It's not pleasing to come to a realisation that things are unlikely to ever get better than they are right now.
What's a bit depressing to accept is that that applies equally to the periods of discomfort.
It's a bit bleak but it's reality.
Friday, 17 May 2013
Thursday, 4 April 2013
A year on...
I thought that I'd update you all with my news, such as it is. Nothing really to report on the cancer. It's still there and I'm still getting the tri-monthly injections of hormone blocker jism. I seem to have become habituated to the current effects of both the side-effects of the drug and the discomfort in my pelvic region. I should be due another consultancy soon. I have the little bag to send off a blood sample for another PSA test but so far no indication of when that will be.
In all honesty I'm not that bothered. The only thing that another PSA test will show is whether or not the hormone blocker is still working. The suppression of my original symptoms seems to suggest that it is. Being truly objective I have to report that it isn't quite as effective in that regard as it once was but then that's no surprise as it's known to lose efficacy with time and use.
It's odd but the effects of the injection seem strongest in the middle of the three months. There's no sudden or dramatic increase in the efficacy immediately after the injection and no reduction as I approach the next dose. The side-effects are most noticeable for a month in the middle. Perhaps that's just me and my odd metabolism?
As I say, the only thing that another consultancy will tell me is that the PSA has altered, up, down or stayed the same. Without another full-body X-ray and soft tissue scan it remains unknown whether the spread has been arrested or not.
The more I think about it the less important it seems to know because I'm pretty certain that I'll get the information from my body. It's not as if knowing the status is going to alter treatment.
Some may think that it's unduly pessimistic to comment that around this time last year I was told "five years" and that I'm down to four now. My view is that it's simply pragmatic. It's a bit like my working days when I 'booked' someone for speeding or whatever: I used to tell the person that it may result in no further action, a letter cautioning the driver or a Summons to court, that it was best to anticipate the worst and anything less would be a bonus. With that in mind, anything more than four more years is a bonus - quality of the time being another consideration.
Please don't let this affect you detrimentally. It doesn't have that effect upon me. Well that's not quite true. Sometimes I do have a visit from a Churchillian "Black Dog" but it's fleeting and mostly due to an unpleasant, unhealthy self-obsession. It doesn't take much to pull myself out of it, going for a ride or simply looking at my bike is enough and if I can't be bothered to do either of those things just looking at a photo of my great-nephew Freddie does the trick every time.
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Tuesday, 11 December 2012
My New Companion
I seem to have acquired a permanent companion. I'm loathe to call it pain, rather it's discomfort at worst and just a nagging presence at best. Occasionally it's a sharp prod but not very often.
Now the worst thing at the moment is the not knowing. Is my new companion simply my imagination? Might it be nothing more than the normal aches and pains of the aging process? How about just being unlucky enough to have become arthritic and coincidentally just in the area where I was told the cancer was detected by the bone X-Ray?
Logic would say no.
Part reasoning and part enquiry has to led to some better understanding of the medical thinking behind not putting me back in the machine that goes 'ping' (a Monty Python's Meaning of life reference in case you don't already know).
So, some months back Charlie was found to have spread his tentacles to three spots or places (I have no idea of the size nor where exactly - I wasn't told and I didn't ask) in my pelvis and a lymph node. From my understanding, cancer reacts and grows differently according to type. Much of how rapidly it grows depends on the type of cancer and to some degree upon the host. Genetics plays a part and is why the government recently announced that they are going to ask volunteers to donate DNA for individual genomes to be mapped. The idea is that where aggressive cancers are slow to spread, there may be something in that particular genome that could point towards possible benefits for those less genetically fortunate.
Following along those lines, no-one has any real idea how long Charlie has been burrowing his way into my bones. He could be any age. Depending on my particular genetic make up, he could have been a couple of years old when first spotted or only a few weeks old. Finding three locations where he's set up home doesn't give any indication of how malignant or how benign he his. Well not until someone has another peep at him to see if he's spreading out into the neighbourhood. The time for taking another butcher's is considered best left until the first anniversary of his discovery and that should provide a measure of his voracity or hopefully his torpor. That's why the consultant didn't offer any treatment beyond the current hormone suppressant. No-one knows how fast or how slowly Charlie is doing his thing, if he's doing anything at all.
Which brings me back to the beginning of this entry. For a month or so my new companion has been fairly consistently present. I think I've reported before that the best description is like having had a needle left in my hip. There's a centre of the discomfort and a dull ache radiating outwards from it.
