Some good Brexit Day news today. Last set of bloods show paraproteins as "too small to quantify" and no mention of "detected" this time. I doubt that the difference in wording is very significant. Everything else looks OK to me.
Had a phone call this morning from Jamie Cavenagh's secretary. He's the top man i/c stem cell transplants at The London Clinic, along with Prof. John Gribben. First appointment on Tuesday 11 February - I hadn't expected that to start until the end of cycle 4 which I've started today with a Velcade / Bortezomib injection and 20mg of Dexamethasone. So after all these years I've got a medical appointment in Harley Street (no.95). I can't say it's exactly been an ambition, but I suppose it's a bit like climbing a mountain and finally getting to the peak. There's nowhere further up to go...
The oedema is moderate in both ankles at the moment, and they're both about the same. I remain confused about what's going on there.
Friday 31 January 2020
Thursday 30 January 2020
30/01/20
Just had a long phone chat with someone who had a stem cell transplant at The London Clinic. All very encouraging, apart from one thing. She was out in two weeks three days and confirms what Dr.Ch said about "not more than three weeks". Also much more rapid recovery at home afterwards than you read about on the online forums. The not-so-good thing is that there will be several trips to London (Harley Street) before we get to the hospitalisation stage, and the travel from here is not going to be good, especially not for an early morning appointment. We'll just have to deal with that as it comes.
Ankle oedema is the same as yesterday. Less marked than before, right now worse than left. I'm still confused.
Ankle oedema is the same as yesterday. Less marked than before, right now worse than left. I'm still confused.
Wednesday 29 January 2020
29/01/20
12:45 and the oedema is definitely better than usual but the right ankle/foot is now more swollen than the left - which is the reverse of the normal situation. Or to put it another way, the left is a lot better but the right is more or less the same. Put me down as confused.
Tuesday 28 January 2020
28/01/20
The foot/ankle oedema is substantially reduced this evening. No idea why, I haven't done anything different from normal. If this continues I'll have to annoy the GP by asking for some more 20mg Furosemide tablets - I used the last of mine two at a time to make 40mg.
On the other hand, one (or possibly two) of those evil little splits is starting to open up again on the end of my right thumb. Am applying intensive Vaseline treatment. One step forwards, one step backwards.
Two days to go, then Cycle 4 starts. Back on the dex again.
On the other hand, one (or possibly two) of those evil little splits is starting to open up again on the end of my right thumb. Am applying intensive Vaseline treatment. One step forwards, one step backwards.
Two days to go, then Cycle 4 starts. Back on the dex again.
Monday 27 January 2020
27/01/20
Back to Springfield this morning for more bloods and Dr.Ch appointment. Last set of blood results much the same as the two before - PPs down to detected but too low to measure, everything else as expected.
Dr. Ch will be writing to Jamie Cavanagh this week to arrange the transplant. If we haven't heard from him by the end of next week (Fri 07/02, Velcade day), contact secretary Sarah to chase it up.
He also said he expected hospital stay would not be longer than three weeks. Hope he's right about that. The chemo nurses are going to put me in touch with somebody who's had SCT at The London Clinic.
Dr. Ch will be writing to Jamie Cavanagh this week to arrange the transplant. If we haven't heard from him by the end of next week (Fri 07/02, Velcade day), contact secretary Sarah to chase it up.
He also said he expected hospital stay would not be longer than three weeks. Hope he's right about that. The chemo nurses are going to put me in touch with somebody who's had SCT at The London Clinic.
Saturday 25 January 2020
25/01/20 (2)
A quiet Saturday for me - Sue's been out all day at a woodwind "play day" in London. I've done the various weekend jobs like paying bills and cleaning the cats' drinking fountain, sorted out a few things with my pills, done some routine computer maintenance stuff, and listened to test cricket from South Africa (England had a very good day for once). Tomorrow's forecast is for rain in the afternoon so would be good to get out for a bit of a walk/roll in the morning. Looks like the "short walk" in Central Park and half a toasted teacake in the Cafe...
A quick word on the painkillers. Over the last few weeks I've cut the morphine sulphate tablets out altogether and reduced the paracetamol from 2x500mg four times a day (maximum dose) to 1x500mg twice a day - with no adverse consequences at all. So this week I'm going to go one stage further and make the paracetamol "at need only" - which, with luck, will mean none at all.
A quick word on the painkillers. Over the last few weeks I've cut the morphine sulphate tablets out altogether and reduced the paracetamol from 2x500mg four times a day (maximum dose) to 1x500mg twice a day - with no adverse consequences at all. So this week I'm going to go one stage further and make the paracetamol "at need only" - which, with luck, will mean none at all.
