Had a good birthday yesterday with the "short" Admirals Park walk/roll to the Cafe for half a toasted teacake each followed by a circuit of the lake in wonderful sunny autumn weather. Then to Saffron Hall in the evening for a fine concert from Marin Alsop and the LPO, now the place's second resident orchestra after the Britten Sinfonia. However, the left hip's a bit stiff and sore this morning, which is a warning to still be very careful with my activity levels. No point overdoing things and setting them back.
The ankle oedema is getting slowly worse - having some real trouble getting socks and slippers on this morning 11/11 (especially left foot). Not seeing consultant till next week but will discuss it with the nurses in the Oncology Centre when in for the next Velcade shot on Thursday. Also want to get print-outs of recent blood tests out of them to keep my records up to date.
Otherwise, sleeping is best yet post-dex, and no sign of other side-effects. At least, none that a nightly shot of prune juice and a senna pill or two can't cope with.
Monday, 11 November 2019
Saturday, 9 November 2019
09/11/19
Four hours good sleep again last night. Sue commented on how "upbeat" I sounded this morning - and that's half the problem with this early stage of myeloma. Apart from being physically more limited than before - I doubt I'll ever be able to keep up with a powered lawnmower again - most of the time I feel perfectly well and it's hard to remember that I have an incurable disease and that the long-term trend is only going one way, even if we can hold it off for a while from time to time.
Reading through all the posts on the MyelomaUK forum and on the Facebook group, it becomes obvious that I was lucky to get an early diagnosis (even though it might have been a couple of months earlier) compared with people who developed far worse bone problems before their GP or equivalent realised what was going on. The massive hit of steroids that Dr.Ko gave me while I was still with the NHS at Broomfield seems to have stopped the bone lesions in their tracks (helped by the radiotherapy for the big hip one). With luck it'll be a long time before they start getting worse again.
Reading through all the posts on the MyelomaUK forum and on the Facebook group, it becomes obvious that I was lucky to get an early diagnosis (even though it might have been a couple of months earlier) compared with people who developed far worse bone problems before their GP or equivalent realised what was going on. The massive hit of steroids that Dr.Ko gave me while I was still with the NHS at Broomfield seems to have stopped the bone lesions in their tracks (helped by the radiotherapy for the big hip one). With luck it'll be a long time before they start getting worse again.
Friday, 8 November 2019
Sleep (08/11/19)
Day two of Dex (and the last of this cycle) - had a good four hours uninterrupted from 0340 to 0740. Dare I hope that I'm starting to adjust to the dex sleeplessness?
Thursday, 7 November 2019
Dentist
No problem at all getting dentist and assistant to wear face masks - which they certainly should do anyway!
07/11/19
Here we are in Dexamethasone World again, after a week away. Went to bed at 0300, slept through till 0600, woke up wide awake. Could be worse for the next couple of nights, and probably will be.
Now in front of the computer again, checking a few news sites to see if anything interesting has happened in the last three hours. Answer: no. I might try another Stranger Things, but my reaction to Series 3 so far is the same as the general one - the tone has shifted away in a different direction, the characters don't seem to be quite themselves any more, and the show isn't as compelling as it used to be. Perhaps its the inevitable result of working with such a young group of central characters while the cast are growing up - but look how well Game of Thrones handled the same issue.
Later this morning, back the dentist for the final appointment to fit my new crown. I've got the top man, who doesn't usually wear a face mask although most of the dentists there do (apart from one who I'm told claims an allergy). I'm not risking another infection and hospital stay - the timings make it possible that I picked up the recent infection at the dentists - so I shall have to take him on about this. Which might be a bit tricky.
The swelling around my ankles - I think I can call it ankle oedema now after a conversation with the cancer nurses yesterday - hasn't subsided as completely as it has been doing overnight. Maybe because I had only three hours lying flat, maybe it's the dex encouraging fluid retention (also low volume of overnight urine production). No doubt that the new footstool downstairs helps, but up here in my study the best I can do while using the computer is one foot at a time up on the shelf underneath the desk top. I'm trying both at once and it is possible, but too uncomfortable to stay with for more than a few minutes.
Now in front of the computer again, checking a few news sites to see if anything interesting has happened in the last three hours. Answer: no. I might try another Stranger Things, but my reaction to Series 3 so far is the same as the general one - the tone has shifted away in a different direction, the characters don't seem to be quite themselves any more, and the show isn't as compelling as it used to be. Perhaps its the inevitable result of working with such a young group of central characters while the cast are growing up - but look how well Game of Thrones handled the same issue.
Later this morning, back the dentist for the final appointment to fit my new crown. I've got the top man, who doesn't usually wear a face mask although most of the dentists there do (apart from one who I'm told claims an allergy). I'm not risking another infection and hospital stay - the timings make it possible that I picked up the recent infection at the dentists - so I shall have to take him on about this. Which might be a bit tricky.
The swelling around my ankles - I think I can call it ankle oedema now after a conversation with the cancer nurses yesterday - hasn't subsided as completely as it has been doing overnight. Maybe because I had only three hours lying flat, maybe it's the dex encouraging fluid retention (also low volume of overnight urine production). No doubt that the new footstool downstairs helps, but up here in my study the best I can do while using the computer is one foot at a time up on the shelf underneath the desk top. I'm trying both at once and it is possible, but too uncomfortable to stay with for more than a few minutes.
Wednesday, 6 November 2019
Chemo (06/11/19)
Back at the Springfield Oncology Centre today for my third Velcade injection. No reaction again, despite all the people on the 'Myeloma Support Group' Facebook group who report endless problems with it.
Velcade means another two days of Dexamethasone (started this morning), so expecting a few nights of disrupted sleep. Just after I'd got it more or less back to normal...
Velcade means another two days of Dexamethasone (started this morning), so expecting a few nights of disrupted sleep. Just after I'd got it more or less back to normal...
Tuesday, 5 November 2019
Delta?
We saw Sue's new cardiologist today. His name is Dr.Gamma. One can't help wondering what became of Drs. Alpha and Beta...
She's going to have a balloon angioplasty (insertion of a stent into a coronary artery to improve blood flow) in a couple of weeks. It could have been sooner, but unavoidable diary commitments got in the way.
As for me, temperature is holding steady at normal levels and blood pressure has returned to my usual 110/70 or thereabouts. Not the very low figures like 80/54 that I was getting in hospital. So I doubt there is good reason to change the medication, although I will raise the subject with my GP.
She's going to have a balloon angioplasty (insertion of a stent into a coronary artery to improve blood flow) in a couple of weeks. It could have been sooner, but unavoidable diary commitments got in the way.
As for me, temperature is holding steady at normal levels and blood pressure has returned to my usual 110/70 or thereabouts. Not the very low figures like 80/54 that I was getting in hospital. So I doubt there is good reason to change the medication, although I will raise the subject with my GP.
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