How are you?

"How're you doing?" "You okay?

These are understandably the most common questions that I'm presented with. I'm not insensitive or callous enough to misunderstand the urge to ask these sort of questions but I do find it quite difficult to give anything but platitudinous, apparently dismissive answers.

This entry will serve as an update and to try and explain why I may appear withdrawn at times and why I'm sometimes reluctant to be social.

The physical effects of the primary tumour are that I feel as though I have a couple of pounds of lead sat in my pelvis. This sensation of mass is permanent (it is an exaggeration but that is the sensation), it makes sitting, walking, driving and standing a little uncomfortable. The only real relief from it is gained laying down.

Apart from the discomfort, the main effect is on my bladder, I'm back to square one. Actually it's worse than it was when I first presented with the symptoms. Now it ranges from uncomfortable to painful when passing water, occasionally very painful (usually every trip to the toilet in the night is in this category). The urge to pee can be immediate, little or no warning and with reduced ability to hold back. In the night it's what wakes me almost hourly now and because it's at the point where the urge finally penetrates my sleep, by the time I'm awake the need to pee is so great that it can be very painful indeed. The delay makes things worse both in terms of the discomfort and the duration (it's like wringing a damp cloth in terms of flow).

Quite regularly I feel a spasm that begins somewhere at the pit of my stomach, a bolt of sharp, stabbing discomfort that travels either along my urethra or to the perineum. It can make me twitch or jerk spasmodically and because it comes without warning it's difficult to suppress.

The secondary cancer in my hip and femur sometimes ache. This isn't that bad. It's a sort of dull background ache that is mostly masked by the pain control I'm using. At worst it can wake me at night (not often so far) or make it difficult to sit still.

It seems to be the case that the worst of it is first thing in the morning and then from mid-evening until I can get to sleep. I don't know why precisely. My theory is that by the morning my overnight pain control has worn off and it takes a while for the next dose to get to work. By the evening it's probably a cumulative effect of the day's activity and the weariness that builds as the day goes on.

I'm reluctant to share these periods with anyone because it's not easy to hide the effects. I'm aware that people are conscious of the condition, I'm oddly embarrassed by it but more importantly for me I dislike the obvious discomfort of others who wish to do or say something yet know there's nothing they can do. I find their frustration harder to deal with than my own discomfort.

Then there's the mental effects. To be honest these aren't too bad. I'm not given to self pity and I still don't feel hard done by. Depression isn't an issue. I suppose the knowledge that what future I have is truncated throws me back onto my stock of memories a little more often than I used to but it isn't with any sense of lost opportunities or (many) regrets.

In the New Year I have an appointment for the next hormone injection and to arrange the next blood sample for a PSA test before the February oncology appointment. I intend discussing what the next step in pain management is because I'm close to the limit (sometimes at the limit) of what is the safe dosage of my current pain killer.

I hope that this won't put anyone off from asking me to be sociable, that's not the intent. Rather, I just wanted to explain why I may at times be reluctant to spend as much time with you as I once may have done or would really prefer now.

Oh yes, happy solstice everyone. Wassail!

Some Thinking Needed

The oncology appointment has come and gone. I was told the result of the latest PSA blood test and the full-body, bone X-Ray.

I'm beginning to wonder if there's any point in submitting myself to these tests. I say that not to dismiss the efforts of the health professionals but to say that the results were no surprise to me. I anticipated the results. I'm not clairvoyant, it's just that I'm aware of what's going on because I'm being told by my body.

So I was told that my latest PSA is now 114. That the hormone suppressor is no longer as effective as it once was is not news to me. It's documented that it has time-limited efficacy and I anticipated that. What's not known is how long, in each individual case, it will be before the body overcomes the artificial blocking of testosterone production.

I had about nine months of relief and I'm grateful for it. It would have been nice had it lasted longer but let's not be greedy. To recap, my PSA scores have gone from 55 to 1.75, then to 77 and now 114.

The additional daily treatment of 50mg Bicalutamide hasn't achieved anything so I've been told to desist taking the tablet. Sod's Law! I'd just renewed my prescription (I wonder if they'll sell on ebay?).

I still have to submit to the three monthly injections. They may still be doing something other than inducing the deeply annoying side-effects. My PSA score might be higher and climbing faster without them.

