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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

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Date: Mon, 18 Dec 2024 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 2024 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 2023 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 2023 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 2023 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 2024 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

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Date: Wed, 10 Jan 2024 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

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Date: Sat, 13 Jan 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 in my chest of roughly 12 x 12 inches (30 x30 centimeters); at least two ribs that have to sawn through and bent back and about half a pound of material will be removed from my body. It will take as much as three months before I can function more or less normally again and getting back to the job full time won't be possible before November or December.  As of last week I am officially declared disabled and will receive a disability benefit. My employer may choose to suplement that to my full salary, but if not I lose 60 percent of my net income. Of course the rent, phone, loan and all that other stuff keep going on as usual so I will be short 700 guilders (about $350.00) each month, with no possibility of ever catching up on that since these are only the regular costs. I didn't calculate food yet. Nice to find out when I try to recover from the hell I've been through on chemotherapy.

Well guys; physically I am quite sure I will survive this all. My chances are extremely positive and I fully trust and like the medical team working with me. No sweat there. But God only knows what will happen to my mind in the upcoming months. I barely kept myself from relapsing in the very nasty alcohol abuse I had at the early months of last year (a bottle of heavy liquor each day, often more. Starting drinking at 10 AM and opening the second bottle about 8 or 9 PM and downing that halfway too. We are talking Vodka here; 40 volume percent of alcohol. Thanks to very swift actions from Olga and my psychotherapist I steered clear of that, but only after two weeks of again heavy boozing, of course in combination with sleeping pills.

Everything to blunt out the uncertainty, the fear and the depression, even if for a while. I mean; what's a guy to do if he's slumped in his chair, totally worn out and bored to death with tons of time on his hands to think?  I am completely lost right now. I don't have the slightest problems with my physical condition; it's my mind I worry about.

Well, I hoped to have some better news for you. Something more positive and uplifting, but I can't. Right now I feel like looking for a rope and a solid tree branch. But that's no solution either. In any case you all know how I am again. I'll try and contact some of you individually before long, but don't be too surprised if that may take a while.

Stay well all of you; I'll manage somehow.

Greetz

Paul / Doc

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

Date: Fri, 06 Apr 2024 01:15:47 +0200

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

Subject: Just when you thought you were safe....

Hi Gang,

Just when you think you are relatively safe from any harm befalling you faith turns you over to the Special Tricks and Sick Jokes department.... Most of you know that Olga and I own two dogs; one very tiny Yorksheire terrier, weighing just over six pounds and one fully grown Rottweiler, tipping the scale at a healthy 115 pounds.

Now when we get ready (or one of us does) to walk them, they both get very enthusiastic. Since I don't want any shattered tables or other furniture wrecked, I have trained the Rottie to keep quiet until I call for him from the front door.  In the recent months there have been lots of times that I wasn't able to walk the monster and its little companion to the park, so Olga did it. She is a lot less firm with the quieting down of that big beast, so he's used to being more energetic now when he gets walked.

This morning I felt good and was planning to take my monsters for a walk in the park while Olga would be doing some stuff for herself. In spite of my attempts to calm the Rottweiler down, he went half berserk at the idea of going out, wanted to pass me on the wider part of the stairs (we live in a first floor apartment; an old building with narrow curving wooden stairs) and he tipped me over at the second or third step from the top. I sailed all the way down, two dogs tumbling along with me and I landed with my head to the street door. Since nothing of any importance is stored in that head there was no real damage there, but my left wrist hurt like hell. We bandaged it to fixate it, but even with some morphine the pain wouldn't go away. So around 1 PM I got so fed up with it that I drove to the hospital and had them have a look at me, take an X-ray and see if there was any real damage or just some strained muscles. We already knew it wasn't broken;

Olga examined that first thing and even a child's physician knows how to determine fractured bones. It turned out not to be broken, but one bone fragment in the many you have in your wrist had a crack. So now I am here at the PC, typing with one hand and one or two fingers I can still move without my wrist hurting like hell, a big cast around my wrist and one very bad mood.

My physical condition and all the fatigue didn't allow me to do very much, but there were things I could do if ever I felt like doing them. Now with this thing around my arm and my wrist hurting like there is no tomorrow, even the simplest of things are all but impossible. I have the greatest trouble opening a simple carton of milk. I can hold something the size and weight of the TV remote with my left hand now, but I can't work the buttons, not even with my other hand because the added pressure on the button makes my left wrist hurt like mad. I can move my fingers (and have to regularly), but I can't turn my hand over. I am very happy the pain in my left shoulder didn't turn out to be an inflammation, or my entire top left side would have been useless. Well, I just thought I'd let you know... :o) The hurt in my wrist takes my mind off other things anyway. Next week I am to report back to the hospital. Then they will remove the plaster and see how the crack is healing. Worst case I have to wear the damn stuff for another week; or they send me home with a roll of fixation tape. We'll see and as always:  I'll keep you posted. Man, somebody up there really must have it in for me...

You all behave like good boys and girls now you hear!

Greetz

Paul / Doc

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

Date: Fri, 27 Apr 2024 08:54:09 +0200

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

Subject: I need your help - now more than ever!

Hello friends,

After some initial delays, all aimed at achieving maximum results from my treatment against CANCER. What the heck; let's have the word out again. We've been carefully weaving around it long enough for now.

