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.