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Doc chose to share his journey with a group of his friends and acquaintances from the Internet harmonica community in what he began to call "gang mails".   I saved Doc's messages as he sent them because I felt that they gave a powerful and seldom seen insight into the lows, highs, thoughts, and feelings of someone with this terrible disease.  He shared his journey with us for a year and a half, from the moment he was first diagnosed, and I have published his messages here in honor of his memory.

John Watts

================================================

Date: Mon, 18 Dec 2000 05:38:14 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: In sickness and in health.... (rather long, I'm afraid)

Hello to all of you!

The address list I am sending this to is composed of people whom I know to have more than just a casual interest in my well being. Some of you have been informed already of the main issues I will report here but others are not, so I will briefly summarize the events that preceded my current status to bring you all up to speed regarding the things happening to me. Of course I will answer individual reactions personally, but in order not to have to tell the same story time and again I will use this mailing list to keep you all informed. If any of you feels someone is not on the list where he/she should be, feel free to let me know and I will add the person in question. There is one person I do wish to include on this list but I do not have her mail address. Doug Tate, will you be so kind as to forward this message to Bobbie Giordano and send me her mail address so that I can include her? Okay, after this introduction I better get on with things. 

As most of you already know I have been plagued by a pain in the upper half of my back since early this year. The pain is located on a spot of about one inch in diameter between my left shoulder blade and my spine.  It appeared to be a nerve that is pinched by a strained muscle or something like that. Nobody out of a team of specialists and therapists could determine the cause of it, nor did anything seem to help getting rid of it. I tried several things in the form of medical treatment and medication, all to no avail. In the meantime I am on prescription pain killers in dosages that would down an elephant since April and still the intensity of the pain seems to be increasing.

Because of these symptoms I consulted my family doctor again late October this year, telling him I suspected a nerve to be inflamed or something similar. To investigate that I had a blood test. Soon after that the results of the test came in. Several values turned out to be very strange, so my doctor sent me on to see an internist for further examination. I saw the internist on Monday, November 20. Apart from asking me a zillion questions about my health the internist had another blood test done and some X-rays taken from my heart and lungs. This was the first time these were taken. There were X-rays done earlier of my spine and neck, but those had not shown anything unusual. I was to contact the internist three weeks later to discuss the results of both the blood test and the X-rays.

That Friday the internist herself was on my answering machine asking me urgently to confirm an appointment she had made for me the following Monday. Of course that meant bad news, but I didn't have a clue how bad and about what. Thinking of my health the way I knew it, I suspected the news would be about my liver and my drinking habits, and I would probably get a warning that the next alcoholic drink could be my last one. Nervously I confirmed the appointment and showed up at the given date and time.

The news was bad indeed, but it did not concern my drinking or any other bad habits I have directly. It turned out that on the X-rays of my lungs a tumor was found, roughly 2 inches across in the tip of my left lung. The tumor was suspected to be lung cancer. With it all my complaints I had for the past year were explained. The fatigue I felt was due to the fact that my body was fighting the tumor, draining energy; the bad fitness and shortness of breath were explained since I only had 2/3 of my left lung available; the pain was caused by the tumor pinching several nerves. The next day I was to see a lung specialist for more details. This man confirmed the initial diagnosis and told me the cancer has already spread to a cluster of lymphatic glands in the space between my lungs.

If this is left untreated I will die within a year maximum. Removing the tumor surgically is impossible because it has grown too large already. There will be no problem in removing the tumor or even the entire lung, but there is a near 100 percent risk of damaging several nerves around the tumor, rendering my left arm useless and possibly damaging things so badly the arm has to be amputated as well. Not really the thing I have in mind as the preferred cure for cancer. As an alternative they will try to shrink the tumor with chemotherapy, forcing it to withdraw upon itself and remove it once it has shrunk sufficiently. In other words: I am not terminal yet; treatment is feasible and has a reasonable chance of success.

I needed a couple of days to assimilate the news. Good thing, because my better half Olga was completely derailed. I needed all my energy to get her back on the track. After about two or three days she discovered she wasn't really helping me by losing herself, so the turned and regained her composure. Not a minute too soon, because the moment she turned to me I completely freaked out. "Why me?", was my first obvious question. I will be only forty years old next May and there still is so much I haven't seen and done. I'm not ready to die yet. Fear and desperation battled within me for total control of my senses. Yet I don't want to give up. I am a fighter and I intend to battle for every inch of terrain against this damnable disease. In one of his first reactions to the news my close friend Greg from New Zealand made a remark that will become my battle cry:

"Lo! Though I travel through the valley of Hell, I'll be kicking death's butt all over the ethereal plane!" 

You all bet your respective asses I will be doing just that! After overcoming her initial shock Olga has been a great support to me and she showed true loving care. I am very happy to have her around and we probably are closer now than we ever have been before. I love her dearly for being who she is and show her my love and gratitude at every opportunity I get. I know other people who would have run out of this misery long ago and the fact she stands by me instead only confirms her priceless value to me. I can't find the words to express my gratitude and joy about that. It truly helps me find the strength to carry this burden now cast upon me.

Of course several additional tests had to be done in order to determine the exact state of things. One was that I was injected with radioactive matter that was designed to concentrate itself in cancer infected cells throughout my body. That was to determine if the cancer had strewn through my body. The result was a negative. A second test was a so called CT scan, where I was X-rayed from different angles, the images being enhanced by a computer so that slices of me were made visible on a computer screen. This was to determine the exact size and location of the tumor and possible 'seedlings'. The third test was a bronchoscope, where a tube was inserted through my mouth into my lung, containing a viewer, a small light and a scoop to take tissue samples of the tumor.

This test failed; no usable samples were obtained. The next test consisted of some diagnostic surgery. A small incision was made just above the chest bone and a tube was inserted for viewing and obtaining tissue samples of the lymphatic glands between my lungs. The results of that test showed that the glands were swollen slightly from fighting the disease, but there were no cancer cells present. So the cancer had not spread beyond the known tumor! Good news. In order to obtain samples of the tumor a punction was done. Recently I received word about that. It turns out the punction failed as well. Again no usable samples were obtained; only dead tissue was retrieved. And me? I am completely in shambles. My emotions waver from total optimism to utter despair. On my 'good' days I see this entire thing as a mere nuisance that has to be overcome somehow; get over it and get on with it. But at certain times, like when I lay near-naked and shivering on a hard kot moving in and out of some threateningly humming machine, fear grips me and won't let go. In order to keep myself sane I close off emotions as much as I can. It is not the pain or the realization I have contacted a disease that can be lethal, no sir. It is the waiting, the uncertainty about the prognosis that is really driving me up the wall.

Right now I am fairly okay and able to talk about things in a sort of detached manner, but only this morning I sat on my bed crying like a baby. My vision of the future is a featureless gray haze; impossible to make out any details. I don't have the faintest idea what is going to happen to me. Am I going to live to see my 40th birthday? Will I be able to overcome this horrible ordeal? Where can I get the strength to fight; to go on? Yet at times I look into the mirror and hum the first lines of "Que Sera, Sera". I can laugh and tell the rudest jokes about cancer. Sleeping has become a luxury. If the pain doesn't keep me awake the worrying does. At times it still is as if everyone around me is talking about someone else. But last week, as I was sitting up in that hospital bed, all of a sudden things became very real. Fear ripped away my sanity layer by layer. I panicked. God bless the nursing staff at that moment. They were able to grab a hold of me just before I went over the edge. Soon after that I calmed down and came to my senses, but five minutes more and I would have gone completely overboard.

