29/12/19 (2)

Done it! Downstairs with no hands and carrying my man-bag.

Had a good walk / roll around Marks Hall Arboretum, followed by most of a cheese & tomato baguette in the cafe. Sue had the rest of it.

Generally feeling pretty good today, energy level up to something more like normal. Sometimes hard to remember that I have actually got a disease which will be with me for the rest of my life and will determine how and when I die - unless something else gets me first - although pills etc. four times a day is usually enough...

29/12/19

Downstairs - done it! But only when not carrying anything. Even so, that's a big improvement.
Now off to Marks Hall Arboretum with Walter for a winter walk.

Stairs again

Done it again - several times - with no hesitation going up. Still holding on a bit while going down, but the best I've been since this all started.

Going to bed at c.04:40 on this second dex night of this cycle. Four hours will be enough, and if the weather is even half decent we'll take a trip out to Marks Hall Arboretum. Walter Walker will have some work to do, and I'll have to be careful not to overdo things and knock the improvement back.

28/12/19

About 4 hours good sleep last night, starting around 04:45. That's OK for a Dex night. Another one tonight...

Made it up the stairs with both legs and no hands - first time for quite a while. There was one hesitation when I thought I might have to go for the handrail, but I didn't. Only a couple of days ago it was all on the right leg, and using the handrail all the way. Going down is much better as well, using both legs but still needing to hold on to something all the way.

27/12/19 (2)

Had my Velcade injection and my first 20mg of dex to start Cycle 3. Thalidomide goes up from 100mg daily to 200, so on alert for side-effects. I come off one of the antibiotics (Levofloxacin) as apparently no longer needed. I don't know the reasoning behind that and won't get it until I see Dr.Ch next on 06/01/12.

Today's package of pills from the Springfield pharmacy included a box of AdCal (calcium and vitamin D3) which apparently I should have been taking for 21 days after each Zometa perfusion - but I've never heard of it before. There's been some confusion as to whether I should get it from them or from the GP.

That raises a bigger question that I don't understand - which things should come from GP and which should come from Springfield (and therefore be chargeable to my insurance)? I've been getting Omeprazole and Rivaroxaban from the GP pharmacy (and therefore "free" because of my age), but today the Springfield package contained a box of Omeprazole (I'm now overstocked with it) but no Rivaroxaban. It's hard to see the logic behind all this.

Now some good news. The compression stockings are gone, and good riddance to them. Despite being the largest available (XL) they were digging in badly at three different places, at least as badly as the ordinary socks did (and that was only at one place).
So the compression stockings are consigned to the hell where they belong on the advice of the #1 chemo nurse, and it's back to diabetic socks. That may mean putting the Furosemide (diuretic) back up from 20mg to 40. Will see how it goes and consult with GP at next meeting on 06/12/19, or by letter if necessary.

Made a turkey leftover risotto with red pepper, courgette, and mushrooms - using traditional method with my traditional olive wood risotto spoon. Very satisfying, but we still have a lot more leftover turkey...

27/12/19

We got through Christmas (a very quiet one at home) OK after the DVT scare on Christmas Eve. Eaten too much, of course...

Slight rash on front of left ankle this morning - possibly a reaction to the compression stockings?

Back to Springfield later today to start Cycle 3 with a Velcade injection and more pills - including doubling the Thalidomide to 200mg daily. And tonight will be a dex night.

I seem to be managing the constipation problem moderately  successfully with the FSL regime. The pattern is two days of very little action (if any), followed by a third much more productive day. Must check with the doc as to availability of Fybogel on prescription.

26/12/19

Compression stockings. A Christmas gift from the Oncology Centre that I could have done without...
They add 15 minutes or so to the time taken to get going in the  morning. And I  must remember to have my phone ready for a photo when I take them off this evening. Judging by last night they cut in at two places much more than the ordinary socks did, and that's what set this whole business off. OTOH, they did reduce the swelling a bit. Not a lot, but a bit.
Going back to Oncology tomorrow (Friday) to start Cycle 3 with a Velcade shot, will discuss with the nurses then.