25/01/20
Not much to write about for the last two or three days - all ticking over as usual. I'm now into the "week off" between chemo cycles 3 and 4, which means no Velcade injection and no dexamethasone (steroid) this week. Cycle 4 starts on the 31st. More bloods and appointment with Dr.Ch (haematologist) on the 27th. That should give something to write about - I'm hoping he'll have some details about the transplant this time.
Wednesday 22 January 2020
22/01/20 (2)
Felt rather cold this afternoon/evening, so went round the house looking for a window we might have left open. There wasn't one. Checked my temperature just to be safe, but it was OK. Maybe I should just turn the heating up a bit.
Strange thing - marked case of red hand just now, but on the left only. Usually only see this after the late night pills at 23:30 or so. It went back to normal quickly when I got out of my study chair and moved around a bit.
21:00 - both palms red. It's on the way to being Palmar-Plantar Erythrodysesthesia aka Hand-Foot Syndrome, except that it hasn't appeared (yet) on soles of feet. No other symptoms like pain, tingling, blisters, etc. so if it is PPE it's early stage and very mild. I mentioned it to the Oncology nurses a few weeks ago so they are aware. No need to do more than keep an eye on it for the time being.
Strange thing - marked case of red hand just now, but on the left only. Usually only see this after the late night pills at 23:30 or so. It went back to normal quickly when I got out of my study chair and moved around a bit.
21:00 - both palms red. It's on the way to being Palmar-Plantar Erythrodysesthesia aka Hand-Foot Syndrome, except that it hasn't appeared (yet) on soles of feet. No other symptoms like pain, tingling, blisters, etc. so if it is PPE it's early stage and very mild. I mentioned it to the Oncology nurses a few weeks ago so they are aware. No need to do more than keep an eye on it for the time being.
22/01/20
The plan worked last night. The alarms went off, I got to bed by 03:15 (accompanied by Blue, who had been patiently waiting outside the bedroom door) and slept well all the way through till after 9. And after breakfast I felt completely washed out and could barely force myself out of my living room chair (with legs up on the footstool, of course) to do anything at all. A bit of energy has returned now (12:15) and at least I've made it upstairs.
Got to go out later to collect prescriptions from the GP surgery and may try to fit a bit of a walk in as well although it's a damp grey misty day and not exactly tempting.
Probably the first time I've felt quite that drained - approaching the "fatigue" that people talk about. Something to do with the Parish Council meeting last night? Seems unlikely, as it was neither unusually long or unusually difficult.
Got to go out later to collect prescriptions from the GP surgery and may try to fit a bit of a walk in as well although it's a damp grey misty day and not exactly tempting.
Probably the first time I've felt quite that drained - approaching the "fatigue" that people talk about. Something to do with the Parish Council meeting last night? Seems unlikely, as it was neither unusually long or unusually difficult.
Tuesday 21 January 2020
21/01/20
Alarm worked perfectly last night at 02:45 and again at 03:00. I didn't - fell asleep again until 04:45!
Making a deliberate attempt to avoid reading depressing stories about SCT today. I'm going to go through with it, no matter what it takes, and that's all there is to it. End of subject.
Big news yesterday and today about the accidental discovery in Cardiff of a new type of T cell with the possible ability to target all types of cancer cells. Could be a big breakthrough, or maybe not like so many others. Even if it does turn out to be the "magic bullet" it'll take years to go through all the trials and become generally available.
Making a deliberate attempt to avoid reading depressing stories about SCT today. I'm going to go through with it, no matter what it takes, and that's all there is to it. End of subject.
Big news yesterday and today about the accidental discovery in Cardiff of a new type of T cell with the possible ability to target all types of cancer cells. Could be a big breakthrough, or maybe not like so many others. Even if it does turn out to be the "magic bullet" it'll take years to go through all the trials and become generally available.
Monday 20 January 2020
20/01/20
Quiet sort of day today. Didn't do a lot apart from take pills and read probably more than was wise about transplant and recovery. Side-effects from the mobilisation process (getting the stem cells out of the bone marrow and into the bloodstream) and the injections I'm going to have to give myself before the harvesting and the transplant start. Not to mention several hospital trips for tests etc. first - and if that means going to The London Clinic in Marylebone every time it'll be a pain as there's no very easy route there from here. It'll be bad enough for Sue visiting, we don't need to have to do that any more times than necessary.
Definite red hands this evening, and I'm now two days post-dex so that theory can be thrown out. The increased thalidomide looks a likely culprit, except no mention of it in the long list of side-effects.
