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.
27/10/19 Bill Turnbull programme
Yesterday we watched Bill Turnbull's TV programme about living with prostate cancer. A part of it was about the shock of getting the cancer diagnosis, and not for the first time we seem to be unusual because it just wasn't like that for us. I knew I had MGUS, and therefore a slightly increased risk of myeloma, for a year but certainly didn't expect it so soon - if I had done, we might have spotted a couple of signs a month or three earlier. Sue was aware, but had I think put it pretty much out of her mind. We were 95% sure it was myeloma for a few weeks before it was formally confirmed, so neither of us had much in the way of "denial" to be challenged. For me, it's just the next hand of cards that life has dealt in our direction, to be played as best we can. There's no point complaining that the dealer isn't being fair, you just get on with the game.
The rest of the Turnbull programme was about alternative treatments, and that felt wrong all the way. For a start, his conventional treatment was going quite well and there was no real case made for going off in other directions. The section on cannabis seemed designed more to show how daring he was by fudging the borders of legality on TV rather than anything else, and it didn't do anything for his PSA levels. Then he moved on to a vegetarian diet and that didn't do much good either - the programme ended with his PSA back up into unpleasantly high territory. And never any real contrast with the orthodox routes of radiotherapy and surgery. He just seemed to be floundering around, looking for a magic cure but unable to stick with anything for long enough to give it a chance.
If there's one thing I take from a rather messily constructed programme, it's this: choose your path, and stick to it. No harm in a little wandering to the side here and there, but don't leave the path altogether. Others have been down the road before, so learn from them what works and what doesn't.
The rest of the Turnbull programme was about alternative treatments, and that felt wrong all the way. For a start, his conventional treatment was going quite well and there was no real case made for going off in other directions. The section on cannabis seemed designed more to show how daring he was by fudging the borders of legality on TV rather than anything else, and it didn't do anything for his PSA levels. Then he moved on to a vegetarian diet and that didn't do much good either - the programme ended with his PSA back up into unpleasantly high territory. And never any real contrast with the orthodox routes of radiotherapy and surgery. He just seemed to be floundering around, looking for a magic cure but unable to stick with anything for long enough to give it a chance.
If there's one thing I take from a rather messily constructed programme, it's this: choose your path, and stick to it. No harm in a little wandering to the side here and there, but don't leave the path altogether. Others have been down the road before, so learn from them what works and what doesn't.
Thursday 24 October 2019
24/10/19
A different kind of day today. Went to the dentist to begin a crown replacement - when he did an extraction some time ago he found a tiny hole under the crown on an adjacent tooth, which would eventually have led to decay and a possible infection route into the bone, which is something I don't need right now. Some fancy new dental imaging technology, which meant he spent most of the time looking at a screen rather than at my teeth, which was slightly disconcerting. Back in a fortnight to have the temporary crown removed and a "permanent" new one in its place. There was some concern about doing the dentistry while I'm on bisphosphonate bone-strengthener, because there is a slight chance of "osteonecrosis if the jaw" which might have meant big problems. But no sign of ONJ and Dr.Ch said OK to go ahead as long as the dentistry was confined to the top of the tooth and wouldn't go into the bone at all. Which it was, and didn't.
Dental anaesthetic now starting to wear off, which is just as well as I have a couple of phone calls to make this afternoon.
Walking is still good - haven't quite made it up the stairs without holding on, but it's not far away and things usually improve as the day goes on. It's probably pretty much as good as it's ever going to get, because the damage to the hip joint caused by that lesion and "extra-medullary mass" isn't going to go away. I suppose a hip replacement might be an option at some stage, but that wouldn't be straightforward. This is guesswork, but I imagine that there would need to be some surgical reconstruction / reinforcement of the weakened bone on the pelvic side of the joint to give something solid to anchor an implant to.
No unpleasant side-effects from yesterday's Velcade injection. That's good.
As for the Dex sleeplessness - went to bed at 04:45 last night and read for probably half an hour. Woke up about 07:30, slept again till 08:30, then nothing until got up a bit after 09:00. Still lots of Big Bang Theories to keep me going in the early hours - not sure what I'll do when I finally get to the end of those. Had another 20mg dexamethasone this morning, so expecting a repeat performance tonight...
Dental anaesthetic now starting to wear off, which is just as well as I have a couple of phone calls to make this afternoon.
Walking is still good - haven't quite made it up the stairs without holding on, but it's not far away and things usually improve as the day goes on. It's probably pretty much as good as it's ever going to get, because the damage to the hip joint caused by that lesion and "extra-medullary mass" isn't going to go away. I suppose a hip replacement might be an option at some stage, but that wouldn't be straightforward. This is guesswork, but I imagine that there would need to be some surgical reconstruction / reinforcement of the weakened bone on the pelvic side of the joint to give something solid to anchor an implant to.
No unpleasant side-effects from yesterday's Velcade injection. That's good.
As for the Dex sleeplessness - went to bed at 04:45 last night and read for probably half an hour. Woke up about 07:30, slept again till 08:30, then nothing until got up a bit after 09:00. Still lots of Big Bang Theories to keep me going in the early hours - not sure what I'll do when I finally get to the end of those. Had another 20mg dexamethasone this morning, so expecting a repeat performance tonight...
23/10/19 (3)
For the sake of completeness, here are tonight's pills:
There are mid-day and evening ones as well, between one and three at a time. No photos of them.
There are mid-day and evening ones as well, between one and three at a time. No photos of them.
Wednesday 23 October 2019
23/10/19 (2)
We now have the full results from the bloods of 14/10 and 22/10. They mostly look pretty good to my amateur eyes. Red blood cells are a little low, will ask Dr.Ch about that on Monday. No paraprotein level - they won't check that again until the start of the next 5-week chemo cycle - but the decent protein and globulin levels mean that the PPs can't be too high.
My kappa:lambda free light chain ratio (sorry, this is a bit technical) is high, and I'm having trouble finding online resources to help understand that. Another question for Dr.Ch. He says he likes questions... We also need to get an answer out of him as to what stage I'm at. There are two staging systems - according to the old-fashioned one I reckon I'm in a grey area between 1 and 2 (out of 3), and the new one requires knowing my beta2 immunoglobulin level, and last time he said he hadn't got that through from Broomfield yet.
Again, no early reaction to the Velcade injection (or the B12) so all looking good. And the walking is 95% of the way back to its best - almost made it up the stairs without holding on to anythng. But not quite. That's a target for tomorrow.
23/10/19
Chemo today at 14:00 - my second Velcade injection, and of course the pills carry on as normal. Started another two days of Dex this morning, plus thalidomide daily and the "supportive" antibiotics, anti-viral, anti-gout, etc.. Here's today's after-breakfast collection:
Expecting to get FBC results from yesterday's blood samples - both red and white cell numbers may be down because of the chemo.
At 16:20, the GP surgery for my regular 3-monthly B12 injection. Tomorrow, the dentist to begin a crown replacement. It's all go...
Expecting to get FBC results from yesterday's blood samples - both red and white cell numbers may be down because of the chemo.
At 16:20, the GP surgery for my regular 3-monthly B12 injection. Tomorrow, the dentist to begin a crown replacement. It's all go...
Tuesday 22 October 2019
22/10/19
Not much to write about these last few days. Mainly I've been taking it easy trying to undo the damage caused by that over-enthusiastic walk in Thorndon Country Park. I'm on the way back to where I was, but still lurching to the left too much and can't do the stairs as well as I could a few days ago.
Later today, off to Springfield for more bloods, and Week 2 of chemo starts on Wednesday with another Velcade injection. Should also find out how the blood counts are doing, and whether I need yet more pills to boost red and/or white cell production. Probably too soon for that yet.
Later today, off to Springfield for more bloods, and Week 2 of chemo starts on Wednesday with another Velcade injection. Should also find out how the blood counts are doing, and whether I need yet more pills to boost red and/or white cell production. Probably too soon for that yet.
Saturday 19 October 2019
19/10/19 (2)
OK, I must have overdone it a bit pushing Walter around that country park earlier. Left hip now tightened up, very stiff, and a bit sore. Hope it'll be better by the morning - we have a rather gentler "short" walk in Admiral's Park planned.
It's a warning against over-enthusiasm. Must remember that hip joint has been in a bad way for months and has had very little real exercise for all that time. I can take a small setback or two, but don't want to risk knocking it right back to where it was.