Christmas Eve

An unusual Christmas Eve, to say the least. It started with a routine visit to the Oncology Centre at Springfield Hospital for more bloods in preparation for Cycle 3 starting on Friday 27th. I had a few other things to do and got home mid-afternoon to be met with Sue needing help dealing with some recalcitrant computer problems, and advice that the (partially) unilateral nature of the ankle/foot/calf oedema suggested possible DVT and that I should get it checked out by a doctor. Sue rang the surgery and the duty doc "strongly advised" going straight to A&E (ER for Americans) to get it checked out - possibly involving a Doppler ultrasound scan. So that was our Christmas Eve evening.

Arrived at Broomfield A&E 17:35, left at 20:45, arrived at nearest KFC two minutes before closing time and just got something to eat back at home. In between periods of waiting in A&E (first in the main waiting area, then in a small separate room because of my compromised immune system), I had the second blood test of the day, an ECG, and eventually a doctor who took a detailed history, measured my legs, and was on the verge of prescribing precautionary Rivaroxaban (blood thinner) when I told him I'm already on that because of the DVT risk associated with steroids and some of the other things in my chemo regime. So he went off to consult a colleague and they decided no need for a Doppler scan and we were free to go...

23/12/19(2)

On waking up this morning right foot looks  more or less normal but left one visibly swollen, including above the instep. Circumference of left calf is 5cm more than right calf. This is after several days of cutting Furosemide (diuretic) from 40mg to 20mg on Dr.Ku's advice. No indications of dehydration. I think he's got this one wrong.

23/12/19

(00:50)
No sign of any problems from putting the Amitriptyline up to 40mg, but OTOH it doesn't seem to have done any good either. I think Amitriptyline has run its course and we need to try another approach. There again, it has confirmed that the right thigh thing is a nerve pain issue, which was the point of starting it in the first place.
No bad effects from the 'flu jab.

One consequence of putting the next chemo cycle back to the 27th rather than the 25th is that I need two extra days of chemo pills to fill the gap. For some reason I have enough spares of everything except the Aciclovir (anti-viral), and I'm six pills short of that. No idea why, maybe they're down the back of the sofa or somewhere...
Phoned the chemo nurses about that on Friday, but yet again their answering system appears not to be working. Will try again 08:00 or so later this morning, and if I can't get through will have to consider going in person later. That will be after lunch at Cote in Chelmsford with nephew David, over here from the USA for the run-up to Christmas.

21/12/19

I've long thought that when it comes to joint replacements, my left knee will be first in line. Since long before the myeloma, it has bad patches, then it's fine for a while. It started a bad patch a few days ago, for no obvious reason, and sometimes just gives way underneath me. The good side is that my left hip is now so much better I can get through one of those without much of a problem. If it had happened while the hip was at its worst, the pain would have been spectacular. So 10/10 for the radiotherapy - it did exactly what it set out to do. However, there's a hint of a problem because all those bumps and jerks on the left leg are now causing a bit of stiffness and soreness in the left hip joint again. Not serious at this stage, but I don't want it to get any worse.

We went out to the Clock Tower retail park for a light lunch and some late Christmas shopping in M&S. Before leaving I organised my lunchtime pills in a separate pill box, topped up my water bottle, loaded all that and my phone into my bag, checked that the Blue Badge was in there - changed from slippers to shoes and left the bag behind. Memo to self: get a grip!!

20/12/19

A bit of a non-event day today. Still no adverse reaction to the 'flu jab. I'm in the week-off limbo before starting chemo cycle 3 on the 27th, and I just want to get on with it and then on to the transplant.

The Fybogel, Laxido, and Senna combination failed to produce any action, so we'll see what happens in the morning after another round of them. If nothing, I'll have to go back to two of all of them. To put it another way, anything to avoid having to go back to the glycerine suppositories!

Stayed at home all day, the steady fine rain and general gloom giving little motivation to go out. Did a few little jobs but left with the feeling of a day that didn't really go anywhere. Must get out somewhere later today, make sure that the real non-cancerous world is still there.

Reading through, I fear I sound a little down and depressed. I don't think I am, it's just that I want to keep moving forwards and this week off (Velcade and steroids only, the rest continue) isn't helping.

I don't start the next cycle until after Christmas, and even though that's only five days it feels like a lifetime away. The transplant won't be easy I know, and the prospect of four or more weeks in hospital followed by more months of rehab is less than encouraging, but it has to be done. The sooner the better. OTOH, at my age I'm unlikely to get a second transplant, which means we shouldn't rush this one but wait until all the blond numbers are just right.