Definite red hands this evening, and I'm now two days post-dex so that theory can be thrown out. The increased thalidomide looks a likely culprit, except no mention of it in the long list of side-effects.
Sunday 19 January 2020
19/01/20
Got the tax returns finished off yesterday (normal life continuing as usual) and had a fairly busy day today. Made two batches of spreadable butter in the Thermomix, then changed the hideously expensive water filter in the kitchen, It lives under the sink and it's a harder job than it might sound, especially as I'm rather less bendy than I used to be. Then off to Saffron Hall for an afternoon of Beethoven and back in time to cook dinner.
A lot of horror stories about SCT (Stem Cell Transplant) on the Facebook Myeloma Support Group today, particularly about the lengthy and difficult recovery process. I can't say I'm looking forward to what might be several months getting back to something close to "normal". I keep reminding myself that it's only the people who have bad experiences who tend to write about them (although, in fact, it's more often their carers who write the posts). People who sail through transplant with few if any problems are too busy just getting on with life. Probably...
A lot of horror stories about SCT (Stem Cell Transplant) on the Facebook Myeloma Support Group today, particularly about the lengthy and difficult recovery process. I can't say I'm looking forward to what might be several months getting back to something close to "normal". I keep reminding myself that it's only the people who have bad experiences who tend to write about them (although, in fact, it's more often their carers who write the posts). People who sail through transplant with few if any problems are too busy just getting on with life. Probably...
Saturday 18 January 2020
18/01/20 (2)
Up the stairs and down with no hands and alternate feet. And up again. Best stairs day so far.
Had a bit of a walk/roll along the river at Dobbs Weir before lunch at the Fish and Eels. One of the rare sunny days of this winter, but temp down to 1C this evening and snow forecast over much of the country, but it's unlikely to come as far east and south as we are.
(Photo shamelessly pinched from Sue's Facebook feed)
Had a bit of a walk/roll along the river at Dobbs Weir before lunch at the Fish and Eels. One of the rare sunny days of this winter, but temp down to 1C this evening and snow forecast over much of the country, but it's unlikely to come as far east and south as we are.
(Photo shamelessly pinched from Sue's Facebook feed)
18/01/20
Red hands are back. Possibly just a touch on soles of feet as well. It's a dex night of course - haven't spotted a connection with that before.
Visited the vampire nurses yesterday for another Velcade / Bortezomib injection and got the results from last Monday's bloods. No significant change, and PPs still "detected but level too low to be measured". PPs are only an indirect indicator of plasma cell numbers and activity (bone marrow biopsy is the only way to get direct measurements), but a very strong indicator that we've got the little devils under control. All very good.
Now into the last week of Cycle 3. Then it's the "week off", then Cycle 4, then the transplant. It's getting closer...
Visited the vampire nurses yesterday for another Velcade / Bortezomib injection and got the results from last Monday's bloods. No significant change, and PPs still "detected but level too low to be measured". PPs are only an indirect indicator of plasma cell numbers and activity (bone marrow biopsy is the only way to get direct measurements), but a very strong indicator that we've got the little devils under control. All very good.
Now into the last week of Cycle 3. Then it's the "week off", then Cycle 4, then the transplant. It's getting closer...
Thursday 16 January 2020
16/01/20
The double alarm worked last night. Got up with the right ankle/foot oedema very much down but the left still quite marked. The left calf felt tight and I measured the circumference as 2 to 3 cm bigger than the right - and that's on 40mg Furosemide a day. Definitely haven't fixed this yet, the question is what level of fix is long-term acceptable?
Wednesday 15 January 2020
Thinking ahead
In two days time I start week four of Chemo Cycle 3. Then there's the "week off" followed by Cycle 4 and then - after a currently unknown period of time, probably no more than three weeks, it's the transplant. We should be starting that process in early March, so it's no longer in the distant future, it's moving rapidly into something rather closer.
There are practicalities to sort out. I'm going to be in hospital for a minimum of two weeks, probably four or it could be longer. It all depends on how long it takes for my immune system to rebuild itself and my white cell counts to get back to normal. So there's all kinds of household stuff - bills to pay, salt to put in the water softener, emergency contact numbers for electricity and phone and water and so on, and lots more I haven't thought of yet. Everything Sue needs to keep the place going and deal with any likely problems while I'm not around. I started a list a week or two ago but need to get back to it (after we've finished her tax return, which should be by this weekend - I've done mine).
The transplant process itself will be tough enough (I'll leave what I know about the details for nearer the time), but then comes the recovery at home. The general view among people who've been through it seems to be that it takes a year for a complete recovery, although I should be reasonably functional after two or three months.