Yet the hardest part of all this misery was not something that concerned me. The hardest thing to do was breaking the news to my mother. Most of you are parents, so I don't think I have to elaborate on what happened there and then. I was very lucky to have one of my 'good' days when I saw her. Seeing me looking reasonably well and being composed and strong quieted her initial panic a bit. By showing her my uncertainties and fear about all of this I awakened the old motherly feelings in her, and that kept her from freaking out completely. Of course she worries now, but not as much as I feared at first. Well, this is the story until now. The news of the failed punction was given to me last Friday. A new punction, this time from another angle and with a bigger needle, is scheduled for next Tuesday. The samples obtained then will be analyzed in the lab immediately and the next day the first of a series of chemo treatments will start. They want to hurry that, because the holidays are due soon and it will be very hard to get anything done at that time except true emergencies. Yet I will have to stay in the hospital during each treatment because the side effects of chemotherapy are so severe that I need to be under constant observation.

In order to make sure I have a bed available I will be committed to the hospital tomorrow, Monday, December 18. Chemotherapy is very taxing on the patient. For that reason my posting to newsgroups or answering individual emails will become erratic at best. Possibly I will not be able to partake in any on-line activities even several days after returning home because of the side effects of chemotherapy and I want to apologize beforehand for any inconvenience that may cause you. From now on I will report about my progress on a more or less regular basis via emails to all of you. Feel free to react individually. I will reply to every message personally, but I can't tell you when for reasons I just explained.

In case I am unable to do so at the proper time I want to wish you all a merry Christmas right now. Let's all hope your days my be happier than mine at this moment and that you and your loved ones may look forward to a healthy and happy future in the coming new year. Keep your fingers crossed for me and rest assured that I will fight to the hilt in order to overcome this major inconvenience. I know for a fact each one of you wishes me well straight from his/her heart and I want to express my appreciation and gratitude for that. Each one of you has shown me warmth and friendliness at certain times and I can't tell you enough how that has brightened my days in times of trouble. Knowing each one of you has truly enhanced my life and gives me joy each day. Thank you all for that. May this go on for a very long time after now. I for sure will do everything I can to be around and enjoy it for as long as possible.

Best regards,

Paul / Doc

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Date: Fri, 22 Dec 2000 13:12:39 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Back home...

Hi all,

A couple of hours ago I arrived home from the hospital, where I had my first chemotherapy treatment. Still a bit drowsy after a lot of pain medication. My stomach upset by the chemo stuff. Hiccups, belches and a slight nausea.

Don't worry, I didn't drive myself home. A friend picked me up. All seems to be going well now, but I am exhausted already from all the excitement. Try to cope with a lot of last-minute bustling at the hospital for my release, and then home to an exited spouse and two dogs that are _*really*_ happy to see me (one of them a 110+ pound Rottweiler!) when being in your right mind. Then realize that I am in my left mind, so it is even harder for me. :-)  Okay, I am trying to keep up my sense of humor and that is good, so they tell me. But I'm going to hit the sack right now and rest a while.

I have received a lot of very warm and very personal reactions from a lot of you and I am very grateful for them. I will try and answer each one personally in the next few days, but I can't exactly tell when that will be. I promise I won't over extend myself answering them. I will also make a more detailed report of the past few days and the time to come to this group of addressees before long, so that all of you are informed about the latest status of things.  For now my gratitude and regards; I'll "speak" to you very soon.

Greetz

Paul / Doc

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Date: Mon, 25 Dec 2000 05:45:05 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: After the chemo... is that life?

Hi all,

Last Friday I returned home from the hospital after the first of what is to be a series of four to six chemotherapy treatments. I had by then intravenously digested half a liter of Gemcetabine and no less than one liter of Cisplatin. The first stuff is relatively harmless when it comes to side effects, but the second is so poisonous that hospital staff handling the drips are required to wear a skirt and rubber gloves at all times hen handling the stuff in the open. If not, they run enormous toxic risks. Would you believe the stuff causes cancer in those who are not affected by it in the first place? The side effects of that stuff are disastrous. Continuing nausea (from 2-3 days to a full 3 weeks!) and depletion of white blood cells are only the harmless ones. Yet through the loss of white blood cells, problems in the bone marrow and anemia caused by it, the immune system degenerates vastly. So try not to cut yourself, for you won't stop bleeding and the infection will be something to keep you busy for ages afterwards kids!

Well, like I said I feebly stepped out of the car Friday afternoon with no less than a liter of that junk sloshing through my vains. So far so good, until Saturday morning. I slept like a log through the entire day, much to the unrest of Olga and a close friend living nearby who were unable to reach me by phone all day. Later on this seemed to be a known side-effect. Well, so I thought, if this is the worst I'm gonna' get from that... Let the good times roll!

As it is, life and reality have a sick way of catching up with you every time you feel you're on a high roller, and this time certainly fate wasn't making any exceptions for me. Early that evening I began feeling sick to my stomach and to spare you the ugly details let me limit myself to saying that instead of my wonderful woman I hugged a toilet bowl for the better part of that night. It so happened that the hospital doctor on duty, through a small oversight, had forgotten to include mediation against nausea. Oops, sorry sir! The slow morning drizzle brought a little relief, probably mainly because I had completely run out of "material", so to speak.

Another complication made itself shown as well. In order to obtain a good tissue sample of the tumor a second punction had to be done. This time they entered the tip of the lung through the side of my neck, alongside the big strand of nerves that run there. As of yet it is still unclear if the punction or the reaction of the tumor has been the culprit, but I lost fine motor control in my left hand since then. At first I thought it would have been the local anesthesia that dulled the nerve responses, later I thought it was mere irritation of the nerve and would be a passing thing, but it keeps on for almost a week already and instead of regaining control I lose more. I haven't lost strength in the muscles, it's just the finer control that bugs me, like in writing (I'm a leftie) or finer work like folding close a small edge of a milk carton. I keep telling myself that it will pass in due time, but for now it adds to the total amount of fun! Nice perspective. You could call it the irony of fate. I have determined that if I would become unable to play the harmonica because of the loss of lung capacity, I would try and learn to play the piano instead. Losing motor control of my left hand isn't exactly the ideal starting point for that I believe. The most ironic fact of it all was that the second punction turned out to be unnecessary, since the first got all the results they needed for successful treatment. It looks like fate is really pissed off with me and is determined to put me to every test it can think of. Well, we'll see about that!

During the day I slowly started feeling a bit better, so I regained a bit of faith in the night to come. Too soon, unfortunately, because shortly after 10 PM the whole shebang started all over again. A quick rush to the hospital, chauffeured by a good friend brought me some medicine and a prescription for more in the morning, but so far the effects only have been moderate. The nausea persists, albeit on a somewhat lower level. So far I only had to do the "toilet bowl dance" twice this night, but that was just enough to make sure every sleeping pill I took went out before it could kick in. So here I am, cold to the bone and aching in every muscle from the heaving. I am trying to make this report as lighthearted as can be, mainly because I can't go and feel sorry for myself.