Post-Breakfast Update: FLS worked most satisfactorily!

19/12/19

Slept well last night - normally it would have been a dex night but it's my "week off" dex and Velcade before starting cycle 3, so I'm about as far away from steroids as I'm likely to get for quite a while.

Made a copy of the thalidomide side-effect pages from the Patient Leaflet for Sue, just in case...

Still no reaction from the 'flu jab yesterday, just a very slight tenderness at the injection site.

18/12/19

Had my (rather late) 'flu jab today, as far away from steroids in both directions as possible. Had to have it in Boots because the surgery cancelled as they had run out of vaccine. So it was a little annoying a day or two ago to find that they had a new supply in - but of course my original appointment had already been taken by somebody else. Having it done in a commercial pharmacy involved some extra paperwork and interrogation, but despite Sue's fears I didn't have to pay (being over 65 and with cancer). No reaction at all so far.

Dr.Ch phoned this evening to say that for cycle 3 (starting 27/12/19) he is doubling the thalidomide dose - standard practice, apparently. I must read up on side-effects and be quick to drop the dose back down if unpleasant ones appear.

Two more "Cancer on Board" badges arrived in today's post. That's one to live permanently on each of my two "man-bags", and one spare for any other use. Should cover everything.

17/12/19

Drove Sue to Broomfield Hospital for the first of her ten cardio rehab sessions, then spent some time in the kitchen – first time for a while. We had some chicken stock in the freezer from the last roast chicken I did, so called in at Aldi on the way home with thoughts of cauliflower, parsnip, and ginger soup in mind. Aldi didn’t have any cauliflowers or parsnips or fresh ginger, so the plan changed to sweet potato, broccoli, and yellow peppers. Made the soup in the pressure side of the Heston Blumenthal Fast Slow Pro, then prepped a couple of fillet steaks in vacuum bags for sous-vide treatment for dinner, with root vegetable fries and (more) broccoli. They went down well…

Still finding the stairs a little hard - not up to the "no hands" thing at the moment, but otherwise no problems. All ticking over about as well as can be expected.

16/12/19 (2)

A very medical day today, with appointments with both my GP Dr.Ku and my haematologist Dr.Ch, now returned from his holiday and myeloma conference in Florida.
The GP called the first one, which was a "Cancer Care Review". It turns out that this isn't so much a review of cancer care as an opportunity to deal with any other medical issues that might get overlooked because cancer tends to push everything else into the background. So we covered quite a lot of ground on both sides. Amitriptyline going up from 30mg daily to 40 (for the long-time right thigh nerve pain problem, which is gradually coming back again). I'm warned to watch out for signs of "serotonin syndrome":
"Serotonin syndrome (SS) is a group of symptoms that may occur with the use of certain serotonergic medications or drugs. The degree of symptoms can range from mild to severe. Symptoms include high body temperature, agitation, increased reflexes, tremor, sweating, dilated pupils, and diarrhea. Body temperature can increase to greater than 41.1 °C (106.0 °F). Complications may include seizures and extensive muscle breakdown.Serotonin syndrome is typically caused by the use of two or more serotonergic medications or drugs."
He also included euphoria etc.. Any of that and I drop the dose back to 30mg. NB amitriptyline also good for any nerve pain originating from the myeloma side of things.

We talked about BP, which has gone up a small amount since coming off Felodipine a few weeks ago but is still in perfectly good territory. I think I'm getting more unexplained variation in both directions than I did before but he doesn't seem bothered by that. He's asked for a record of readings over the next couple of weeks. I'd be happy to go on 2.5mg - low enough dose to make barely any difference, but enough to deal with the slight vulnerability I feel being off the stuff after so many years on it.

On the constipation side of things (I just can't get away from that, much as I'd like to!) he advised combining Laxido with Senna (different modes of action). Just when I thought I was getting on top of it, I have to change the routine...

Foot / ankle / calf oedema - he's concerned that 40mg Furosamide might lead to dehydration  no mater how much water I drink, which would not be good for me at this stage. So he's cutting it from 40mg to 20 and ordering more bloods to check kidney and liver function plus a leg blood pressure test - all with a view towards compression stockings. I don't particularly look forward to that but can see the logic - keep the hydration up but stop it accumulating at the bottom.
While organising that blood test I remembered that I had forgotten my last cholesterol numbers and he looked them up. A couple of years ago 3.67 and a good HDL/LDL balance - all fine. Will do the cholesterol again this time.