More on this later, probably.
There are practicalities to sort out. I'm going to be in hospital for a minimum of two weeks, probably four or it could be longer. It all depends on how long it takes for my immune system to rebuild itself and my white cell counts to get back to normal. So there's all kinds of household stuff - bills to pay, salt to put in the water softener, emergency contact numbers for electricity and phone and water and so on, and lots more I haven't thought of yet. Everything Sue needs to keep the place going and deal with any likely problems while I'm not around. I started a list a week or two ago but need to get back to it (after we've finished her tax return, which should be by this weekend - I've done mine).
The transplant process itself will be tough enough (I'll leave what I know about the details for nearer the time), but then comes the recovery at home. The general view among people who've been through it seems to be that it takes a year for a complete recovery, although I should be reasonably functional after two or three months.
More on this later, probably.
15/01/20
The double alarm worked, just about. Got to bed at about 03:30. The trouble is that there's always computer stuff to be tidied up or something on TV to finish so there's inevitably a risk of falling asleep again. Maybe I need a third alarm as well...
No, probably not. Going to leave things as they are tonight, try to get a routine established.
No, probably not. Going to leave things as they are tonight, try to get a routine established.
Tuesday 14 January 2020
14/01/20
The new alarm worked. I was awake at 03:00 and it beeped. Quite loud enough to have woken me up, if needed. So I turned it off and promptly fell asleep for another hour...
OK, it has two alarms. If I can work out how, I'll set one for 02:45 and the other for 03:00. I will not be defeated on this. Not easily, anyway. Got to be up reasonably early tomorrow for my regular three-monthly B12 injection at the GP surgery. Then it'll be the rest of the day finishing off the tax returns. Normal life goes on...
OK, it has two alarms. If I can work out how, I'll set one for 02:45 and the other for 03:00. I will not be defeated on this. Not easily, anyway. Got to be up reasonably early tomorrow for my regular three-monthly B12 injection at the GP surgery. Then it'll be the rest of the day finishing off the tax returns. Normal life goes on...
Monday 13 January 2020
13/01/20 (3)
My medical insider tells me that the likely explanation for haemolysis is that the sample took too long to get to the lab. Likely enough!
It's been a strange sort of day. I've been feeling grumpy and unsettled all day, everything I start doing gets interrupted by something else so nothing gets finished. I blame it on a poor night's sleep last night but I'm just going to have to get used to a change. Alarm at 03:00, in bed by 03:30 no matter what. That's the new rule. Until I change it, of course. But no more waking up at 05:00 still in my study chair...
The new alarm clock/radio has arrived and is now installed on my computer desk. It's set to "beep" at 03:00. Later tonight we'll know if it's loud enough to do the job over the TV, which may well be on at the time.
It's been a strange sort of day. I've been feeling grumpy and unsettled all day, everything I start doing gets interrupted by something else so nothing gets finished. I blame it on a poor night's sleep last night but I'm just going to have to get used to a change. Alarm at 03:00, in bed by 03:30 no matter what. That's the new rule. Until I change it, of course. But no more waking up at 05:00 still in my study chair...
The new alarm clock/radio has arrived and is now installed on my computer desk. It's set to "beep" at 03:00. Later tonight we'll know if it's loud enough to do the job over the TV, which may well be on at the time.
13/01/20 (2)
Didn't sleep particularly well last night (went to bed too early!) but the ankle oedema was way down first thing about 09:15. Still fairly good now at 12:55.
40mg of Furosemide definitely more effective than 20mg and I don't think makes me any worse hydrated overall.
Went in to the vampire nurses at Springfield to give them some more blood and got a print-out of the last set of bloods. The good thing is that the PPs are detected but down one final stage to "Too small to quantify". Can't get much better than that. However a lot of the results are marked "Sample haemolysed unsuitable for analysis", which suggests that the samples have not been dealt with properly at some stage. "Haemolysed" means that red blood cells have burst open and released their contents into the plasma. Will have to ask some questions about that.
40mg of Furosemide definitely more effective than 20mg and I don't think makes me any worse hydrated overall.
Went in to the vampire nurses at Springfield to give them some more blood and got a print-out of the last set of bloods. The good thing is that the PPs are detected but down one final stage to "Too small to quantify". Can't get much better than that. However a lot of the results are marked "Sample haemolysed unsuitable for analysis", which suggests that the samples have not been dealt with properly at some stage. "Haemolysed" means that red blood cells have burst open and released their contents into the plasma. Will have to ask some questions about that.