The fight is on and the contestants have chosen their weapons. We all know the weapons the cancer has chosen, well I chose mine too, and with equal care. I will fight this disease with humor. Any type will do: sick jokes, cynicism, dirty jokes, wit, you name it. So guys: hit me with your best shots. No holding back, I can't have any limits. The stakes simply are too high to be careful now. This is all-out battle and as in war and love all means are justified to reach the noble goals.

I on my part will try and keep these reports full of tongue-in-cheek observations regarding me, my disease and everything that surrounds it, just in order to make sure that smile never leaves my face, even if they pour another liter of poison in my veins or if I do the toilet bowl dance a couple of days afterwards. I simply refuse to let this thing get the better of me. I've invested almost 40 years in getting where I have gotten now, no cancer is going to flush that down the drain; not if I can help it. It is 5 AM on December 25 out here. Christmas Morning. Needless to say the Christmas Spirit is a bit clouded over in this little home, but we will try to have a very good time nonetheless.

Even if I haven't replied in person to them all, your personal wishes have all been well received and each of them is appreciated with all the warmth in my heart. I save each message that reaches me and intend to respond to every single one of you personally the moment this ordeal is more or less under control. The positive power and good vibes that go along with your wishes have warmed me and Olga. Due to her Russian origin she doesn't speak one word of English, but every one of your personal wishes that reach me I translate for her and she enjoys them with me. It is also on her behalf I wish to thank you all for your support and warm wishes form the bottoms of both our hearts. Thank you all. It is through your support I find the strength to see me through this. Merry Christmas. And may God bless you all!

Warm regards,

Paul / Doc

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Date: Mon, 25 Dec 2000 13:32:33 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Conquering cancer - kicking death's butt!

Hi gang,

Writing to you this morning about humor being my weapon of choice in my battle against cancer, the following song lyrics came to mind soon after  I wrote the message. I still had them somewhere. For the story behind this song (not personal, but factual): see below. The text in itself is pretty obvious and I don't think I need to explain my personal idea about it. It fits me like a glove.  Enjoy!

"The Bright Side of Life"

Some things in life are bad

They can really make you mad.

Other things just make you swear and curse.

When you're chewing on life's gristle,

Don't grumble, give a whistle!

And this'll help things turn out for the best:

And...always look on the bright side of life,

Always look on the light side of life,

If life seems jolly rotten,

There's something you've forgotten,

And that's to laugh and smile and dance and sing.

When you're feeling in the dumps,

Don't be silly chumps.

Just purse your lips and whistle. That's the thing.

And...

Always look on the bright side of life.

(Come on!)

Always look on the right side of life,

For life is quite absurd

And death's the final word.

You must always face the curtain with a bow.

Forget about your sin.

Give the audience a grin.

Enjoy it. It's your last chance, anyhow.

So,...

Always look on the bright side of death,

Ah, just before you draw your terminal breath,

Life's a piece of shit,

When you look at it.

Life's a laugh and death's a joke. It's true.

You'll see it's all a show.

Keep 'em laughing as you go.

Just remember that the last laugh is on you.

And...

Always look on the bright side of life.

(Come on, Brian! Cheer up!)

Always look on the right side of life.

Always look on the bright side of life.

(Worse things happen at sea, you know!)

Always look on the bright side of life.

(I mean, what have you got to lose? You know, you come from nothing,

you're going back to nothing,

what have you lost? Nothing!)

Always look on the bright side of life.

(Nothing will come from nothing, you know what they say?)

Always look on the bright side of life.

(Cheer up, you old bugger! Come on! Give us a grin! There you are! See?

End of film. Incidentally, this record is available in the foyer.)

Always look on the bright side of life.

(Someone's got to live as well, you know? … Who do you think pays for

all this rubbish?)

Always look on the bright side of life.

(They're not gonna make their money back, you know. I told them. I said

to them. Bernie, I said they'll

never make their money back.)

Always look on the bright side of life...

--

Lyrics by Monty Python

Music by Eric Idle

Arranged by John Altman

--

In late 1969 a group of British comedians joined forces in what was soon to become a legend in television comedy. Grouped under the name of "Monty Python's Flying Circus" John Cleese, Michael Palin, Graham Chapman, Terry Jones, Eric Idle and Terry Gilliam wrote, produced and performed four full TV seasons of 13 episodes each between 1969 and 1974; glorifying and belaboring the absurd with sketches, animations and other strange stuff, never seen before on television. Thanks to this unique approach that introduced an entirely new era in television making, their audience exploded from a small "in-crowd" to a legion of millions of devoted fans throughout the UK and Europe in less than no time.  Based on their successes on TV, the team also produced several feature length films. One of these was "The Life of Brian", the film that closes with this particular song, where the main character ends up being crucified by the Romans.

In October 1989, on the very eve of the 20th anniversary of the first Monty Python TV episode, Graham Chapman sadly died of cancer after a long and heavy struggle. At the memorial service held for him, broadcast in full by the BBC, this song was sung in conclusion, fully according to Graham's wish and spirit.

The song in itself shows so much disdain for death as a phenomenon that I feel very close to the content and find a lot of energy in it to face whatever is awaiting me with courage. Life is merely a show and we are just players to an invisible audience. So why not exit gracefully and with a wink? I'm told the encore is far better than the show itself, so that at least is nothing to worry about. ;o) I hope the lyrics were able to conjure the same smile on the faces of all of you as it did - and still does - on mine.

For those of you who are interested the full version of this song in MP3 format (631 Kb) is available here: http://www.mwscomp.com/sounds/mp3/brghtsd.mp3  Merry Christmas again from a guy that laughs at Death in his face and kicks the bugger's butt all over the ethereal plane!

Happy harpin'

Doc

(and would you believe, even Thirsty agrees!)

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Date: Sun, 31 Dec 2000 22:15:39 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Old year, new year.

Hi everyone!

In Central Europe the last hours of the infamous year 2000 slowly tick past. Time for woolgathering and mesmerizing about the past. We consciously chose for a quiet night at home instead of a wild party this year. My physical condition allows me to go wild, but mentally I guess I'm just not up to it. I feel tired and worn. The initial nausea and ill effects of the chemo finally worn off, I am left with a feeling of utter fatigue. A quiet night, a silent toast at midnight and a good sleep shortly after that will be the components of a successful transfer into the new year for me.

The year 2000... Only 20 or so years ago it sounded like something magic, something like a threshold to cross into an entirely new era of existence. In hindsight it has just been another year, and one I gladly would have skipped if given a choice. It started off with the Millennium hysteria that kept IT land in its vice-like grip from September '99 to past New Year's eve. Then came my burnout and all that was connected to it and finally I could close of the year in full knowledge that I contacted a cancer. Somewhere in between I successfully countered and cured a nasty alcohol dependence. Only few of you know, but I was on a full bottle of Vodka each day, and I managed to get that under control again. Some year. One thing is for sure: I sank so low this year that I can only go upward from here on. And go upward I will. I want to make 2001 the year of conquest where 2000 was the year of taking losses and licking wounds.

Tonight I will consciously close off this year and all the misery it has brought. I wish you all a very happy new year and hope that each of you has the same possibility I have to turn 2001 into a year marked by victory, progress and prosperity. There is a lot more I could say about it all, but let me suffice with this:

Happy New Year to you all.  That says it all. No need for more words.

Greetz

Paul / Doc

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Date: Thu, 04 Jan 2001 08:51:18 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: The way it is

Hi All!

