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...
Friday, 4 October 2019
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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