13/01/20
Watch alarm just went off, and yes I was asleep! Have ordered a mains alarm clock from Amazon - should arrive later today. That should be a bit more effective and won't interfere with the established routine for overnight watch charging.
It's pretty obvious by now that dex sleeplessness, famous as it may be, is no match for the drowsiness of 200mg of thalidomide. Leaving that to one side, still no serious side effects of the chemo. Red hands hasn't appeared so much recently, and the ankle/foot oedema is under some control on 40mg Furosamide, although both ankles are pretty puffed-up now. We'll see how they go down overnight. And speaking of that, time I went to bed. Goodnight.
It's pretty obvious by now that dex sleeplessness, famous as it may be, is no match for the drowsiness of 200mg of thalidomide. Leaving that to one side, still no serious side effects of the chemo. Red hands hasn't appeared so much recently, and the ankle/foot oedema is under some control on 40mg Furosamide, although both ankles are pretty puffed-up now. We'll see how they go down overnight. And speaking of that, time I went to bed. Goodnight.
Sunday 12 January 2020
12/01/20 (2)
Went to Chelmsford Jazz Club this afternoon (Leon Greening Trio) and at least I got out of it afterwards without another left hip event as happened last time. Keeping "normal life" going as far as possible!
Speaking of normal life, now must turn attention to getting the quarter-completed tax returns finished. Deadline is Brexit Day at the end of the month.
Speaking of normal life, now must turn attention to getting the quarter-completed tax returns finished. Deadline is Brexit Day at the end of the month.
12/01/20
Last night was ridiculous. Something has to change. I was wide awake (as usual) at 01:30 doing computer things in my study, then fell straight asleep and didn't wake up till 05:20, just before Sue arrived to check that I was OK. Which I was. She doesn't need that sort of interruption in her night. In bed by 05:30 and then only interrupted sleep until 9 or so.
I'm setting my watch alarm for 03:00 tonight. All I have to do is remember to put the watch on again after the shower. If that doesn't work I'll have to get a separate alarm clock in here.
I'm setting my watch alarm for 03:00 tonight. All I have to do is remember to put the watch on again after the shower. If that doesn't work I'll have to get a separate alarm clock in here.
11/01/20 (2)
Not a lot today. Went for a walk in South Weald County Park near Brentwood - not ideal because most of the paths are not surfaced and after the recent rains even the surfaced one was largely covered in a layer of mud. Not too bad going down the hill to the lakes with Walter, but difficult coming back up, not least when a foot tries to slip away in the mud... Anyway, we made it and went to the cafe for coffee (not good, but not the worst ever), a soggy floppy and rather tasteless toasted cheese & tomato sandwich (definitely the worst ever), and a decent toasted teacake. I broke my usual rule and had strawberry jam on my half.
Second dex night of this cycle tonight. I'm expecting a late one but not too late because I've got Chelmsford Jazz Club tomorrow and need to be there by 11:45 latest.
Second dex night of this cycle tonight. I'm expecting a late one but not too late because I've got Chelmsford Jazz Club tomorrow and need to be there by 11:45 latest.
Saturday 11 January 2020
11/01/20
Did the Pill Organisation Thing when we got home from seeing 2017 (film) yesterday. Have cut the Paracetamol down to one 500mg twice a day, and cut the Morphine Sulphate tablets out altogether, which should make Dr.Ch happy. We'll see how it goes.
Friday 10 January 2020
10/01/20
Just back from Springfield Oncology Centre after waiting an hour and a half for my Velcade injection. Not good. They blame the pharmacy for the delay. I had planned to have time to do the weekly Pill sort before we go out to see 1917 (new film) this afternoon, but that'll have to be delayed now. In the meantime Sue has seen her GP about a spot (for lack of a better term) on her nose which may turn out to be a basal cell carcinoma. She's got a private appointment with a dermatologist at Springfield on the 20th. We didn't need another medical complication, but if that's the way it goes...
If it is a BCC (commonest type of non-melanoma skin cancer, probably caused by long-term exposure to UV) it can be dealt with surgically - so that'll be another load of appointments and procedures, and - no doubt - pills - to fit into the schedule. Not to mention stress, which neither of us need any more of. Sue in particular, with her heart to think about. Oh well, might as well get all these things sorted out together.
Not looking forward to the premiums for the health insurance renewals this year!
If it is a BCC (commonest type of non-melanoma skin cancer, probably caused by long-term exposure to UV) it can be dealt with surgically - so that'll be another load of appointments and procedures, and - no doubt - pills - to fit into the schedule. Not to mention stress, which neither of us need any more of. Sue in particular, with her heart to think about. Oh well, might as well get all these things sorted out together.