First let me start off by wishing you all a very happy new year. I already did but hey, "it's not an enema; and even that kein't hoyt to haahve it twaahce". As I was leaving the hospital, about 12 days ago now, I was told that some 10 or 12 days from the last moment of pouring the poison in me I would be at my worst, my weakest. I related that to my immune system. That, as I was told, would be affected in a negative way by the chemotherapy. So I figured I would be virtually defenseless against infections at that time. Little did I know that "at my worst" was far more literal than I cared to believe at the time. Well, I sure got reminded of that the hard way. Today I have slept until 2 PM. Olga let me sleep because I have had a couple of very short nights as well lately. Getting up was an ordeal.

Then I searched for something in a box that was tucked away behind other stuff and I was half dead even before digging the box out. Putting everything back afterwards was almost too much to handle. I forced myself anyway for fear of having all that junk stand around for two days or more if I didn't do it now. Later on I had a shower and shave and while toweling myself dry I almost fainted from the effort. I had to sit down in my bathrobe for some 15 minutes to regain strength. Then getting dressed: toss on a T-shirt, underpants, socks a sweater and a pair of trousers and I need a sit. I feel like an old man, who is so worn that even taking a leak has become an enormous mountain to climb. And it's already going on for a couple of days now. The day before yesterday I was exhausted from as much as typing an Email. I was warned that the chemo would also cause a rather severe anemia in just about everyone taking it. I would be no exception to the rule.

True enough. I have no energy whatsoever. I need to type a letter to my tax inspector, who already threatened to start using legal means to collect a sum I seem to owe him. The sum is undue, but in the madness following the discovery of my cancer I completely forgot to protest the bill. Now my term to do so has passed and I have to pay, unless I am able to tell a good reason why not. I am, but I can't deliver the energy to sit down and write that damned letter! Olga can't do it for me either; she is Russian and her Dutch is too poor to write a proper letter. If I let her do it I'll have more work correcting it than doing it myself in the first place.

This message? I hear you ask. Well folks; this isn't exactly a formal letter to a tax inspector, don't you think? Talking to close friends - and yes, that is how I regard each and every one of you individually - always takes less effort than say, debating a formal issue or making official statements. Close friends. Aaaah, sitting back and thinking about it. Yes, that is what you are. All of you. And you know what? I love every second of it.

Most of you know I am not a praying man, but from your individual messages I gather you are praying for me a lot. Well, it sure beats the hell out of someone not giving a damn, so if praying is working for you, it sure must work for me. It surely gives a lot more positive feeling than with people who just sit there stating "It's not my fight" and I shy away from it. "Too bad for Doc, but I can't help him". The more active persons pray for me; think of me and actually try and DO something for me, except feeling miserable with me. God (or whomever) may bless you for that. You are the ones showing me you really care about my well-being. You are the ones that keep on sending positive vibrations my way. You all are the ones that make my healing process become bearable and help me see it through. I am truly grateful for that. Thank you. Thank you all for caring about me, for giving a damn.

In friendship and warmth,

Paul / Doc

===============================================================

Date: Wed, 10 Jan 2001 10:37:01 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Back on the chain game

Hi everybody!

In about an hour I will be reporting at the hospital for another big bottle of Jungle Juice (thanks Yvonne). Tomorrow at 8 AM the needle goes in and stays there until Friday morning. Then a quick checkup and back home again. I hope to be home by Friday noon.

And then... I already look forward to it: the porcelain polka; the toilet bowl dance; the barf boogie... you name it. Let's say it's all in the name of getting well. That better be true or I'll make those doctors drink the next bottle of Jungle Juice. I'll even help them squeezing it.  See you all next Friday folks! So long and wish me luck!

Happy harpin'

Doc / Paul

=======================================================================

Date: Sat, 13 Jan 2001 20:13:58 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Curly boy

Well, it happened. Yesterday afternoon, coming home from the hospital I brushed my hand through my hair and ended up holding more of it in my hands than on my head. Of course all spread splotches of baldness and no clean cut, so I had to do something about it. Donning my hat I ran to my hairdresser and once she saw the damage the idea was communicated quite quickly: the sunroof hairdo. Now I know exactly how a cabriolet convertible feels itself.  Man, that is cold! It's not the front or the top that bothers me, but the back of my head. When that gets cold (and it does!) it feels like someone pours a bucket of cold water down my back. I am wearing a scarf high up my neck to keep the worst cold off. I'll probably get used to it, but right now it feels horrible. Strangely enough it doesn't look half as bad as I expected (I promise I have my picture taken soon and post it via this communiqué). It feels a little odd and each time I chance upon myself in a mirror I see a guy I don't recognize. Guess I'll get used to it. They say the hair will come back once the chemotherapy is done. Let's hope so.

People already start teasing me. They tell me I look like a skinhead.  Wrong types in a training outfit wearing running shoes, high on XTC pills and with fat gold chains and earrings. Of course the Rottweiler dog pretty much completes the image. And yes: I guess I will have to be careful how I dress in order not to be mistaken for one of those idiots with their house-parties.

As for the rest? The usual I guess. Sick like a dog as if there is no tomorrow. Pills to suppress the vomiting do just that, but don't fight the nausea. In a way they make it worse, so I am considering to stop taking them and vomit whenever I feel the need. At least that gives some relief afterwards. But the pain has withdrawn a bit further again and that is a good sign. I know I can beat this thing and that this chemo is doing the right thing for me, but when I feel as lousy as I do now I have a hard time keeping the faith in that statement.... :-(

Well folks, I am not able just now to write something longer than this. I go back to bed in a minute. Hope you all have a good weekend and that I will have some of that too. I am afraid I'll be in for a couple of days of misery. But I'll survive. It takes more than a little nausea to get me down.

Keep the faith, keep up your supportive mails. I can't reply immediately to them all, but I will reply in time. I appreciate your gestures, as does Olga. Don't think I am in any way burdened by your mails; on the contrary. They are what keeps me going when times are tough. Thanks from the both of us.

Warm greetings,

Paul / Doc

=======================================================================

Date: Thu, 18 Jan 2001 13:58:21 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Yet another gang mail

Hi Crew!

Finally, after days of nausea and vomiting and feeling more miserable than any other time in my life, I am back on my feet again and I seem to be staying that way for a while now too. Okay, tomorrow is heat 2 of this manche. Then I'll go for the second helping of Gemcetabine, the mild component in my Jungle Juice Cocktail. This thing doesn't make me feel really sick, just a couple of days down with a feeling I have a nasty flu coming on: aching muscles, bones, skin and joints and nothing really so bad you should stay in bed for it. Well, if that would be the worst of the side effects from chemotherapy I would do one every year or two, just to be sure. But alas....

Well, to all you lovers of raunchy details: here is a report of the past few days:  I already reported that I found out that my pillowcase stood a chance of having more hair than me, so I shaved off the whole lot. I still am very bald and it still takes some getting used to walking around with an open top. Especially the cold makes it very difficult, but Olga bought me a genuine Russian fur hat, the way all those party leaders wore during the traditional October Parades in Moscow. With that thing on and wearing my heavy winter coat and gloves I look exactly like a true Russian! In any case the hat is very warm and that is what counts. I finally had the guts to have my picture taken. The fastest and cheapest way I could do that is by passport photos, so the size is a little cramped, but it is to give you a general idea of what I look like. I enclosed a scan of it for you with this message. I also ordered a repro of one passport picture in a larger size (4 x 6 inch). For those who are truly interested: I will scan that one too and send it to you upon request. Don't ask for it before late Tuesday though, it simply isn't finished before that.