It's a warning against over-enthusiasm. Must remember that hip joint has been in a bad way for months and has had very little real exercise for all that time. I can take a small setback or two, but don't want to risk knocking it right back to where it was.
19/10/19
We had a good long walk today in Thorndon South Country Park near Brentwood. Some rough ground, muddy tracks, and a couple of hilly bits but Walter Walker performed magnificently. No way I could have done that a few weeks ago.
My new approach to dex-related sleeplessness seems to be working better. I just stay up in front of the computer and the TV until I start feeling just slightly sleepy, then go to bed - that's been a bit after 04:00 for the last couple of days. I then sleep through for four or five hours, which seems to be enough combined with a few dozes during the day. The alternative of going to bed at my usual 02:00 or so and then getting just an hour and a half of sleep followed by a few minutes asleep here and there in my study chair didn't work out too well.
Anyway, life must go on as normal, as far as possible, and it's good to get out of the house!
My new approach to dex-related sleeplessness seems to be working better. I just stay up in front of the computer and the TV until I start feeling just slightly sleepy, then go to bed - that's been a bit after 04:00 for the last couple of days. I then sleep through for four or five hours, which seems to be enough combined with a few dozes during the day. The alternative of going to bed at my usual 02:00 or so and then getting just an hour and a half of sleep followed by a few minutes asleep here and there in my study chair didn't work out too well.
Anyway, life must go on as normal, as far as possible, and it's good to get out of the house!
 |
| Sue off-trail |
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| View across the Thames estuary |
Thursday 17 October 2019
Pill boxes
Thanks to Amazon, I now have three seven-day pill boxes for the total of twenty different pills I have to take. One box for the routine stuff - blood pressure, statin, supplements etc., one box for the never-ending paracetamols, and one box for the chemo drugs and "supportive" ones. Plus a huge spreadsheet to keep track of everything and tick off the pills as I take them. It's quite an organisational nightmare, and very easy to see how people could get completely confused and end up taking all the wrong things at the wrong times, or just giving up on it altogether.
Pill photos
We were advised by the Oncology Centre to do this: photos of all the pills. For each one I've got (1) a photo of the box with drug name and dose, (2) a photo of a pill alongside a £1 coin for size reference, (3) a close-up photo of the pill showing any markings, and (4) a photo of the foil strip.
Quite an operation, it took the best part of the morning.
Altogether, that's twenty different pills! And I used to think three was more than enough...
Quite an operation, it took the best part of the morning.
Altogether, that's twenty different pills! And I used to think three was more than enough...
Side effect
I'm back on a two-day burst of dexamethasone as part of the chemo, and the strange side-effect changing the taste of fruit juices has returned. It makes orange juice quite unpleasant, and doesn't do a lot for the now essential prune juice either. But on past form it will only last a couple of days.
I'll confirm it with Yellow Card - they had no record of it before.
I'll confirm it with Yellow Card - they had no record of it before.
Walking
Walking is really good today. Just climbed straight up the stairs, alternate legs, without holding on to anything either side. Haven't done that since this all began.
But not quite this good yet:
But not quite this good yet:
16/10/19 (2) Chemo Day One
We got there. Day One of Chemotherapy Cycle 1 of Course 1.
A cycle lasts five weeks, the fifth one having no Velcade or steroids but everything else. A course is four to six cycles, depending on blood tests and scans. And after that, the transplant...
I'm on the standard "first line" chemo cocktail of VTD - Velcade/Bortezomib by subcutaneous injection, Thalidomide (yes, really!) and 20mg Dexamethasone for the first two days only of each of the first four weeks of cycle. Only the Velcade on Day One requires a hospital visit to the Chemotherapy Centre, the rest are pills taken at home.
Got that OK?
Then there's a specific antibiotic for pneumonia on just Mondays, Wednesdays, and Fridays and a more general one once a day for everything else, an anti-viral twice a day to keep viruses at bay, and an anti-gout(!) pill once a day because the breakdown products of dead cancer cells can cause release of uric acid, and if that crystallises out it causes the extremely painful symptoms of gout.
Side-effects may include constipation (they've given me something for that in case of need and if my prune juice aperitif isn't potent enough), diarrhoea (and something else for that) and nausea and vomiting (an anti-emetic for that too). And peripheral neuropathy and various nasties including reduced blood cell counts, all of which will mean even more pills and/or changes in dosages or even changing to different drugs. We'll deal with those if and when they turn up.
That's all on top of the Omeprazole (anti-acid) and the Xarelto (blood thinner) and the Amitriptyline (nerve pain from trapped nerve in right thigh) and the Avorstatin (statin) and the Felodipine (blood pressure). And the endless Paracetamols. Not forgetting the Zometa (bisphosphonate bone-strengthener) that I have on a drip in the Oncology Centre once every 28 days. And the B12 injetion every three months. And the Optivision and turmeric supplements I take every day anyway.
That's why I need all the 7-day pill-boxes and a plan. Spent most of the evening with spreadsheets and checklists for what to take and when.
Next thing, after some good advice, will be to take photos for every pill, including packet and label, to help identify which pill is which when I inevitably lose track or drop a whole day's worth on the floor and have to sort out which is which...
It wasn't the best day at the Oncology Centre. We arrived on time for our 10:30 appointment, but then had to wait for other people to be dealt with before we got called in for the Velcade injection after fifty minutes. That took another ten or so, then we had another wait of an hour before a pharmacist arrived with all the pills and to talk us through them. We know from overheard phone calls that the pharmacy were still making up the prescriptions, even though they must have had the details for days and really should have had it all ready the day before. We can make some allowances because the pharmacy has moved to rather cramped temporary accommodation while its old home is being enlarged and improved. But they still should have had my stuff sorted well in advance. Overall, we had two hours of waiting time. At least we got a free lunch of egg mayo sandwiches out of it!
Had a short walk in Admiral's Park afterwards - just from the car park down to the first bridge and back with only one stick. I coped OK but still very slow compared to Sue, even though I thought I was doing a decent pace. She would easily have done it twice in the time I took to go round once.
Walking improved later at home, getting around well with no sticks.
The blood glucose test turned out normal as I expected, so no need for a fasting test. And so far at least (02:18 on 17/10/19) the anticipated drowsiness produced by thalidomide and others has failed to appear. Still wide awake, possibly under the influence of being back on the steroids. Trying a new plan today - will stay up for a while longer and then try for sleep if/when I feel more like it. There's always another Big Bang Theory to keep me going... As long as I get four hours or so that'll be OK. Seems to be as much as I need these days, plus occasional naps during the day. Sue would say almost every time I sit down..
Quite a day, one way and another.
A cycle lasts five weeks, the fifth one having no Velcade or steroids but everything else. A course is four to six cycles, depending on blood tests and scans. And after that, the transplant...
I'm on the standard "first line" chemo cocktail of VTD - Velcade/Bortezomib by subcutaneous injection, Thalidomide (yes, really!) and 20mg Dexamethasone for the first two days only of each of the first four weeks of cycle. Only the Velcade on Day One requires a hospital visit to the Chemotherapy Centre, the rest are pills taken at home.
Got that OK?
Then there's a specific antibiotic for pneumonia on just Mondays, Wednesdays, and Fridays and a more general one once a day for everything else, an anti-viral twice a day to keep viruses at bay, and an anti-gout(!) pill once a day because the breakdown products of dead cancer cells can cause release of uric acid, and if that crystallises out it causes the extremely painful symptoms of gout.
Side-effects may include constipation (they've given me something for that in case of need and if my prune juice aperitif isn't potent enough), diarrhoea (and something else for that) and nausea and vomiting (an anti-emetic for that too). And peripheral neuropathy and various nasties including reduced blood cell counts, all of which will mean even more pills and/or changes in dosages or even changing to different drugs. We'll deal with those if and when they turn up.
That's all on top of the Omeprazole (anti-acid) and the Xarelto (blood thinner) and the Amitriptyline (nerve pain from trapped nerve in right thigh) and the Avorstatin (statin) and the Felodipine (blood pressure). And the endless Paracetamols. Not forgetting the Zometa (bisphosphonate bone-strengthener) that I have on a drip in the Oncology Centre once every 28 days. And the B12 injetion every three months. And the Optivision and turmeric supplements I take every day anyway.
That's why I need all the 7-day pill-boxes and a plan. Spent most of the evening with spreadsheets and checklists for what to take and when.