You all know chemotherapy has come to an end now and that the results of the treatment has been almost surprisingly successful. After several weeks of rest (and Ladies, I assure you: I lost 0ver 20 pounds in four days but I regained them in only four weeks, so don't be jealous) and in the meantime the medical team charged with my case have met several times. They are an oncologist (leader of the pack); a surgeon; a radiotherapist; and an internist. Based on the scans that were taken of me in the four weeks recovery time, and of course on their infinite wisdom, they decided I was to get eight radiation treatments with a dose of five whatchamaycallit each.  That was set in motion. First I was placed on what they call a simulator. It is exactly like the real McCoy, but where the zapper gun is installed there is only a simple X-ray tube that helps them look inside and roughly position me on the table so that the big zapper can reach whatever is necessary to do it's thing. The simulator also has a number of laser projectors, that draw neat, straight lines across your body. With some sort of ink they mark the cross points of these laser lines, so that they have you on exactly the same spot under simulator next time you go on the table.

Step two consists of a CT scan, where my tumor is positioned up to the millimeter. "BullS...t!"! I hear you all cry out. "That has been done time and again before". But we humans are so doggone smart that even the most uninitiated among us can distinguish a rib from a tumor, but a computer can't; it has to be told. And of course it has to be told according to the very latest state of affairs; so they make a new scan and start drawing a very fine line around the tumor, layer for layer. Enhancing the image to 3-D you get an idea how big the bugger actually is. It roughly has the shape of a mushroom without a stem and a somewhat  irregular circumference, and in size it comes down to a medium sized potato; say the upper one quarter to one third of my left lung. Step three of the preparation is to check if the computer simulation they have made of the tumor fits reality. Here I am, up on that scanner again. The board is hard as concrete to give me as little room to move as possible. Nicely lined up with the stripes on my body and the laser projected beams they check, recheck and put some more lines on your body. I went home with a chest looking like a map of the bleedin' London Underground!

After several meetings between radiotherapists they decided to repeat the second simulation session, because they were not yet too satisfied with the results yet. So they had me worried. Of course they had me worried. Who wouldn't be. But it seems that it all wasn't that bad; they wanted to include a small extra area to make extra sure that during surgery they wouldn't regret not having zapped that as well. So more lines and home again, after the news that I wouldn't get 8 sessions with 5 thingies intensity; but 13 sessions with 3 thingies intensity. I pleaded for fourteen sessions and then canceling the last one at the last moment; or twelve and then add one more for luck or something, but these stupid scientists are terrible. Thirteen they say, thirteen it is, no matter what a number thirteen is considered to be.  Yesterday I had my first official zapping session. I stood naked in front of the mirror (ladies: trust me, you don't want to see that!); looked at the lines and drawings on my body and then all of a sudden grabbed a felt pen; drew a smiley on my belly like :o) and wrote "Good Luck" under it in the same color they used for the stripes and stuff. When I lied down on the cot to have the deed done; one of the assistants saw what I did and went into a laughing fit. Then the other one saw it too and the entire session took minutes longer than planned.

Now here the point comes when I need your help. I am quite original in thinking up slogans, but not original enough for thirteen of them and I want a new one every day. So far "Good Luck" has been used and today's will be "Tally Ho!". The very last one will be something like "Thanks and love to you all", but that still leaves 10 to fill. Helpful hints wanted. I am not that much of a pot belly, so I have very limited space available. One or two words should do the trick; like "Sick'em" or "Get the Bastard". Now any help from your side would be greatly appreciated. Short slogans that show that even in this stage I simply refuse to take the cancer seriously. Let those guys at the radio lab have a laugh or two. They treat people with terrible diseases all the time, so they barely get a chance to have a bit of fun with them. I want to be the exception to the rule.

As to the rest: I am a bit restless. I quit smoking early yesterday morning and haven't touched a cigarette since then. So I'm a bit edgy and preoccupied with smoking. Good; takes my mind off the cancer. Olga wanted to be sympathical with me and offered to quit the same moment, but I pleaded her not to. Two people living in the same house both quitting smoking at the same time would mean removing everything from the house that has a sharp edge (and I have a very impressive collection of folding knives, not to mention my kitchen) and even then within a week everything that is not nailed down will be flying around the house.  Besides, Olga will get her moments of intense fear and tension still when my surgery is going down, so if she can't smoke then the nerves will be killing her. She'll spontaneously will start eating chunks from the table top or something. If she wants to quit as well, and she does, let her do it after my surgery. Those two months won't make any difference on all those years health wise, and it will be exactly what she needs to keep her sane until she's sure I am all right.  Depressions come and go like rain. One day it's just a shower, the other day it's beautiful from dusk 'till dawn. It sorta' depends on what happens. Most of the time I'm on the way up now, so I'll manage.

Fatigue still is a big problem. Yesterday I went to the hospital for my radiation; did some shopping and then bought me a big 35 pound bag of food for the dog. At 3 PM I had it. I was dead on my feet. Yet I managed to go walk the dog for a long walk around 6 PM, so even that is slowly improving. They tell me radiation therapy is going to wear me down as well, but that may take some weeks from the first treatment until the true fatigue sets in. It seems that fatigue is even worse than what I had now, so I think I'll have a good bottle of sleeping pills ready, a portable CD player and headphones next to my bed and a stack of CDs and then lock the bedroom door from the inside. That oughta' do it for the first two weeks. Surgery is planned for anywhere between four to six weeks after the last radiation treatment. Still no date and that is like hell. If someone asks how I am doing I can tell him how I feel at that very moment, but on the long run the only thin I can say is "I don't know". I have a very fair chance of surviving this thing, but then again  it could just as easily kill me. One small complication and I'm history.  Of course I don't think that way, but it is wise enough not to lose sight of your own mortality and to fight as hard as you can within the borders of that mortality.  The people saying "This thing can't kill me" are not the true survivors.  They think themselves invulnerable and neglect all symptoms that come with the disease telling them to take it easy for a while. So they overstep... and die.

