Tuesday, 31 December 2013

Day 10 started just as early as the day before and we took the bus through darkness, arriving still in darkness to find the door still locked.  I didn't force it open because my wife forbad such an action (and because the door is in front of not one, not two but THREE CCTV cameras.

After yesterday, I used one glass for both Abiraterone and Prednisolone and restricted my fluid intake.  They tell me now that I'm properly hydrated.  Yesterday, apparently, my bladder was 150% full, which explains why I pissed myself.  Today was fine.  I didn't piss myself and all was over by 10 O'Clock... shame I also had an appointment at the same hospital in the afternoon.

Andrea didn't want to inject the Zolodex implant because she had no written authority, but in the afternoon, Yanni, the trial nurse was happy to do so.  It was her who injected my first implant back when she was working at Whittington Hospital, so I trust her.  It does hurt but it's over soon.

Getting the blood test for my monthly oncology visit, the phlebotomist couldn't find a vein in the crook of my elbow so she tied a tourniquet around my wrist and found a vein on the back of my hand.  I wouldn't mind so much but it was my left hand, and I'm finding that the lack of testosterone is undoing the conditioning that made me act as if I was right handed, and my left hand is becoming more and more dominant.  In retrospect, given my CP affects the right side more than the left, I might have been much better off had I insisted on left handedness.

I saw Maria, I weigh 125.8 kg my blood pressure is 122 over 88 and my pulse rate was 97 bpm and my bloods were fine.  On the whole I'm extremely healthy for a fat and lethargic middle aged civil servant, let alone a cancer patient.  The New Year is coming up and I'm pretty damned sure I'm well on my way to becoming a cancer SURVIVOR.  So Yay NHS, Yay RFH and Yay me!

Monday, 30 December 2013

Woke up at "are you fucking kidding me? O'Clock" (also known as 4AM).  Showered, took drugs, grabbed breakfast to leave the house at 5:30 AM.  The buses ran beautifully and we arrived at the hospital at 6:45 AM.  I was supposed to be there at 7:30.  Either way, the doors were locked and eventually we had to find another way in.  While waiting, several people who work their were unable to get in with their passes. We of course didn't have passes.  Not a good move by the Royal Free I'm afraid.

Day 9 was really bad for me though because half way through, I was shaking and trembling as I tried to hold my water.  I think I may have pissed myself.  Eventually they stopped the machine and gave me a bottle to piss into then told me to empty my bladder and drink more water ready to try again in twenty minutes.

The second time everything went well.  The question remains though, whether this difficulty in controlling my bladder is the first effect of Radiation.  I'll be seeing Maria tomorrow, so I'll ask her.

Saturday, 28 December 2013

Woke up at five thirty AM. I know it was five thirty because my wife said, "Al, it's 5:30, wake up".  So, Day eight began in a rush again, quick shower, bowl of porridge, run for the bus...

But the bus stopped just behind an ambulance spread across the road to stop traffic and keep rubberneckers away from a fatal traffic accident.  We walked ten minutes back to the tube station and took the tube instead.  Trouble is, Belsize Park had no service running, so we took the tube to Euston, and then a 168 bus.  We arrived ten minutes early with the doors already open.

The treatment itself went well, apart from the low temperature of the room where the machine is, and the fact that they left the radio on, which pisses me off because it interferes with my attempts to sing in order to time the treatment.  Normally Babylon if Fallen, followed by Bella Ciao is enough to tell me it's time to get up.

I was relaxed anyway but, by the end, of course, had to rush to the toilet and piss before even tying my shoelaces.  We were home by about eleven thirty, which is pretty impressive in my view.  London Transport, you've done well.

Friday, 27 December 2013

Day seven had me worried to begin with my morning motion spattered and spread across the bowl, making me wonder whether that was a new symptom.  When I got to the hospital though and inserted the enema, it became clear that whatever the problem was, it soon cleared up.  Probably something I ate.