Next thing, after some good advice, will be to take photos for every pill, including packet and label, to help identify which pill is which when I inevitably lose track or drop a whole day's worth on the floor and have to sort out which is which...
It wasn't the best day at the Oncology Centre. We arrived on time for our 10:30 appointment, but then had to wait for other people to be dealt with before we got called in for the Velcade injection after fifty minutes. That took another ten or so, then we had another wait of an hour before a pharmacist arrived with all the pills and to talk us through them. We know from overheard phone calls that the pharmacy were still making up the prescriptions, even though they must have had the details for days and really should have had it all ready the day before. We can make some allowances because the pharmacy has moved to rather cramped temporary accommodation while its old home is being enlarged and improved. But they still should have had my stuff sorted well in advance. Overall, we had two hours of waiting time. At least we got a free lunch of egg mayo sandwiches out of it!
Had a short walk in Admiral's Park afterwards - just from the car park down to the first bridge and back with only one stick. I coped OK but still very slow compared to Sue, even though I thought I was doing a decent pace. She would easily have done it twice in the time I took to go round once.
Walking improved later at home, getting around well with no sticks.
The blood glucose test turned out normal as I expected, so no need for a fasting test. And so far at least (02:18 on 17/10/19) the anticipated drowsiness produced by thalidomide and others has failed to appear. Still wide awake, possibly under the influence of being back on the steroids. Trying a new plan today - will stay up for a while longer and then try for sleep if/when I feel more like it. There's always another Big Bang Theory to keep me going... As long as I get four hours or so that'll be OK. Seems to be as much as I need these days, plus occasional naps during the day. Sue would say almost every time I sit down..
Quite a day, one way and another.
Wednesday 16 October 2019
16/10/19
Good weather yesterday so we took Walter Walker off for a trundle around one of our favourite places, Marks Hall Arboretum near Colchester. Walter performed magnificently over some quite difficult ground in a few places, although most of the paths are well maintained and easy.
Autumn colours not fully developed yet, but very splendid anyway. We both felt our spirits thoroughly lifted. Here's the Upper Lake with the Walled Garden and the Gardener's Cottage in the background.
Later today, Chemotherapy Cycle 1 starts...
Side-effects log: the excessive urination thing has been much less marked for the last couple of days (something of a relief!)
Autumn colours not fully developed yet, but very splendid anyway. We both felt our spirits thoroughly lifted. Here's the Upper Lake with the Walled Garden and the Gardener's Cottage in the background.
Later today, Chemotherapy Cycle 1 starts...
Side-effects log: the excessive urination thing has been much less marked for the last couple of days (something of a relief!)
Tuesday 15 October 2019
15/10/19 (2)
Here we go again. Went to bed at 02:30, wide wake at 03:30...
Maybe it's thinking about the chemo that is to come, maybe it isn't. Either way, it's likely to be a couple of hours before Ill feel like trying again
(Later) That worked! Slept well till 09:10.
Maybe it's thinking about the chemo that is to come, maybe it isn't. Either way, it's likely to be a couple of hours before Ill feel like trying again
(Later) That worked! Slept well till 09:10.
15/10/19
Saw Dr.Ch again at Springfield. he says OK to go ahead with the chemo starting on the 16th.
I reported the excessive urination I've been having for ten days or so and as I expected he added glucose to the bloods I had done after seeing him. If that turns out to be high - and I doubt that it will - that will be followed up by a fasting test. I'm keeping this card up my sleeve for now, but I have a blood glucose monitor and have been keeping an occasional eye on my glucose levels for years, just in case. I haven't had a 50+ year Type I diabetic as a good friend for all that time without learning a thing or two. My usual level 90+ mins after a meal is 6.5 to 7.0, and I've just tested at 7.2 (still comfortably below the <7.8 standard for non-diabetics). Not that I monitor BSL obsessively - I may go months without checking, just as I do with blood pressure. However, increase in BSL is a recognised side-effect of steroids like high-dose dex, so good to keep an eye on it.
The chemo regime for my 5-week cycle will be, as I understand it:
Velcade / Bortemozib by subcutaneous injection, Day One of weeks 1 - 4, not week 5. four to six cycles altogether, depending on how it goes.
Dexamethasone 20mg Day One and Day Two of weeks 1 - 4, not "recovery" week 5.
Thalidomide (dose unknown) daily throughout week 1 - 5.
Plus assorted antibiotics, anti-virals, etc. etc.. Schedules as yet unknown.
Sounds like fun...
I reported the excessive urination I've been having for ten days or so and as I expected he added glucose to the bloods I had done after seeing him. If that turns out to be high - and I doubt that it will - that will be followed up by a fasting test. I'm keeping this card up my sleeve for now, but I have a blood glucose monitor and have been keeping an occasional eye on my glucose levels for years, just in case. I haven't had a 50+ year Type I diabetic as a good friend for all that time without learning a thing or two. My usual level 90+ mins after a meal is 6.5 to 7.0, and I've just tested at 7.2 (still comfortably below the <7.8 standard for non-diabetics). Not that I monitor BSL obsessively - I may go months without checking, just as I do with blood pressure. However, increase in BSL is a recognised side-effect of steroids like high-dose dex, so good to keep an eye on it.
The chemo regime for my 5-week cycle will be, as I understand it:
Velcade / Bortemozib by subcutaneous injection, Day One of weeks 1 - 4, not week 5. four to six cycles altogether, depending on how it goes.
Dexamethasone 20mg Day One and Day Two of weeks 1 - 4, not "recovery" week 5.
Thalidomide (dose unknown) daily throughout week 1 - 5.
Plus assorted antibiotics, anti-virals, etc. etc.. Schedules as yet unknown.
Sounds like fun...
Monday 14 October 2019
14/10/19
Not a lot to write about. Things much the same, still wanting to get that chemo started. Have received the spring and summer issues of the Myeloma Matters magazine from MyelomaUK and we've both read them thoroughly. Lots of useful information about what may lie ahead further down the road...
Have signed up for the RUDY study into rare diseases - Myeloma, affecting fewer than 1 in 2,000 people, apparently qualifies. I understand it's only about 2% of all blood cancers, which includes leukaemia, lymphoma (Hodgkin's and otherwise), and several others.
I'm apprehensive about the likely chemo side-effects - nausea / vomiting, diarrhoea, peripheral neuropathy, and more. But I'm equally determined to get through whatever I have to get through. And of course there are two of us in this and we don't yet know how demanding Sue's role as carer is going to be through the chemo and then the transplant. The one thing I'm sure of is that it's vital that she continues to live her own life with her music and her friends as well. Looking after me must come second to looking after herself.
Have signed up for the RUDY study into rare diseases - Myeloma, affecting fewer than 1 in 2,000 people, apparently qualifies. I understand it's only about 2% of all blood cancers, which includes leukaemia, lymphoma (Hodgkin's and otherwise), and several others.
I'm apprehensive about the likely chemo side-effects - nausea / vomiting, diarrhoea, peripheral neuropathy, and more. But I'm equally determined to get through whatever I have to get through. And of course there are two of us in this and we don't yet know how demanding Sue's role as carer is going to be through the chemo and then the transplant. The one thing I'm sure of is that it's vital that she continues to live her own life with her music and her friends as well. Looking after me must come second to looking after herself.
Saturday 12 October 2019
Pill packaging
Saturday is Pill Organising Day - two seven-day pill-boxes to fill, four compartments per day.
After the organising, there's the Disposal Of The Packaging to do...
After the organising, there's the Disposal Of The Packaging to do...
12/10/19 (2)
Not myeloma-related (probably) but you never know...
This evenng, for the first time since Dr.Ku put me on Amitryptiline for it a few months ago, I got just a couple of tiny reminders of the long-established right thigh problem which we think is due to some sort of nerve impingement. It happened while cooking dinner, which was only a quick stir-fry so no unusual amount of standing etc. to trigger it. Maybe should ask him to go back to the 20mg dose I was on for a while IIRC. He argues it's good for myeloma-related issues as well so why not?
This evenng, for the first time since Dr.Ku put me on Amitryptiline for it a few months ago, I got just a couple of tiny reminders of the long-established right thigh problem which we think is due to some sort of nerve impingement. It happened while cooking dinner, which was only a quick stir-fry so no unusual amount of standing etc. to trigger it. Maybe should ask him to go back to the 20mg dose I was on for a while IIRC. He argues it's good for myeloma-related issues as well so why not?