What happened until now? Well, I got home from the hospital last Friday around noon and only two hours later the nausea started. It kept on until the early evening of the following Monday, so that is 3 x 24 hours and then some. All that time I was unable to eat (obviously) and unable to drink. Whatever I tried to drink - even plain water - came out almost immediately, even taking some more moist (stomach and gut juices) along with it. When I started this chemo treatment last Thursday I was weighed at 83 kilograms (for you Yanks: 182 pounds). Monday evening, 4 x 24 hours later, I tipped the scale at only 74.5 kilograms; 164 pounds. So I lost a lot and it was only water. My blood pressure was lower than the account balance of my savings deposit - meaning near negative - and I saw dark spots swimming in front of my eyes and almost hit the deck on more than one occasion. Out of bed I spent more time with my head between my knees than in any other posture.

Then on Monday around 6 PM I decided I had enough of it and started consciously overdosing myself on the anti-barf subs I got from the hospital. When I had three times the advised dosage for 24 hours in me within four hours I felt a little better. I then drank some milk, took a sleeping pill and went to bed.  The next morning, Tuesday, I woke up feeling better. A lot better. Still feeble and weak, but I was not nauseated and was able to keep down a cup of coffee. Throughout the day I ate one sandwich that kept my stomach feeling like I ate two complete meals for the rest of the day. But I lived through it. Then yesterday was like a relatively normal day and yesterday evening I had a perfect meal with lamb cutlets, veggies and potatoes. Great.

This morning as I got up I went to the toilet as usual. Still a bit unstable I decided to sit down for a change and none too soon. I came crashing down on the toilet seat that gave way with a tremendous noise. Thank God the toilet bowl held. Olga was at the door within seconds.  She saw me sitting there, amidst the debris, with a sore look on my face, rubbing the spot where the broken toilet seat had pinched the tender skin on my butt. We had a good laugh about it and I have to go out later today to go buy me a new toilet seat. Too bad, I could have used the money elsewhere...

But folks, save for a pinch mark on my right buttock I am feeling fine again, the situation and the misery of everyday considered. Next time I will ask for even more effective nausea-suppressing medication because the effects of the chemo were a lot worse than last time. Who knows, maybe next time they are worse still, getting worse with every treatment I get. Pretty perspective! Lucky enough I am in good hands with the doctors around me, and Olga is keeping an eye out working from her medical background, so I'll be alright.  The only thing now is that I want to have an extra nickname for me in my present hairdo. So far I came up with a few myself:

Streamlined Stringbean

Cancer Cabriolet

Dr. Queuebal

What do you guys come up with? Come on, let your imagination rip! The most original one wins a free lifetime supply of air to play the harmonica. The runner up will win a box of bent notes. Very useful, since then you don't have to bend them yourself! It's strange though. People around me keep telling me the bald pate is highly fashionable nowadays, but I can see people look at me the second

I remove my hat. I feel like a girl with big boobs: stares from all over the place. It went so far I considered renting out the space on my bald skull for advertising room. Success guaranteed, and with a head the size of mine you could put on a lot more than just a phone number; hell, I could put up complete election campaign posters up there and still have skin visible. ;o)

That's it for now. I can't think of anything to tell you anymore. Best regards from Olga and me and thanks again for your continuous stream of moral support and words of sympathy. They really matter. I noticed that when I came out of the hospital last Friday. I was all down and used up and after reading the messages that had come in while I was away I immediately felt better.  Take care of yourself and enjoy yourselves with the picture. Use it wisely, for instance to scare your kids if they don't eat their meal...  Catch you all later, individually or as a gang!

Regards,

Paul / Doc

=============================================================

Date: Sat, 20 Jan 2001 15:43:02 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Hering chromatic

Hi John,

Today I cleaned out my desk and found the receipt for the Hering Musselwhite I returned to you. I am a bit curious: did it arrive yet? Was it okay? Please let me know. If it's not there yet I'll enquire about it (it was an ensured shipment, so nothing can really go wrong), and if it has arrived in good order I can throw away the slip.

I haven't had much chance to play my Musselwhite Tenor yet. Too busy running in and out of hospitals and being sick and all. I only fooled around with it a bit. I bought an old nylon camera case that is able to hold exactly two chromatics back to back, so both the standard with its restored comb and the tenor are snugly and safely packed. The case has a zipper for easy access and a belt loop, so I can take them wherever I go. I feel a rich and happy man looking at those two; a small ray of light in these dark days. Thank you for making that possible.

Happy harpin'

Doc

- featuring Thirsty, the groggy froggy

=======================================================================

Date: Fri, 26 Jan 2001 12:23:53 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Doc and Olga: the Bald and the Beautiful

Hi Gang!

As of today I am slowly recovering from another shot of the good stuff.  As my Australian cousin Yvonne calls it: Jungle Juice. I couldn't have thought of a better name to classify the stuff. I looked up what they actually are pouring into me and I must say that it surely wasn't the most entertaining venture I had on the web. The stuff is so toxic that cloves and an apron are mandatory for all personnel handling the IV fluids. Premixing and other preparations have to be done in a ventilated cabinet with gloves sticking inside, not unlike an incubator. And then they attach a tube and a needle to it and slowly pump that into my veins. Small wonder my hair falls out and I start doing the "Toilet bowl Tango" almost immediately afterwards. I would even start with the IV still dripping, but they keep on injecting doses of anti-barf stuff in between bags of other fluid.

Well, Tuesday's stuff wasn't all that bad. It's more harmless than the other juice, so the side effects were milder. You only feel like you have a great grandmother of a flu, all the joints and bones aching, and your muscles are feeling like you have been run over by a truck. The only thing I did not have (knock on wood) is a fever, but the cold shivers were there just the same. As of today I am slowly recovering. This morning the aching in my muscles was only mild and I am sure tomorrow will be even better. I feel at my worst the moment I wake up and in the evenings, when I get tired. In between I don't have too much trouble. I just have got the stamina of a wet piece of paper, that's all. Climb the stairs and take a few seconds to catch my breath at the top. Walk a dog for half an hour and fall into a chair, unable to come out of there for the first hour. It is quite common that anemia occurs as a side effect of the chemotherapy. So far my luckily my hemoglobin level has been within the acceptable boundaries, so the fatigue comes from the poison itself, not from something else.

Eating is a problem. I used to enjoy eating a lot; especially the finer kitchen. I like to cook and without false pride I can say I am quite a good cook too. But in the past few weeks eating has been a torment for me. I feel hungry enough, even when I am in my periods of nausea. I have entire visions of super-duper fine dishes with the best and most beautiful food on it, but the second I start eating (when I am not going sick that is) I have enough after no more than a couple of bites. So most of what is on my plate returns untouched. But two hours later I am hungry again. Now if you are at home you can anticipate to that by keeping your plate and heating i up the moment you feel like food again; but if you go out for dinner you have to raid your refrigerator the moment you get home.  And then too a few bites suffice to make you feel like you just ate two servings of a main dish. Rather disturbing that is.