Not much to report from today's session.  I arrived before the place was open, then sat there, reading Mick Wall's new biography of Lou Reed, published within weeks of his death.   Radio went without a hitch.

On the way home, I stopped off at Boots in Wood Green to fill my zolodex prescription.  They had it in stock, so no more waiting days for them to get it delivered.

In the afternoon, I had the appointment I mentioned earlier.  I arrived only to be told I did not, after all, have an appointment.  Of course, being an articulate sort of chap whose existential rage is masked most of the time, I smiled and schmoozed and saw the doctor after an hour's wait.  I now have a doctor's note that will last until 13th March.

Tuesday, 24 December 2013

Day six began with me looking at my mobile and my wife saying "Six AM".  "Oh shit!" said I and jumped out of bed, ran to the shower and somehow, we left the house by six thirty AM.  Everything was going well, too well and we had plenty of time, when the C11 bus decided to divert.  We hadn't realised though that we were only five or ten minutes' walk from the Royal Free Hospital by this time.

The driver said he'd be driving to somewhere about five minutes from Belsize Park, and so close to RFH, but if only he'd told us.  As it was, we reached the Fiddler's Elbow before we realised we could get off and catch the 46 or the 24 to get to the hospital.

I arrived 20 minutes early, went through the usual motions, smiled and Hi'd to my fellow patients and everything went reasonably well.  One change I have noticed though is that my pubic hair is much more sparse than usual, so the falling out business has begun.

I called my GP's surgery and re-arranged the call from Dr McMillan so that instead I'd see Dr Ratnan at 4PM on Friday instead.  Result!  Although offset by the rearrangement of Friday's appointment for Radiotherapy, so I would not actually be getting irradiated at 10AM.  Oh well, so it goes.

Smooth runnings home.  We even went to the new Sainsburys and did some last minute Christmas shopping.  We'll be having Butternut soup for Christmas dinner.  Very nice indeed.

My mood is buoyant and I wish a Merry Christmas to both of my readers.

Monday, 23 December 2013

Nothing much to report from Sunday save a crawl around Tesco to get the week's shopping and otherwise a day much as that described in Ray Bradbury's story, Getting Through Sunday Somehow.

So, Day 5.  Again, I was awake in the wee small hours and in the cold and dark took a bus first to Euston and then to the Royal Free Hospital.  On the way, the driver stopped and opened his doors at every stop whether there were passengers there or not.  My wife began complaining about the slowness of our passage so we got off and changed buses, but we still arrived with ten minutes to spare.

Today, the enema worked really quickly and within half an hour I was shitting my insides out.  I also sat on the toilet certain I was about to vomit but mercifully I did not.   The treatment itself was fine except for one moment when I had the notion that my arm was in the way of the beam so I moved it up slightly before getting the voice of the radiographer going "Nice and still, we're nearly done".  And, by 11:40 we were done.

I've been getting a strange side effect, although whether that's or radiation or depression (or even exhaustion), I'm not sure.  I've felt alienated from my body as if I was watching myself on a film (and a fairly boring film at that).  This dissociation comes and goes, but seems to happen several times a day.  I'll ask Maria (Dr Maria Vilarino-Varela) about it when I see her next.

This afternoon, I had a call from the Stampede trial nurse, suggesting that my appointment with Maria be cancelled next Tuesday.  After discussion, we decided not to cancel it after all, because the protocols of the Stampede trial requires that I be seen by an oncologist every four to six weeks and my appointment has already been delayed by a week.

I have my prescription for Goserelin.  Let's hope I can get it filled before 31 December, that's by no means certain given the disruption that is Christmas.  I also have an appointment to speak to a doctor at 10 O'Clock on Friday but I'll have to cancel that tomorrow on account of the fact I'll be getting treatment at that time.

