THE SAGA OF MY ILLNESS
One of a suite of blog entries about the aftermath of chemotherapy and radiation therapy, including brain damage and eyesight damage; a survivor's account of the aftermath of cns lymphoma, non-Hodgkin's lymphoma of the large B-cell variety, in the author's case cancer of the brain and the spinal cord.
THIS IS A PICTURE OF YOUR GOD:
A HUGH COOK READER.
2006 March 5 Sunday.
* * *
I have begun work on COMRADE RAT MUST DIE, the second volume of what is projected to be a series with the overall title TALES OF OOLONG MORBLOCK. It's set in a modern city complete with buses, cars, subway trains, ferries and helicopters, which means that I do not have the problem of dragging my characters round massive landscapes where they have to ride, raft, hike or spend days on really slow sail ships.
One reason I decided to switch to high tech settings is that I quite simply got tired of all the saga business, the drying out of wet boots, the eating of the ultimately expendable horses and all the rest of it. I've become a big city boy and, though I don't ride motorbikes, I'd like things to be moving along at motorbike speed, thank you very much.
My illness, however, insists on its sage elements, demands that time be endless, that if it takes a week just to have someone come along and stick a needle into your back for a biopsy, then it takes a week.
The only news, if it counts as news, is that for the last three or four days I've been having cramps in my jaw each evening when I brush my teeth. But, weirdly, although I brush my teeth three times a day, it seems that it is only the evening brushing that causes these cramps.
I don't have a real thesis to explain this, except to think that perhaps stress is accumulating through the day.
Got an e-mail from someone who had read my CANCER PATIENT book and thought it a bit weird that I would have liked to have had photos and videos of things that were being done to me, like a lumbar puncture or eye surgery. This, for the reader, was a mystery.
To me, the patient, the things that were done to me, medical procedures, were interesting. Something happens. We're out of saga time and moving along at medical TV show pace, at least for a few minutes.
But the reality of my life is that it does not run at TV tempo. I'm locked into saga mode, with plenty of time to notice the darkening of the weather as we move into autumn here in the Southern Hemisphere, and to monitor, nuance by nuance, the performance of body and mind.
So far, jaw cramp apart, so good.
As far as I can tell.
2006 March 09 Thursday.
This afternoon, on being driven home from the hospital, I was so intent on thinking about my eye surgeon's input that I totally failed to notice that I was being driven across the Harbour Bridge, which is a bit like failing to notice being driven across Sydney Harbour Bridge or the Golden Gate Bridge.
My eye surgeon's tentative hypothesis is that my eyesight problems reflect radiation damage caused by radiotherapy, rather than a return of cancer.
If cancer, he would expect bilateral effects. However, while damage to the right eye is progressive, the right eye now blind but for a little peripheral vision, the left eye, according to my eye test, is stable.
My own subjective impression that the left eye is deteriorating is quite possibly a consequence of the fact that the right eye has more or less failed.
When I had cataract surgery on the right eye, the natural lens was removed but the natural capsule was retained, and was used to stabilize the artificial plastic lens that was inserted into the eye. The capsule has apparently degraded in some way, becoming pitted and dirty, but that does not appear to be the cause of the defect in the right eye.
The optic nerve is observed to be paler in the right eye, and optic nerve problems are not usually reversible.
My eye surgeon thinks my oncologist is right to search for signs of a recurrence of cancer, but, if none is found, then his vote seems to be for radiation.
He was unsurprised by the fact that I am more or less night blind, and attached no particular importance to this.
He observed something which I had not noticed in the mirror, which is that I have developed, once again, a puffy steroid users face, thanks to the dexamethasone I am taking regularly, eight milligrams a day.
My eye surgeon will no longer be working in the public health system one month out, but he told me to see him privately when I next feel a need to do so, free of charge, which was extremely nice of him.
The next step, tomorrow Friday, is a lumbar puncture, a spinal tap, to get a sample to biopsy to see if it can be established that there is cancer in the meninges, the lining which holds the brain and spine.
Feedback, all going to plan, will be available on Friday 17th March.
* * *
2006 March 17 Friday.
Eyesight marginal but alive: that is my medical outcome. A sample taken from the spine was tested in the lab and was found to be clear.
The eyesight damage, presumably caused by radiation treatment, is irreversible. The optic nerve in the right eye had atrophied and the right eye is effectively blind.
I have no guarantee as to what will happen to the left eye, but currently it appears to be stable, giving me workable vision for the moment, though how long that will last for I have no idea.
Meantime, my oncologist tells me that if nothing catastrophic suddenly happens, then he is done with me.
I am currently taking eight milligrams of dexamethasone a day, and now I will taper off to zero over a period of four weeks. First a week on four milligrams then a week on two then a week on one then a week on a half, then done.