Not looking forward to the premiums for the health insurance renewals this year!
Thursday 9 January 2020
11/01/20 (2)
The nosebleed bled profusely for about 45 minutes before it eventually stopped and clotted, which happened quite suddenly. I suppose that means the Rivaroxaban is doing its job properly. No recurrence either in the shower or overnight.
The vampire nurses at Springfield (always after another sample of my blood) advise ice on forehead or back of neck to slow and/or stop such a nosebleed. I'm not an ice enthusiast and can think of better things to do with a bag of frozen peas but I suppose I'll have to give it a try next time. It'll be good practice for the transplant, when I'll need lots of ice to cool my digestive tract down and minimise the damage from the high-dose chemotherapy.
The vampire nurses at Springfield (always after another sample of my blood) advise ice on forehead or back of neck to slow and/or stop such a nosebleed. I'm not an ice enthusiast and can think of better things to do with a bag of frozen peas but I suppose I'll have to give it a try next time. It'll be good practice for the transplant, when I'll need lots of ice to cool my digestive tract down and minimise the damage from the high-dose chemotherapy.
Nosebleed
I've been waiting for this for a while - it's a likely side-effect of several things. I went out for an evening of Latin jazz (Derek Nash with Picante) at the Belvedere, got home about 11:15 and then rushed around the kitchen doing all the things that have to be done:
Give Belle her treats
Make Ribena (we are both unreasonably addicted to the stuff at night, but Sue had made hers already)
Make Laxido and drink it (yuck!)
Chew AdCal tablet
Lay out tomorrow's breakfast
Finish loading dishwasher
Wash up cats' dinners
Take last batch of pills for the day (the Ribena comes in useful here).
With all that done I headed upstairs for the shower room and the nosebleed started out of nowhere. Maybe I should have taken it all a bit more slowly. Lots of blood - more than I could keep under control - and it took about 45 minutes to clot and stop. I'm just glad it didn't happen while I was at the club or driving home. Also hope it stays stopped overnight... It was right nostril only - does that mean sleeping on left side or right, or maybe it doesn't make any difference?
Later today I must check out the side-effect lists to work out the likeliest culprits. I think dex will be high on the list, as it is for almost everything. Only one day to go, and then the dex nights will start again!
Give Belle her treats
Make Ribena (we are both unreasonably addicted to the stuff at night, but Sue had made hers already)
Make Laxido and drink it (yuck!)
Chew AdCal tablet
Lay out tomorrow's breakfast
Finish loading dishwasher
Wash up cats' dinners
Take last batch of pills for the day (the Ribena comes in useful here).
With all that done I headed upstairs for the shower room and the nosebleed started out of nowhere. Maybe I should have taken it all a bit more slowly. Lots of blood - more than I could keep under control - and it took about 45 minutes to clot and stop. I'm just glad it didn't happen while I was at the club or driving home. Also hope it stays stopped overnight... It was right nostril only - does that mean sleeping on left side or right, or maybe it doesn't make any difference?
Later today I must check out the side-effect lists to work out the likeliest culprits. I think dex will be high on the list, as it is for almost everything. Only one day to go, and then the dex nights will start again!
Tuesday 7 January 2020
07/01/20
More evidence last night that 200mg of thalidomide is enough to take on the dex sleeplessness. I fell asleep in my study chair at about 01:00 and woke up again at 04:00. Straight to bed and back to sleep until the alarm at 08:30.
I put the Furosemide (diuretic) back up to 40mg this morning - already the swelling on the left ankle is less marked and my water balance is in chaos. Urinating copious quantities with great frequency (not straightforward while also having a much-postponed eye test), even more so than when I first started the 40mg dose from nothing. I think this must indicate how big an effect the dex (and possibly other things) is having on fluid retention. Probably accounts for much of the recent weight gain - will be interesting to see if a lot of that disappears over the next few days. In the meantime must be even more careful than usual to drink plenty while a new equilibrium gets established. Don't want to start getting dehydrated, that wouldn't be helpful.
I put the Furosemide (diuretic) back up to 40mg this morning - already the swelling on the left ankle is less marked and my water balance is in chaos. Urinating copious quantities with great frequency (not straightforward while also having a much-postponed eye test), even more so than when I first started the 40mg dose from nothing. I think this must indicate how big an effect the dex (and possibly other things) is having on fluid retention. Probably accounts for much of the recent weight gain - will be interesting to see if a lot of that disappears over the next few days. In the meantime must be even more careful than usual to drink plenty while a new equilibrium gets established. Don't want to start getting dehydrated, that wouldn't be helpful.