On to Springfield and Dr.Ch. Nothing much to say except that he's pleased with the way things are going and still anticipates transplant after four cycles. Asked about the time between end of cycle 4 on Feb 6 and starting the transplant process - we had been assuming three weeks but he says no need for that - probably go straight in, would expect to be writing the referral letter during Cycle 3. Which starts next week...

Also - fairly obviously - no heavy lifting. I had worked that out for myself. So the Roccbox will stay where it is in the garage until I'm recovered from the transplant. Too heavy for me at the moment, as are the gas cylinders. The first post-transplant pizza and garlic bread night will make a good target to aim for.

16/12/19

The inevitable constipation report. Hopefully approaching some sort of balance on the basic regime of one Laxido and one Fybogel a day. Several small movements yesterday, one good one before breakfast today (deliberately missed yesterday's Laxido, expect to take one this evening). If I can get it to carry on like this I can cope, but the combination of infrequency, unpredictability, and urgency that I've had for the last few weeks has been difficult to deal with especially when out of the house and away from the necessary facilities. It makes "living as normal a life as possible" a bit problematic.

Note to myself: had an email "Life" from Peter Dawkins, my biology teacher at Canford and fellow Corpuscle. Mustn't leave the reply too long...

15/12/19 (2)

I spoke too soon. There's another split opening up on the end of my right thumb.

15/12/19

01:15 and not a lot to write about. Things are ticking over with the chemo, the oedema is better (but far from gone), the finger splits are almost entirely healed. I'm due to see my GP Dr.Ku on Monday 16th, will have to persuade him to continue the diuretic and possibly to put me on the 2.5mg Felodipine partly on hope of stabilising the BP a bit (I get more variation in both directions now I'm off Felodpine altogether than I did when  was on 5mg/day). There's no sign that the diuretic is having an effect on BP, and TBH I feel a little vulnerable not taking a medication that I've been on for years. I'd just be happier knowing it was there, even if I also know the dose is small enough to be near-insignificant.

Timings. Sue and I were talking about this on the way back home from her Rodings Players Orchestra concert. Chemo 4 is due to end 27/02/20 (assuming I  need only four cycles in preparation for transplant). Then there's a waiting period before the SCT process begins, usually 3 weeks as far as I can tell. That takes us to 20th March plus probably four weeks hospital (could be more) before starting the post-transplant rehab which could last the rest of spring and summer...

13/12/19

Friday the 13th. It was a nightmare trip to Sainsburys, with traffic on the way there and back and far too many people in the store. The whole trip took me three and a half hours and threw my pill schedule right off course.

On the good side, that nasty little wobble last Sunday appears to have sorted itself out completely - the hip is as good as it has ever been since this started. And also, I suspect, as good as it's ever going to be.

Also making good progress with the finger splits and cracks with  combination of several hand creams, the new soap, and one of the nurses' advice to plaster the hand cream on thick at night with a pair of cotton gloves on top, and sleep that way. Feels a little odd at first, but does seem to help. Picked up a bottle of "Fast Absorbing Light Texture" Neutragena today, and that seems good - it does absorb in a couple of minutes unlike the standard stuff which leaves you reluctant to touch anything for ages while it's still on the skin.

I can't leave this without mentioning the election. So there you are, I've mentioned it. Well done Boris.

12/12/19 (2)

Went to bed just after 0400, slept through to 08:30. That's good enough for a dex night.

Raining steadily, about to drive off to vote. Will try to get a good snooze or two in later to prepare myself for a long dex-aided night in front of the TV. The problem this year is that all four election night TV channels will feature people I can't stand. The "pundits" include Laura Kuenssberg (BBC)  of whom we've seen too much recently, Robert Peston (ITV), of whose extraordinary voice and floppy hair we've both seen and heard far too much, and ex-speaker John Bercow (Sky). No further comment. At least he doesn't even have to pretend to be impartial. Channel 4's "alternative" comic approach (we'll see about that) will be hosted by Rylan Clark-Neal, still remembered for his PVC-clad and tuneless performances on The X-Factor, assisted by Canadian comedienne (thoroughly woke and Corbynite leftist, of course) Katherine Ryan. There'll be a lot of channel-hopping. Must lay in a spare set of batteries for the remote control...

