Oaklands Park - both of us feeling the need of some fresh air and what now passes for exercise.
Roasted a chicken for dinner and while doing the washing up Sue gave herself a nasty little cut over a thumb knuckle with the big chef's knife that somehow slipped out of her grip. Of course she's on blood thinners at the moment, which doesn't help clotting. That kind of day.

My battle with extreme constipation continues. Laxido - so far - has been no improvement over Senna. A glycerine suppository came to the rescue again. I'll spare my readers from the details, and myself from remembering them. Bowel health is now becoming a bit of an obsession rather than something I've pretty  much taken for granted.

While doing the Pill Organisation Thing this afternoon I discovered that I haven't got any Allopurinol - that's the anti-gout drug to control uric acid that I'm supposed to take every day. Either I'm not meant to have it at this stage, or Springfield's pharmacy didn't include it in my last package, or I've somehow lost the entire box of them. I'll have to phone the cancer  nurses in the morning to sort that out.

23/11/19 (2)

One of those days today. Woke up to find the hot water not working - looks as if we need a new boiler valve to handle diverting the flow between hot water and heating. At the moment we have red hot radiatiors (well, nearly) and barely lukewarm water. Plumber / heating engineer coming on Tuesday. Until then we have an immersion heater and my shower heats its own water, so it's not a crisis. Then there was some sort of washing machine problem that I never got around to understanding  but I think it's solved itself.

I'd made a stupid mistake with a Tesco online order and booked it for next week rather than this, so I had to go off and do the shopping the old way. Meanwhile Sue is finding the recovery a bit harder than expected, still feeling quite washed-out and sore in the chest. It's still early days and we're hoping that will improve.

I got home, unpacked the shopping, and collapsed in my chair downstairs with my swollen ankles up on the footstool to drain the fluid away, and stayed there half-asleep for hours. Now I've come upstairs they've swollen up again!

I should be able to collect a diuretic from the GP pharmacy on Monday afternoon. Hope that will work, because this is really getting quite bad. Not sore or painful, just very obvious and keeps reminding me that things aren't the way they should be. And while on that subject, first sachet of Laxido this evening in the hope that it proves more potent than Senna...

Dry, flaky skin esp. on my hands - probably caused by the steroids. More finger and thumb splits than I ever get at this time of year - usually they're not a big problem until temperatures are consistently well below 10C and we're not quite there yet. The cancer nurses gave me a tube of Pliazon which seems pretty good but isn't helping the finger splits much. I'm not sure anything does, apart from time. My usual approach of a blob of vaseline and a plaster over the top doesn't seem much good this time.

23/11/19

Collected Sue from Basildon Cardiology Unit late morning as planned. No complications, not even parking ones - all the disabled slots outside the Cardiology Unit were taken, but I found a spot in the adjacent car park that was almost as good, and we got a free exit permit from the nurses. She still has soreness in her upper chest (predictable part of recovery) and has to be very careful with the catheter site on her wrist but basically all is good. No driving for a few days yet!

As for the constipation problem, some small action this morning but nothing more. Senna doesn't seem up to the task. So later today 'll start on Laxido, which seems to be the favoured laxative on the Myeloma forums. I've been taking one Fybogel sachet a day for several days now, and that does seem to have produced an improvement in output consistency and texture. I also have a packet of gut bacteria capsules (can't remember the name at the moment) which I'll add into the mix  a bit later on.

22/11/19

Took Sue to the Basildon Cardiology Unit as planned. She had one coronary artery completely blocked, and that one now has two stents in it. They're keeping her in overnight, and I'll collect late morning. So this will be my first "home alone" night since all this started, and it is just a little scary. What happens if, for instance, I wake up feeling lousy, shivering, and running a temperature again?

Anyhow, complete farce getting out of the multi-storey car park at the hospital. To start with, an 8-minute walk to get there - and with my mobility issues that's quite enough. I was told to take my private patient exit permit to the attendant in his office on Level A.

There is no Level A.