The X-Ray has confirmed what I know; Charlie has spread his tentacles to a hip, a femur and my pelvis. The latter is in the region of my coccyx and is the most noticeable or persistent source of discomfort.

Apparently the X-Ray isn't terribly clear when it comes to my femur and it was suggested that I have another X-Ray of the affected bone to see the extent better. It was explained that if it's severe it could cause a fracture. If that's the case the proposed route is surgery to insert a strengthening rod into the bone.

The offer was to go there and then for the X-Ray. I declined. I think there's an element of "belt & braces" in this suggestion. The femur isn't causing me much discomfort (at present) so I think it's unlikely that it's any more of a fracture risk than falling off a motorcycle is. I'm also reticent about such an invasive procedure when I'm already in what may be termed a less than tip-top condition. That's bound to adversely affect recovery from surgery.

The other offer is a course of Chemotherapy. It was expressed that Chemo might stunt Charlie's growth and this in turn may extend my life. I did sign the necessary permission and release forms there and then. This I did so that if it is borne upon me that this is a good course I can relatively quickly begin the procedure but my first reaction is to decline Chemotherapy.

So that's the reason for the title of this entry.

I have some information to hand. Had I committed to Chemotherapy there and then it would begin in December. I'd be prescribed (more) steroids to be taken before each session. The sessions themselves would be administered in hospital, last about one hour and Docetaxel (Taxotere®) given via a drip.

I have a list of the likely side-effects. None (bar even more weight gain) really bother me specifically. What does is the fact that the treatment itself reduces quality of life for some speculative improvement at some undefined and tenuous period in the future. Do I submit to months of feeling even worse than I do at present and wager those months against a putative improvement? Those who know me well will know that I'm not much of a gambler. My instinct is that there are too many variables to take a punt. There are certain things that I want to be in a fit enough state to do in the next few months, I want to be able to welcome the next family member into the world for one thing and I have a project to finish.

I need to think.

In the Waiting Room

Today I had another of the three monthly injections and arranged an appointment for the next PSA blood sample.

The last trip to hospital for the X-Rays went better than the first time. Partly I suppose that knowing what to expect but in part because this time the dye injection went without a hiccup. On the previous occasion there was a problem getting the needle to deliver the dye into the right place and it had to be repeated in the other elbow joint. The big difference this time was that I managed to get through the one-hour X-Ray without needing to pass water.

That was a concern as my early symptoms have returned, at least insofar as bladder issues go. It seems that as my PSA has gone back up the original symptoms are returning. It seems logical.

What this means is that my nights are much disturbed again. Sometimes I wake every hour on the hour. It adds up to being quite wearing leaving me tired for the day. It also makes travel more problematic. As long as I can plan longer journeys, I can limit my liquid intake beforehand and thereby avoid the discomfort to a degree. I still find that I need to stop quite frequently and that plotting public toilets is now a part of my travel routine.

I've learned that popping a pain-killer when needed is not the way to deal with the background discomfort, that the correct procedure is to take the pills routinely, so that I'm sort of topped-up. As I've found, when the pain control wears off in the night taking a pill then means that it takes a few hours for the effects to kick-in.

With this in mind my doctor has prescribed Brufen Retard. It's not for those with a cretinous disposition but a slow release, eight times strength version of Ibuprofen. I stick to my double strength Ibuprofen during the day and take the Retard before bed time. It does the trick but the pharmacist was a bit concerned when I bought my usual box of 96 double strength pills at the same time. Ibuprofen can damage the stomach lining leading to ulcers. There's a treatment that can be prescribed to coat the stomach but as I don't seem to be suffering any side-effects I'm holding off adding to the growing daily medication.

Talking of pills; as I've mentioned, my heightened PSA has resulted in me taking the pill form of the hormone suppressor daily to boost the injections. This seems to have increased the severity of the hot flushes with the addition of a precursor wave of what I can best describe as queasiness. At least it gives me bit of a warning that I'm about to begin perspiring like (fill in your preferred simile here - my favourite is very un-PC) .

My next oncology appointment is scheduled for 11th November. The PSA blood sample will have been taken and the results known by that date. As I've not heard anything about the full-bone X-Ray so far, I'm assuming that I'll hear the results of that on the 11th too. I'm working on the principal that as the results would have been available twenty-four hours after the X-Ray, if there was anything other than expected, I'd have been told sooner.