That's enough off-topic. Back to Myeloma next time.

12/12/19

00:53 and the first of two Dex nights, so here we go again...
Feeling wide awake as usual.

Polling opens later today. I/we usually e-bike down to the polling station but I haven't been on mine since early summer. First it was the impossibility of getting on or off safely (or at all) while my left hip was at its worst. I could probably do that OK now, but it's been replaced by fear of coming off and ending up with a broken pelvis. I have fallen a few times over the e-bike years without any unpleasant consequences but I'm now at much higher risk of a break and I really don't need my treatment plan being disrupted. Sue has also lost confidence after her recent fall that destroyed her helmet, and knows she needs to be OK to look after me. Just as I have to be as OK as possible to minimise the load on her and to look after her now we know about her heart condition. So it looks as if the e-bike years are over, which is a great pity. We got  lot of pleasure from them, as well as valuable exercise (don't believe anyone who tells you e-bikes take ALL the effort away - they don't!)

If the weather is as good as yesterday was I might be tempted to walk it to the polling station with Walter, but the forecasts say it won't be. So I'll have to take the car.

11/12/19 (3)

Cycle 3 was due to start on Christmas Day, which obviously wasn't going to happen. They've put it back to the 27th which is fair enough but caused chaos in our various calendars. And it's a Friday, which interferes with our usual big weekly food shopping day for four out of five days of the next two cycles (Velcade injection days will change from Wednesdays to Fridays). We may have to move the supermarket expeditions to Thursdays, which is a little too far from the weekend to be perfect. OTOH, the shops might be a bit quieter, which would help. Complications, complications. It's the little things that drive you mad. Essentially trivial, but who needs them?

11/12/19 (2) and a whinge

Back to Springfield earlier for the weekly Velcade / Bortezomib s/c injection for the last time this cycle, which also means Dex today and tomorrow. Next week is the week off Velcade and steroids, then we start cycle 3, which means I'm nearly at the halfway point of the chemo course, assuming that we stay on just four cycles. A new set of bloods show paraproteins holding at 2, which is a good sign. OTOH, that transplant is drawing closer. I'm looking forward to it but also more than a little apprehensive because I know it can be very tough and the recovery period can be long. But it has to be done.

Now for the whinge. Disabled toilets. The hand dryers are almost always at dwarf height which is hard for tall people standing and who have trouble bending. Obviously that's good for wheelchair drivers who may be the majority of users but it's hard for the ambulatory disabled. I did go in one somewhere which had two dryers at different heights - ideal but would cost more and take up more wall space so not always practical. There's scope for a clever Dragons' Den invention here.

11/12/19

The cancer nurses at Springfield advised me to avoid "ordinary" soap because of its drying effect on the skin. We have various foamy things and handwashes but I never really feel that when it comes down to it they're quite as good as old-fashioned bar soap. That's probably ridiculous, but there it is. So I now have several bars of African Black Hydrating soap from Ghana. It's not actually black, but nearly - the colour comes from cocoa pod ash, apparently. Strange roads cancer can lead you down!

By his time tomorrow night the General Election results will be starting to come in and I'll be having a long night in front of the TV. Just as well that it'll be a Dex night.                                                                                           

10/12/19

Updates:

Left hip improving. Walking nearly back to "normal" but still a slight feeling of something not quite right with the joint.

Bowels better. Seem to be doing OK on one Laxido and one Fybogel a day - for the moment...

Stiff neck - gradual daily improvement.

Oedema - Some improvement with the diuretic. The swellings above the insteps have gone down which makes getting shoes on much easier. Also left calf is better, but much the same round the ankles.

Bruise on wrist - starting to fade, no new ones.

Skin cracks/splits on fingers - intensive treatment with Pliazon, Savlon, O'Keefe's Working Hands, and etc. is helping. Mostly healed/healing now, only problem one is on side of top knuckle of right first finger which is a heavy use area so I'm always knocking it. And because of all the hand cream etc. plasters for protection don't stick at all well!