When I found the office on Level G, it was closed with two notices directing people to the Security Office in Main Reception. So off I went, including taking a wrong turn in the dark that I had to re-trace, putting my daily step count well beyond what I can really handle these days. I found the Security Office and guess what?

Closed, with a notice sending people to the Car Park Attendant's Office.

All the way back to the car again, and I headed for the exit intending to use the intercom there to try to talk to somebody. I stopped a little past the intercom button and was just about to reverse back to it when the barrier lifted and I thought I'm not wasting any more time here and drove straight out. So they'll have me registered as not paying. Well, we'll deal with that one later.

Eventually got home 22:45. Had intended to stop for fish'n'chips, but too late for our "local" chippy. So beans on toast with a fried egg on top instead, followed by strawberries for dessert and my late night pills. Forgot the Senna and had to go back downstairs for them. Cats are both in but obviously recognise that something's not right with Sue being away. And now for my shower, only 45mins later than usual.

It's another dex night tonight. I've set my alarm for 07:30, don't know how much sleep I'll get before that. If I'm really desperate I'll watch last night's Question Time...

RADAR

I have a RADAR key which is supposed to be able to unlock any of 9,000 disabled toilets across the UK. Despite that, I haven't yet found one where mine works. A little research shows that there are actually many slight variants, and mine may be an older type. So I'll have to update with a new one...
More complications! Research also shows that an electronic lock is being introduced which would be an improvement, but no doubt that'll take some time to get out here.

Update: I've opened up a minefield here! Old steel keys (like mine), blue keys, steel keys with blue heads, octagonal shafts, different lock types, cheapo Chinese rip-offs not made to lock-makers'  full specifications, and websites where the shopping baskets don't work. RADAR doesn't exist any more, now we have the NKS (National Key Scheme). Blue keys are supposed to be the new OK ones, but most of them aren't blue, they're steel. Or Chinese and don't work in many of the locks. I'd need half a dozen keys to cover all the possibilities, and the time taken trying to find a right one would rather defeat the fast-access object of the exercise.

I'll come back to it later...

My immediate problem is the constipation, but it's still the case that when the call comes you don't want to hang around. And I got into the RADAR key thing some weeks ago when I didn't know which way (constipation or diarrhoea) the Chemo would take me and wanted to be prepared for everything. And it still might go the other way at some stage...

21/11/19 (2)

It turned out to be an unusually good dex night - five hours uninterrupted from 04:3 0. But there's always a downside to anything, and it's that the ankle swelling was still clearly there when I got up and it's now fully back again (12:45). Trying to keep one leg elevated while at the computer, but I can do only one at a time. With luck I'll be able to pick up a diuretic from the GP pharmacy tomorrow. At least I'm in good enough shape to drive Sue to Basildon later today.

21/11/19

The first of two Dex nights, and the sleeplessness is back in full force. 02:45, and not the tiniest hint of being ready to go to bed. Thank the lord I don't have to worry about getting up to go to work any more!

Constipation update: I have Fybogel sachets (one a day) reputed to increase fibre levels. Taking one of those a day on top of the Senna. Also have some capsules of "friendly" gut bacteria which might help, but not going to start on those until we've got Sue safely back at home.

The ankle oedema is bad, and the right one seems to have caught up with the left. I'm hoping the diuretics will help.

Chemo Cycle 2 (20/11/19)

Went in to Springfield today for my Velcade shot and a new bagful of chemo pills to start Cycle 2.Took the 20mg of dex while there, so it's a dex night tonight. And again tomorrow night...
Got home and did the Pill Organisation Thing, then off to the Belvedere Jazz Club with sax-playing friend Trefor for a superb evening of small band jazz with Vasilis Xenopoulos and Freddie Gavita. Just what I needed.
Have sent a note to the GP requesting a diuretic to attack the ankle & foot oedema, need to call in there over the next couple of days to pick up more MST and Amitriptyline (every time I write that I have trouble remembering where the 'y' goes!)

Tomorrow (or later today) I have to drive Sue to the Cardiology unit in Basildon for her angiogram and possible stent(s) fitting. We have to be there for 15:00 and the procedure is scheduled for 17:30.  Allowing for a late start and a couple of hours recovery from the sedation, I doubt we'll be leaving for home very much before 22:00. They've told her to go prepared for an overnight stay, which seems quite likely.