Saturday, 21 December 2013

Day four began at 4:45 AM.  I had time for a quick shower before breakfast and made a cuppa for my wife, even though I'm not allowed caffeine myself.  I drank water though, about a litre and a half to make sure I would not be dehydrated when I arrived.  We left the house at 6AM and by some miracle of unpredictability, arrived at the Royal Free Hospital at 7:10 AM.

I was forty minutes early, so the Radiotherapy Department was still locked, so we went inside the main building and a cleaner showed us how to get into the Radiotherapy building despite the locked door,  The receptionist arrived at 7:45 so I had time before even starting to prep.

The enema worked really quickly but I waited until the right time before starting to drink water.  I said hello to my fellow patients as they arrived and thought happy thoughts until my time arrived at 9:50 AM, by which time I was desperate for a pee, but that was not going to happen.  As the radiation treatment went on, the urge to piss was becoming more and more painful.  By the time it ended, I jumped from the bench and ran to the toilet without even doing up my shoelaces.  It's a blessing in retrospect, that I didn't go arse over tit.

So... once that was all over, we started back on the same journey in reverse.  This time, it took two hours. That shows how traffic slows down in London as the day goes on.  Also... as a special treat, Andrea had said a cup of coffee on Saturday after treatment was acceptable as long as I didn't drink any on Sunday.  Man that was one awesome cup of Douwe Egbert's.

Friday, 20 December 2013

I missed a day, so days two and three get mixed together into a mashup.

Day two, I woke up dehydrated and with a splitting headache. It wasn't a hangover because my body is, unfortunately a booze-free zone.  Moved like a zombie and fell asleep on the bus.  In fact, I may have fallen asleep on two of them.  Either way, I arrived early, bummed a couple of microenemas from Andrea, the specialist radiology nurse and waited until 9:30 before I went to the toilet; broke of the nozzle; shoved the micolette up my arse; and squeezed.

Then I waited and waited, reading Scott Lynch's "The Lies of Locke Lamora", until I was overcome by the overwhelming urge to shit.  I emptied my bowels and followed the prep procedure by drinking five hundred mls of water over fifteen minutes and then waiting forty five minutes until they zapped me full of radiation.

Afterwards the Radiographer said she was concerned that my bladder was only one third full.  Andrea reiterated the need to remain as well hydrated as possible.  This may be a problem but I decided to do what I could.

And so... Day Three.  This time, I drank about a litre and a half of water between 5AM and 7:45 AM.  This time I was not dehydrated, but by the time the treatment was over, I was dying for a piss.

While we were waiting, one of my fellow patients said that he had noticed my wife plaiting my hair while we were waiting the other day.  We laughed and smiled and it was a little more companionable.  The faces are becoming familiar, patients, receptionist, radiographers and nurses.

On the way home, we visited Mother Earth in Newington Green and bought some herbal teas to replace the caffeine I am forbidden.

Wednesday, 18 December 2013

First day of Radiation Treatment.

I get up at 5AM and take Abiraterone.  Then I go back to sleep.  Next thing I know, it's 6:30 AM and my wife is chivvying me along so I go and shower, eat breakfast with prednisolone and set off for the bus stop.

Three bus rides later, we (my wife and I) are at the Royal Free Hospital and I'm ready to prep.  Fuirst I have to take an enema.  Half an hour later, I empty bladder and bowels.  Then I have to drink 500 mil of water in 15 minutes and hold it for forty five... but I'm early and I can't hold it, so I have to top up again with another 500 ml.  Then the radiographer comes.

I'm led into the "controlled" area, lie down and for twenty minutes get zapped with radiation.  When I've finished she gives me a sheet of paper with my attendances for the next two weeks.  I have to come in on Saturdays because Christmas day and Boxing day are impossible.  Time svary, and for some of them, I have to be at the Royal Free for 7:45... not looking forward to that at all.

I come home to a huge pile of presents from my lovely colleagues at work.  Thanks for that guys.  It's not the presents themselves, some of which are chocolate, which I won't be able to eat until February... it's the thought that really does count in this case, that all these people are thinking of me and care for me.  I blush with delight at the very thought of it.