09/12/19 (3)

Back home from Springfield after leaving some of my blood behind. Advice re constipation is predictable: more fluids, more fibre, fewer eggs. Two out of three not too bad... Very unwilling to reduce egg consumption!


As for the left hip issue, one of the nurses is going to email Dr.Ch (consultant) who is still on holiday. As it seems to be improving, watch'n'wait until next appointment with him on the 16th, but he might want to order X-ray or scan before that so as to have results available.

09/12/19 (2)

Stiff neck again this morning, but not as bad. Walking is reasonable, but very slow on stairs and left hip still feels unstable and vulnerable. Some muscle pain in left groin. Think I'll take two sticks to Springfield later, to be on the safe side (Sue is off at Broomfield for the first stage of her cardiac rehab, so I'm on my own).

09/12/19

02:13 Monday morning, and things have improved a lot. Stiff neck pretty much gone, and both hips appear to be working OK. So - subject to how I wake up later - it looks as if that little scare  is over.
Nevertheless, there are lessons. Any good patch I'm having is temporary and may not last. I've been good enough recently that I've been tempted to go out without even one stick. But if I hadn't had a stick with me yesterday I'd have been completely unable to walk at all, and therefore 100% dependent on others to help me out, as fellow Parish Councillors did back in March when I had that first pathological fracture on getting out of my chair after a meeting. There may not always be helpful others around and willing to help. I've ordered a (free) CANCER ON BOARD badge from canceronboard.org and donated £5 to pay for it - that may be some help but it won't solve everything.     

On the other matter, success both yesterday morning and later in the evening.   Another glycerine suppository avoided, which has to be a Good Thing. The problem is to find the right balance - three Laxido a day produced dramatic results a while ago, but two a day for three days just now achieved nothing until the last minute.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

Possibly a setback?

Woke up this morning with a stiff neck. Had trouble getting my chin up far enough to shave properly. That may or may not be related to what follows.

Got to the Jazz Club, went downstairs to find a seat at the front, felt a little wobbly on my legs. Stood up at the interval and could hardly move my left hip at all - walking very slow and difficult. It was a bit better by the end but not much, and making it all the way back to the car park (must be at least a hundred yards!) was quite an expedition, especially with nothing available to hold on to for much of the way. If  hadn't had a stick I wouldn't have been able to move at all, and I would have given a lot for a walker... Relieved to say it's a good way back to normal now I've been home for a while.

This is unpleasantly reminiscent of the pathological fracture that eventually led to the myeloma diagnosis, except that there's no pain this time - it's just that the left hip isn't working properly. Or maybe I'm just too full of painkillers to notice... I thought for a while that it was spreading across to the right hip as well, but that hasn't developed. I'm hoping it's just a muscular twinge that will clear itself up in its own good time rather than anything more ominous.

Nothing to do except see how it goes and report to the cancer nurses at Springfield tomorrow morning (due there at 12:00 anyway for more bloods). If they think there's anything that needs investigating they'll deal with it.

08/12/19 (2)

The Laxido finally worked this morning. Joy, celebration, and dancing in the street. Metaphorically, at least. Now free to go out to Chelmsford Jazz Club over lunch!

08/12/19

My first unexplained bruise, possibly encouraged by the blood thinner (Rivaroxaban) and the steroids:

It's on the side of my right wrist, a couple of inches below the thumb. Noticed it while in the shower.

07/12/19 (2)

Still waiting...

07/12/19

Two Laxido sachets the day before yesterday, two more sachets yesterday. Still waiting... there may be another glycerine suppository coming my way.

I hope not.

I don't want to keep going on about it, but of the various chemo side-effects (constipation, thin skin on hands with multiple finger splits, ankle and foot oedema, taste changes with fruit juices) this is by far the most difficult to live with. I'm lucky in that I haven't had the  extreme reactions to Dex or Bortezomib (Velcade) that many people on the forums describe, but that doesn't make severe constipation any  easier, especially when it means you hardly dare leave the house just in case the Laxido effect happens and you have very little time to deal with it...

Stairs

Did it again this morning - alternate legs, no hands. But still waiting for the Laxido effect to happen, and due at Ongar Jazz Club this evening. Could be a tricky decision...