Phone call

I just had a phone call from my Haematology consultant Dr.Ch about my blood test results going into Cycle 2 of DVT starting tomorrow. Paraproteins down to 3 (!), all other blood numbers are good. I'm very happy about all that. It'll take another couple of weeks to get the FLC numbers as well. 



Biggest practical problem at the moment - apart from the constipation, and I'm aiming to be more proactive about that - is the ankle/foot oedema, which is getting to the point where putting shoes on is quite a battle. I have naturally high insteps anyway, which makes finding comfortable shoes hard enough even without the swelling. The consultant didn't like the idea of diuretics yesterday because of possible kidney complications, but he's changed his mind now and says a short course of mild diuretics from the GP would be worth trying. So I'll try it.


 NB Strange formatting seems to be because I copied'n'pasted this in from the MyelomaUK forum. First time I've been that lazy!

Weight (19/11/19)

Going up too far, too fast. Something must be done. I blame the steroids.

Useful things, steroids - you can blame them for almost anything. And when we get to Wednesday, I'll have another two days of Dexamethasone. It all adds to the fun.

Right now my main concern is the ankle oedema, which is definitely getting worse. Not surprisingly, Dr.Ch didn't like the idea of diuretics - too much risk of interfering with kidney function, which I need as close to 100% as possible. He did suggest getting some compression (anti-DVT) stockings off the chemo nurses, and I suppose I'll have to give that a try although I don't fancy the idea after the trouble Sue had with them after her knee replacement.

It's confusing having DVT for Deep Vein Thrombosis as well as DVT for Dexamethasone, Velcade, & Thalidomide. Just another one of life's little trials.

Simplification (18/11/19)

Some welcome pill simplification today, after an appointment with Dr.Ch.
As agreed with GP Dr.Ku, cutting out Felodipene (blood pressure) for a week or two and monitoring the result, as my BP is a bit on the low side. GP says there is a 2.5mg version available, if just a little bit is indicated.
Cutting out the morning 5mg Morphine Sulphate tablet, which allows a bit more room to increase the Amitriptyline to 40mg (or more) if needed to control the right thigh problem.

Roll (17/11/19)

Decent sleep last night after a 05:00 start, then Sue off to a clarinet day in Waterbeach. I took Walter for a roll along the road to the post box and back - not a long way, but about as  much as I feel up to in one go. The right thigh reminded me that it's still there - nothing bad, just a ghost of what it used to be. Made myself a mug of ginger tea - a fairly foul drink made tolerable by a generous teaspoon of Manuka honey stirred in. Both are supposed to be good for digestive health...

Have just got the cat drinking fountain out of the dishwasher, filled it up, and taken it upstairs, only to find that the pump motor isn't working (that bit didn't go in the dishwasher). So now I have to empty it out, take it  back downstairs, and investigate.

One more thing to brighten the day - yesterday we had a pack of hounds (presumably from the Good Easter Hunt) in the garden, and the pond anti-heron netting has been pretty much destroyed. I think I'll track down an address, send them a bill for £100 of repairs, and see what happens.

Cat fountain update: now working again. The pump had somehow got itself out of position. Cats will be happy. Got to remember the important things!

Constipation update

"Action" happened after three hours of extreme discomfort, and "relief" is hardly the right word for the experience - but I do feel a lot better now!
Lessons to be learned, as usual. Reduce faith in senna pods, get in with the suppositories at least a day earlier in future. And now, I hope, on to happier subjects...

Constipation again

If I thought last time was bad...

Senna has been ineffective for several days. Sue phoned Springfield for advice, and went off to nearest open pharmacy (Tesco) for some glycerine suppositories. After umpteen attempts - and two ruined suppositories - to get the thing far enough past the blockage not to pop straight out again, I refined the technique and got one to stay in long enough to melt. According to the blurb on the box, action may be expected in 15 minutes up to an hour. I eagerly await it.

