Friday, 31 January 2014

On Day 33 it's time to think of the side-effects I've actually had from radiotherapy.   They certainly aren't as horrible as they were painted before I started.

Dissociation.  Nobody even mentioned this as a possible side effect but my friend, who was treated earlier in this year for pancreatic cancer had a similar experience.  I got to feeling that Alcuin Edwards was a fictional character I needed to keep an eye on but that person was not 'me'. It was as if I was watching a holo of my life rather than experiencing it myself.  This MAY have been a symptom of ...

Fatigue.  I get so tired, as indeed do nine out of ten people with cancer of any type whether as a result of radiotherapy, chemotherapy, hormone treatment, or the cancer itself.  Sleep and rest don't make this fatigue go away.  All that works is trying to keep active even when you don't have the energy, the concentration or the motivation.  I feel like a dead man walking, not a zombie but a lych, still walking around through pure force of will.

Irritated rectum. Pain, itches, burning, the whole nine yards, mixed in with a bad case of the old farmer Giles plus constipation AND diarrhoea (although not at the same time).

Irritated urethra.  Feels like I want to pee when I don't, ibuprofen helps with this but it's mixed with...

Increased Passage of Water.  I have to pee more often during the day and added to that I have to get up several times in the night to pee, which of course exacerbates the fatigue.

And finally...

Incontinence.  It's only once or twice but I have leaked urine once or twice over these weeks.  This is embarrassing but I've always been able to clean up before anyone notices.

On the whole though, the effects have been minimal.  I'm glad to say, especially if it turns out to have killed the cancer, Radiotherapy is well worthwhile.

Thursday, 30 January 2014

Day 32 now, and I can really see this thing is coming to an end.  Only five more treatments and I get to walk away.  I spoke to Yann today and he said that everything is fine now, my bladder full, my bowels empty just as it should be.  I found today that I can still interrupt the flow when peeing (this proved essential when taking my weekly urine test), so all going swimmingly.

Now though, the time is coming to look forward.  I return to work soon, even though I don't earn enough to cover outgoings.  Cancer has been great as a main but not too credible worry, taking my mind off all the niggling little things that make my life the piece of shit it has been for years.  It's almost heretical to say it, but I shall miss cancer.

Wednesday, 29 January 2014

Yesterday was day 30 and it was a very long day indeed.  After the usual early start, we arrived once more before the doors were open, with me once again having to self-administer an enema in the toilet while my wife waited outside in the corridor.  This time, the clinical waste receptacle was jammed shut and I had to remove the lid in order to deposit my used microenema.  So it goes.

Radiotherapy itself was easy. So much so that I fell asleep only to be woken by the radiologist asking me how I'd managed to sleep on that hard and narrow couch.

All sorted and time to go home right?  Wrong.  Next step is a blood test.  The doctor hadn't labeled it urgent so I had to join the early morning queue and wait my term.  No worries, it's not like I had anywhere else to go and it was still four hours before my oncology department.

So, for the next few hours, my wife and I sat in the hospital canteen surreptitiously eating packed sandwiches and flasked tea - yes, of course, it was blackcurrant and vanilla tea because I'm still not allowed caffeine.  After that, It reading my kindle until I felt so tired I had to sleep.  Eventually I woke up enough to go and sign into the hospital and sit in the oncology waiting room.

Before I saw the doctor, nurses weighed me (125.8 kilos, took my pulse (about 92bps) and my bloodpressure (a very normal or even slightly low 124 over 73).  Then it was the trial nurse's turn to give me a questionnaire to fill in.  I'm pretty much okay with little in the way of waterworks problems and only a little depression to worry about.  I would worry, but I can't seem to summon the energy.

Finally, I got to see the doctor.  She said I was fine and the symptoms I had, irritation of the urethra, wind, constipation were all symptoms of radiation treatment and nothing to worry about.  She said they would go away.  She was more worried about the depression but I said I could live with it.  I'd had depression before and saw no reason to be miserable about felling down.  It was just one of those things.

And of course, once I've seen the doctor, it's time to make my way to the trial pharmacy for my drugs... then to wait.  Then to wait some more.  Then back down to oncology to pick up the prescription that hadn't been sent yet.  Then back up to the trial pharmacy to collect the drugs before going home.