Well, with these happy words I will conclude this gang mail. I will keep you posted on how things are going. There have been some addresses that are bouncing on this list. I don't remember exactly which ones, but the moment they get back, I'll post a message in the newsgroup to contact me offlist with their correct address. Then I'll send them this message separately.  Hey you out there: take care of yourself and of each other (yuk! I sound like Jerry Springer and his white trash candidates).  Have a nice day and cross your fingers for me, although not much can go wrong now anymore.

Warmest regards,

Paul / Doc

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

Date: Fri, 18 May 2024 13:54:35 +0200

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

Subject: Ready for the next stage?

Hi Folks!

It's been a while since I wrote my last gang report and most of the reasons for that will be explained later on. For now I live by the day; some days are good and work out fine; other days are downright bad and feel that way too. Then there are days that are even worse; and on those I look at the clock at two PM and wonder how on earth I am going to get through to the end of the evening. Swallowing a handful of sleeping pills at that moment and sleep until the next morning has some strange mechanism make you pay for that double time the next day. Trust me; I know what I am talking about. I had a day like that yesterday and against better judgment went for the pills option. I won't tell you about today....

Radiation therapy has been done. Last Wednesday I had my last big zap and now I am officially ready with the whole shebang. I must say though that the strange yellowish green glow that comes from my chest is practical when reading a book in bed, but still somewhat discomforting. I've had to replace my cell phone three times already too. Don't know what it is...... ;-)  Only joking of course, but I did get the maximum dose of radiation a man is allowed to get in his life without getting confronted with all sorts of unwanted other things as a result. "Well how was it?" I hear you say all. In itself it is nothing. I told you they draw lines all over your body to get you under the machine in the same position every time.

Well, some of you already heard, but last week I bought me a digital camera and made a shot of myself. I enclose it here. Looks like a freak drawn railroad map, doesn't it? The red spots are irritated skin due to the radioactive junk I had to endure. My skin feels like raw meat in places and I have to powder it twice a day with flour (!). Yep. Strangely enough that stuff seems to have components that feed the skin exactly the way it needs to be fed after the ordeal of radiation. Didn't know, but on is never too old to learn right?

I did have a rough time installing the software to get the pics from the camera to the PC, but as you see I managed that. In the process I solemnly promised myself never again to help anyone out again with either hardware or software problems. I have been a theoretician (sp) for so long that all tech stuff has passed by me for more than two years. I have the greatest trouble keeping my own notebook breathing and now I have the same miserable time with my home PC running Windows 98 as well now. Had to upgrade or the photo software wouldn't work. I am no longer an IT technician; haven't been one for far too long. I am a management consultant who happens to have the strategic use of IT in the organization as his specialty. That means I can say what tasks to automate, what specific areas of interest should be monitored and what kind of people are suited for what kind of task and more of that stuff. I intend to buy another (extra) PC somewhere early next year and I want to connect that to this one so that Olga and I can use the Internet simultaneously yet independently. I already know that I will put up a note on the company bulletin board that I am offering a good bottle of whiskey or some CDs or something to the colleague who can do that for me. I won't even attempt to do it myself. Four years ago I wouldn't even have thought about it and done it in one Saturday afternoon. See what I mean?

But back to the railroad map on my chest: I almost couldn't resist the urge to add a few lines myself here and there, but didn't do it after all. What I did do was write down some wisecracks on my belly to get those guys at the radio lab a laugh. One was "Heat for 40 seconds at full power; turn half way"; the radioactive warning sign; some remark like "Zap here please", with an arrow indicating the spot where the tumor was and more like those. On the last day I wrote some sort of a short "thank you" note to the full crew and invited them to join me on a picture in front of the big zapping machine. I used the camera's self timer for that. You can see that pic enclosed as well. I sent it to the Radiotherapy department as well, of course!

I have gotten through it quite well. After the first week fatigue set in and I didn't know it could be that bad. Every muscle in my body is aching like hell, especially in the morning after sleeping without moving for all of the time. The moment I step out of bed my legs are barely able to support my weight and everything is stuck from the neck down; even breathing gives me trouble. Then I take my pain medication and a hot cup of coffee to chase it, melt it, heat it up so that it will be absorbed in my blood stream faster and after an hour or so I feel well enough to take a hot shower. Under the shower I move around a bit, especially my neck, shoulders and upper back and that gets me loose.  During the day I loosen up a bit because my muscles warm up.  I realize that this all is also a result of a lot of tension I endure at the time. There still is no certainty as to what the effects were the radiation has had; there still is no date for surgery and the only thing I know is that I have to get another MRI scan for the surgeon at June 5.  Now logic tells me this man will want to work with data as fresh as possible, so I expect the surgery to be somewhere closely after that date, but no official date has been mentioned yet.

All of this of course has its results on the mental side of things too.  I am so tired nothing really interests me; mail keeps piling up, some envelopes printed with very threatening remarks, but I just put them on a big stack and look into them later. I feel listless and don't do a thing useful (okay, short spikes do appear like the camera, but even that is already sinking). The entire thing around harmonica repair/customization is at a virtual standstill (both due to this as due to the fact that I can't seem to find room for a decent workshop) and even playing has been virtually zero for weeks if not months. I noticed when I was asked to sit in for a couple of songs with two guys (guitar and bass) doing some Brazilian stuff. The first song was a downright disaster and I went home immediately afterward. After all, this was a performance, THEIR performance; not a practice session. I asked for psychological help from the hospital three weeks ago but except for one psychiatrist taking my story, evaluating it and promising me that she would take it up with the psychology department and that they would contact me it is the last of what I heard from that, in spite of several calls from me asking about what is going on. Olga is about my only personal sound board now. I have one other friend who I can call day or night, but he had a job offer in Portugal for a year and I can't blame him for taking it. For all the rest I am completely alone with it.