Unfortunately, this has meant missing yet another concert - Jan Garbarek at Saffron Hall. Apart from the wasted ticket, I doubt I'll get another chance to hear him live with a small group for two hours ever again. D*mn. Missed far too many booked-up events since I broke my shoulder over two years ago.

15/11/19 (3)

GP phoned at 13:05!

Only myeloma-related thing is decision to increase Amitriptyline dose from 20mg to 30 and maybe 40 for the slight recurrence of long-term right thigh "trapped nerve" problem. He says possible interactions with other meds esp. morphine would prevent going further than that. Will have to discuss with Dr.Ch and see if he still wants me to cut the MST down from 5mg twice daly to once only.

15/11/19 (2)

Two hours good sleep last night, and another two thoroughly interrupted. That's where a Kindle Paperwhite shows its worth!
Ankle oedema much less visible in the morning, but still had trouble getting left slipper on so instep must be more swollen than it looks.

The new Pliazon cream already seems to be having a beneficial effect on hands.  I'd  buy some stock online, but the only place I've been able to find it online so far is from a homoeopathy store, and I do have some principles. No way will I support that dangerous quackery.

Temperature was 36.9 last night, 36.4 this morning. All OK - 38.0 is the trigger point for contacting Oncology. Walking is pretty good, but not good enough for the stairs without hands.
12:55 now. Awaiting phone consultation with Dr.Ku (GP), booked for 11:00 - 13:00. Five minutes to go...

15/11/19

And here we are at 02:30 back in Dex World again - wide awake and not feeling remotely like turning in for the night.
Apart from getting the Velcade injection, not much gain from the visit to the chemo nurses at Springfield. The main thing was to dodge the harder questions and to leave them to to Dr.Ch on Monday. But they did give me a 100ml tube of Pliazon cream for the dry thinning skin on my hands, lower legs, and feet.

This is week 5 of cycle 1, and it will run directly into week 1 of cycle 2 - no "week off" as I had that in the week of the lung infection.

Still no reaction at all to the Velcade. If you took all the comments on the online groups seriously, you'd never touch the stuff because of the problems you'd expect to get. It's important to remember that the online people are only a small self-selected group of myeloma patients and carers in an "echo chamber" reinforcing their own negative experiences, and that people who are going through treatment with no problems (or not many) generally are too busy getting on with life. Apart from the ones who write blogs, of course...

Pill boxes

All loaded up and ready to go for next week:

Well, almost. I'm a day or two short for a couple of the pills, before I get a new batch for the next chemo cycle. That's another thing to talk to the nurses about tomorrow. Must make a list...

Morning feet

The "normal" state, taken as soon as possible after getting up this morning.

Swelling up again, only half an hour later...

Trapped nerve

The "trapped nerve" problem in my right thigh - which goes back several decades further than my myeloma or my MGUS - is starting to come back again despite the 20mg of amitriptyline I take every night. Nothing like the searing white-hot knives of old that made doing anything else impossible, now it's just the gentlest of hints that it hasn't gone away altogether and might just decide to come back.

Relevance? None at all, except that if I had to deal with attacks of that in my right leg as well as all the lost mobility on the left side and the oedema in both feet - well, that wouldn't be easy. I have a 'phone consultation with my GP booked for Friday, hope he can come up with something. After all, the amitriptylene was originally his idea as a diagnostic trick to confirm that it is a nerve pain problem, not a treatment.

Also need to talk about blood pressure (now stable again around 110/70 after being very low while I was in hospital), and about any water retention that may be behind the oedema. Diuretics would be the obvious approach, but I don't want to spend any more time p***ing than I do already...

Ankle / foot oedema (12/1/19)

A difficult thing to photograph single-handedly - they look worse IRL. You'll just have to take my word for it. This is at the end of the day, after spending as much of it as practically possible with the left leg in particular elevated.