This is accompanied by an ache spreading down my left femur. Sometimes it's near the hip, at others it reaches down to my knee.
Of course there's the possibility that it's something unrelated and I'm just being a big girl's blouse. Quite why I seem to need twelve hours sleep in every twenty-four hours could just be an instinct to hibernate at this time of year and my (some think, irrational) hatred for the Christmas binge but that would be more understandable if the sleep was an unbroken period instead of the four or at best five hours I seem to manage.
I cannot rule out that I'm just being a big jessie and it's really all in my head. Who knows? Once the "festivities" have been and gone, I might perk-up a bit.
Now the worst thing at the moment is the not knowing. Is my new companion simply my imagination? Might it be nothing more than the normal aches and pains of the aging process? How about just being unlucky enough to have become arthritic and coincidentally just in the area where I was told the cancer was detected by the bone X-Ray?
Logic would say no.
Part reasoning and part enquiry has to led to some better understanding of the medical thinking behind not putting me back in the machine that goes 'ping' (a Monty Python's Meaning of life reference in case you don't already know).
So, some months back Charlie was found to have spread his tentacles to three spots or places (I have no idea of the size nor where exactly - I wasn't told and I didn't ask) in my pelvis and a lymph node. From my understanding, cancer reacts and grows differently according to type. Much of how rapidly it grows depends on the type of cancer and to some degree upon the host. Genetics plays a part and is why the government recently announced that they are going to ask volunteers to donate DNA for individual genomes to be mapped. The idea is that where aggressive cancers are slow to spread, there may be something in that particular genome that could point towards possible benefits for those less genetically fortunate.
Following along those lines, no-one has any real idea how long Charlie has been burrowing his way into my bones. He could be any age. Depending on my particular genetic make up, he could have been a couple of years old when first spotted or only a few weeks old. Finding three locations where he's set up home doesn't give any indication of how malignant or how benign he his. Well not until someone has another peep at him to see if he's spreading out into the neighbourhood. The time for taking another butcher's is considered best left until the first anniversary of his discovery and that should provide a measure of his voracity or hopefully his torpor. That's why the consultant didn't offer any treatment beyond the current hormone suppressant. No-one knows how fast or how slowly Charlie is doing his thing, if he's doing anything at all.
Which brings me back to the beginning of this entry. For a month or so my new companion has been fairly consistently present. I think I've reported before that the best description is like having had a needle left in my hip. There's a centre of the discomfort and a dull ache radiating outwards from it.
This is accompanied by an ache spreading down my left femur. Sometimes it's near the hip, at others it reaches down to my knee.
Of course there's the possibility that it's something unrelated and I'm just being a big girl's blouse. Quite why I seem to need twelve hours sleep in every twenty-four hours could just be an instinct to hibernate at this time of year and my (some think, irrational) hatred for the Christmas binge but that would be more understandable if the sleep was an unbroken period instead of the four or at best five hours I seem to manage.
I cannot rule out that I'm just being a big jessie and it's really all in my head. Who knows? Once the "festivities" have been and gone, I might perk-up a bit.
Sunday, 7 October 2012
Don't Ask - Don't Tell.
"Don't ask, don't tell" was (is?) the shorthand used to deal with homosexuality in the US Military.
For those of a nervous disposition, don't worry. This isn't about my sexuality, an announcement regarding my orientation or even sex. I just want to use that neat little phrase to explain something as it applies to my condition.
I know that some people are concerned that I may becoming withdrawn, that I'm not as gregarious as I may once have appeared (truth be told I never have been an outgoing sort of bod. I'm much more sparing, inclined to ration-out myself. More it has to be admitted in an effort to not inflict myself upon others than anything else).
In this context "don't ask, don't tell" is best described by Christopher Hichens in his last epistle to the world, he writes about dealing with the question "How are you?" He writes:
'But it's not really possible to adopt a stance of "Don't ask, don't tell," either. Like its original, this is a prescription for hypocrisy and double standards. Friends and relatives, obviously, don't really have the option of not making kind enquiries. One way of trying to put them at their ease is to be as candid as possible and not to adopt any sort of euphemism or denial.'
I find myself just avoiding contact with people. I do understand that such enquiries are genuinely meant. That the emotion is not prurient or anything other than a real desire to know and to extend sympathy. Some may feel that not asking will be misread as apathy or worse.