Okay, excepting you guys, but a message on a computer screen or an incidental phone call - no matter how much appreciated - is not the same as face to face contact.  Well, that's about it for this one. Not too happy, but then again, neither am I. I promise I'll send a new message when I'm in a more joyful mood. For now: thanks for your ongoing prayers and support. I know a lot of you guys are pulling for me, either in thoughts or prayers or any other sense and I am very happy about that. It keeps me sane in times like these. Thank you.

Heartfelt love and regards,

Paul / Doc

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

Date: Mon, 11 Jun 2024 19:22:46 +0200

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

Subject: HI GANG!

Nice to say that in the subject line, but what do you use for an opening line in the message text. Hm. Gotta' think better next time.  As you see I put a small attachment to this message. It's a picture I came across ages ago (truly; we are talking around 1985 here) and have been meaning to send out to friends all over the world. Small problem: the text was in Dutch so I had to restrict the audience somewhat in order to remain understood. Well today I had some spare time on my hands and did what I should have done a long time ago. You see; the file has been my background bitmap for years and once when I had an assignment for a customer where I had to send out 78 laptops to their representatives in the field we standard handed them out with this thing as background. Of course we had a button ready on the desktop where they could set it back to the original company logo in one mouse click but I doubt if a lot of them have used that button.  Anyway, today I pulled the thing into Paint and removed all the Dutch text. Then I printed the bugger and redid all the lines. That was necessary, it was a rough scan of an enlarged photo copy. Imagine the graphical quality of especially the finer lines. I got it from a software catalog from a company that doubtlessly paid the original artist, Hein de Kort, a lot of money for it, so I don't know how many copyright rules I am violating here, but to be honest I don't give a hoot. Besides, Hein always signs his work and this one wasn't signed.

It is definitely his style, but since there was no sign it could very well have been that the "original" in the catalog was made by a copycat too.  Anyway, those of you who want to use the picture as their Windows background: be my guest. To do so, save the attachment in C:.  It is imperative that it is there, otherwise your "Screen Properties" can't find the thing.  Next thing you do is set your screen properties right, so that you don't have a white picture on a blue-green background. So anywhere on a blank spot on your desktop, click your right mouse button. You'll get that small popup menu, with on the very bottom the word "Properties". Select that.

Now for those of you who aren't too sure of themselves: write down what you see as a sort of "undo" file. If you don't like the effect after all, you can always restore the original settings, You get a dialog box that starts with the tab "Background" and now scroll through the different names until you find "DeKort", the name of the file you just saved in C:. In the miniature screen in the top half of the box you immediately see how that looks. If it looks like a mess, make sure that you don't have the background image set to "tiled", but to "center". Now Windows 98 users, make sure you don't use the "stretch" option either, or you'll distort the proportions and make the thing look like nothing.

Now the file is 800 x 800 pixels large, so if you are using an 800 x 600 resolution (who still does these days....) you may want to adapt the entire size of the picture. If that is the case, mail me offlist and I'll talk you through that process in no time, or simpler still: I'll send you a slightly smaller version.  Now with the background picture in place, you of course don't want to see the edges of it in whatever color you had for your desktop.

Standard that is the dull bluish green (or greenish blue) that comes with your installation. Time to change that. If you only selected the file that is supposed to be your desktop background in the dialog box, so far nothing happened, not even on the small screen in the dialog box. Hit "Apply" to see what things will look like in real life.

Next thing you want is the background of your screen to be white as well, so that the picture seems to "float" on the screen. For that purpose you hit the third tab on the top line of the box: "Appearance".  The top half of the box again represents what things look like when you do what you choose. In the bottom half you can choose several lines.

The second line is important to us: it says: "Item" and has a default "Desktop" filled in. Behind it you see a field "Color" with the current color of your desktop. Click the small arrow next to the colored field and choose bright white (the top left hand one). Hit "Apply again to see what it looks like and you're okay. The picture now literally floats in the middle of your screen. The only thing now (if it is necessary) is to make sure the windows are white too. Click the little arrow beside "Desktop" and select "Window", all the way at the bottom. Look at the "Color" field to the right of it and change it to white if necessary.  Done!

Again, if any of you has any trouble with this, mail me personally and I'll see what I can do to help you through this. Good luck with it and I'll write another gang mail soon to let you know how I am doing. For that particular one: don't get your hopes up too high. I'll live, that's almost for certain now, but if you ask me how I am doing now try to imagine a 90-year old fart with arthritis and a chronic flu.  More about that soon to come. Stay tuned to your favorite channel!

Greetz

Paul / Doc

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

Date: Tue, 12 Jun 2024 19:33:52 +0200

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

Subject: Just one of those gang mails I keep sending.....

Hi Folks,

It's been a while since I last sent word of my condition. To tell you the truth: nothing much happened in that time either. Radiation treatment may seem like a big thing but in fact it's nothing: you lay there on a hard cot and they are very busy setting the machine to the right spots on your body. Then they leave you and you hear some buzzing for about 20 secs and they return, resetting the stuff and the procedure repeats and that's it. Out in less than two minutes after coming in.

That's what I walked with all these ridiculous lines on my chest for during all those weeks. In any case on May 13 I officially had my last one. That was only a couple of days after my birthday (May 9 for those of you who don't know) and my present was a digital camera. So I had my picture taken by the camera on automatic shutter release with me and the whole crew around the apparatus. Yep, weird. But then again: you know I am. After the last treatment they told me the ill effects would continue for about two weeks or so. Well they did. I lost half my beard, so I thought it esthetically more responsible to shave off the other half as well. It didn't affect my moustache, so I tried keeping that but with that and the crew cut hairdo I keep after chemo I looked a full-blown faggot, especially with my leather motor jacket on. So off with the broom as well.  So yet another thing I have to sacrifice on behalf of this damned disease without being able to choose.