I just read through some of the messages you guys have been sending me since this whole thing started. There is a sincere warmth radiating from them that makes me feel really good. I am feeling depressed quite a lot these days. Part of that is of course due to the strain that comes with a disease like this and everything around it, but part of it also comes from the chemicals. That stuff is effin' around with your neurotransmitters and your body chemistry, clearly affecting your central nervous system and with that a lot of moods and feelings. That makes it hard to determine whether I am really sad because of the tremendous load on my back or because the chemicals are playing havoc on me again. 

Whatever the cause: the results are the same: I feel like something the cat dragged in. Reading the messages you bunch sent me with all the cheers and well-wishing in it always makes me feel a lot better. I already have expressed my gratitude about that very often, but I feel I can't do that enough. I can't say often enough that I really appreciate your support.  I heard from several of you that they wondered if they should contact me directly or not. Well, let me tell you that it never burdens me when I get a mail message from one of you. First off, you are all people I like and appreciate, so no message from you is unwelcome. Second, it is really heart warming to receive so much true support from you all. Being struck with a disease like this makes one very lonely and in that case any sign of sympathy brings a little relief for me. A smile here (more often than not the first one that day) a warm feeling there and my day is brightened a little more. Thank you all, from the bottom of my heart. Another thing now. It came to my ears there had been some discussion flying around between you. Some harsh words were used and some people were really upset. I felt both surprised and a little sad about that.  It was never my intention to generate discussion amongst you and certainly not my intention to have you go at each other's throats over any subject at all. I just thought of a way to address a group of people who belong to my "inner circle" and who I relate to in a similar way and talk to in a similar way. I wanted to keep them informed of my progress in such a way that I didn't have to tell the same story time and again to anyone who is genuinely interested.

Satisfied as I am with all other features of it, my mail program is not really advanced on those things, so when I put together an address group it converts the group name to individual mails to all members of that group, showing all the names in the message header. Very inconvenient and besides it looks messy. Yet I don't want to change programs because the rest of it is fine for me and I don't want to convert hundreds of messages I saved throughout at least a dozen folders.

As a result of that every member of a certain address group can see all other members and via the "reply to all" function of their own mail program everyone can send messages to the whole group. Normally I don't mind members of a certain address group to see each other's names. It's not that I want to keep it a secret or something. But what I do mind is that members of that group start arguing among each other because of me. I didn't want that!

One of you suggested I set up a discussion group in Egroups or something so that files could be stored and members could react to each other individually and by choice. But when I do it in Egroups the messages are sent out to all the members, just like it happens now when one of you hits "reply to all". So there is no difference at that point, the only thing is that if I want to show a pic of me with a bald pate I store it at a central place instead of sending it to all of you individually.

As a matter of fact I don't see much of a point in that. I didn't intend to send you all complete photo galleries. Just one small picture, 16 Kb in all, and text only for the rest. I don't want to have a discussion group. To discuss what? My health? The weather? Should people send personal words of comfort to me on-list? I would be much happier if each one of you sees this as if I was sending a 1:1 email and react in a similar way, by replying with a 1:1 email to me. I appreciate the fact that you guys have initiatives and ideas to make things fun for me, but if arguments come out of that you are overshooting the landing strip completely.

Don't get me wrong: I don't mind that individual contacts between people in this address group evolve. It is a nice thought that people from all over the world meet and start talking because they chance upon each other through me. As a matter of fact I even like that idea and it makes me feel good that I was able to bring that about. But I don't want any arguments to develop on a group scale. Please guys, don't do this to me?

I much rather send status mails out to 20 or so people individually then. So please hear my plea for the use of common sense and don't start fighting each other just because you are different people with different values and opinions, who happen to be brought together by only one thing; the fact that I love and respect each and every one of you. Please, don't let this message be the catalyst to start old discussions again. Let bygones be bygones. No hard feelings. I don't need apologies from anyone of you even if one of you should feel the need. No harm has been done and I have been kept out of the whole thing anyway. I just hope the air has been cleared for good with this (although I think it has been cleared some time ago already). So let's start all fresh, forget this whole thing and I just go on sending you my communiqués. Each one of you is free to react to those as he or she sees fit. Your reactions are always welcome and even though I may not be able to reply to each individual message at once, I do save each one and will react in due time.

My warmest regards and continuing gratitude for all the small moments of joy you guys have been able to bring into my life.

Greetz,

Paul / Doc

=======================================================================

Date: Tue, 06 Feb 2001 16:55:04 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Kicking death's butt again...

Howdy Folks,

It has been quite a while since I sent out the last gang mail and I have been promising this one to people for days now, so I better get on it I believe. The reason why this message is later than expected is that I managed to sneak away from it all for an extra week. Last week my third chemo was due and on Monday I phoned the oncologist that I couldn't handle the enormous attack on my health just yet. I wanted two more weeks to recover and then take the next treatment. Alas, that was impossible. Two extra weeks of delay would be too long and the treatment as a whole would be deemed a failure. One week was no problem. Okay, I had been sick twice and the idea that it had been for a failed therapy didn't really attract me, so I agreed. And now tomorrow I am expected at the hospital. Some tests, an X-ray and a long talk with the doctor and then the big wait begins until the following morning, when the next batch of Jungle Juice will be pumped into my veins.

As it is I did recover fairly well. Up until today I had a healthy appetite, I ate a lot of good food (Olga made sure of that!) and I gained back some of the pounds I lost. I say up until today, because now (4:45 PM) my stomach is in some knot and I don't think I can eat a single bite. Yet I have to and I have to eat well, but I must say that in view of the new chemo treatment I kind of lost my appetite.

All day I have been kicking around the idea in my head. I feel like a piece of junk, depressed, ill-tempered and very agitated. I know what is going to happen to me, yes sir. Four solid days of barfing; losing weight; getting dangerously close to a coma; blood pressures that are lower than my bank account balance; dizziness; black spots in front of my eyes. Man, I feel happy already. I truly wish I could get into my car, head south and drive away from it all.  It is curious to notice my entire mind and body are in revolt against what is coming tomorrow. How anticipation can make things worse than they already are. I had a scan early last week and that is to determine if this entire chemo circus is to be considered successful or not. The results of the scan will be known tomorrow and are very important for my chances of ever getting rid of this cancer. If the cure isn't successful there is one more shot where I get high dosages of radio therapy and if that doesn't work I may conclude I have celebrated my last Christmas in 2000.

And right now? Of course I don't know a thing yet and I won't hear a single word from the hospital staff until tomorrow. They'll just tell me the results aren't in yet and I am willing to bet good money that they really aren't. In that aspect they don't give a damn about what you feel. It is efficient to talk through the results with me tomorrow so we don't even consider the patient might want to know them sooner than that. Well, let's stop ranting. I am nervous about tomorrow and the chemo after that and I feel lousy about it. Nothing more, nothing less. Keep your fingers crossed for me; I'll go in head first and we'll see what happens on the other side of it. I'll report back as soon as I can.

Greetz

Paul / Doc

- bracing to barf!

=======================================================================

Date: Tue, 13 Feb 2001 09:46:16 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Tunnels and trains

Hi Gang,

(sigh)... It all looked so good when I came out of the hospital last  Saturday. Not sick, no nausea at all. And all Sunday and Monday I kept at that; uneasy, a bit restless, but no heaves. Until last night. Around 2 AM I woke up and had to make a run for the bathroom. Back kneeling for the porcelain throne. And obviously I had to pay for those few days of relief.... Suffice it to say I spent the rest of the night going in and out of bed for several rituals, having a splitting headache to boot. An aspirin? How?