No wonder I was too tired to blog yesterday.

Today was day 31.  It was pissing down with rain as we sped through the deserted darkness of a London early morning.  Bus drivers drove as if they had somewhere to be and we were at the hospital in less than an hour.  Don't tell their bosses, I don't think London Transport would approve of expeditious bus services.

We sat in the main hospital reception for a while, directing people around the hospital for a half hour before returning to the radiotherapy department.  We were still the first ones in and had to turn on the lights.  Everything went well this time until the end when I finished treatment, bursting for a piss, only to find all of the toilets full.  I had to dance around for a couple of minutes desperately trying not to pee before somebody came out and finally I could pee in privacy.  Never have I been more proud of not pissing myself (well, not since I was about 5 anyway).

And now there are only six days left.  A week tomorrow, I shall cease to be a cancer patient and become instead, a cancer survivor.  Then I'll have to go to work... unless somebody out there can offer me another job?  I'm sure I'd make a good journalist.

Monday, 27 January 2014

Day 29 began at 4:30 AM with my wife telling me to wake up and take my Abiraterone.  I did that and then went back to sleep again so that by the time we were ready to go, we were late and ended up having to take the tube to Euston and then run for the bus.
I was loping along at a high speed, not exactly sprinting and not even out of breath so I guess that means that despite the cancer and the radiation, I'm fitter than I've been since I reached puberty.  That's very much a plus.
Even so, we arrived to find the doors locked until some kind soul let us in, informing us that it was only twenty past seven.  There was still nobody there when I tool my enema, nor even twenty minutes later, when the enema took effect and I had to rush to the toilet.
The time passed really quickly because I spent it doing a writing exercise followed by a sudoku. Until, of course, the time came for the treatment.
I was busting.  I told them I was busting but lay down anyway until part way through the day's treatment, I could not stop moving as I tried desperately to hold it in.  They stopped the treatment and then had me pacing up and down while they looked for a urine bottle.  But they couldn't find one so I had to go empty my bladder in the toilet, then return to the waiting room, drink one more cup of water, and then wait ten minutes for them to call me.
Everything went without a hitch this time, but I still had to run to the toilet at the end of it.
More was to come.  This afternoon, my constipation disappeared dramatically to be replaced by diarrhoea.  So much for anticlimax.  I may have spoken too soon.

Friday, 24 January 2014

Another week gone by and there's light at the end of the tunnel.

Tuesday was day 25.  Yet another early start, marked by my noticing blood in my shit before I even left home.  On arrival, the machine that usually treats me was being taken out of service so that it could be serviced.  They gave me a new patient tracker which showed that I would get a lie in until 6AM the next day not having to leave the house until 7AM, and not being treated until the relatively late hour of 9AM.

Wednesday was day 26 and the time came to use the aforementioned machine.  There was also more blood in my shit and some pelvic pain but on the other hand, a more leisurely trip to the hospital.  I'm starting to think about afterward.  I feel I've broken the back of the treatment and despite the niggling little symptoms that are showing up, I believe I will survive with little ill-effect.  Maybe radiation is not so bad after all.  Maria came along to chat to me and told me she was happy with my scans, which was good news, perhaps that

When my time came though, something had happened to the other machine and there was a delay.  I was told about it at the last moment, when I'd already been holding my water for an hour. I couldn't hold it any longer and had to rush to the toilets for a piss.  When the machine was fixed, about ten minutes later, I told them what I'd done but the Radiologist asked if I still felt full, which I did and the treatment went ahead anyway.

Day 27 was Yesterday and at my weekly meeting with Yann, the radiology nurse, he explained that everything was fine except that my weekly scan on Tuesday had shown that my rectum was full with either wind or shit.  I didn't know which but then realised that the feeling I'd been worrying about was constipation, unusual in radiotherapy patients because the radiation tends to cause diarrhoea, rather than its opposite.  Obviously the relatively low fibre diet I'm on offsets the issues caused by radiation.

Today was Day 28, another week over.  An anticlimax perhaps with everything going fairly smoothly, so much so that when I climbed onto the bed for treatment I was to the nanometre, exactly where I needed to be, with no need for adjustment.    And now there are nine treatments left.