In the meantime my oncologist told me I had contacted a complication to lung cancer that is not rare, but only happens to so many people: the Jean Marie Bamberger syndrome. It occurs as soon as there is a tumor in the lungs and the effects wear off automatically as soon as the tumor is removed. The symptoms are development of drum stick fingers - the ones where the extreme joint is significantly thicker than the other two and looking at them I realized I had them - and some problems in the joints.

Well, I had some trouble in my right ankle and my left elbow and some more minor aches, so I thought that was it. WRONG! The troubles in my joints kept aggravating until literally every joint in my body was aching. The pain concentrates especially in my arms and legs, so when I get out of bed in the morning I walk like Donald Duck, barely able to step. I struggle my way to the kitchen, take my pain killers (a higher dose of morphine than before the tumor was discovered) and stumble back to bed, where I lay down and wait for the pills to kick in; usually two to three hours. Only then I am able to fight my way to a hot shower and loosen up some muscles that have become entirely cramped during the night. Usually by mid day I am okay. And it grows worse every day.  Last week I had a scan for the surgery department. On June 11 that scan is studied by the medical team and on Jun 19 I will finally get my answer. I hope. Probably they want me to take another chemo before surgery, to give the tumor one extra push.

In the meantime the whole shebang has taken more than 52 weeks on end, the legal line where you get tested for disability. Well, in my current state of health I am hardly able to fold a newspaper, so I am fully disabled. A disabled benefit comes down to 40 percent of my net income, but pending the decision my employer has paid my full income during the first months of this year. Yet now the outcome is negative, they corrected the difference in the month of May, resulting in a negative income for me, so my boss handing me a bill instead of a salary. Add that to the fact that several aspects of my medical treatment are not insured and I have to pay for them myself (psychological help, to mention one) and being at home alone, bored and feeling bad usually gets you out to the shops buying things you don't need or even want and here you go: I am in a more than 10,000 guilder stretch with the bank and several debtors; say somewhere near $4,000 US. Of course life goes on as usual so my refrigerator/freezer combo went out of business permanently two weeks ago. The cooler is still working, but the freezer is out of commission. Repair price way over the current value of the thing so I could get a new one at a special deal, trading in the old one for $350.00. But I have to pay in cash when the thing is delivered.  Then Olga's mother's heart condition has turned into a ticking time bomb, ready to go off any minute, so she is awaiting surgery too. If that happens to coincide with mine, Olga can better take up a room in the hospital because nobody is going t really take care of us. And then what will happen to the dogs?  Count your blessings, I believe they call this kind of stuff.  Well, those of you who are praying for me, you better double your effort or either Olga, her mother, the dogs or me are going to end up as a vegetable.

In any case: that was the good part. The bad part is that some doctor in the hospital wanted me on methadone as a pain killer as well. Even now with minimal tranquilizers and a dose of morphine I am used to I hit door posts when turning corners; sit halfway down a chair and take detours in what should be a straight line from my chair to the door (that is: if I am able to get out of the damn thing; I feel like a 90-year old rheumatic cripple) Adding Methadone to the circus would make may disorientation even more complete. That would make me make me cross the street without even knowing there was a bus coming on and wake up (or not) 30 yards further on without even knowing what hit me. So I thanked for the honor and declined.

Well, it's not all that happy, but at least you all know how I am doing currently, since I heard and felt that a lot of you were interested, but were afraid to ask or something. Don't worry about me. I spend the most of my days in bed and even when going out I only take the trusted routes, so I'll manage. As for the rest of the time: just plain boredom. It's a totally new experience what poverty can do to you...  Hang in there, good friends. And keep your fingers or whatever's crossed for me. I hope to undergo surgery soon and as soon as I know more about that I'll let you know of course. In the meantime: take care and don't do any things that I wouldn't do!

Warm, loving regards,

Paul / Doc

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

Date: Fri, 06 Jul 2024 21:24:14 +0200

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

Subject: Update on things going on

Hi all!

It has been a while since I sent you my last message and a lot of things have happened since then. First and for all I have bee off-line due to some hardware problems I hope to have solved now for good. Next I have been pretty ill as a delayed side effect to my chemo treatment, but thanks to new medication I am now quite well, albeit a bit absent-minded now and again.

There has been an operation date set. Surgery is supposed to take place either on Thursday 19 or Thursday 26 this month. That gives me loads of things to arrange, since this surgery is far from safe. It will be major work where veins and arteries are involved, as well as a major part of my spine. That means last will and testimony before the 19th!  Right now I am doing quite well, physically that is. Don't ask about my mental state because that is a mess of course and will remain so until I go out on the operating table. Olga is not much better, so we play games where we pretend that I come out of surgery okay an what we will do with the time we have then. Right now I am scared shitless and I hope you will all understand.

The surgery date is set on either Thursday 19 or Thursday 26. The plan is to do it on the 19th, but there are some problems getting OR time that day, so a week's delay could be the result.  In the meantime things are going quite well out here. I try to plan ahead as far as possible, only to forget the fact that I may die on the table or shortly afterwards. We are busy redecorating the back room, our study, and soon the bedroom is on for a once-over. As you can see, I am trying to keep a positive perspective of the future.