So I feel as though my life is one of constant waiting (hence the title of this missive). I'm either waiting for a treatment, an investigation, the results or the next manifestation of the malignancy. We are all to a degree in life's waiting room so I've got no reason to complain or to plead for special treatment.

The main constraint or effect is that I feel unable to plan much beyond a few weeks ahead and each night, the thought of sleep is blighted by the knowledge that within an hour, two at most, I'll be awake and fumbling my way to the bathroom. I'll admit that occasionally this gets me down a little. It's no excuse for self-pity and I'm able to avoid that destructive emotion, it's just tedious and unproductive. Fortunately, it doesn't strike very often, I recognise its onset and can easily get beyond it without resorting to artificial support.

I don't mean this to sound bleak. Reading it over, it does seem so. Be assured that I'm quite content despite the above catalogue of woe.

The Machine That Goes Ping!

Well I have today received a date for a return trip to the ominously named Nuclear Medicine Department.

Looking at the schedule it will take half a day to complete. At least I know what to expect after the first time.

The same procedure to begin with; an injection of a trace dye into the bone blood vessels, then two hours for that to get around the system drinking a few litres of fluids to flush the excess dye in order to avoid over exposing the X-Ray.

Then it's into the machine for a full body X-Ray. Last time that took an hour or so.

This time there's an additional "localised bone scan" too. Presumably to have a close-up gander at the places they found Charlie lurking last time.

I'll expect a return to oncology to be advised of the results within a few weeks of the scans. I'll share them once I know.

Experience tells me that the speed with which things are being arranged is an indication that the news won't be good. It's serves to anticipate that.

All the seven's, Sunset Strip!

Well that will date me if nothing else. Way back in the days of black and white TV, when cathode ray tubes and valves needed time to warm-up, there was an American TV programme (it would be a program to them of course) called 77 Sunset Strip. It even had a catchy tune.

http://youtu.be/weAIhNDn034

So what's with the 77?

Back in the earliest entry I mentioned that my PSA score was 55. Last September it had dropped to 1.75. Today, following another blood sample taken a week ago, you've guessed, it's shot back up. This time to 77.

It's no real surprise to me. The signals have been there for a while now, many of the earliest symptoms have been present (I won't reprise them, scroll back to the first entry if you need a refresher).

Whereas I'd been able to pop a double strength Ibuprofen once in a while and that's all it took to suppress the discomfort, these days I'm swallowing them like sweeties. I did take medical advice and I'm assured that it's actually quite safe to take double the recommended dose which would mean 8 per day. I'm not there yet, five or six a day at the moment and once I get to the maximum I'll see what stronger stuff can be obtained by prescription.

The cheapest source is Sainsbury's, £3 for 96 400mg tablets. I'm saving the NHS a bloody fortune.

At present I've been prescribed a course of Bicalutamide (Google it if you wish) to back up the injections. Basically it's more of the jollop that I'm injected with every three months. Belt and braces I suppose. The side effects of the injections have been becoming more pronounced in recent months. The prospect of more isn't exactly filling me with pleasure.

I have to see my GP to discuss the situation. Soon I'll be giving another blood sample for another PSA test to see if the added pills are doing anything. There's also a plan to put me in the machine that goes 'Ping' again, sometime in the next week or so (I think) to see how far the metastasis has progressed (or not). The thing is that "Charlie" has only been spotted once so far, that was on the occasion of the first X-Ray and scan. It could be that "Charlie", like his host, is bit of an idle bugger and dragging his (metaphorical) heels. It's equally true that he may be of a hyperactive bent and is charging about the place like a demented squatter poking his unwanted nose into every unoccupied nook and cranny. Until he's spotted again via X-Ray, we won't know into which category he fits. There are some indications that he might be a bit more active than I'd wish but I could be wrong (again).

All this was inevitable so it's not really causing me much angst. It's the hospital visits that I find the worst part. Parking is a nightmare (even for motorcycles) and the place is full of sick people!

I've decided that it's time to sort out my "bucket list". On the off chance that a reader doesn't know what a "bucket list" is, it's a list of things to do before kicking the bucket.

Anyone with an ounce of imagination or any sense of enquiry will realise that there must by default be things that cannot be achieved. So, with that in mind, here's my "bucket list":


My Bucket List

1. Have no bucket list.


That was easy and it will ensure that I achieve my goal.

Smile. Worse things happen at sea.

A Reality

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.

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.