Friday 27 May 2005
Today I attended a radiation therapy orientation held under the auspices of the Cancer Society at the Domain Lodge on Boyle Crescent. It was in the form of a PowerPoint presentation given by Carl, one of the mold room technicians who made a plaster mold of my face yesterday.
Yesterday I thought I was completely free of stress, but in retrospect I can't have been, because I failed to register either Carl's ethnicity or his accent. Today it was very clear to me (I was genuinely calm, I suppose) that Carl is from South Africa. There are quite a few South Africans working in the medical system here - offhand, I can think of an anesthetist, a radiation therapist and a young doctor - so I've had some experience with the accent over the last few months.
Carl gave a well-organized and good-humored presentation which took us through the nuts and bolts, such as parking and showing up at the reception area, and covered the business of the simulation, a session where the experts gather the data on your body that they need for the software that will be used to generate your actual treatment plan, through to the actual treatment.
Side effects vary, but may include:-
(i) tiredness. Advice: drink lots of water to help the body get rid of dead cells.
(ii) skin reaction. Advice: use "a cream called aqueous cream". Dab it on: don't rub it on.
(iii) constipation or diarrhoea. Advice: get a referral to the dietician.
(iv) hair loss. Advice: hair loss will be localized, and will only occur in the area actually receiving radiation.
As far as the brain is concerned, there may be additional side effects, such as nausea, depending on which part of the brain is being treated. This is something I can ask about later, when I see a doctor.
I still don't have a schedule for radiotherapy but once thing I learnt today is that the side effects may continue to build up for a week and a half or so after the administration of the radiation is finished. And that there is typically a follow-up check four weeks after the end of the radiation treatment sessions.
The treatment itself is painless, soundless and noiseless, and is done with a linear accelerator, this being an X-ray machine which generates radiation from electricity. A machine, in other words, which does not contain a radiation source: there is no lump of radioactive material inside the machine.
If it's necessary to make a mask then "We leave the nose and mouth open because it's very important to us that you keep breathing."
The purpose of the mask is twofold. Not only does it allow markings to be made for the correct positioning of the radiation machines, but it also minimizes the risk of the patient moving. We saw a picture of the kind of hard plastic mask that is being made for me, this labeled as an "Ultros shell," and also a picture of a simpler mask, designed for shorter treatment courses (a week or so, perhaps) labeled as an "Orfit shell."
With reference to the mask, in response to questioning, Carl elaborated on the problem of someone's face changing shape because it swells with steroid use or shrinks after steroids are tapered off. This is no problem because the mask can, if necessary, be padded with special material, or heated and reshaped. Or, if it's really necessary, they can make a new mask. No problem!
After Carl was done, Margaret from the Cancer Society stood up and spoke, focusing, if memory serves, on counseling and support services that are available. I came away with a flyer on yoga classes -- once I'm through with all my treatment I'm thinking of doing some yoga as part of a physical rehabilitation plan.
Today's radiation therapy orientation was given to an audience of seven in a very clean well-lit room with plenty of natural light. Afterwards, I went upstairs to the cancer library, another very clean room, again flooded with natural light. They have a useful collection of books. It is possible to borrow three titles for one month, and I borrowed two which looked interesting.
One of these books is "Snake Oil And Other Preoccupations" by John Diamond, a British cancer patient who died in 2001. He was a journalist, and apparently the book includes some pieces taking a sceptical look at "complementary medicine."
The other book is "Time on Fire" by Evan Handler, who I take to be an American, who apparently had leukemia. The book was first published in 1996. I don't know if the author is still alive.
[As will become clear later, Eric Handler was indeed alive, living in America and, apparently, doing well in life.]
Since I got sick the world seems to be full of things to read about cancer -- I've noticed a string of articles touching on the subject in the newspapers, for example - and, naturally, I have an interest in this kind of thing.
My parents had come along for the radiation therapy presentation, and afterwards we dropped by at the Takapuna Public Library, which is part of the same public library system as the Devonport Public Library, but which is considerably bigger. (My spell-checker doesn't like "Takapuna" and suggests "Tampon" instead, but I issue a veto.)
I borrowed four more books including (to reread, since I'm sure I've read it before) Stephen King's short story collection "Everything's Eventual".
The introduction includes a comment that I don't quite understand. Pretty much every time I read an American book there will be at least one cultural reference that I don't quite get. I can identify "tamales" as being some kind of Mexican food, for example, but I can't pin it down closer than that, and I don't have a mental image to match this "stucco" that I keep reading about.
In this case the mystery comment, which dates to the year 2002 or thereabouts, is as follows:-
My story, when it was done, was quite long. Susan Moldow, my editor at Scribner (as an X-FILES fan, I call her AGENT Moldow ... you work it out), called one day prompted by Ralph Vicinanza and asked if I had anything I'd like to try in the electronic marketplace.