My wife keeps telling me to live in the Now, but now it's close to the end, that becomes difficult.  I can think about my new years' resolutions and what I need to do to fulfill them.  Time had stopped and now it is moving again.

Monday, 20 January 2014

Day 23, last Friday.  I don't remember much about it, only that I was tired and that somehow I was able to drink coffee afterward.  Saturday I walked to Staples, which was useless, then PC World and Currys and Maplins and in the end, didn't bother to buy a new laptop after all.

Then I came home and found the phone wasn't working.  The Internet was fine and so was the TV but no phone.  I had to order an engineer via Virgin media's website.

Today was day 24.  The place was locked and empty when we arrived and I began prep before the radiation department was even unlocked.  When the time came for my treatment, though, I'd fallen asleep.  They told me that the machine needs to be serviced and so the appointments are being rearranged.  For me that means arriving at 9AM tomorrow and from then until 31 January, I'll be arriving at 7:30 every day.

Mostly, I sat around alone today until the engineer came from Virgin Media.  He was a Scottish chap called Amin, very helpful and quickly realised the fault was outside, so we have working telephones again.  Yay us!

Thursday, 16 January 2014

Day 22:  As usual, it began in darkness and I reached the hospital in darkness (at 7:17 AM) after one of the three bus drivers on the route drove as if he was trying to see how slowly he could make the bus go before the engine failed on the hills.

Still on time, though so at 7:30 I began my preparation with an enema in the toilets, followed by a couple of hours sitting in front of the TV, but I couldn't honestly tell you what was on.

At 8:30 as usual, I began drinking water to ensure my bladder was full but just before that, Yann (one of the Radiology nurses) called me into his office to discuss how it was going and any symptoms.  I told him my anus was irritated.  He offered me drugs to numb it, but I told him that I wasn't quite ready for drugs yet.  I also told him I sometimes had the sensation of desperately wanting a piss, but that on some occasions, this feeling would go away, suggesting it wasn't caused by a full bladder.

The most useful thing from Yann (and I will wait and see if anything comes of it) that he'd try to get my oncology appointment on 28 January moved to the Radiotherapy Department so that it could all be managed as a single visit rather than me having to attend radiotherapy at 7:30 AM, finishing by about 10AM, going for a blood test and then having to wait until 14:20 for my oncology appointment.

As usual, he also gave me a bottle for my weekly urine sample.  I have to fill it after treatment at which point, of course, I was so desperate that, after fiddling with my underpants in a desperate attempt to find my penis, it was only a matter of luck that I didn't piss myself before I was able to collect the sample.  Luck prevailed though and I managed to fill the bottle without pissing all over myself or the floor.

On the whole, that was a good day.

Wednesday, 15 January 2014

Days nineteen, twenty and twenty-one all seem to meld into one.  I am unbelievably tired, somehow managing to arrive at 7AM every day with buses moving as quickly as they need to be.  My wife comes with me and then goes on to other things, mainly looking after her grandson, Elijah who is two years old and has chicken pox.

Me, I just sit there.  I look at my kindle for a bit then put it down.  Mostly I just sit there, half-asleep with a fatigue that buries me under tons of sand.  I can function on autopilot and mostly I do.

As well as the tiredness is the irritation in my arse, occasional unspecified discomfort in bladder or bowels or whatever else exists in that part of my body.  (I'm not a doctor and don't know what it is, all I know is, sometimes it hurts).

I'm home by 11:30, even on Monday (day 19) when I stopped off at Waterstones to spend a book token.  (Yellow Blue Tibia by Adam Roberts and Jutta Ditfurth's German language biography of Ulrike Meinhoff).  Once I'm home I sit in front of the computer failing to be creative.  I wallow in depression, mostly at the thought of having to go back to work once I feel better, and often, I sleep.  Today I slept about four hours.  I only hope that doesn't keep me awake this evening. Somehow I doubt that it will.

Sweet dreams everybody.

