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I know that some people are concerned that I may becoming withdrawn, that I'm not as gregarious as I may once have appeared (truth be told I never have been an outgoing sort of bod.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.

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!

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 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.

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.

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.

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!

Is this a taste of things to come?

In the past few weeks Charlie has been pretty much constantly in the background. It began with a dull ache in the region of my left hip. It started as the sort of level of discomfort that was noticeable only when I thought about it, when my concentration wandered from whatever I was doing.

Slowly it has increased to the point where I'm always conscious of it unless something deflects and holds my attention. It's best described as the sensation you have during an injection; after the needle has gone in, you are left with the knowledge that the needle is there, a single point that seems to focus your attention upon it. It feels as though someone has left a needle in the back of my left hip just above the femur socket. It's not muscular pain, it's not like the discomfort that comes with a strain or heavy bruise.

There's also a similar sensation around my coccyx although not as consistent or as persistent.

I can gain relief by popping a double strength Ibuprofen. Not something I do with any enthusiasm and I try to avoid doing so until just before bed. I'm loathe to become too reliant on pain killers too soon and I'll avoid recourse to them for as long as I can. For that reason, I'm not going to mention it to my GP yet. Pain is such a personal thing and what I consider painful might not really rank very high on the scale; I'm quite possibly making a mountain out of a molehill. As someone who has escaped living with pain all my life I don't really have a meaningful comparison (I'm eternally grateful for that fact).

Probably the most debilitating aspects so far are the tiredness and the intrusion into my thoughts.

I get so weary at times that I give-in to it and go to bed mid-morning or mid-afternoon. Whether I do or not has no effect upon how well I sleep at night. Sleep also has the benefit of keeping the thoughts from intruding. I can push through the weariness when it strikes if I need or want to. Doing so has the beneficial effect of making me so tired by the time I go to bed at night that the dark thoughts don't have a chance to intrude.

Let me try and explain: Normally, before sleep overtakes me, I think through the day, or recent events, sometimes I look forward to things to come. In the past months, no matter what I'm thinking about as I drift off, Charlie and all the possible ramifications, charges to the front of my mind like a small child demanding attention. Like an insistent spoilt child, Charlie is hard to ignore.

I'd like to place on record how humbling I find the kindness of people. I can remain fairly dispassionate and unmoved by Charlie's affect upon me but the concern and kindness of others moves me more than I can say. I really don't deserve the compassion.