There is only one thing: due to my illness I disregarded my personal finance to a point where now official court orders are littering my doormat. This weekend I am planning to assess my financial situation in full, but I already know the outcome. Thanks to the fact that I landed in a disability benefit instead of my regular income, I lost some 60 percent of my monthly pay. Talking in guilders that is a downfall from 5,800 t0 2,400 net each month. Now if you consider my steady cost, including payments on the loan I had to get in order to get rid of my ex-wife is 3,200 guilders. See my problem? Now of course Olga can chip in but her income is a fraction of mine and I don't want her to pay my debts. Here is my next "challenge" as you may call it.  Well, you know all of it now, including the dirty financial bits. Wish me luck during surgery; it is risky enough to make this my last message to you. If all works out fine, I'll be back behind the keyboard some two months from now, or maybe even sooner. Pray for me, cross your fingers or do whatever you think brings me luck and good fortune; I'll need it all.

Greetings,

Paul / Doc

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

Date: Mon, 09 Jul 2024 13:03:24 +0200

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

Subject: The plot thickens....

Hello friends, relatives, business relations, and whatever folk is out there holding their collective breath for me!

'Tis done, or to quote the Bard in a slightly modified way: "...it is nobler in the mind to suffer the slings and arrows of outrageous fortune then to take arms against a sea of trouble, and by opposing, end them.....".

Today my friends the gothic story you all have been experiencing - each at his or her own way - on my expense the past nine months has begun drawing to an end. To the background sounds of Sonny Boy Williamson II live in Europe I can tell you with a slight disquiet that the horrors I experienced first from learning I contacted a potentially lethal disease and the rigors brought to me by the treatments that were aimed at fighting and containing the ill effects of it are over. The true battle is on now; it's go or no go time now.  A surgery date has been set: August 2 I will be on the table, surrounded by two Thorax surgeons (normal procedure) a visiting Thorax surgeon from Rotterdam (because my case seems to be more than the ordinary and this man can either learn or offer an extra opinion). In the waiting room an Orthopedic surgeon and a Vascular surgeon will be on standby to be called in at a minute's notice to assist in the operation. Counting those and the usual personnel of Anesthesiologists, OR assistants and nursing personnel, it will be a pretty crowded bunch around that table.

Of course the isles above will be filled with students who think that my meager body may offer some form of study material, and if not, the work of the masters in this theatre will. For some reason I am quite of sorry the bill for all this will be sent directly to my insurance company. Out of pure curiosity I would have liked to have a glance at the tab of this entire project. One thing is pretty certain: all premiums I paid in the past years have been repaid and probably many times over. I wonder what this entire venture has cost, but I think it will be close to several average year's incomes.

So be it. What is the price of a human life ("Am I human then?", you might ask. Well, I asked that question time and again for myself and to be honest I still haven't found the answer).  In any case: roughly three weeks from now a small army of medical specialists will be doing all they can to remove a tumor from my body and hence save my life. Let there be no doubt about that folks; if for some reason that tumor cannot be removed from my body my life expectancy is expressed in months rather than years. In that case if I am lucky I should enjoy my Christmas dinner exceptionally carefully, that is if I get the opportunity. With the Euro entered as the official European coin in 2002 there's nice money to be made waging if my funeral insurance will be paid in good, old Guilders or brand new Euros.  For those of you who like bedtime stories, read on. Others better skip this paragraph. I will try to omit the most raunchy details, but here's what is going to happen to me:

First I get opened up at the front, an L-shaped wound 30 x 30 cm, about a foot each side for the non-decimalists amongst us. Then loads of work will be done on my Aorta (the main artery from my heart directly branching to my brain), where a piece of some 6 cm/2.5 inch will be replaced with garden hose. Then the large nerve strand in my neck that is moving and controlling my left arm is up for some work. If it seems the tumor has grown too deep into that nerve strand, and I will lose too much control over the arm they call off the operation and I am a dead man.

Suppose that all goes well, they sew up the mess they made and turn me over, only to repeat the L-shaped curve, but this time in my back. Here they will try to remove what is left of the tumor from my spine. That's where (if necessary, X-rays don't tell everything) the orthopedic surgeon comes in. Possibly two of my vertebrae (the top two) have to be either cut in half or removed completely (no need to tell you my spinal cord is there quite close, so there is a slight risk I may end up paralyzed from the tits down), which is another moment to choose to either continue or call off the entire operation.  During the entire procedure the tumor itself isn't to be touched. Only healthy tissue one or two millimeters around the tumor will be affected.  So the whole potato (that is about its size) will stay in place if they decide to sew me up again and call it quits. The entire show can take anywhere from three to 36 hours, so there is nothing I can say.

Hey you believers out there: if I ever needed your prayers, it's now. I trust the surgeons to do their work the best they can. If you help me trust God to guide their hands, we might make a wonderful winning team.  That's it folks! Catch you all next time. Since I won't really die on the table I won't become sentimental before my admittance to the hospital, but maybe I will need you more than ever afterwards.... For now I count on being able to give you some wonderful news.

Take care of yourselves,

happy harpin'

Doc / Paul

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

Date: Tue, 31 Jul 2024 18:05:18 +0200

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

Subject: This is it folks!

Hi friends and all people who care!

This is it. Tomorrow 10:00 AM local time I will be admitted to the hospital and as of Thursday, probably somewhere around 08:00 AM local the operation will start.  The whole thing will be a win or lose game; either we win and the tumor can be removed successfully, or we lose and the tumor cannot be removed without reducing the quality of my life so much that the cure is worse than the disease. What is your life worth if your entire left arm is paralyzed and numb, or if your spinal cord is cut and you are paralyzed from the shoulders down? Those two are the largest risks I am facing during surgery, apart from of course internal bleeding or infection, something that can also happen with a standard appendectomy.  Since I will be in the hospital for four to six weeks after surgery, only to recover from the junk they have done to me, I have found someone who is willing to keep you all informed on how I am doing. His name is Hans Melman. He has been on this list all the time and he now offered to keep you posted in my place as long as I wasn't able to. So don't be surprised if you receive mail from him concerning my humble person.  He will be in constant touch with Olga, who of course has first hand news on my well being all the time. He will relay that news to you as soon as he receives it, translating on the way since Olga can't speak English to save her life.

