Day 37: The last day. End of the road. At about 10AM this morning, my status changed from cancer patient to cancer SURVIVOR. I am still waiting for the results of course, but my PSA count had already reached zero from drugs alone, so I don't see how the cancer could have the resilience to survive radiation (although I should recognise that the cancer formed from my own resilient flesh).
Today's appointment was earlier than ever. So I had to begin prep at 7:20 AM, despite the continuing tube strike. Not a problem. We arrived in plenty of time and, just after I'd self-administered the enema, Hopie went off to a seminar leaving me to wait for two hours. In fact it was longer than two hours as it happens.
None of the people I'd met over the months were there apart from the bald Asian woman who never speaks, so I spent the time reading Stranger in a Strange Land, which provided some insight, particularly into my own relationship with the treatment. I am not a passive recipient of medical techniques done to me. Instead I grok in fullness the radiation feed I am experiencing and engage with the radiographers as people providing me a service.
For example, today they kept me waiting, for which they apologised, which meant that my nails were digging into my flesh so hard I thought I would bleed in my effort not to pee. Once they finished, I asked "may I please have a urine bottle" and peed in front of them because I couldn't wait. No embarrassment, no hesitation, and after that, "Thank you very much" and goodbye.
My rectum is still pretty sore, so I'll be delaying the return to a normal diet, but coffee is now okay and perhaps tomorrow, I shall also eat chocolate. The possibilities are endless. I have my life back.
Radiation Diary
Thursday 6 February 2014
Wednesday 5 February 2014
Day 36 hit me like a bullet in the gut. There was a tube strike, and all the buses were chocablock even before 6AM. Everything was all the more hectic as a result of that. Somehow we still arrived before the doors were unlocked, but it wasn't long before Edith, the cleaner came to unlock the door.
Everything went well as we waited. I was reading Stranger in a Strange Land, even found time to write a poem while I was waiting. (Something I should never have stopped doing back in my twenties).
Once more I fell asleep on the table, so I was fairly comfortable. But then, when I came home, the fatigue was like a brick wall, and my guts exploded time after time. I was knocked out and slept for most of the afternoon and still feel like I'm in zombie mode.
Whew. Like I have the Old Man of the Sea on my shoulders. I'm glad tomorrow is my last day of radiation therapy.
Everything went well as we waited. I was reading Stranger in a Strange Land, even found time to write a poem while I was waiting. (Something I should never have stopped doing back in my twenties).
Once more I fell asleep on the table, so I was fairly comfortable. But then, when I came home, the fatigue was like a brick wall, and my guts exploded time after time. I was knocked out and slept for most of the afternoon and still feel like I'm in zombie mode.
Whew. Like I have the Old Man of the Sea on my shoulders. I'm glad tomorrow is my last day of radiation therapy.
Tuesday 4 February 2014
Days 34 and 35 passed with little or nothing in the way of hitches. I had a little pain today in my groin. There were something like five or six separate moments of extreme pain, each over in a second. I don't know what caused them but for a moment, they were horrible.
Yesterday, I met an old woman who was sitting outside, waiting to see whether she could have palliative radiotherapy to stop the constant pain from the tumor in her skull. She'd already lost both breasts, eight years before but for a while after that she was able to begin swimming again.
Now though, she was cheerfully dying in great pain. The radiotherapy she was seeking would not cure the cancer but might reduce the constant pain. She still smiled as she explained that she was waiting for the doctor to see her and decide whether she could have the treatment. She thought this unlikely though because her mouth and throat were both full of ulcers from earlier treatments.
Today, one of my fellow patients noted I would soon be finished. He said I must be looking forward to eating Brussels sprouts again. Actually it's cabbage, especially red cabbage I'm missing, but now I understand I'll have to wait another two weeks before I can have that. So it goes.
Two treatments left now. Soon it'll be over.
Yesterday, I met an old woman who was sitting outside, waiting to see whether she could have palliative radiotherapy to stop the constant pain from the tumor in her skull. She'd already lost both breasts, eight years before but for a while after that she was able to begin swimming again.
Now though, she was cheerfully dying in great pain. The radiotherapy she was seeking would not cure the cancer but might reduce the constant pain. She still smiled as she explained that she was waiting for the doctor to see her and decide whether she could have the treatment. She thought this unlikely though because her mouth and throat were both full of ulcers from earlier treatments.
Today, one of my fellow patients noted I would soon be finished. He said I must be looking forward to eating Brussels sprouts again. Actually it's cabbage, especially red cabbage I'm missing, but now I understand I'll have to wait another two weeks before I can have that. So it goes.
Two treatments left now. Soon it'll be over.
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.
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.
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.
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.
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.
Subscribe to:
Posts (Atom)