Dex

A strange Dex night (#2 of 2) last night. Fell fast asleep in my chair in the study at about 03:00, went right into deep sleep and woke up suddenly at 05:00 in that state where you hardly know where (or who) you are and can barely stand up without falling into something. Made it into bed after bumping into a few walls and doors on the way, read on the Kindle for a bit once my eyes had focused enough, and back to a good sleep until 09:30 or so. Actually feel quite well-rested now at 12:15, and waiting for yesterday's two Laxidos to have an effect before heading out to Tesco for the big weekly food shopping. And some more repeat pills from the surgery pharmacy.

finger splits (2)

The thing that I took a photo of faded away to nothing in a few hours, and the one that I thought might develop didn't. So no infection, and I had no evidence to show the doc except the photo, which is sadly out of focus. Not easy taking a photo of a small part of your right hand using your left hand only to hold the phone and with the case cover flapping around over the lens. Nevertheless, it shows something really was there:

I left with no antibiotic cream and advice to use moisturising hand cream even more than I do already (and lots of it), and to keep hands warm. Which I do my best to do anyway. Also to avoid "ordinary soap" because of its drying-out effect and removal of natural skin oils. So now I'm off to research extraordinary moisturising soap. Or possibly handwash. Shower stuff? Who knows where this will end?

Finger splits

I noticed late morning that the 3mm long split on my right little finger had developed what looked like a blood blister - a dark red/brown circular patch covering the length of the split. I took a photo and sent it to my retired rheumatologist friend who replied "don't like the look of it, might be an infection" and suggested getting a prescription antibiotic cream from the GP. Had a phone consultation and now have an appointment at 17:20 this afternoon. Temperature was 36.3, which is OK.
Annoyingly that "blister" has now faded away almost completely, but I think another one may be starting up on a different finger. I think I need to have something in stock for rapid reaction if any more of these develop.

05/12/19 (4)

Went to bed at 04:40, started reading but interrupted by Blue who enjoys rubbing the side of her head on the Kindle. So it becomes a choice between reading and annoying the cat by pushing her out of the way, or indulging the cat's desire to climb on top (for the warmth?) and leaving the reading for another day.

No contest. Cat wins, every time. It took four years to get here from impossible to handle without animal-handling gloves to the affectionate lap-cat she's become (well, most of the time). I'm not about to send her back down that road, so she wins every time. Little devil!

Good uninterrupted sleep through to 07:55, so about 3 hours five minutes altogether. That's OK for a dex night. Today will be occupied by the search for Betadine from an actual real physical chemist in an actual real shop. None of this modern online shopping business - you never know where those electrons are going.

More seriously, I use Google all the time but when I'm searching for things I'd rather Google didn't associate with me - such as anything to do with myeloma or constipation - I use a search engine with much better security - lxquick / Startpage.com or Duck Duck Go - instead. Results are 99% as good and the flood of search-related ads is greatly reduced.

05/12/19 (3)

04:35 and I'm off to bed despite not really feeling ready. Will probably read for a while - thank heavens for the Kindle! Hope I can get a couple of good hours.

05/11/19 (2)

03:50 -  caught up on two episodes of His Dark Materials, and still wide awake...

Must be Big Bang Theory time. I don't think the widening out of the 4-person core cast (adding Priya, Amy, and Bernadette) has done the show any good. I appreciate the need for character development, but it's taken all the tightness out of the plotting and some of the performances.

05/12/19

I had my weekly Velcade injection at Springfield yesterday. No adverse reaction as usual, although some of the people on the forums make it sound like a close relation of death by lethal injection. Maybe they just don't like needles? It's curious, I read a lot of those things and can't remember anybody complaining about all the injections and canulas and blood test needles. I've had more things stuck into me these last few months than in as many past decades. Except, perhaps, for the three-monthly B12 shots I've been having for several years now. Maybe it's because we all know that with myeloma the lengths of our lives, and the healthiness of what's left of them, depend on just going through with whatever our doctors order, like it or not.

I've just thought of another regular one, if only once a year - I have a 'flu jab booked for the 18th, in the steroid-free week between chemo cycles 2 and 3. Doctors advise that it shouldn't be close to steroids.

As yesterday was a Velcade day, tonight is the first of the week's two sleepless dex nights. Either I'll stay up until 4 or 5 and then get two or three hours, or I'll go to bed early (by my standards) and wake up unable to sleep at 5 or 6. At which point, I'll get up. Luckily there's nothing in either of our diaries for the early morning, so not much time pressure either way. Sue has a wind band  gig at 11:00, which means her leaving about 10:00. I can deal with clearing up the remains of breakfast after she's gone.