12/10/19
Here we go again...
Went to bed 02:15. In front of the computer again, wide awake, at 03:00. I know there's no point trying to sleep again for an hour or two at least.
Can't blame steroids this time.
Better sleep at the second try, till 08:30.
I feel in a bit of a limbo state, just waiting for the chemo to start. Get on with it!
Went to bed 02:15. In front of the computer again, wide awake, at 03:00. I know there's no point trying to sleep again for an hour or two at least.
Can't blame steroids this time.
Better sleep at the second try, till 08:30.
I feel in a bit of a limbo state, just waiting for the chemo to start. Get on with it!
Friday 11 October 2019
11/10/19
Got up at 08:20, which is good and suggests that the steroid-induced sleeplessness is now pretty much gone. But I did get up two or three times during the night for bathroom visits. Before all this started it was rare for me to get up even once during the night. The excessive urination has been going on about a week now and I'm starting to think thoughts about things like blood sugar levels. Will start an investigation, I think, as well as reporting it to Dr.Ch on Monday. Increased urine production is a recognised dexamethasone side-effect, but it didn't start until the third batch.
Thursday 10 October 2019
1010/19 (2)
Reasonably good day today. Slept better, the hip continues its slow and steady improvement - at one point today I was walking around the house with no stick and hardly any leftward lurch or discomfort. It should be quite a bit better by the time we next see Dr.Ch pre-chemo on Monday. And all I want to do now is to get past this rest & recovery period and get the chemo started.
Music of Cream
I'm a huge fan of 1960's "supergroup" Cream. They were simply the best band ever. No contest. Jack Bruce died a few years back, Ginger Baker just a few days ago. Eric Clapton survives, but arthritis in his hands means he hardly plays live any more.
I booked a ticket months ago for a tour date at the Cadogan Hall by "Music of Cream" - a band made up of Jack's son Malcolm on bass, Ginger's son Kofi on drums, and Eric's nephew Will John on guitar. They play the old music, with few modern twists as well.
I never heard Cream live back in the day. I did go to one of the 2005 re-union dates at the Albert Hall (before that tour fell apart with yet another Bruce v Baker bust-up in New York). I've heard a couple of tribute bands. I was really excited about this Cadogan Hall gig, and it's on the 11th before possible chemo complications kick in. The only problem about getting there is my reduced mobility, but I was happy to pay for an Uber from my usual Just Park spot to the Cadogan Hall just off Sloane Square in order to avoid the difficulties of the Tube.
But but but... Extinction Rebellion. They have a huge protest in Westminster, just a couple of tube stops and little more than a short (normal) walk from Sloane Square and the Cadogan Hall. Even if the full-scale protests don't extend that far there's bound to be very great disruption of travel from people coming and going to the demonstrations and others trying to find ways around it to deal with their ordinary lives. It could be complete chaos. With two sticks and very limited range, dare I risk getting caught up in all that? One push and a fall and with my various bone lesions I could end up with a fractured pelvis or spine and then everything would be a disaster...
I really want to get there. It would mean a hell of a lot to me. But all reason says I should abandon the idea, just as I abandoned the ENO season.
If not for XR I would certainly drive to Redbridge, park in my usual Just Park spot, and go by Uber to the Cadogan Hall door. And back again, even with Uber's post-theatre surge pricing. But as things are, with every possibility of the roads and public transport around Westminster and Sloane Square being full of XR protesters, I don't think I can risk it. I know Sue doesn't want me to go. If I do go and it goes wrong, there'll be nobody there to help.
A difficult choice.I'll hate myself for giving in if I don't go. I'll be taking a huge chance if I do. Don't know what to do.
To quote a Cream lyric:
I booked a ticket months ago for a tour date at the Cadogan Hall by "Music of Cream" - a band made up of Jack's son Malcolm on bass, Ginger's son Kofi on drums, and Eric's nephew Will John on guitar. They play the old music, with few modern twists as well.
I never heard Cream live back in the day. I did go to one of the 2005 re-union dates at the Albert Hall (before that tour fell apart with yet another Bruce v Baker bust-up in New York). I've heard a couple of tribute bands. I was really excited about this Cadogan Hall gig, and it's on the 11th before possible chemo complications kick in. The only problem about getting there is my reduced mobility, but I was happy to pay for an Uber from my usual Just Park spot to the Cadogan Hall just off Sloane Square in order to avoid the difficulties of the Tube.
But but but... Extinction Rebellion. They have a huge protest in Westminster, just a couple of tube stops and little more than a short (normal) walk from Sloane Square and the Cadogan Hall. Even if the full-scale protests don't extend that far there's bound to be very great disruption of travel from people coming and going to the demonstrations and others trying to find ways around it to deal with their ordinary lives. It could be complete chaos. With two sticks and very limited range, dare I risk getting caught up in all that? One push and a fall and with my various bone lesions I could end up with a fractured pelvis or spine and then everything would be a disaster...
I really want to get there. It would mean a hell of a lot to me. But all reason says I should abandon the idea, just as I abandoned the ENO season.
If not for XR I would certainly drive to Redbridge, park in my usual Just Park spot, and go by Uber to the Cadogan Hall door. And back again, even with Uber's post-theatre surge pricing. But as things are, with every possibility of the roads and public transport around Westminster and Sloane Square being full of XR protesters, I don't think I can risk it. I know Sue doesn't want me to go. If I do go and it goes wrong, there'll be nobody there to help.
A difficult choice.I'll hate myself for giving in if I don't go. I'll be taking a huge chance if I do. Don't know what to do.
To quote a Cream lyric:
I'm so glad
I'm so glad
I'm glad, I'm glad, I'm glad
I'm so glad
I'm glad, I'm glad, I'm glad
Don't know what to do
Don't know what to do
Don't know what to do
Don't know what to do
Don't know what to do
Tired of weeping
Tired of moaning
Tired of crying for you
Tired of moaning
Tired of crying for you
I'm so glad
I'm so glad
I'm glad, I'm glad, I'm glad
I'm so glad
I'm glad, I'm glad, I'm glad
Tired of weeping
Tired of moaning
Tired of groaning for you
Tired of moaning
Tired of groaning for you
10/10/19
Continued (but slow) improvement in the post-radiotherapy reaction yesterday. I'm hoping I'll be close to "normal" again by the time we see Dr.Ch again on Monday. Routine painkillers have been good enough, no need to hit the Oramorph bottle again.
Went into Chelmsford in the morning, mainly to do some business at the bank. Felt rather strange on the familiar streets with Walter Walker. Need to get used to that - even with maximum likely improvement I'm still going to need walking aids outside and on unfamiliar ground for quite a while, if not for as long as this lasts.
Got home, had a bit of lunch, and fell asleep for most of the afternoon. Woke up, made dinner, did as bit of research online, fell asleep again. Now, of course (01:20) wide awake! Don't know if all that sleep was just catching up on the many hours I've missed recently, or evidence of post-radiotherapy fatigue, or what. One good sign is that the excessive urination of the last couple of days has moderated a bit. Will need to tell Dr.Ch about that.
Had a good response on the Myeloma UK forum - encouraging about some aspects of the transplant with tips about getting trough the intensive chemo stage where they do their best to wipe out your immune system altogether before re-booting it with stem calls.
Sue has joined a Facebook Myeloma Carers group (I think that's what it is) and has been a bit overwhelmed by all the bad stories people post on there. I keep telling her that these groups attract negativity for all sorts of reasons, and rarely show the good stories as well. A bit like TripAdvisor.
Went into Chelmsford in the morning, mainly to do some business at the bank. Felt rather strange on the familiar streets with Walter Walker. Need to get used to that - even with maximum likely improvement I'm still going to need walking aids outside and on unfamiliar ground for quite a while, if not for as long as this lasts.
Got home, had a bit of lunch, and fell asleep for most of the afternoon. Woke up, made dinner, did as bit of research online, fell asleep again. Now, of course (01:20) wide awake! Don't know if all that sleep was just catching up on the many hours I've missed recently, or evidence of post-radiotherapy fatigue, or what. One good sign is that the excessive urination of the last couple of days has moderated a bit. Will need to tell Dr.Ch about that.
Had a good response on the Myeloma UK forum - encouraging about some aspects of the transplant with tips about getting trough the intensive chemo stage where they do their best to wipe out your immune system altogether before re-booting it with stem calls.
