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...
Sunday, 29 December 2019
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.
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.
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.
Saturday, 28 December 2019
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.
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.
Friday, 27 December 2019
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...
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.
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.
Thursday, 26 December 2019
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.
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.
Wednesday, 25 December 2019
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...
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...
Monday, 23 December 2019
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.
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.
Saturday, 21 December 2019
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!!
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!!
Friday, 20 December 2019
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!
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!
Thursday, 19 December 2019
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.
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.
Wednesday, 18 December 2019
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.
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.
Tuesday, 17 December 2019
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.
Monday, 16 December 2019
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.
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...
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...
Sunday, 15 December 2019
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...
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...
Friday, 13 December 2019
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.
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.
Thursday, 12 December 2019
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.
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.
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.
Wednesday, 11 December 2019
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.
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.
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.
Tuesday, 10 December 2019
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!
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!
Monday, 9 December 2019
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.
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.
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.
Sunday, 8 December 2019
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.
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.
It's on the side of my right wrist, a couple of inches below the thumb. Noticed it while in the shower.
Saturday, 7 December 2019
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...
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...
Friday, 6 December 2019
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.
Thursday, 5 December 2019
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?
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.
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.
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.
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.
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.
Wednesday, 4 December 2019
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!
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.
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.
Tuesday, 3 December 2019
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?
Monday, 2 December 2019
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.
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.
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.
Sunday, 1 December 2019
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.
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.
Saturday, 30 November 2019
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?
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...
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.
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.
Thursday, 28 November 2019
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...
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.
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...
Wednesday, 27 November 2019
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...
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.
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.
Tuesday, 26 November 2019
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.
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.
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.
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.
Monday, 25 November 2019
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...
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...
Sunday, 24 November 2019
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.
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.
Saturday, 23 November 2019
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.
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.
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.
Friday, 22 November 2019
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...
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...
Thursday, 21 November 2019
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...
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.
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.
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.
Tuesday, 19 November 2019
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!
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.
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.
Monday, 18 November 2019
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.
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.
Sunday, 17 November 2019
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!
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...
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...
Saturday, 16 November 2019
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.
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.
Friday, 15 November 2019
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.
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...
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...
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...
Wednesday, 13 November 2019
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...
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...
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...
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...
Tuesday, 12 November 2019
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...
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...
Monday, 11 November 2019
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.
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.
Saturday, 9 November 2019
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.
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.
Friday, 8 November 2019
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?
Thursday, 7 November 2019
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.
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.
Wednesday, 6 November 2019
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...
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...
Tuesday, 5 November 2019
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.
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.
Saturday, 2 November 2019
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.
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...
Friday, 1 November 2019
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.
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.
Wednesday, 30 October 2019
Still in hospital
Until Friday morning at least. Got to finish the course of intravenous antibiotic (Tazoscin? ) here before they let me out.
Tuesday, 29 October 2019
Another notch on the reality stick
Felt a bit low last night. went to bed and woke up two or three hours later shivering cold. Thought it was just a cold night so put a dressing gown on top of the duvet and a pair of socks on my feet and that seemed to do the job. Went back to sleep and woke up at a sensible time but feeling bad and tired out. Sure very sensibly got the digital ear thermometer out and i was 38.5 which is high enough to be a problem. So we got on the phone to the Oncology Centre, had some bloods and a chest x-ray done, and the outcome is that I'm being admitted for a couple of nights while they work out what antibiotics I need and fill me full of them. Obviously I've picked up an infection of some sort.
It's a valuable reminder that although things have been going well so far I am in a more vulnerable state than normal and need to be more thorough monitoring myself. If I'd been a bit quicker on the uptake I might have spotted the raised temperature a few hours earlier, although I'm not sure that would have made much practical difference in the middle of the night.
Live and learn, I suppose. Be more careful!
Feeling sorry for Sue who has lost a whole day dealing with this, and most of tomorrow as well. In some ways it messes her life up more than mine.
Monday, 28 October 2019
28/10/19
We saw Dr.Ch again today to monitor progress. He seems very happy with how things are going. We now have an official Stage under the Revised International Staging System: I'm Stage One. Which is good. Better then Stage Two, and etc.. He also thinks it likely that I'll need just four rather than six cycles of chemo before the SCT (stem cell transplant), which puts the date for that into early March. That would mean most of the rest of March in hospital, followed by April, May, and into June for the recovery period at home. If all goes well, of course! And - assuming the insurers cooperate - it'll be at the London Clinic in Marylebone, where they have some of the top people for these things.
Next thing is another weekly shot of Velcade on Wednesday (which means another two days of Dex with the inevitable sleep-disturbed nights again), and a week after that I have another Velcade and a Zometa infusion as well. Plus the usual bloods at every opportunity.
Also on Wednesday (afternoon), just as a reminder that other things go on as well, I have to take my hearing aids into Specsavers for an update.
Next thing is another weekly shot of Velcade on Wednesday (which means another two days of Dex with the inevitable sleep-disturbed nights again), and a week after that I have another Velcade and a Zometa infusion as well. Plus the usual bloods at every opportunity.
Also on Wednesday (afternoon), just as a reminder that other things go on as well, I have to take my hearing aids into Specsavers for an update.
Sunday, 27 October 2019
Blockage
It must be said in the interests of a complete record: today was the most constipated morning of my life so far. I shall have to upgrade from Sennakot and an evening shot of prune juice to something rather more potent, because I don't want to go through that again...
I'm not going to wish for the alternative side-effect of diarrhoea, but just a little balance between the two would be welcome.
Anyhow, having (eventually) got that out of the way we went to the local Sorting Office to collect a couple of packages of hoodies, t-shirts, etc. from Myeloma UK and went for a very pleasant walk'n'roll in Hylands Park. Lovely late autumn day in the sun, lots of people out with their dogs, and a decent coffee and cake in the Stables courtyard cafe. All left me tired enough for a good doze through the afternoon - stamina is certainly not what it was.
I'm not going to wish for the alternative side-effect of diarrhoea, but just a little balance between the two would be welcome.
Anyhow, having (eventually) got that out of the way we went to the local Sorting Office to collect a couple of packages of hoodies, t-shirts, etc. from Myeloma UK and went for a very pleasant walk'n'roll in Hylands Park. Lovely late autumn day in the sun, lots of people out with their dogs, and a decent coffee and cake in the Stables courtyard cafe. All left me tired enough for a good doze through the afternoon - stamina is certainly not what it was.
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