Woke up this morning... (12/1119)

...after a good six hours unbroken sleep, starting at 0130.. That's five days post-dex for this week and probably the best night yet. The ankle swelling was right down to normal, although the last couple of mornings it's been little better than the night before. Now (1130) swollen up again. Spending as much time as possible with the left leg in particular elevated, but can't spend all day like that.
Also getting tiny little cuts on hands and fingers - only a couple of mm long but quite painful. Dry thinning skin is a recognised dex side-effect, so that's something else to talk to the nurses about on Thursday. Meanwhile, hitting the Neutrogena hard...

10/11/19

Had a good birthday yesterday with the "short" Admirals Park walk/roll to the Cafe for half a toasted teacake each followed by a circuit of the lake in wonderful sunny autumn weather. Then to Saffron Hall in the evening for a fine concert from Marin Alsop and the LPO, now the place's second resident orchestra after the Britten Sinfonia. However, the left hip's a bit stiff and sore this morning, which is a warning to still be very careful with my activity levels. No point overdoing things and setting them back.

The ankle oedema is getting slowly worse - having some real trouble getting socks and slippers on this morning 11/11 (especially left foot). Not seeing consultant till next week but will discuss it with the nurses in the Oncology Centre when in for the next Velcade shot on Thursday. Also want to get print-outs of recent blood tests out of them to keep my records up to date.

Otherwise, sleeping is best yet post-dex, and no sign of other side-effects. At least, none that a nightly shot of prune juice and a senna pill or two can't cope with.

09/11/19

Four hours good sleep again last night. Sue commented on how "upbeat" I sounded this morning - and that's half the problem with this early stage of myeloma. Apart from being physically more limited than before - I doubt I'll ever be able to keep up with a powered lawnmower again - most of the time I feel perfectly well and it's hard to remember that I have an incurable disease and that the long-term trend is only going one way, even if we can hold it off for a while from time to time.
Reading through all the posts on the MyelomaUK forum and on the Facebook group, it becomes obvious that I was lucky to get an early diagnosis (even though it might have been a couple of months earlier) compared with people who developed far worse bone problems before their GP or equivalent realised what was going on. The massive hit of steroids that Dr.Ko gave me while I was still with the NHS at Broomfield seems to have stopped the bone lesions in their tracks (helped by the radiotherapy for the big hip one). With luck it'll be a long time before they start getting worse again.

Sleep (08/11/19)

Day two of Dex (and the last of this cycle) - had a good four hours uninterrupted from 0340 to 0740. Dare I hope that I'm starting to adjust to the dex sleeplessness?

Dentist

No problem at all getting dentist and assistant to wear face masks - which they certainly should do anyway!

07/11/19

Here we are in Dexamethasone World again, after a week away. Went to bed at 0300, slept through till 0600, woke up wide awake. Could be worse for the next couple of nights, and probably will be.

Now in front of the computer again, checking a few news sites to see if anything interesting has happened in the last three hours. Answer: no. I might try another Stranger Things, but my reaction to Series 3 so far is the same as the general one - the tone has shifted away in a different direction, the characters don't seem to be quite themselves any more, and the show isn't as compelling as it used to be. Perhaps its the inevitable result of working with such a young group of central characters while the cast are growing up - but look how well Game of Thrones handled the same issue.

Later this morning, back the dentist for the final appointment to fit my new crown. I've got the top man, who doesn't usually wear a face mask although most of the dentists there do (apart from one who I'm told claims an allergy). I'm not risking another infection and hospital stay - the timings make it possible that I picked up the recent infection at the dentists - so I shall have to take him on about this. Which might be a bit tricky.

The swelling around my ankles - I think I can call it ankle oedema now after a conversation with the cancer nurses yesterday - hasn't subsided as completely as it has been doing overnight. Maybe because I had only three hours lying flat, maybe it's the dex encouraging fluid retention (also low volume of overnight urine production). No doubt that the new footstool downstairs helps, but up here in my study the best I can do while using the computer is one foot at a time up on the shelf underneath the desk top. I'm trying both at once and it is possible, but too uncomfortable to stay with for more than a few minutes.