I can't do the working out. I'm vaguely aware of the existence of a TV show called, I think, THE X-FILES, which I (perhaps not quite correctly) understand to be a series of stories about science fiction menaces which are combatted by agents from either the FBI or some FBI-ish organization. But I've never seen this show so I can't figure out if "AGENT Moldow" is supposed to be some kind of obscure pun (I'm not much good at puns) or a reference to something else that I'm completely missing.
Whatever the reference I'm not getting, it's to something in American culture, not to something here in New Zealand. But I occasionally have similar experiences with New Zealand things, since I've been away in Japan for seven years, and haven't entirely caught up.
One thing that initially puzzled me was a "life coach". The first time I saw this term was in a job advertisement. Someone was wanting people to work as "life coaches". Later, I found out that this term also seems to be in use in Britain and the States, so it's not just a quirky New Zealand thing. Rather, it's a new evolutionary twist in mainstream Western culture that has taken place while I've been on Spaceship Japan.
As far as I can figure it out, a "life coach" is someone you pay to act as your bossy big sister or something like that. I don't think I'm cut out for that kind of job, and I'm surprised that it's the kind of thing that someone would pay money for. But I get the impression that it's quite a big business.
So that was my day, then. The good news was that I had no trouble with mood control today, and felt upbeat and positive. And so I should. I'm getting a good deal, and have done all the way.
I've just been dipping into Handler's book "Time on Fire" and sampling his account of the waiting room hell that awaited him when he was first admitted to a hospital in New York. Wait, be ignored, get interrogated, wait.
Me, the first time I was admitted, I showed up at a reception desk, and the people there paged my brother-in-law, who was on shift as the Duty Manager of the hour, and he showed up a couple of minutes later and escorted me to my room ...
If I was going to choose a title for an account of my personal encounter with the hospital system then a good title would be "A Dream Run Through The System".
I note that Handler's book, first published in 1996 and so presumably dealing with events somewhat earlier, gives an account of patients smoking in hospital. I have no idea if patients were allowed to smoke in Auckland Hospital back in the 1990s, but these days that's an absolute no-no: whether you're a patient or a staff member, if you want to smoke then you have to physically leave the hospital's property, so, occasionally, when arriving at the hospital, I see a patient in street person mode, complete with a drip stand, huddled against the increasingly chill weather and puffing desperately on a fag.
I find a note at the back of "Time on Fire" saying that the author was "cured through bone-marrow transplantation in 1987", so it seems that this account is from the 1980s.
* * *
Monday 30 May 2005
Today I felt about as energetic as a plate of cold spaghetti, reluctant to wake up and even more reluctant to get out of bed. The weather was cold, wet and windy. Winter had most definitely arrived. However, I had a hospital appointment, so I had no option: I dragged myself out of bed and was soon on an early ferry heading across the harbor to the city of Auckland.
At the hospital, I once again laid myself down on the narrow stretcher in the mold room. The red overhead laser was used to line up my body a the clear plastic mold was fitted to my face. It had a strange smell which reminded me of liquid detergent. Side flaps were fitted to the mask and a headrest was prepared and then marked with my name. To keep my head in the same place for the X-rays, I will always be lying on the same headrest, which will be stored with the mask.
There then followed a waiting room delay, after which I was escorted to a room marked "SIMULATION 1", which was dominated by a big X-ray machine. In this room they had a green laser. As far as I can recall, this is the first green laser I have ever seen anywhere.
Two things happened in this room. One was that I had a CAT scan and the other was that the X-ray team used indelible markers to put lines on the hard shell of the mask. However, I find myself already unable to recall the order of these events.
The third and final stage was for me to listen to a doctor talk about the possible side effects of radiation therapy, after which I signed an informed consent form. The possible side effects include everything from a lessened ability to concentrate and a loss of the ability to multitask to malignancy.
The doctor didn't seem to think he could quantify the risk of what (to be honest) we would have to call brain damage, but he did put the chances of the treatment itself resulting in a malignancy at one in a thousand. It seems that nausea is a possibility, and the nausea, like any other side effect, may develop after the radiation has been administered. That night, for example, or a few days later.
I came away with a piece of blue cardboard giving the details of my first treatment appointment, which is at 09:00 on Tuesday 21 June. This is when they start using X-rays to give me radiation. There will be twenty treatment sessions in all, delivering a total of thirty grays of radiation.
I came away from the hospital feeling flat, wintry and subdued, and, during the trip back to Devonport, I spent some time staring at recent photos of my daughter and thinking of a different world.