Tomorrow I need to be there by 9:45, not a problem at all it seems.

Tuesday, 17 December 2013

There's one day to go before I catch a few rays as Darryl Jones (no not the bass player, this is a fellow Nimmer) so aptly put it.  In a way though, it's started already.  Here's the story so far... all the things I've had to have done to prepare me for the radiation therapy to come.

First, back in early November, I had to have gold seeds inserted.  Gold Seed Insertion involves me lying down on a couch in the urology department with my knees under my chin and my arse sticking out so the doctor could insert first her fingers and then I have no idea what inside my rectum.

I don't know what it was she put in there but it hurt like buggery.  In fact, it probably hurt MORE than buggery because if buggery hurt that much, I can't imagine anybody wanting to do it.  The point of this undignified and painful exercise was to insert three tiny pieces of gold into my prostate in such a position that it would become easy to aim the beams, hopefully without zapping my bladder, or bowels or anything else other than the prostate and the lymph nodes.

So I'm lying there on the slab and she shoves it in and I let out a moan and then a loud GODVERDOMME! and it goes on BOZHE MOI and MEERY DIERIE DOVVEL! and finally a resounding MOTHER FFFFFUCKER!  I apologised of course, for such foul language but they understood, especially when I said it had hurt more than the biopsy itself.

That's not the end though.  A month or so ago, I had to have a planning scan, where they made sure my prostate was in the right place and aimed laser beams and tattooed me where the beams should go.  A much less undignified procedure and even the cannula that Yann (one of the radiology nurses) inserted was not particularly painful this time.

There is a downside though.  to get ready I need an empty bowel and a full bladder.  I'll explain the procedure after I've had the first dose, but beforehand, I have to get ready, so... no fizzy drinks including beer, no drinking from the bottle, no caffeine, no beans, no peas, no lentils, no bananas, no melons, no prunes, no broccoli, no cauliflower, no fatty food, no brussels sprouts, no chocolate, and I must drink plenty water to get well hydrated, difficult indeed with the heating on all night.

The worst of that, of course is the caffeine withdrawal combined with a vitamin D deficiency caused by my forgetting to get more calcichew.  My head hurts, my bones hurt and I want to sleep forever.  Other than that, all is fine and dandy.

Tot ziens.

Monday, 16 December 2013

Hello.  My name is Alcuin Edwards.  I am fifty three years old, still in an entry level job at the Department of Health.  On the side I'm a poet, novelist and singer but not sufficiently successful in any of those roles to quit my day job.  On the whole, I believe my life so far has been wasted.  Everybody say Aaah.

I've been lucky healthwise.  I have athetoid type Cerebral Palsy but it's a mere 20% disability and I can cope with it so that nobody notices.  I have Meniere's Disease, but just get one attack a year and little or no hearing loss so far, so that too is a blessing.

But now I have cancer.

Nothing to worry about, it's prostate cancer, men with prostate cancer tend to die with it not of it, unless one is unlucky like Frank Zappa.  Mine isn't the slow growing kind though.  When I was diagnosed earlier in the year, they said it was very aggressive, having already consumed 90% of my prostate and spread to the Seminal Vesicles.  Although there was no sign of metastasis, they told me that there was a forty percent chance of micrometastases in my bones or lymph nodes.

For the last six months, I've been on various drugs to turn off my balls because the cancer thrives on testosterone.  I've been on Goserelin, Bicalutamide, Abiraterone, Prednisolone and Vitamin D (the latter to offset the effects of the others).  As a result I've had hot flushes, some bone pain, a little confusion and a lot of tiredness although the latter reduced when I stopped going to work.

All that though, is just to shrink the cancer.  Now comes the time to kill it.  For that, I'm going to have Intensity modulated Radiation Treatment (radiotherapy).  It starts on Wednesday.  I'm a little apprehensive but I daresay it'll all be okay.

More of that tomorrow though.