I plan to start regular exercise to build up my muscles. The dex has hit the thigh muscles quite hard, although this time I have not suffered any kind of minor bleeding such as nose bleeds or burst capillaries.
Provisionally, all going to plan, I will be heading back to Japan on or about 20 April, which is a bit surprising as I was expecting bad news, and, quite frankly, did not expect to ever see Japan again.
I now have the problem of finding some kind of economic niche for myself in Japan, but I figure that my prospects in Japan are as good or better than they would be in New Zealand.
My plan is to organize myself into a new life on a low gear basis, taking my time.
"It's a good news bad new situation," as my oncologist says.
I take the attitude that a lot of people who are currently dead would, if the had the option, prefer to be alive.
My wife and I have already decided on the hospital where I will get checks, a hospital at Shin Yokohama, a very short commute from our place in Japan.
So I have, at this stage, the bare bones of a plan, and the details will get fleshed out depending on how things go once I am in Japan.
Because I signed up for the national health scheme which operates in Japan, which anyone can join, I can show up at any hospital, and I don't have to worry about whether anyone would want to insure me. It's not an ideal health system but it's good enough for my needs, at least for the moment.
My next move is to get a new passport, and apparently this only takes ten working days. I was able to uplift the necessary form from a travel agent here in Devonport, New Zealand. Apparently all travel agents carry passport application forms, which is very convenient, and, all going to plan, I will mail my application by registered post on Monday, sending it to Wellington, the capital.
Meantime, workwise, I'm pushing ahead with a new edition of THE WORDSMITHS AND THE WARGUILD, which I expect to publish before heading to Japan.
I went to The Copy Shoppe yesterday and asked them to scan the maps for THE WORSHIPPERS AND THE WAY, and I anticipate having a new edition of this, too, on the market, inside of ninety days at the outside.
That done, all ten books of the CHRONICLES OF AN AGE OF DARKNESS will be in print, as Corgi originals for seven of the books can still be bought from amazon.com, and I have published a second edition of WITCHLORD/WEAPONMASTER and, as noted above, will publish volumes two (WORDSMITHS) and nine (WORSHIPPERS) in a timely fashion.
Meantime, I have started work on COMRADE RAT MUST DIE, the second book in the TALES OF OOLONG MORBLOCK series, which features a drug which enables normal people to acquire paranormal powers.
And I am also assembling ideas for a third book in the series, INTREPID GIRL REPORTER, the girl in question being thirty-four years old and with two kids, one aged three and one aged five.
No completion date for these two novels at this stage, but I am anticipating getting COMRADE RAT MUST DIE done some time in 2006, and I would expect to finish INTREPID GIRL REPORTER in 2007 or maybe 2008.
The basic idea for INTREPID GIRL REPORTER is that Ruth Lordship is a reporter for AFTERLIFER magazine, dealing with postmortal existence, ghosts being an ongoing part of the social scene in the city state of Oolong Morblock.
The other main character is Halo Chat who, having been variously employed, is a ghost hunter, someone who scouts out ghosts, spooks, afterlifers and postmortals of various descriptions who might be available for commercials, film shoots or other purposes.
I was rather dubious about my prospects of bringing the projected twelve book series to a conclusion, and there is as yet no master plan for the twelve books, but at this stage I am cautiously optimistic that I will live long enough to see this project through, though it all depends on my eyesight, for which I have no guarantee.
I now have three pairs of spectacles, each just for the left eye. One is a compromise in the form of a progressive lens, one is optimized for working at computer distance and the third is optimized for seeing fine print at about 25 centimeters.
With the fine print lens, I can read an ordinary library book and I can also read a newspaper, so I am not, currently, confined to the world of large print books.
My life, from this point on, becomes an experiment.
Statistically, my survival chances, five years after treatment, are forty percent. So everything is provisional. But today I was thinking about INTREPID GIRL REPORTER and I was thinking that this could, potentially, be a book that I would very much enjoy writing.
One book I will probably not write is a book of death poems, THE DEATH OF BIRDS, though I have about twenty or so poems on the theme of death and dying, which I plan to include as a DEATH POEMS section in a book of assorted pieces which I am calling THIS IS A PICTURE OF YOUR GOD: A HUGH COOK READER.
This currently includes a handful of passages on Islam and some cancer blog entries, and a very lean HOW TO WRITE section focusing on the art of writing fiction.
I am also planning to include a very few stories, a smattering of poems, the DEATH POEMS and, possibly, a couple of essays.
If the cancer were to return then that would give me the impetus to finish off THE DEATH OF BIRDS, but I would prefer to forego the impetus, given the choice.
So there I am.
I have a result and I have the privilege of experimenting with staying alive and of seeing how that works out for me.
At this stage, having spent seven years in Japan, Japan feels like the truer home.