Sue has joined a Facebook Myeloma Carers group (I think that's what it is) and has been a bit overwhelmed by all the bad stories people post on there. I keep telling her that these groups attract negativity for all sorts of reasons, and rarely show the good stories as well. A bit like TripAdvisor.
Wednesday 9 October 2019
Sleep
Big improvement. Got up a few times in the night, but not finally until 08:30.
That's A LOT better.
That's A LOT better.
Weight
One effect of the steroids has been a bit of weight gain - something I don't need. So I stated a campaign at the weekend.
Sun morning, first thing, our bathroom scales: 91.7kg / 14st 6.2 lbs
Wed morning, first thing, our bathroom scales: 89.9kg / 14st 2.2 lbs
Mainly water loss, I know (as has been very evident the last day or two!), but still a good start.
Sun morning, first thing, our bathroom scales: 91.7kg / 14st 6.2 lbs
Wed morning, first thing, our bathroom scales: 89.9kg / 14st 2.2 lbs
Mainly water loss, I know (as has been very evident the last day or two!), but still a good start.
Reality check
One thought I keep coming back to, and again this morning (01:15) after Sue's understandable and emotional reaction to sympathy yesterday: have I really, fully, faced up to this yet?
The standard answer is yes, I had a year with MGUS knowing that development into Myeloma was possible (if unlikely, and I didn't expect it this soon!) But at least the thought was in the back of my mind so the diagnosis wasn't a bolt from the blue. It was rather more like that for Sue, because, well, she didn't have the MGUS. It was a couple of reality levels further away for her, therefore a bigger shock when the time came to jump those levels.
When I voiced some of these thoughts to my GP Dr.Ku he just said "Still in denial?" I hadn't thought of it quite that way, but he has something of a knack for getting to the heart of a point.
I don't think it's denial. I'm not rejecting the diagnosis or challenging the validity of the test results, or the treatment plan I've been given or anything like that. But maybe it's a bit more subtle. Maybe I'm concentrating on "one step at a time" to the point of refusing to see the big picture and where this is heading.
Again, I don't think so. I've said before that I'm almost relieved to know what will most probably be on my death certificate. And I'm sure that some of the alternatives could be a lot worse. I've said to several people that we all know where we're going in the end, I just know a bit more than most about what my path to that place is likely to be. That's a gift I might prefer not to have, but the cards have been dealt and I'm happy with the ones I've got.
Maybe the one thing that would make a difference would be if I were told that I couldn't have a transplant after all and that my likely lifespan were to be reduced to just a few years and most of them in a bad way with one infection after another and all the rest of myeloma - bone pain, fatigue, fractures, a non-functional gut, and a compromised immune system. Given all that, I might well be looking into the train timetables for a one-way ticket to Switzerland, But we're not there yet. Not by a long way. There's a long road to follow, and I aim to make the best I can of every inch of it.
But that nagging mind-worm of doubt is still there. Have I really, truly, taken in what this means for both of us? Maybe the answer will only become clear further along...
The standard answer is yes, I had a year with MGUS knowing that development into Myeloma was possible (if unlikely, and I didn't expect it this soon!) But at least the thought was in the back of my mind so the diagnosis wasn't a bolt from the blue. It was rather more like that for Sue, because, well, she didn't have the MGUS. It was a couple of reality levels further away for her, therefore a bigger shock when the time came to jump those levels.
When I voiced some of these thoughts to my GP Dr.Ku he just said "Still in denial?" I hadn't thought of it quite that way, but he has something of a knack for getting to the heart of a point.
I don't think it's denial. I'm not rejecting the diagnosis or challenging the validity of the test results, or the treatment plan I've been given or anything like that. But maybe it's a bit more subtle. Maybe I'm concentrating on "one step at a time" to the point of refusing to see the big picture and where this is heading.
Again, I don't think so. I've said before that I'm almost relieved to know what will most probably be on my death certificate. And I'm sure that some of the alternatives could be a lot worse. I've said to several people that we all know where we're going in the end, I just know a bit more than most about what my path to that place is likely to be. That's a gift I might prefer not to have, but the cards have been dealt and I'm happy with the ones I've got.
Maybe the one thing that would make a difference would be if I were told that I couldn't have a transplant after all and that my likely lifespan were to be reduced to just a few years and most of them in a bad way with one infection after another and all the rest of myeloma - bone pain, fatigue, fractures, a non-functional gut, and a compromised immune system. Given all that, I might well be looking into the train timetables for a one-way ticket to Switzerland, But we're not there yet. Not by a long way. There's a long road to follow, and I aim to make the best I can of every inch of it.
But that nagging mind-worm of doubt is still there. Have I really, truly, taken in what this means for both of us? Maybe the answer will only become clear further along...
Tuesday 8 October 2019
08/10/19 (2)
My plan of maximum rest seems to have worked quite well. Not much pain today (either bone or soft tissue) and the "lurch to the left" in walking without a stick has got a lot better, although I'm still terribly slow. But it does seem to be on the way back to the good place it was in some days ago. And no need for Oramorph!
OTOH I've felt seriously tired out all day. Have spent too much time stretched out in front of the TV and the computer, failing to raise the energy to do anything much or even watch intelligently. Whether that's lack of activity, or too much activity yesterday, or days of sleep deprivation, or even an after-effect of the radiotherapy, I don't know. Just hoping for a better sleep tonight before tomorrow, when I plan on going into the bank to talk about some financial planning that we have to think about.
Sue was out for much of the day, having lunch with her group of friends, also known as "the ladies who lunch" and mainly drawn from Special School colleagues. So they're not local, and they don't get to met up IRL all that often. I gather that they all said very supportive things, and there was a lot about how brave and positive she's being on Facebook etc. - so at the end she had a bit of a moment and let a lot of suppressed emotion out.
Both consultants have stressed - quite rightly - that although I'm the one with the myeloma, in a very real sense we've both got the disease. She goes through the journey with me, her life is turned upside-down as much as mine, and we will have highs and lows together. And sometimes at different times, which will be testing. She will need all her friends, just down the road and further away. And I have no doubt that they will deliver.
I'm hugely grateful for all her support, whatever form it takes. Including coming with me to all the appointments, making the notes, asking the questions I don't think of. And far subtler things than those.
We're in this together. I must always remember that, and look for ways to show it. It's not just me.
OTOH I've felt seriously tired out all day. Have spent too much time stretched out in front of the TV and the computer, failing to raise the energy to do anything much or even watch intelligently. Whether that's lack of activity, or too much activity yesterday, or days of sleep deprivation, or even an after-effect of the radiotherapy, I don't know. Just hoping for a better sleep tonight before tomorrow, when I plan on going into the bank to talk about some financial planning that we have to think about.
Sue was out for much of the day, having lunch with her group of friends, also known as "the ladies who lunch" and mainly drawn from Special School colleagues. So they're not local, and they don't get to met up IRL all that often. I gather that they all said very supportive things, and there was a lot about how brave and positive she's being on Facebook etc. - so at the end she had a bit of a moment and let a lot of suppressed emotion out.
Both consultants have stressed - quite rightly - that although I'm the one with the myeloma, in a very real sense we've both got the disease. She goes through the journey with me, her life is turned upside-down as much as mine, and we will have highs and lows together. And sometimes at different times, which will be testing. She will need all her friends, just down the road and further away. And I have no doubt that they will deliver.
I'm hugely grateful for all her support, whatever form it takes. Including coming with me to all the appointments, making the notes, asking the questions I don't think of. And far subtler things than those.
We're in this together. I must always remember that, and look for ways to show it. It's not just me.
08/10/19
A slightly better night, at last! Went through to 06:30, despite waking up for a bathroom visit at least once an hour. I must have somehow got seriously over-hydrated yesterday...
Here's the good bit: at 06:30 there was no soft tissue / muscular pain around the left hip at all. Not a trace. Just a low, dull, ache from inside. It's changed now I've moved about a bit, but there it was: pure unadulterated bone pain, and very welcome too. That will pass, and so will the other stuff. All I have to do is keep taking the tablets, avoid over-exercise, and wait...
Here's the good bit: at 06:30 there was no soft tissue / muscular pain around the left hip at all. Not a trace. Just a low, dull, ache from inside. It's changed now I've moved about a bit, but there it was: pure unadulterated bone pain, and very welcome too. That will pass, and so will the other stuff. All I have to do is keep taking the tablets, avoid over-exercise, and wait...