Monday 6 January 2020
06/01/20
A busy medical day today, starting with a Zometa (bisphosphonate bone strengthener) drip in the Springfield Oncology Centre. That means starting two a day of the new AdCal tablets for the next three weeks - it seems I should have been taking these after every Zometa, except that nobody told me abou them and the pharmacy didn't give me any until now...
A few weeks ago the routine Q&A assessment included a question about red hands which didn't mean much to me and I let it pass by, but I have been getting bright red palms of hands towards the end of the day for a week or two now, so I asked about it. The first reply was "What about the soles of your feet?" to which I could only answer "No idea, haven't looked!" It turns out this could be the beginnings of Palmar-Plantar Erythrodysesthesia aka Hand-Foot Syndrome, which could get quite nasty if it develops. Lots about it here: https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/hand-foot-syndrome-or-palmar-plantar-erythrodysesthesia
So I shall inspect the soles of my feet more thoroughly and report any developments, esp. pain, to the cancer nurses. But so far there are none other of the long list of symptoms, and nor do any of my drugs feature on the list of likely causes.
Then on to an appointment with haematology consultant Dr.Ch, who is happy with progress and will be writing to big name haematologist Jamie Cavanagh to start the process of setting up the transplant at The London Clinic to follow the next cycle of chemo (early March, we hope). Also discussed the foot/ankle oedema business and he supported cautiously increasing the dose of Furosemide (diuretic) from the current 20mg (pretty ineffective) towards the 40mg that I started with.
In the afternoon, an appointment with GP Dr.Ku to review results of recent blood tests. Main thing is the cholesterol numbers: total 3.68 (should be below 5), bad 2.4 (should be below 3), and TC:HDL ratio 2.7 (should be below 4.5). So that's all very good. We also looked at my blood pressure readings (average 118/67 over the last twenty days) and agreed no need to go back onto Felodipine, especially as the diuretics might lower BP a bit.
I raised the question of PSA (prostate) as I couldn't remember how long it was since I last had it tested. Turned out it was as recently as summer 2018 and OK, so we agreed to repeat in August this year. Now I'm being checked over all the time for almost everything, it seems wrong to be ignoring such a major area of male health. That was about all, apart from getting Fybogel added to my repeat prescription list
A few weeks ago the routine Q&A assessment included a question about red hands which didn't mean much to me and I let it pass by, but I have been getting bright red palms of hands towards the end of the day for a week or two now, so I asked about it. The first reply was "What about the soles of your feet?" to which I could only answer "No idea, haven't looked!" It turns out this could be the beginnings of Palmar-Plantar Erythrodysesthesia aka Hand-Foot Syndrome, which could get quite nasty if it develops. Lots about it here: https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/hand-foot-syndrome-or-palmar-plantar-erythrodysesthesia
So I shall inspect the soles of my feet more thoroughly and report any developments, esp. pain, to the cancer nurses. But so far there are none other of the long list of symptoms, and nor do any of my drugs feature on the list of likely causes.
Then on to an appointment with haematology consultant Dr.Ch, who is happy with progress and will be writing to big name haematologist Jamie Cavanagh to start the process of setting up the transplant at The London Clinic to follow the next cycle of chemo (early March, we hope). Also discussed the foot/ankle oedema business and he supported cautiously increasing the dose of Furosemide (diuretic) from the current 20mg (pretty ineffective) towards the 40mg that I started with.
In the afternoon, an appointment with GP Dr.Ku to review results of recent blood tests. Main thing is the cholesterol numbers: total 3.68 (should be below 5), bad 2.4 (should be below 3), and TC:HDL ratio 2.7 (should be below 4.5). So that's all very good. We also looked at my blood pressure readings (average 118/67 over the last twenty days) and agreed no need to go back onto Felodipine, especially as the diuretics might lower BP a bit.
I raised the question of PSA (prostate) as I couldn't remember how long it was since I last had it tested. Turned out it was as recently as summer 2018 and OK, so we agreed to repeat in August this year. Now I'm being checked over all the time for almost everything, it seems wrong to be ignoring such a major area of male health. That was about all, apart from getting Fybogel added to my repeat prescription list
Sunday 5 January 2020
05/01/20 (4)
Best day on the stairs so far - up and down, both legs, no holding on, carrying (light) things, only one tiny hesitation going up. Very pleased about that, especially as it was quite bad just a couple of days ago.
05/01/20 (3)
Didn't get to sleep till about 04:30 last night because Blue (one of our two rescue cats) came on the bed and demanded attention. She left via my bedside cabinet and a lot of noise, and in the morning I discovered that she'd taken my MedicAlert bracelet and dropped it on the carpet near the door. I was reminded of the time a few years ago when she was new with us and she took both my glasses and one of my hearing aids. I eventually found that on the floor downstairs, and she had bitten a hole right through it. Even with the Boots "lifetime" cover, that cost me £90 IIRC.