So here I am sitting. Dead beat; headache; no idea how to get through the day. It's only 9:30 AM yet and I have a long way to go before this day is finally done. There is not much I can do that isn't ruined already; I can hardly stand, I have trouble keeping my eyes open and if I shut them and lean back I have to make a run for the bathroom. And every heave there increases the throbbing in my head... Anyone care to swap? Be my guest; anytime.

But not all news is bad. Last Friday, just before the IV went into my arm, the lung specialist came up to my bed and told me that they had revised the plan of treatment. This here was to be my last chemo session (of course he didn't forget the second helping at the end of this week) and from there on they would start doing some scans. Very thorough ones.

Then we would be ready for radiotherapy - that is also bad, but not half as bad as chemo - and after that the tumor would be surgically removed. Now of course this all still is a plan, with plenty of possibilities for things to go wrong underway, but I liked what I was hearing a lot. Knowing it is the last one also makes my current situation a lot more bearable. Too bad my luck ran out then and there, so that right now I am experiencing the full fun of the after party for the chemo. But still so far so good. At least it means I haven't done all this for nothing and that I haven't bothered you with my sorry stories only to tell you the cure hadn't worked.

Keep your fingers crossed for me gang! I don't know what will come out of this, or what will happen for all that matters, but I do know there is a light at the end of the tunnel and it's not the headlight of the oncoming train... But don't cheer too soon. There still is enough tunnel to be traveled and thus enough time for a train to enter the tunnel from either end.

I'll leave you here with my hope and yours of course that things will turn out for the better. For now good luck and see you later! Take care

Paul / Doc

=======================================================================

From: "Paul van der Sijde" <p.sijde@chello.nl>

Date: Thu, 15 Feb 2001 11:55:17 +0100

Subject: [slidemeister] A new direction - new choices!

Hi Group!

As you all may or may not know I have been seriously overworked at the beginning of last year and partly as a result from that been struck down with a very nasty disease that still bothers me now. These facts have forced me to look upon my life from a slightly different angle. I will not bore you with discussing habits I have that may or may not be nasty and should be beneficial to either develop or kick; such a discussion would be way beside the point here. Rest assured some significant changes are being made and some more will be made in the near future.  Due to some of these changes I have some extra free time on my hands.

Apart from gratefully using that time to practice music I have decided that this country has been without a harmonica customizer too long for comfort. I decided to take up the art. At first I will do so as a pastime next to my regular day job (that in itself has become a lot quieter than a year ago). I don't have the illusion that I will be able to make a living out of it.

Right now I am in the process of gathering tools and materials to do the job properly. I made some nice deals on tools recently. I am negotiating for a space where I can set up a workshop and setting that up will take me a very long time. So don't get excited yet; I am a far way from accepting my first real repair or customization order. Before I even dare touch another person's harmonica with anything else but a soft, clean cloth I need a lot of practice work. So hence my request: I want to ask you to help me in a very small facet of changing my life for the better and ask you for that reason if any of you has any junk harmonicas or parts lying around that he/she is willing to part with.

If so, please let me know. Any part, any brand is welcome, no matter what state it is in. Even harmonicas of the D*** type are welcome; reed work is reed work, no matter the type of harmonica. Of course any other hints, tips, over-complete tools, materials and other stuff are welcome as well; I am really starting from scratch and I haven't got even the basic stuff complete.

So far I found me some miniature wrench and anvil; screwdrivers and the lot and I bought myself a Dremel look-alike with a lot of gizmos around it. I also have some windsaver material I am currently testing and I have a good magnifying glass. That is about it, I'm afraid, except for a handful of junker harmonicas of my own. Alas they are few; I tend to blow out few of them and have until not too long ago tossed out broken reedplates. Only the past half year I started saving them. The current harvest is so poor I can (and do) store it in an empty VHS video cassette box with lots of room to spare. So please all of you seasoned players with tons of old junk: help me on my way! Of course I am willing to cover costs, either by swapping other materials or via PayPal or some other ingenious way to convey cash; no matter what, but please confer with me first.

Happy harpin'

Doc

- featuring Thirsty, the groggy froggy

=======================================================================

Date: Sun, 18 Feb 2001 23:11:00 +0100

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: It's done! Well, almost

Hi Friends!

Today is the first day that I can safely say that I can stand on my own feet and not wobble all the time. After the last chemo two days were tops, then I started barfing for 2 days and then two days were tops again. The evening of last Thursday I had a ball. Around 6 PM I decided to have a drink with Olga coming home from work and after one glass of beer I started barfing. That went on every 15 minutes didn't stop until about 6 hours later. Then finally I could hold in some pills to quiet my stomach.  Friday and Saturday I was in shambles. Totally worn out from the barfing and completely turned inside-out. My body ached all over from muscle aches on muscles I didn't even knew I had from the heaving and I was severely undernourished. Today things started to regain their own original color again.

Not all is bad though. Some of you I already told part of the story, some others still don't know a thing. But the Friday the needle got in for the next slosh of poison the doctor came to me and told me this was planned to be the last one. A week later I saw my oncologist and he confirmed that. It seemed I reacted so well to the chemo that I was almost an exemplary case. The third slosh hadn't hurt, but it hadn't been necessary. Well, the doc could say it hadn't hurt, but I thought different.

Yet in any case I now am to undergo one MRI scan and another CT scan and after that final decisions will be made. The scans are planned for the first half of March, giving me time to recover from the chemo in the meantime. Then at March 20, I will see the oncologist and we will discuss what happens next. Probably there will be some light radiotherapy to clear every last bit of cancer cells from the recovered tissue and then it's on for surgery. There is no way I can tell any dates yet; I will hear the first dates on March 20. No sooner. Resuming this is the case:

1. I am cured. All that has to happen now is remove that stupid thing from me and all is well again. But that is a technicality. In fact I am cured. I do not use any pain medication anymore; I am fully off the morphine now except for emergency cases.

2. I need my full strength to recover from the surgery as well as possible. Don't get me wrong guys: removing half of someone's lung is no piece of cake for that person. It is major trauma you really need to recover from.

3. Until March 20 NOTHING happens. Yeah sure, a couple of scans, but I lay there and hear nothing of what they see or photograph. I will have nothing else to tell you except what you hear now until that 20th. 4. I am going to use that time between now and March 20 to recover as completely as I can. That means I will put as much distance between me and the concept of being ill, including telling how I am now. I am fine for the moment thank you. Not that I want to insult any of you saying I do not appreciate your support. I do, and you all know it, but sometimes when I want to get away from it all the heartfelt good wishes or inquiry after my health slams me right back into the spot I wanted to stay away from that day: the patient role.  I conquered the disease people! I did it on one thing alone: will power.

Most of that power I derived from the support I got from guys like you; people who care and love me and want me to be well. And I did it. Now only some surgery (which I do not underestimate but is peanuts in comparison) separates me from a normal and happy life. How? From day one I refused to take my cancer seriously. I wasn't ill. I only fell sick because of that damned chemo, but for the rest there was nothing wrong with me. Cancer? No, that is something you joke about, but that really happened to others. I simply refused to accept the fact, no matter how hard I tried.