How do you answer? Is the "How are you" really just another way of saying hello? Is the question posited in the expectation of a detailed answer? A short, "I'm okay thank you" might leave the interlocutor feeling shut-out, kept at arms length. Launching into the minutiae of hot flushes, debilitating torpor and aches might cause the questioner to regret asking.
There are a handful of perceptive people who don't ask. They just treat me as they always have, they never begin any meeting or telephone conversation with that awkward question. It's not that they don't care or don't want to know, rather they know that there's no need to ask, that not asking won't be misunderstood as not caring and that if I feel the need to say how I'm feeling I'm comfortable to do so.
I don't care if someone doesn't care either. I certainly wouldn't think badly of anyone not caring. In some ways it may even be preferable, it spares me the responsibility of knowing that others are affected.
This isn't an instruction or a plea to act in opposition to one's natural inclinations, rather it's my explanation for seeming to withdraw slightly and a plea that it's understood in that context. No slight is intended by me and I hope that none is taken.
For those of a nervous disposition, don't worry. This isn't about my sexuality, an announcement regarding my orientation or even sex. I just want to use that neat little phrase to explain something as it applies to my condition.
I know that some people are concerned that I may becoming withdrawn, that I'm not as gregarious as I may once have appeared (truth be told I never have been an outgoing sort of bod. I'm much more sparing, inclined to ration-out myself. More it has to be admitted in an effort to not inflict myself upon others than anything else).
In this context "don't ask, don't tell" is best described by Christopher Hichens in his last epistle to the world, he writes about dealing with the question "How are you?" He writes:
'But it's not really possible to adopt a stance of "Don't ask, don't tell," either. Like its original, this is a prescription for hypocrisy and double standards. Friends and relatives, obviously, don't really have the option of not making kind enquiries. One way of trying to put them at their ease is to be as candid as possible and not to adopt any sort of euphemism or denial.'
I find myself just avoiding contact with people. I do understand that such enquiries are genuinely meant. That the emotion is not prurient or anything other than a real desire to know and to extend sympathy. Some may feel that not asking will be misread as apathy or worse.
How do you answer? Is the "How are you" really just another way of saying hello? Is the question posited in the expectation of a detailed answer? A short, "I'm okay thank you" might leave the interlocutor feeling shut-out, kept at arms length. Launching into the minutiae of hot flushes, debilitating torpor and aches might cause the questioner to regret asking.
There are a handful of perceptive people who don't ask. They just treat me as they always have, they never begin any meeting or telephone conversation with that awkward question. It's not that they don't care or don't want to know, rather they know that there's no need to ask, that not asking won't be misunderstood as not caring and that if I feel the need to say how I'm feeling I'm comfortable to do so.
I don't care if someone doesn't care either. I certainly wouldn't think badly of anyone not caring. In some ways it may even be preferable, it spares me the responsibility of knowing that others are affected.
This isn't an instruction or a plea to act in opposition to one's natural inclinations, rather it's my explanation for seeming to withdraw slightly and a plea that it's understood in that context. No slight is intended by me and I hope that none is taken.
Tuesday, 25 September 2012
Update
I think that I've got things straight in my head now and I've assimilated what it means.
You may recall that my PSA score, when it was first tested, was 55. The "acceptable" level, by which the medical profession mean an increased PSA that requires only "watchful waiting" is 4.
Following my recent blood test, mine has fallen to 1.75. On the face of it, that's good news and I was pleasantly surprised. However, the consultant went on to explain that it was expected but that as Charlie has metastasised, it isn't necessarily a sign of remission. In fact, it is largely palliative, removing the symptoms that I first presented with.
In that respect it has worked. As reported, I don't have the issues that first made me seek medical help, or at least I don't have the worst of them, some persist but much less intrusively.
The prognosis hasn't changed. I still have cancer. I have to accept that until anything to the contrary is established, the cancer is still present and still in my prostate, pelvis and one lymph gland. I specifically asked if the lowered PSA meant an improvement in the prognosis. The consultant reiterated that lymph cancer is too unpredictable to be able to accurately foresee how things will advance.
So I continue on the hormone blocking injections at the same dosage for as long as is necessary. In about six months I'll provide another blood sample for PSA analysis and if it remains low, the next step will be to do some more scans to see what's happening. That's not likely to be before April at the earliest.