Someone identifying only as Richard (could be one of two, I don't know yet) has suggested Betadine for the finger splits. It's an antiseptic and appears to be basically good old iodine available in a wide variety of forms. Neither Amazon nor Google have made it easy to decide what version to go for. An antiseptic seems a good plan as these tiny splits must offer an open route for infection before they heal. Think I'll go to a Boots (big chemist chain) later and see if a pharmacist there can justify his/her existence with some good advice apart from "You should see your doctor". It would be a first. OK, maybe a second.

Advice

From the chemo nurses while in for my Velcade / Bortezomib injection today:

Finger splits: when going to bed, apply generous layer of Pliazon and cotton gloves over the top. Sleep that way. Cotton gloves on order from Up The Jungle, won't get much sleep anyway (first of two Dex nights) before they arrive.

Corner of mouth sores: Vaseline. Which is what I'm doing anyway.

And advice from me to them: get your phone system sorted out! I called four times this morning (to check appointment time) between 08:30 and 12:00. Only got answering machine, left two messages, not received. They know they have an issue (much the same yesterday) but that's my primary number for problems so it's important that it works!

Early diagnosis

The more I learn about this disease, and the more stories I read from fellow myeloma patients, the more obvious it becomes that early diagnosis is very important.
I was lucky - we could have got there a few weeks or even a couple of months earlier than we did, but it wasn't a matter of years. And some people do go through years of intense refractory back pain (and etc.) before anyone thinks of Myeloma as a possible explanation. By that time skeletal damage is serious with spine and hips almost crumbling away, and kidney & liver functions will probably be severely impaired. Even with the best treatment, some of that damage will never be recovered and access to stem cell transplant may be limited.
Anyone with back pain / bone pain that doesn't respond to rest & painkillers should be tested for paraproteins as a matter of routine.

New side effect?

I've developed a couple of small skin sores in the corners of my mouth. The right one has been there for a while and the left one is new. Treating with Vaseline for the moment, will consult the chemo nurses while in for the next Velcade shot tomorrow. I could report it to Yellow Card, but as they completely ignored my last report, why should I bother?

02/12/19 (2)

Did the Zometa thing and more bloods at Springfield this morning. For some reason it took longer than the last couple of times - we were in there over two hours. I was reminded of a minor side-effect (of something, not sure what) that I haven't mentioned before - along with the dry mouth I also get excessive salivation. Seems odd, but that is what happens.
Good short walk in the park afterwards, followed by lunch in the Central Cafe. Bright low winter sun through the trees - very pleasant to walk in, a pain for driving. A reminder that you can't have it all...
Back in Springfield day after tomorrow (Wed) for the next round of Velcade & Dex. And so it goes.
Today's diuretic pill doesn't seem to be having quite as dramatic an effect as yesterday's. Not yet, anyway.
One Laxido per day for the last couple of days. That seems to be getting close to the right dosage.

02/12/19

After four days of diuretics, things starting to happen. Took the pill early afternoon yesterday, spent the next few hours urinating every twenty minutes or so - ample volume and almost water-clear colour. Then - with some relief - things calmed down a bit. Maybe a lot.

Just out of shower and much easier to put slippers on - the swelling around the ankles still very much there, but the bulges over the insteps and around the heels much less pronounced. And when I got up yesterday morning, things looked almost normal.

After breakfast today, back to Springfield for the monthly Zometa infusion. We'll try for a walk in Admiral's Park after that - if I feel up to it. Spent too much of yesterday heaving heavy oil-filled radiators around and I'm not convinced that my low back is really up to it these days. Just hoping that I won't wake up unable to move like in the old days of back trouble.

Diuretic

The Furemoside is starting to work - if volume, frequency, and colour of urine are anything to go by. But no obvious impact on the oedema as yet. Patience, patience...

A neighbour (another Sue) strongly  recommended O'Keefe's Working Hands hand cream for the finger splits, and brought a little sample pot round. Boots carry it, she said, although I don't recall ever seeing it on display. Certainly worth a try, but I don't want to confuse things with the Pliazon.