There is no way of saying if the operation will be successful or not.  No matter from which side I am X-rayed or scanned, there is always something in the way obscuring the exact size or location of the tumor.  There is only one way of finding out how bad or good things are: open me up and see with their own eyes. So someone up there is tossing a coin. If it lands heads I'll live on forever; if it lands tails I'll die within a year. If it lands on the side you will all be millionaires within three months from now. :o))

I know your prayers and positive thoughts have been with me for all the time I have been sending out these communiqués (or "gang mails" as AJ prefers to call them). Well, in the upcoming days I will need them more than ever, so please help me pull through this ordeal.  Do not expect any outcome of the operation before Thursday 17:00 local time. By then Olga will have heard the news, but it is doubtful if her first thought will be to inform Hans by Email that the operation went as it did.

Replying to me personally is of no use; I'll be in the hospital and despite the advanced ways we Dutch have for our way of life, a notebook with an Internet connection is not yet standard equipment in the hospitals. I tried borrowing a notebook and modem, but alas: they are in short supply so no dice. Too bad. I wouldn't have loved it more to keep you gang updated on facts myself, without being dependent on someone else. Sorry Hans, no offence intended. It's just that my own words always hold more emotion than the words heard from a person who hears second hand emotions himself. On the other hand it could be better.  Filtering the first, raw feelings of after-surgery shock can't be too bad...

 In any case guys: wish me luck and pray (or whatever) for me. I'm heading for the big one now.  Lots of love and in case I roll of the table as a corpse: Nice knowing you!

Regards and all the love in the world

Paul / Doc

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

From: "Melman, Hans" <Hans.Melman@atosorigin.com>

Subject: Paul's surgery: the first (positive) results

Date: Thu, 2 Aug 2024 21:18:55 +0200

Hello everybody,

As Paul told you in his latest gang mail, I will try to keep you informed on his physical status.  Olga just called me with the first results: Paul has been in surgery for 12 hours and everything went quit well (as far as you can use this terminology in these circumstances). The tumor has been removed completely and no secondary tumors have been found.  The tumor was lucky enough not grown into his spine. Unfortunately they had to hit some nerves, so he has lost control and feeling in his left little finger and ring finger. Strange enough Paul seemed to have foreseen this.

When I had dinner with him last Monday, he explained to me what he would do if he would lose control of these two fingers, to still be able to play the harmonica. Compared to the severity of his illness this is a minor issue, which he will surely overcome.  The next days Paul will be kept asleep by the doctors.  This is all information I have for the moment. Olga is fine, but a bit lazy due to the tranquillizers she has been using today. If any news comes up, I will inform you all.

Bye for now,

Hans

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

From: "Melman, Hans" <Hans.Melman@atosorigin.com>

Subject: Status Paul: 4 days after surgery

Date: Mon, 6 Aug 2024 17:39:56 +0200

Dear all,

It's going fine with Paul. Just talked to him on the phone...... Yes, he's able to speak, though hard to understand because he has little air now and because he is still in pain. Olga just asked me not to visit him for a week, because she's afraid of infections.  The doctors didn't keep Paul asleep after surgery. He stayed half a day on intensive care, and you can imagine how he felt after waking from the anesthetic.

Paul is only able to lay on his right side and despite of the pain he is bored from time to time, because he has nothing to do. He wants to fight himself back into business, so he started reading books like "situational leadership" and "leadership & change management". Of course he can't read all day.  As Paul is not be able to e-mail for the coming weeks, I want to ask you to send him a card. Cards can be sent to his home address, so Olga can take things with her when she visits Paul. The address is:

Paul van der Sijde
Rhijnvis Feithstraat 36
1054 TZ Amsterdam
The Netherlands

Next time more news.

Bye for now,

Hans Melman

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

From: "Bogdan Butenko" <Bogdan@Jameson.on.ca>

Date: Tue, 7 Aug 2024 08:43:50 -0400

Subject: [slidemeister]

Hello fellas, just received a mail from Doc's wife. Our good doctor is doing just fine, no fever, breathing on his own, in pain though. Olga said in couple of days he could be phoned to in the hospital. His phone number there is:

+31 20 301 3416. A reminder, they are 6 hours ahead of our EST.

Bogdan

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

From: "Melman, Hans" <Hans.Melman@atosorigin.com>

Subject: Paul 10 days after suregry

Date: Mon, 13 Aug 2024 09:09:58 +0200

Hi folks,

Yesterday I talked to Olga about Paul's recovery. He's doing real fine.

Last week the doctors took Paul of the lung machine, which prevents his lungs to collapse, which always can happen after heavy surgery. He reacted very well. He is able to take short walks and is strengthening day by day.  Miraculous changes in his left had: the feeling turns back into the two fingers and it is likely that in time he will be able to use them again.  During surgery a nerve has been hit, which controls his voice. This results in Paul having a bit different voice than before, but is only a minor issue.  This week I will visit him in hospital and will tell him about all of your good thoughts and prayers. I will tell you all about my findings.

Bye for now,

Hans

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

From: "Melman, Hans" <Hans.Melman@atosorigin.com>

Subject: Hospital visit

Date: Tue, 14 Aug 2024 09:47:44 +0200

Hi all,

Yesterday I visited Paul in the hospital. His mother was there too.  Unfortunately Paul had a bad day yesterday. Time by time he has a slight fever which doesn't make him feel good. Doctors are trying to find out what causes it. The day before he felt so good that he even could walk home if the needles didn't connect him to the hospital. Nevertheless the drain in his wound was taken out in the afternoon and it's even possible that he will go home soon.