Monday 7 October 2019
07/10/19 (2)
That turned into quite a long day. Obvious as soon as I got up that the radiotherapy-related "bone pain" wasn't any better, and it quickly got worse through the morning. Part of the trouble is that it isn't just the bone pain I've been warned to expect, it's just as much muscle & soft tissue pain around the joint. And that's what was taking my mobility right back to where it was a couple of weeks ago. A slightly depressing business... Anyway, prescribed myself a first 5ml shot of Oramorph before heading to the hospital, and that both seemed to help and re-focused my attention on the bone pain rather than the soft tissues. But that's bounced backwards and forwards several times since then. No more Oramorph - I do want to keep that for emergency use only, not routine. I'm on continuous low-dose morphine sulphate tablets anyway.
We got to the appointment and Dr.Ch confirmed that it is almost certainly the delayed reaction to the radiotherapy and should fade away over the next few days. I just hope so! He advises giving the hip plenty of rest, which I shall do diligently..The other side-effects were dismissed as "just steroids", apart from the fruit juice taste one which seemed new to him. We went through the chemo plans again, starting on the 16th as long as the current issue is cleared up by then. Apart from the chemo drugs themselves (Velcade / bortezomib, Thalidomide, Dexamethasone) I'll be getting two different antibiotics, an anti-viral, an anti-gout medication (!), and a stack of anti-nausea anti-emetics, antidiarrhoea and anti-constipation medicines in case of need. And, afterwards, yet another antibiotic and something else that I've lost track of. Is that a third seven-day pill-box that I see coming over the horizon?
Then "over the road" at Springfield to the Chemotherapy Suite in the Oncology Centre for my second Zometa perfusion. That's the "bone-strengthening" bisphosphonate that's meant to offset the undesirable effects of the steroids. An interesting comparison with the first one at Broomfield where they're under the greater pressures of the NHS. There, they went straight in with a canula in the big vein in my left elbow, hooked up the drip, let it run twenty minutes then took it all out and goodbye till next time (apart from a cup of tea and a biscuit). All very pleasantly done, but a bit production-line and no time to waste.
At Springfield, they started off by warming my right arm up with a heat pad for easier canulisation while taking time to explain why they think it's so much better to go into a wrist vein rather than an elbow one. While that was going on the coffee and biscuits arrived. then they flushed the line through with a bag of saline to make sure all OK before switching over to the Zometa and then another saline flush afterwards. The whole process took something over an hour, as against half an hour at most.
We stopped off for a light (and late) lunch at a Costa in Chelmsford, got home ,and I just about crashed out, apart from cooking dinner, until about 21:00. Sleep deprivation catching up, but not with enough decent sleep to make up for it. Maybe tonight...
We got to the appointment and Dr.Ch confirmed that it is almost certainly the delayed reaction to the radiotherapy and should fade away over the next few days. I just hope so! He advises giving the hip plenty of rest, which I shall do diligently..The other side-effects were dismissed as "just steroids", apart from the fruit juice taste one which seemed new to him. We went through the chemo plans again, starting on the 16th as long as the current issue is cleared up by then. Apart from the chemo drugs themselves (Velcade / bortezomib, Thalidomide, Dexamethasone) I'll be getting two different antibiotics, an anti-viral, an anti-gout medication (!), and a stack of anti-nausea anti-emetics, antidiarrhoea and anti-constipation medicines in case of need. And, afterwards, yet another antibiotic and something else that I've lost track of. Is that a third seven-day pill-box that I see coming over the horizon?
Then "over the road" at Springfield to the Chemotherapy Suite in the Oncology Centre for my second Zometa perfusion. That's the "bone-strengthening" bisphosphonate that's meant to offset the undesirable effects of the steroids. An interesting comparison with the first one at Broomfield where they're under the greater pressures of the NHS. There, they went straight in with a canula in the big vein in my left elbow, hooked up the drip, let it run twenty minutes then took it all out and goodbye till next time (apart from a cup of tea and a biscuit). All very pleasantly done, but a bit production-line and no time to waste.
At Springfield, they started off by warming my right arm up with a heat pad for easier canulisation while taking time to explain why they think it's so much better to go into a wrist vein rather than an elbow one. While that was going on the coffee and biscuits arrived. then they flushed the line through with a bag of saline to make sure all OK before switching over to the Zometa and then another saline flush afterwards. The whole process took something over an hour, as against half an hour at most.
We stopped off for a light (and late) lunch at a Costa in Chelmsford, got home ,and I just about crashed out, apart from cooking dinner, until about 21:00. Sleep deprivation catching up, but not with enough decent sleep to make up for it. Maybe tonight...
07/10/92
Woke up about 04:30 - again. Kept trying for more sleep, got only a few minutes at a time. Gave up the fight at 06:30, in time for another nice red sunrise.
Dr.Ch again today, followed by my second Zometa transfusion.
Things to tell him about: sleeplessness, ankle swelling (less today), weight gain, fruit juice taste, and walking not so good again. Is it the anticipated "bone pain" or something else?
"Aching, dull or throbbing" (quote from Macmillan about bone pain) seems about right, although not much throbbing. No painkillers until after breakfast - will see how that goes but starting to think about the Oramorprph for the first time.
Dr.Ch again today, followed by my second Zometa transfusion.
Things to tell him about: sleeplessness, ankle swelling (less today), weight gain, fruit juice taste, and walking not so good again. Is it the anticipated "bone pain" or something else?
"Aching, dull or throbbing" (quote from Macmillan about bone pain) seems about right, although not much throbbing. No painkillers until after breakfast - will see how that goes but starting to think about the Oramorprph for the first time.
Sunday 6 October 2019
06/10/19 (2)
Made it till 06:40, despite getting up two or three times. Four and a half hours max, which is not bad at the moment. Will spend an hour at the computer then maybe another hour or two asleep if I'm lucky.
That "bone pain", if that's what it is, is still there at much the same level as last night. So still waiting for it to arrive in full force. It's only four days since the last radiotherapy session, so plenty of time left (up to another ten days).
Must remember to do something about my postponed eye test at Specsavers tomorrow morning. Fit it in before the chemo starts if possible.
That "bone pain", if that's what it is, is still there at much the same level as last night. So still waiting for it to arrive in full force. It's only four days since the last radiotherapy session, so plenty of time left (up to another ten days).
Must remember to do something about my postponed eye test at Specsavers tomorrow morning. Fit it in before the chemo starts if possible.
06/10/19
Yesterday was quite a tiring day - lots of things that needed attending to in the morning followed by our expedition to Hatfield Forest and a good long walk (by current standards). Sue and I both rather crashed out later and it's the first time since the steroid-induced sleeplessness that I've really felt dog-tired and badly in need of more than two or three hours tonight.
But inevitably, being me, I started to perk up a bit about 23:00, had my nightly shower at 23:45, and now (00:15) feel bright as a button again... I'm going to resist the temptation to go to bed "early" because I know I never sleep well if I do that unless it's really really early, so I plan on staying up to my usual 02:00 or so, and then hope for a good long sleep. At least I finished this run of dexamethasone yesterday morning, so there's a chance the effects will be starting to wear off.
There's nothing on in the morning until we have to leave for a concert in the Cambridge Corn Exchange in the afternoon, which will mean leaving home about 13:00. So it would be great to sleep on till 10:00... All the weekend jobs have been done - cleaning the cat fountain, paying the weekly bills, and so on, so no pressure at all to get up and start the day earlier.
On other things, I was quite stiff and sore in the left thigh and across the back of my hips for much of the day - hard to tell if that's complaining soft tissues supporting the hip joint, or the anticipated "bone pain" that's is due to arrive several days after the radiotherapy ended. A bit of both, I think - after all, the radiation has to get through some soft tissue before it gets to the bone... No matter how carefully they aim it, can't avoid some collateral damage. As the day went on, the "pain" - TBH, it's barely more than slight discomfort - did seem to focus down more into the hip itself than on the thigh and muscles across the back. So maybe my sleep will be interrupted by an attack of real bone pain in the middle of the night. Pity I left the bottle of Oramorph downstairs!
But inevitably, being me, I started to perk up a bit about 23:00, had my nightly shower at 23:45, and now (00:15) feel bright as a button again... I'm going to resist the temptation to go to bed "early" because I know I never sleep well if I do that unless it's really really early, so I plan on staying up to my usual 02:00 or so, and then hope for a good long sleep. At least I finished this run of dexamethasone yesterday morning, so there's a chance the effects will be starting to wear off.