Apparently, the side effects of the injections will continue unabated. My age is against me in their severity. It was explained that as the body ages, hormone production weakens naturally and the body gets used to the reduced levels and energy levels decline anyway. At my age, the lack of testosterone is being felt, the mental torpor and physical lethargy that I experience much of the time is the result. There is nothing that can combat this except a determination to resist.
Well that's about it. Some change. Not enough to warrant optimism but better than another round of bad news.
Worse things happen at sea!
You may recall that my PSA score, when it was first tested, was 55. The "acceptable" level, by which the medical profession mean an increased PSA that requires only "watchful waiting" is 4.
Following my recent blood test, mine has fallen to 1.75. On the face of it, that's good news and I was pleasantly surprised. However, the consultant went on to explain that it was expected but that as Charlie has metastasised, it isn't necessarily a sign of remission. In fact, it is largely palliative, removing the symptoms that I first presented with.
In that respect it has worked. As reported, I don't have the issues that first made me seek medical help, or at least I don't have the worst of them, some persist but much less intrusively.
The prognosis hasn't changed. I still have cancer. I have to accept that until anything to the contrary is established, the cancer is still present and still in my prostate, pelvis and one lymph gland. I specifically asked if the lowered PSA meant an improvement in the prognosis. The consultant reiterated that lymph cancer is too unpredictable to be able to accurately foresee how things will advance.
So I continue on the hormone blocking injections at the same dosage for as long as is necessary. In about six months I'll provide another blood sample for PSA analysis and if it remains low, the next step will be to do some more scans to see what's happening. That's not likely to be before April at the earliest.
Apparently, the side effects of the injections will continue unabated. My age is against me in their severity. It was explained that as the body ages, hormone production weakens naturally and the body gets used to the reduced levels and energy levels decline anyway. At my age, the lack of testosterone is being felt, the mental torpor and physical lethargy that I experience much of the time is the result. There is nothing that can combat this except a determination to resist.
Well that's about it. Some change. Not enough to warrant optimism but better than another round of bad news.
Worse things happen at sea!
Monday, 24 September 2012
Full Update to Follow
I'll post something in a day or so. I just want to go over what was said today and make certain that I have things straight in my head.
The one thing that I'm certain of is that my PSA score has fallen and a long way.
The one thing that I'm certain of is that my PSA score has fallen and a long way.
The Condemned Cell
Well today, 24th September, I am to return to the Oncology department of my local hospital to keep a (slightly delayed) appointment.
A couple of weeks ago I gave a blood sample to check my PSA score, the purpose being to see if it has altered since the last one.
Today, I read a newspaper account of a death row prisoner in Texas who has twice got as far as the door of the chamber where he is sentenced to be "humanely" executed by means of a lethal injection, only to have the hand of the executioner stayed by the Supreme Court.
I feel a strange sort of empathy with that man.
Yesterday I gladly accepted the opportunity to be distracted but it was only a partial distraction. I had a rotten night. This morning, despite having some things to do that should offer further distractions, I'm unable to drag my attention from the clock. I'm counting down the hours and minutes to my appointment just as the convicted man's account of the last four hours before the allotted time with his appointment draws nearer.
I'd be lying if I didn't admit to hoping for an intervention equivalent to that of the Supreme Court but hope doesn't seem tangible enough to place much trust in.
I, unlike the condemned man in Texas, can at least do more than sit and wait. So I'd better get on with something purposeful.
A couple of weeks ago I gave a blood sample to check my PSA score, the purpose being to see if it has altered since the last one.
Today, I read a newspaper account of a death row prisoner in Texas who has twice got as far as the door of the chamber where he is sentenced to be "humanely" executed by means of a lethal injection, only to have the hand of the executioner stayed by the Supreme Court.
I feel a strange sort of empathy with that man.
Yesterday I gladly accepted the opportunity to be distracted but it was only a partial distraction. I had a rotten night. This morning, despite having some things to do that should offer further distractions, I'm unable to drag my attention from the clock. I'm counting down the hours and minutes to my appointment just as the convicted man's account of the last four hours before the allotted time with his appointment draws nearer.
I'd be lying if I didn't admit to hoping for an intervention equivalent to that of the Supreme Court but hope doesn't seem tangible enough to place much trust in.
I, unlike the condemned man in Texas, can at least do more than sit and wait. So I'd better get on with something purposeful.
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