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.
Tuesday, 11 December 2012
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.
Wednesday, 15 August 2012
Ouch!
Today I received the latest instalment in my anti-testosterone medication. It was distinctly uncomfortable. Odd that the last one I didn't even feel. I remarked to the nurse that she'd lost her touch but she blamed it upon bad luck in hitting a nerve. I think that I may have hit one too.
The last month has been mainly dealing with the hot-flushes. I have a fairly large multi speed electric fan that I use in the garage for when I need to have a bike running (to keep the bike from over-heating). It's a bit too noisy to have in the bedroom so I've knocked-up a Heath Robinson affair out of an old computer fan, a hobbyist "third hand" and a power pack that takes eight 1.5volt re-chargeable batteries. It's nice and quiet yet produces enough of a cooling breeze to be effective. I put it on the bedside table and it runs all night quietly directing a cool breeze on me.
The last month has been mainly dealing with the hot-flushes. I have a fairly large multi speed electric fan that I use in the garage for when I need to have a bike running (to keep the bike from over-heating). It's a bit too noisy to have in the bedroom so I've knocked-up a Heath Robinson affair out of an old computer fan, a hobbyist "third hand" and a power pack that takes eight 1.5volt re-chargeable batteries. It's nice and quiet yet produces enough of a cooling breeze to be effective. I put it on the bedside table and it runs all night quietly directing a cool breeze on me.
I think that there may be a marketing opportunity here!
I haven't found as simple a remedy for the lethargy. The remedy I have found is a lot more involved, it requires an old motorcycle and many hours of tearing it apart, fixing bits that need it, polishing and cleaning things before sticking it all back together. It works too (so does the motorbike fortunately).
Apart from the above mentioned side-effect of the medication, I've noticed that certain things are shrinking (both of them that live in a little pouch made up of spare elbow skin). Still, at least I can multi-task now but my sense of direction is deteriorating. The up-side is that I now find myself prepared to ask for directions.
Smile. Things could be worse.
Tuesday, 17 July 2012
Right Royal Flush(es)
Since my last entry, the discomfort has largely subsided, there's still the sensation of a needle having been left in place in my hip but I've not taken medication for a week as it's not been necessary.
When I saw the consultant (back whenever that was) he stressed that the hormone blocker would mean that I'd experience hot flushes among other side-effects. As the injection was around three times the dose of the first, I expected that such an effect would begin almost immediately and I was happy that the hot flushes didn't seem either very noticeable or very frequent.
In the past two weeks however, they have come thick and fast. They seem to be more frequent in the evening and at night, the latter strong enough to wake me to seek relief (usually a cold water splash or if more insistent the use of a fan).
The flushes don't seem to affect my whole body, it's mainly my upper torso and particularly my head. The best description I can think of is to imagine what it must be like to be a cup being filled with boiling water. The heat starts low down and rapidly travels up my shoulders, neck and head culminating in the sensation of beads of sweat bubbling-up on my forehead and scalp.
I'm somewhat bemused by the onset of this. I cannot quite understand how something injected into me two months ago has the capacity to alter its effects when logic would dictate that the effects diminish with time. Still, I'm not complaining, I'm happier to cope with the hot flushes than the discomfort of a few weeks ago.
I'm sometimes surprised by my lack of stamina. Not physically, I can do everything that I want to do, it's this weariness that overtakes me so quickly. It could be exacerbated by the interrupted nights but I don't think so as on the occasions where I sleep well I'm still overwhelmed by tiredness within a few hours of waking. It doesn't seem to matter what I'm doing when I feel drowsy. I might feel fine, jump in the car to pop to the shops and just down the road I find that I could happily go to sleep.
I can ignore the urge but it takes quite a lot of concentration. Activity helps and I have often lately found myself in company and had to excuse myself and leave so as to fight the urge to close my eyes. I must appear quite rude at times. Being on my feet, walking and active helps to stave-off the urge to sleep but as a recent weekend away showed, I pay for it later by needing a couple of days to recover.
So if you are reading this and have wondered why I seem at times to be paying less attention to you than I would or should, if I've suddenly declared that I need to leave, that's the reason. It may also explain why I sometimes don't answer the door or the 'phone, I'm probably asleep!
When I saw the consultant (back whenever that was) he stressed that the hormone blocker would mean that I'd experience hot flushes among other side-effects. As the injection was around three times the dose of the first, I expected that such an effect would begin almost immediately and I was happy that the hot flushes didn't seem either very noticeable or very frequent.
In the past two weeks however, they have come thick and fast. They seem to be more frequent in the evening and at night, the latter strong enough to wake me to seek relief (usually a cold water splash or if more insistent the use of a fan).
The flushes don't seem to affect my whole body, it's mainly my upper torso and particularly my head. The best description I can think of is to imagine what it must be like to be a cup being filled with boiling water. The heat starts low down and rapidly travels up my shoulders, neck and head culminating in the sensation of beads of sweat bubbling-up on my forehead and scalp.
I'm somewhat bemused by the onset of this. I cannot quite understand how something injected into me two months ago has the capacity to alter its effects when logic would dictate that the effects diminish with time. Still, I'm not complaining, I'm happier to cope with the hot flushes than the discomfort of a few weeks ago.
I'm sometimes surprised by my lack of stamina. Not physically, I can do everything that I want to do, it's this weariness that overtakes me so quickly. It could be exacerbated by the interrupted nights but I don't think so as on the occasions where I sleep well I'm still overwhelmed by tiredness within a few hours of waking. It doesn't seem to matter what I'm doing when I feel drowsy. I might feel fine, jump in the car to pop to the shops and just down the road I find that I could happily go to sleep.
I can ignore the urge but it takes quite a lot of concentration. Activity helps and I have often lately found myself in company and had to excuse myself and leave so as to fight the urge to close my eyes. I must appear quite rude at times. Being on my feet, walking and active helps to stave-off the urge to sleep but as a recent weekend away showed, I pay for it later by needing a couple of days to recover.
So if you are reading this and have wondered why I seem at times to be paying less attention to you than I would or should, if I've suddenly declared that I need to leave, that's the reason. It may also explain why I sometimes don't answer the door or the 'phone, I'm probably asleep!
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