There's nothing on in the morning until we have to leave for a concert in the Cambridge Corn Exchange in the afternoon, which will mean leaving home about 13:00. So it would be great to sleep on till 10:00... All the weekend jobs have been done - cleaning the cat fountain, paying the weekly bills, and so on, so no pressure at all to get up and start the day earlier.
On other things, I was quite stiff and sore in the left thigh and across the back of my hips for much of the day - hard to tell if that's complaining soft tissues supporting the hip joint, or the anticipated "bone pain" that's is due to arrive several days after the radiotherapy ended. A bit of both, I think - after all, the radiation has to get through some soft tissue before it gets to the bone... No matter how carefully they aim it, can't avoid some collateral damage. As the day went on, the "pain" - TBH, it's barely more than slight discomfort - did seem to focus down more into the hip itself than on the thigh and muscles across the back. So maybe my sleep will be interrupted by an attack of real bone pain in the middle of the night. Pity I left the bottle of Oramorph downstairs!
Saturday 5 October 2019
Blue Badge
It arrived today.
Put to good use at Hatfield Forest. Sausage roll for lunch, then a good walk with Walter Walker (and Sue).
Walter is very good indeed over rough ground with his four twelve-inch pneumatic tyres.
Put to good use at Hatfield Forest. Sausage roll for lunch, then a good walk with Walter Walker (and Sue).
Walter is very good indeed over rough ground with his four twelve-inch pneumatic tyres.
05/10/19
Slept from 02:20 through to 04:30, now wide awake again...
Already overdosed a little on Big Bang Theories last night, not quite in a Stranger Things mood. May be time to find another early morning TV obsession.
Yesterday I thought there was maybe a hint of the expected bone pain from the radiotherapy, but nothing has developed overnight. Been off Naproxen for two days now, BTW, with max paracetamol instead.
If the weather stays OK we're planning on a trip to Hatfield Forest later. After I've done The Great Saturday Pill Organiser thing in my two 7-day pill-boxes, which will take a while...
A line of red cloud over horizon to the east. I've almost forgotten what sunrises look like.
Some swelling around ankles this morning, particularly left. Noticed this a bit yesterday. A known effect of Dexamethasone, I think must check and decide whether important enough to put in the official record. Will try a little gentle under-desk cycling to get the fluids moving.
May have helped a little. Not a lot. Seeing Dr.Ch on Monday, will report it then.
Need some new CR2032 batteries for the bathroom scales. Danger of putting a bit of weight on with the steroids - there's enough already.
Already overdosed a little on Big Bang Theories last night, not quite in a Stranger Things mood. May be time to find another early morning TV obsession.
Yesterday I thought there was maybe a hint of the expected bone pain from the radiotherapy, but nothing has developed overnight. Been off Naproxen for two days now, BTW, with max paracetamol instead.
If the weather stays OK we're planning on a trip to Hatfield Forest later. After I've done The Great Saturday Pill Organiser thing in my two 7-day pill-boxes, which will take a while...
A line of red cloud over horizon to the east. I've almost forgotten what sunrises look like.
Some swelling around ankles this morning, particularly left. Noticed this a bit yesterday. A known effect of Dexamethasone, I think must check and decide whether important enough to put in the official record. Will try a little gentle under-desk cycling to get the fluids moving.
May have helped a little. Not a lot. Seeing Dr.Ch on Monday, will report it then.
Need some new CR2032 batteries for the bathroom scales. Danger of putting a bit of weight on with the steroids - there's enough already.
Friday 4 October 2019
04/10/19 (2)
Went back to bed at 06:00 after my Netflix session, slept through till just before 09:00. So quite a good night in the end, by Dexamethasone standards. A little bit of discomfort in the left hip, but feels more muscular than in the bone itself. Maybe a bit too much under-desk "cycling" yesterday? If the weather stays decent we'll take Walter the new Walker round Oaklands Park and maybe the Museum later today.
04/10/19
Only made it to 04:00 this morning. Most sleepless night yet, but I feel 100% wide awake and ready to go. Will hit Netflix for a Big Bang Theory or two, or maybe a Stranger Things, and try again in a couple of hours..
Still no sign of the anticipated post-radiotherapy bone pain, but got through yesterday - at home all day - without even touching a walking stick. Would have been different outside on less familiar ground and with more people around.
Blue (the more nervous of our two rescue cats) is scared stiff of my sticks and will run a mile if she sees me with one. Yesterday - with no sticks in use - she was all over me almost every time I sat down. It's hard to believe she wasn't trying to say "Sorry about that, I just can't help it" in cat language. I do my best to reply with slow blinks etc. and sometimes believe that something is getting through...
Still no sign of the anticipated post-radiotherapy bone pain, but got through yesterday - at home all day - without even touching a walking stick. Would have been different outside on less familiar ground and with more people around.
Blue (the more nervous of our two rescue cats) is scared stiff of my sticks and will run a mile if she sees me with one. Yesterday - with no sticks in use - she was all over me almost every time I sat down. It's hard to believe she wasn't trying to say "Sorry about that, I just can't help it" in cat language. I do my best to reply with slow blinks etc. and sometimes believe that something is getting through...
Thursday 3 October 2019
03/10/19
Woke up about 05:10, wide awake. A bit over two and a half hours sleep, which is not bad while on the steroids. Unfortunately, nothing in the diary for this morning. I seem to do OK on this little sleep, but will probably have a catch-up doze or three later in the day...
Still awaiting the "breakthrough" bone pain expected after the radiotherapy. Not a sign of it so far, and the bottle of Oramorph remains unopened. On the other hand, got out of bed and up the step between bedroom and bathroom without a stick or any trouble at all. I'd love to know what it would be like without the painkillers.
According to my GP should come off the Naproxen altogether on the 9th. Maybe I'll taper it off a bit and go alternate days from now up to the 9th, see if that makes any difference. All the docs seem to think I've been on it long enough.
Nice morning. Very still, a bit of red sky with the sunrise, mist over the farm reservoir in the distance. And just a touch of frost sparkling in the sunshine on the flat roof outside my study window. First time this year. Winter is coming...
Still awaiting the "breakthrough" bone pain expected after the radiotherapy. Not a sign of it so far, and the bottle of Oramorph remains unopened. On the other hand, got out of bed and up the step between bedroom and bathroom without a stick or any trouble at all. I'd love to know what it would be like without the painkillers.
According to my GP should come off the Naproxen altogether on the 9th. Maybe I'll taper it off a bit and go alternate days from now up to the 9th, see if that makes any difference. All the docs seem to think I've been on it long enough.
Nice morning. Very still, a bit of red sky with the sunrise, mist over the farm reservoir in the distance. And just a touch of frost sparkling in the sunshine on the flat roof outside my study window. First time this year. Winter is coming...
Side effect returns
Now I'm back on another course of Dexamethasone (steroid), that unpleasant fruit juice taste has returned. It went away last time after the Dexamethasone stopped. So I know what to blame. It's annoying but not much worse. Must remember to check whether taste changes are listed as a known side effect. Probably, because almost everything else is. Including constipation. And diarrhoea. But not, presumably, at the same time...
I've reported this side-effect on the Yellow Card system.
I've reported this side-effect on the Yellow Card system.
Wednesday 2 October 2019
Radiotherapy finished!
I finished the radiotherapy course this morning, and was presented with this:
So that's the radiotherapy part over, unless we go back again somewhere down the line to have a go at the lesion on my rib, behind the right shoulder-blade. That seems to be the next largest and it did cause me a lot of pain some time ago, although it's calmed down more recently. All depends on how well it responds to the chemotherapy.
I think I should explain that the radiotherapy was not intended to "cure" my cancer. For a start, the cancer is in my bone marrow, not in any particular part of the bone itself. One of the effects of the cancer is to mess up the chemistry of the balance between bone-building cells and bone-destroying ones, so that "lesions" can appear where bone is being destroyed and de-mineralised faster than it's being replaced. That can lead to a "tumour" of spongy not-quite-bone tissue which, in my case, was pushing into the hip joint and badly (and painfully) affecting the function of the joint. It's not a "tumour" in the usual cancer sense - the cells that make it up are not cancerous.