As a result my subconscious did the same and together we fought back the stupid disease that was keeping me from functioning the normal way. The disease was holding me back and I refused to accept that. So I set things straight and conquered the damn thing! And now? Back to normal I guess. Okay, I'll stop smoking to reduce the chance of it happening again. But I am realistic enough to know that I smoked long enough the past 25 years for stopping to be more a matter of conscience than of actual preventive health measures. Too far gone. But I'll do it anyway. Surgery and a wound the size of half a lung will help me stay off the stuff, so I think I'll manage to quit it all. And as to the rest: back to business as usual as soon as possible. But: with a slightly changed outlook on life and values and a relationship that is deeper than it ever has been.

Thank you all for your continuing support. We are not there yet, but the end is nigh. Chances of me dying have greatly reduced so far and will continue to do so as surgery approaches. We're almost there yet. Still tons of things can go wrong, but for some reason I have truckloads of faith in the weeks to come. So I have all reasons to rejoice! Rejoice with me folks; for conquering death is something not many of us have a chance of doing.

I greet you all with my warmest of regards

Paul / Doc

=======================================================================

Date: Sat, 24 Mar 2001 01:03:07 +0100

From: Paul van der Sijde" <p.sijde@chello.nl>

To: "John Watts" <coast2coastmusic@yahoo.com>

Subject: Re: [c2cinsiders] New site(s)

John Watts wrote:

> --- Paul van der Sijde <p.sijde@chello.nl> wrote:

> > Helllo,
> > youuu haae given me so far enough sties to keep my
> > custommers busy for
> > the hensx h hahlf yoeaiiiir , but so faar you
> > hahen' t ]givenen
> > an y s4ecuuuuurity
> > --
> > Happy harpin'
> > Doc

>

> Doc,
> Are you OK, or is your keyboard sick? ;)

Both. I have a gang mail in the making, but I can unveil some small details already. I was on the very verge of losing it completely, mentally that is. I tried to knock myself out using sleeping pills in order to get some rest, with varying degrees of success as you see. The entire thing is beginning to get the better of me. Not physically mind you, but mentally. The uncertainty, the waiting. Then there is depression, both from the obvious reasons as induced as a side effect I am very sensitive to in standard benzodiazepine based sleeping drugs.

And then there is the fatigue. That is always there. I have no stamina whatsoever. This is a common, but relatively unknown after effect of both cancer and chemotherapy and it can last for several years after complete recovery. One minute you are doing reasonably well, the other minute you feel like you have spent a day in the field harvesting crop by hand. Once that happens the rest of the day is lost, you can't lift a finger anymore. But you can't sleep either, or you're guaranteed to spend a night watching housewife stuff on Oprah, white trash on Jerry Springer and those disgusting commercials for stuff that doesn't work anyway, like ab trainers, teeth whitening stuff, miraculous diet products and fishing lures that seem to enable you to scoop the fish out of your pond with your hand.

So if you are unlucky enough to have that fatigue fall upon you in the early afternoon, the rest of your day is doomed. I had the bad fortune to meet with my oncologist the other day and he booked me for a scan and a blood test. That is three departments, three uninterested clerks at some desk endlessly checking your personals (no miss, my birth date has not changed in the passed two hours; not even my address, as far as I know) and three endless waits in some impersonal waiting area with hard wooden seats and magazines that are at least a month old. Back into the car, driving through the city where every other street is either under construction or blocked by trucks and vans unloading and imagine how you feel when you get home, three hours later than planned. Hell even an athlete in his mid-twenties would be deadbeat after a thing like that, not to mention that he would start eating large chunks out of his steering wheel and dashboard before he would even get within five miles from his home.  Back home you slouch into a chair, worn to the teeth and that is it.

But it's only 1 PM and Olga is out working. She won't be home before 7 PM and what is there to do? Tons of things, the all roll around in your head, but you haven't got the energy or desire to do one of them. You just sit there, down and out. Now what do you think that does to your mind? Or sleepless nights; the house dark and colder than hell, so not a thing you would want outside that bed; and your mind working. Wide awake and way too much time to think. Small wonder you grab for pills, booze or preferably  both; anything to stop the buzzing that is going on inside your head. And then you freak out, go crazy, get a few slaps in the face and you're in control again - for a while that is. But I am feeling better now; completely off the pills again but now I can't sleep. Slept only two hours yesterday and it's way past midnight again and guess what: I already spent more than half an hour in bed fruitlessly and when Olga fell asleep next to me I couldn't take it anymore. So out of bed again and now I am wondering what to do.  Catching up on back mail messages is an option, but not my idea of a good night's rest. So I face yet another dilemma: go nuts through lack of sleep or knock yourself out and go nuts by the side effects the following day. What a life!

Physically things are under control. Currently preparations are made for a number of radiotherapy treatments and if that all goes according to plan I expect to be undergoing the final surgery in the second half of May. Of course then there still are tons of things that need doing, but it's upward from there on, well out of the danger zone.  And yes, after seven years of faithful service my original IBM PS/2 keyboard (my favorite) gave in. Some dead keys and sticking ones in spite of my efforts to clean it every now and then. Luckily I have a couple of those old PS/2 keyboards stashed, so I just went up to the attic and got me another one. :-)

For your info: I don't have the slightest idea what I was trying to communicate with this strange message, but I guess you already figured as much. Well, back to an overcrowded inbox and who knows, maybe even my bed within a couple of hours. Catch you later!

Happy harpin'

Doc

- featuring Thirsty, the groggy froggy

=======================================================================

Date: Tue, 03 Apr 2001 21:06:04 +0200

From: "Paul van der Sijde" <p.sijde@chello.nl>

Subject: Long time - lots of news

Hi Gang!

Nice talking to you again. It has been a while since my last gang mail, but that was mainly because nothing really happened. I could mail you weekly on how lousy and fatigued I feel, but that can hardly be considered news.

Well, some news has come up recently. On March 20 I had my dreaded conversation with the oncologist. In a meeting between the oncologist, the radio therapist and the surgeon they studied the scans that were made of me in the past weeks. Based on those scans they preferred to have me undergo another chemo treatment in conjunction with radiation therapy. I vetoed that. I don't want to be sick for days on end again; so it is radiation therapy only.

The upcoming month will be spent making more scans, simulations and checking the simulations. If all goes well I will be receiving my first dose of real live radiation on April 23. It is already decided there will be eight sessions each with the maximum dose. Any more than that in my life and I start glowing in the dark. So after surgery there is no possibility for post radiation to make sure everything is gone.

Mentally this thing is tearing me apart. I am depressed beyond any point I have ever had in my life; I start retreating more and more from my normal social life, even to a point where Internet friends start sending me worried mail messages to check if I am still alive and well and all. If you were able to generate heat by feeling lousy you could keep a large restaurant kitchen up and running for two days solid.

A zillion things to do and no energy to do them. And if there are things I would be able to do because they don't really take any energy I don't feel like them. Reading a book means I have to start each page anew to keep track of what it is about and even then I lose it after two paragraphs. Music? Nice, but I can't get myself to play anymore. The only music that distracts me enough at the time are the Argentinian tangos by Astor Piazzolla. and only him because his tangos go against all the set rules for tango music. Rebellious to the core; that's what I still am.

The way things are looking now chances are major surgery can take place in the last week of May or early June. I already informed with the surgeon and he told me there would be an angled zipper i