Saturday, 11 January 2014

It's the weekend.  We've done the shopping and in a short while we'll be making our way to Tottenham Police Station for the Vigil for Mark Duggan.  As far as radiotherapy is concerned, today is a day off, time to relax and to drink the occasional cup of coffee (which is, of course) awesome.  My very dear friend Carien, who was diagnosed with pancreatic cancer early in 2013 has been blogging her experiences in Dutch for most of that year but now has begun blogging in English.  You can find her blog here.

For days 17 and 18 (Thursday and Friday) I was able to have something of a lie in with treatment not starting until later (10:45 and 11:20 respectively).  It was still dark when we arrived but that's an artifact of London Transport schedules.  Earlier than 7.30 AM, the buses take about an hour.  Later than 7.30AM, they take two, this gives a choice between arriving ridiculously early, or being late.  I prefer the latter, because the alternative might be attempting to self-administer an enema on the bus.  Given my name is not Leigh Bowery that's not going to happen.

On day 17, I had a chat with the nurse, Andrea, who told me that when they took the weekly picture on Monday, my bladder was only two thirds full and she reiterated the need for me to keep hydrated.  I know, but I so don't want to piss myself on the table again, so it's something of a dilemma.

On day 18 there was a new radiologist who slightly changed the routine for getting off the table.  I'm used to the table lowering at the same time as it is moved out from under the machinery.  Accordingly, I waited until my head was no longer underneath the device (and so there was no danger of cracking my head) and jumped from the table without realising until a fraction of a second before I jumped, that it was still five feet from the floor.  This pissed of the radiologist no end, so I apologised profusely (alright maybe not VERY profusely) and made my way to the toilet before going home.

Wednesday, 8 January 2014

Seems I'm slowing down.  Day 15 and Day 16 over and not a word from me.

Day 15 Yesterday, started in the wee small hours.  We traveled to RFH and then Hopie went home.  While I was waiting, Lauren Watts, a medical student who is following my case, came along.  We had a chat and then I asked if she could watch, which was okay, so everybody was happy.  Bizarrely, this was the first time I got on the table and was in exactly the right position.  Yay me.

Afterward, I took the bus to work, handed in my fit note, had a long chat with my line manager who suggested a return date of 3 March with a phased return.  Sounds good to me.  Said Happy New Year to my colleagues including Natasha, who gave me a big hug that near broke my spine.  Looks like I've been missed at work, which is good for the ego.

Day 16 today.  In a little later, sat and waited and then went home.  A little more concerned with the Mark Duggan verdict than my own cancer.  Police kicked my door down about a month or so before they killed Mark Duggan.  I took them to court but the court decided that surprise surprise, the police were acting lawfully.  Never mind though, sixteen down, only seventeen to go.  I'm close to the halfway point.

Monday, 6 January 2014

Day 13 (Saturday) and Day 14 )Today have come and gone and I've been too tired to post.  What can I say?  Mea Culpa.  Mea Maxima Culpa.

Saturday we came home via Mother Earth in Newington Green.  We bought some rice cakes and some healthy vegan snack bars, which were very nice.  Then we went to Sainsbury's and did the shopping and then my body thought it was bedtime.

Today, my wife came all the way to the hospital with me and then, at 7:30 left to go to a seminar close to our home.  That's very loving of her, but I'm sure you all knew that already.

I'm starting to get some abdominal pain and an arse irritated by constant use of enemas.  I'm also incredibly tired.  I do a lot of sleeping, and a lot of lying in bed waiting for morning.  I think I may be depressed as well.  (The doctor says this is normal... so, severe reactive depression.  Hey ho).

Friday, 3 January 2014

Happy new year.  This is becoming monotonous.  Day 11 and Day 12 started just like Day 10, with us travelling through darkness.  Worst was this morning, with me getting up at 3:45 AM.  We didn't leave the house until about 6AM but I was up anyway.

Yesterday (Day 11) we left the house at 06:06 and reached the hospital before 7AM.  Every bus arrived just as we reached the stop and the drivers failed to stop at most of the other stops, allowing us to make a two hour journey in 55 minutes.  Trouble was, once again, we arrived to a broken door that failed to open.  Still, we were home by eleven.

Still seems as though there are few ill-effects with the possible exception of extreme tiredness (more so that I'd expect from the early starts, especially with my early bedtimes).  Let's hope it stays that way.  We'll see.