Chemo (06/11/19)

Back at the Springfield Oncology Centre today for my third Velcade injection. No reaction again, despite all the people on the 'Myeloma Support Group' Facebook group who report endless problems with it.
Velcade means another two days of Dexamethasone (started this morning), so expecting a few nights of disrupted sleep. Just after I'd got it more or less back to normal...

Delta?

We saw Sue's new cardiologist today. His name is Dr.Gamma. One can't help wondering what became of Drs. Alpha and Beta...

She's going to have a balloon angioplasty (insertion of a stent into a coronary artery to improve blood flow) in a couple of weeks. It could have been sooner, but unavoidable diary commitments got in the way.

As for me, temperature is holding steady at normal levels and  blood pressure has returned to my usual 110/70 or thereabouts. Not the very low figures like 80/54 that I was getting in hospital. So I doubt there is good reason  to change the medication, although I will raise the subject with my GP.

It never rains...

This blog is about my experience with myeloma. Anything else is wandering off-topic. But - as Dr.Ko said to us back at the beginning - Sue and I are both in it together. Both affected by it, and both part of the journey through it.

For some time now she's been getting soreness at the top of the chest and slight breathlessness when walking, although not always exercise-related. She took it to her GP and got a referral to an NHS cardiologist. That was four months ago, and the appointment came due while I was in hospital. My haematology consultant Dr.Ch said to me when I told him about it "That's good, it's usually six months for cardiology".

Results: angina, and a 90% chance of Coronary Artery Disease.
Next steps: an echo cardiogram and an angiogram (involves injecting a dye to make the insides of the arteries show up on an X-ray, looking for narrowing that would restrict blood flow and oxygen transport to the heart muscles). NHS date for that: December 11, six weeks away.
So she's decided to use her private health insurance and have this done at Springfield. The date: Monday 4th - early next week.
I'm not going to speculate here about what might come next. Not until we have those results, at least. But as anyone who knows Sue will understand, her main concern is to get it dealt with as soon as possible.

The timing could, of course, have been better. But we are where we are, and all that. It may be just a matter of a few lifestyle changes. We'll deal with it, one way or another.

Zometa (01/11/19)

For the sake of the record: I had my third Zometa perfusion today before coming home - a few days early, but not enough to matter. I spent the waiting time and the saline flush time by reading the threads about Zometa side-effects on the Facebook Myeloma group. If it's all to be taken at face value, some people have a really hard time with Zometa, but I haven't had any side-effects at all. So far, of course - three treatments aren't enough for long-term cumulative effects to show up. Fingers crossed for later...

Back home again (01/11/19)

It was inevitable that I would pick up an infection at some point during chemo. Everybody does. Luckily - and largely due to Sue and the digital ear thermometer - we caught this one early and seem to have dealt with it before it became a major problem. Several lessons to be learned from that!

The chest X-ray for "suspected left basal pneumonia"showed "some linear atelectasis at the left base with blunting of her costophrenic angle in keeping with the suspected pneumonia." Translated, that means some collapsed alveoli (air sacs) at the bottom of the lung - but not fluid-filled, which would be worse. The costophrenic angle is where the ribs meet the diaphragm, and 'blunting' suggests an accumulation of fluid in the membranes surrounding the lung. With a bit of luck, both of those should be back to normal by now.
The blood cultures showed nothing at all after more than 48 hours, so whatever infection there was never really got going before we hit it with the IV antibiotics.

I now have a 5-day course of yet another antibiotic (oral this time) before going back to the usual two for the rest of the chemo. Dr.Ch says to take this week as the "week off" for this cycle - so we do the next Velcade injection and two days of dex next Wednesday, which puts subsequent cycles back on the original schedule. All I have to do is make sure I don't get another infection...

Anyway, the people at Springfield were all wonderful. Excellent care, good food (if perhaps rather too much of it considering the lack of exercise) and as pleasant an environment as you could reasonably hope for. 

Might be worth adding that the X-ray report also mentioned "myelomatous expansion of the right third rib". We know about that of course - it's the likely explanation of what I thought was shoulder-blade pain some time ago - but this suggests that the steroids haven't had much effect on it. I shan't be surprised if we end up doing some radiotherapy on it at some stage.