Anyway, slept through until about 07:00, then dozed on and off to 09:30. Had breakfast, waited for a modest effect from the FSL anti-constipation regime, and then we went for the "short walk" in Amiral's Park and half a toasted teacake each in the cafe. Some people in there were very interested in my Trionic walker - first time that's happened. And that reminds me that Sue said that last time she was in the GP surgery wearing her Myeloma UK hoodie that somebody asked her about it and said he knew somebody in Writtle with myeloma. It helps to advertise!
Anyway, slept through until about 07:00, then dozed on and off to 09:30. Had breakfast, waited for a modest effect from the FSL anti-constipation regime, and then we went for the "short walk" in Amiral's Park and half a toasted teacake each in the cafe. Some people in there were very interested in my Trionic walker - first time that's happened. And that reminds me that Sue said that last time she was in the GP surgery wearing her Myeloma UK hoodie that somebody asked her about it and said he knew somebody in Writtle with myeloma. It helps to advertise!
05/01/20 (2)
04:00 and I'm off to bed. Not really feeling like it yet but got to draw a line somewhere. The dex has certainly won tonight.
Saturday 4 January 2020
04/01/20
Last night was a a bit unusual. Went to bed at about 04:45, but a good two hours of that time was spent asleep in my chair in the study. Perhaps the "drowsiness" effect of the increased Thalidomide dose is winning over the sleeplessness effect of the dex? We'll see what happens tonight.
The FSL regime worked OK this morning, so we set off for Maldon in lovely sunny weather. Had a good walk/roll along the Prom and shared a sausage roll in one of the cafes. Walter performed much better than Rolly did back in September before I had even started radiotherapy. Walter goes straight over cracks in the pavement etc. that you have to steer Rolly around or lift him over. Well worth the money.
Me and Walter Walker on the prom - Maldon at low(ish) tide.
The FSL regime worked OK this morning, so we set off for Maldon in lovely sunny weather. Had a good walk/roll along the Prom and shared a sausage roll in one of the cafes. Walter performed much better than Rolly did back in September before I had even started radiotherapy. Walter goes straight over cracks in the pavement etc. that you have to steer Rolly around or lift him over. Well worth the money.
Me and Walter Walker on the prom - Maldon at low(ish) tide.
Friday 3 January 2020
03/01/20
Had the Velcade shot this morning, after 35 minutes in the waiting room first. Got home to another Sue computer problem, eventually fixed at some cost to both of our blood pressures, stress levels, and etc.. Took the ten 2mg dexes as part of the lunchtime pills.
Did the Pill Organisation Thing and decided to keep the MST going for another week. My hip has taken a hammering over the last few days and it doesn't seem a good time to cut the painkillers any further. If it's no longer as effective as it was there'll be no harm done. Cutting the paracetamol by half hasn't made any substantial difference, I just feel that the "buffer zone" isn't quite as wide as it was. If that makes any sense. Performance on the stairs has slipped back again...
Did the Pill Organisation Thing and decided to keep the MST going for another week. My hip has taken a hammering over the last few days and it doesn't seem a good time to cut the painkillers any further. If it's no longer as effective as it was there'll be no harm done. Cutting the paracetamol by half hasn't made any substantial difference, I just feel that the "buffer zone" isn't quite as wide as it was. If that makes any sense. Performance on the stairs has slipped back again...
Wednesday 1 January 2020
01/01/20
Just back from a couple of New Year days spent with old friends down in Surrey. Horrible grey misty dank weather but the M25 was kind to us and no delays either way, which is unusual.
Things start getting back to normal with a blood test at the GP surgery tomorrow (including cholesterol at my request, because it's been some years since last time which was a good result), and on Friday I start week 2 of cycle 3 with the Velcade injection and two more dex nights.
No obvious side effects so far from the doubled thalidomide dose or from cutting the paracetamol by half. I think I'll cut the daily morphine sulphate pill out on the next Pill Organisation Day as well, see how that goes.
Things start getting back to normal with a blood test at the GP surgery tomorrow (including cholesterol at my request, because it's been some years since last time which was a good result), and on Friday I start week 2 of cycle 3 with the Velcade injection and two more dex nights.
No obvious side effects so far from the doubled thalidomide dose or from cutting the paracetamol by half. I think I'll cut the daily morphine sulphate pill out on the next Pill Organisation Day as well, see how that goes.
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