The aim of the radiotherapy was to shrink that tumour and thereby improve the function of my hip joint, reducing the pain and improving the walking. That appears to have worked. It's the chemotherapy (still to come in full, although the steroids I've been taking are a part of it) that will actually attack the cancerous plasma cells in my bone marrow and hopefully kill them.
We've been able to get the radiotherapy in first before the chemo because my blood numbers are still good or improving, so there's nothing lost by delaying it for a couple of weeks, and the steroids have brought the paraprotein levels down.
This symptomatic radiotherapy is called "palliative" - a term people associate with end-of-life care where the sole purpose is to reduce the symptoms and pain levels in the terminal stage of cancer. Don't panic - I'm not there yet! This was just intended to improve my walking, and it has done. The main problem now is that it still tends to tire and get difficult again after quite a short distance, although today we did what we call the "short" walk in Admiral's Park to the cafe for coffee and half a toasted teacake each before going round the lake and back to the car park. That was OK, but I felt I was getting close to the limit. And that fancy new walker does make a huge difference.
And BTW, no Eggs Benedict on the menu!
So that's the radiotherapy part over, unless we go back again somewhere down the line to have a go at the lesion on my rib, behind the right shoulder-blade. That seems to be the next largest and it did cause me a lot of pain some time ago, although it's calmed down more recently. All depends on how well it responds to the chemotherapy.
I think I should explain that the radiotherapy was not intended to "cure" my cancer. For a start, the cancer is in my bone marrow, not in any particular part of the bone itself. One of the effects of the cancer is to mess up the chemistry of the balance between bone-building cells and bone-destroying ones, so that "lesions" can appear where bone is being destroyed and de-mineralised faster than it's being replaced. That can lead to a "tumour" of spongy not-quite-bone tissue which, in my case, was pushing into the hip joint and badly (and painfully) affecting the function of the joint. It's not a "tumour" in the usual cancer sense - the cells that make it up are not cancerous.
The aim of the radiotherapy was to shrink that tumour and thereby improve the function of my hip joint, reducing the pain and improving the walking. That appears to have worked. It's the chemotherapy (still to come in full, although the steroids I've been taking are a part of it) that will actually attack the cancerous plasma cells in my bone marrow and hopefully kill them.
We've been able to get the radiotherapy in first before the chemo because my blood numbers are still good or improving, so there's nothing lost by delaying it for a couple of weeks, and the steroids have brought the paraprotein levels down.
This symptomatic radiotherapy is called "palliative" - a term people associate with end-of-life care where the sole purpose is to reduce the symptoms and pain levels in the terminal stage of cancer. Don't panic - I'm not there yet! This was just intended to improve my walking, and it has done. The main problem now is that it still tends to tire and get difficult again after quite a short distance, although today we did what we call the "short" walk in Admiral's Park to the cafe for coffee and half a toasted teacake each before going round the lake and back to the car park. That was OK, but I felt I was getting close to the limit. And that fancy new walker does make a huge difference.
And BTW, no Eggs Benedict on the menu!
02/09/19
00:25, just out of the shower. Hip flexibility has been improving by the day, and this time I was able to do things like squeegeeing (Google spellcheck doesn't believe that's a word, but I do) the inside of the shower and drying myself off that I haven't been able to do since this all began. You can't rule out the painkillers, but it is looking as if the high-intensity X-rays have done their job.
I'm even starting to think that I could get on the bike and, more importantly, get off it again safely at a place not of my own choosing. I've only used the thing four or five times this whole year. I'm no enthusiast for going out in cold wet and windy weather, so I'm hoping for a few decent days to give it a try.
Later today an 08:30 (!) appointment with the radiology consultant, followed by radiotherapy #5 (the last one, for now at least). We've already loaded the new walker into Sue's car because the weather forecast looks good for a walk/roll in Admiral's Park followed by coffee and an early lunch (or late breakfast, by our standards) in what used to be Cake on the Lake but is now the rather more prosaically named Central Park Cafe. Can't remember whether they have Eggs Benedict on the menu, but if they do I know how to celebrate getting through Stage One of the treatment plan!
I'm even starting to think that I could get on the bike and, more importantly, get off it again safely at a place not of my own choosing. I've only used the thing four or five times this whole year. I'm no enthusiast for going out in cold wet and windy weather, so I'm hoping for a few decent days to give it a try.
Later today an 08:30 (!) appointment with the radiology consultant, followed by radiotherapy #5 (the last one, for now at least). We've already loaded the new walker into Sue's car because the weather forecast looks good for a walk/roll in Admiral's Park followed by coffee and an early lunch (or late breakfast, by our standards) in what used to be Cake on the Lake but is now the rather more prosaically named Central Park Cafe. Can't remember whether they have Eggs Benedict on the menu, but if they do I know how to celebrate getting through Stage One of the treatment plan!
Tuesday 1 October 2019
01/10/19 (2)
Not a lot today. Radiotherapy #4. When I got home I realised from my Google calendar that it was time to book my next regular three-monthly B12 injection - the surgery likes me to book three weeks in advance. The next one falls in the middle of the first chemo cycle, so I thought I'd better mention that. The receptionist said she'd speak to one of the nurses and asked me to call back at 12:30. Which I did.
"This line is busy"
Repeat until about 15:30, in occasional bursts. In the middle of that, at about 12:45, I thought I'd attack the problem from the other end by phoning my contact number at the Springfield Oncology Centre. All I got was an answering machine and a promise to call me back. It's 16:58 and nothing yet. Not too good...
Eventually got through to same receptionist who honestly admitted that she'd forgotten all about it. But she said she'd catch one of the doctors between patients and get back to me. And she did, only a few minutes later, having spoken to my GP Dr.Ku. He said if it was a two-week chemo cycle I should wait until it's finished to do the B12, but if it was longer (it's four weeks on, one week off) I should go ahead and do the B12 on schedule. So all that took up quite a large amount of the day.
In the middle of all that I had to go out to collect a package from the Royal Mail office in Chelmsford. It was a 10ml bottle of high strength CBD (cannabis) oil which I shall hold in reserve in case the chemo side-effects are bad enough to call for it. No radiotherapy side-effects to speak of yet ,although they do take time to develop. The Oramorph is ready and waiting...
Parish Council meeting this evening, when I shall have a few things to tell the others.
It's been a strange day - periods of dark gloom with thundery showers, separated by dry spells with bright sunshine. I used one of them to go out for a roll down the road to the crossroads with the new rollator/walker, and just got back in time before another downpour. It needs a name. Walter has been suggested. Walter the Walker sounds good - and Mozart people will recognise an allusion to an old friend who used to enjoy his walking.
"This line is busy"
Repeat until about 15:30, in occasional bursts. In the middle of that, at about 12:45, I thought I'd attack the problem from the other end by phoning my contact number at the Springfield Oncology Centre. All I got was an answering machine and a promise to call me back. It's 16:58 and nothing yet. Not too good...
Eventually got through to same receptionist who honestly admitted that she'd forgotten all about it. But she said she'd catch one of the doctors between patients and get back to me. And she did, only a few minutes later, having spoken to my GP Dr.Ku. He said if it was a two-week chemo cycle I should wait until it's finished to do the B12, but if it was longer (it's four weeks on, one week off) I should go ahead and do the B12 on schedule. So all that took up quite a large amount of the day.
In the middle of all that I had to go out to collect a package from the Royal Mail office in Chelmsford. It was a 10ml bottle of high strength CBD (cannabis) oil which I shall hold in reserve in case the chemo side-effects are bad enough to call for it. No radiotherapy side-effects to speak of yet ,although they do take time to develop. The Oramorph is ready and waiting...
Parish Council meeting this evening, when I shall have a few things to tell the others.
It's been a strange day - periods of dark gloom with thundery showers, separated by dry spells with bright sunshine. I used one of them to go out for a roll down the road to the crossroads with the new rollator/walker, and just got back in time before another downpour. It needs a name. Walter has been suggested. Walter the Walker sounds good - and Mozart people will recognise an allusion to an old friend who used to enjoy his walking.
01/10/19
30 days to Brexit. Or not...
Woke up 0330 Got back to sleep.Wide awake at 05:20, so fired up the computer and here again. Haven't even started this lot of steroids yet!
Woke up 0330 Got back to sleep.Wide awake at 05:20, so fired up the computer and here again. Haven't even started this lot of steroids yet!
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15/04/24 Good news, mostly
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