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.
Sunday, 12 January 2020
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
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