His left arm causes some trouble because he can't control it enough.  This prevents him from writing (he's left-handed) now, but it's said that he can overcome this by having therapy.  His voice sounds bad. It is a mixture between whispering and speaking.  Only time will tell if this will change.  Paul was very happy with your reactions, feelings, prayers, good thoughts etc. This does make him feel less lonely. He even thinks about the future and he wants to go back to work in January. So in general he has a positive attitude.

Next time more news,

Bye,

Hans

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

Date: Fri, 31 Aug 2024 13:41:30 +0200

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

Subject: Back on the track

Howdy Folks!

Last Saturday afternoon I was released from the hospital. I thought I heard someone mutter behind me "Here's the paperwork, get him the hell outta' here", but I could be mistaken. In any case this was my second release. Originally I was released on Wednesday August 14, but that was way too soon. I enthusiastically visited some friends that day, way overdid my capacity for the moment and as it turned out later that I asked way too much of myself. At the beginning of the evening I had a high fever that wouldn't break, and lasted far into the following morning. So Olga had an ambulance come and take me back to the hospital.  There they started with antibiotics through an IV unit straight away and ran all sorts of tests on me. One of the tests showed that there was about a liter and a half of fluid behind my lungs, waiting to infect.  Small wonder I ran such a fever.

Drains were put in place immediately to get the fluid out and that took another ten days before they ran dry even with a vacuum pump on them.  Needless to say that two drains in my back gave me a lot of discomfort and pain and I didn't sleep all too well with all those hoses coming from my body either. There was nothing I could do. Those drains were so cumbersome and painful I couldn't concentrate on reading a book or even a magazine; I watched TV but my attention for the subject at hand wavered in and out of focus. The fever broke quite soon after the antibiotics were administered, but the feverish feeling, including the cold and the hollow head stayed on. As it turned out those feelings were largely caused by the drains, because once they were removed and I was kept under observation for another day I felt much better, more energetic and was able to concentrate much better as well.

As you all heard from my friend Hans the actual surgery went wonderfully well.   Speaking of Hans I want to thank him here for taking on the task of keeping you all informed of my progress and well being. Knowing Olga doesn't speak a word of English he spontaneously offered to take on the chore and I am very grateful for that. Thanks to his efforts you haven't been kept in the dark about the outcome of things until I was able to write again; i.e. today; four weeks after the fact. Considerable chunks of poor, little "me" have been removed during surgery. Body parts one did not expect to be removed, such as ribs and blood vessels, but it paid off. The surgical team was able to remove every last cancer cell from my body. Given the minute chance they overlooked a pinhead of cells elsewhere in my body (hardly likely since chemotherapy would have taken care of that...) I now stand just as much of a chance of getting cancer (again) as the next guy. And that is wonderful news.  Guys: I fully beat the cancer!

Of course I am mature enough to realize that the true healing process only starts now. The first thing I will have to do is acceptance.  Accept that my body has been severely damaged and is in no way capable of doing the things it did before surgery and will remain so for a considerable period of time. I will have to accept I must slowly recover from major trauma, expressing itself via virtually zero stamina and near constant fatigue. Instead of wasting my energy on frustration I will have to put that energy to good use trying to keep up the fight. And - probably most important of all - I will have to fight the disease in my body; not myself.  Of course I am no saint and I will waver from these important rules.  But then I trust on you to kick my ass back in gear as you have done in the past nine months to a year or so. Please do, I won't get mad at you; only grateful.

One more batch of bad news: We had to get rid of our 6 year old male Rottweiler dog named Castor. As you may or may not know dogs (originally, in the wild) used to live in packs with a very strict hierarchy. The usual household situation is the substitute for that pack for modern day house dogs. There's one person in the house who is the boss, one who is number two and so on. In our Rottweiler Castor's view I was the absolute boss, but ~he~ was number two and Olga came somewhere behind that. This means Olga never was able to manage the dog fully and with me being sick Castor saw opportunities to challenge my leadership.  Impossible with a 112-pound dog that sports over 900 pounds of jaw pressure. So a solution had to be found. Since my situation of weakness could easily last for four to six months it was impossible to find a temporary home for the animal. Way too confusing in such a time frame.  So it had to be something permanent.

And then you see there is someone watching over your shoulder at all times. Olga met a guy in the park who used to have a Rottweiler about the same age as ours. That animal had to be put to sleep recently because of some very nasty disease it caught. The guy (as gay as they come) missed the dog like crazy and immediately became serious when Olga gave him our standard, half-serious remark "He's yours if you want him".

Of course matters weren't settled there and then, but some four weeks later he came and picked up Castor, signed a contract in which he accepted responsibility and released me from responsibility for the dog and that was that. He was so enthusiastic and playful with the animal that the last week Castor was constantly looking for him in the park, even thought the guy himself was out of the country for business. I truly have the feeling I found a good new home for my dog and that is a rarity, since usually one has reserves about that. It is a relief. Not that I say that it is good riddance; I miss the animal every day. But I wouldn't want to go into a fight with him over leadership. I would have won the fight hands down, but the dog would have been spoiled and I wouldn't have been able to trust it anymore.  So far cancer has meant for me: lose my job; lose my income; lose my physical health; lose my status; lose all my money; almost lose my mind and now lose my dog as well. The only things left are my life and my girl and with those two I will have to rebuild the whole shebang. Okay, I know: with trust in each other and trust in the future there will be nothing I cannot reach, but hey: Gimme a chance to whine once in a while will you? I know exactly what to do to rebuild my life, to make it even better than it was before. And the pieces I didn't know have been told to me by scores of friends and others who had my utmost well-being in mind. But those who know me know I like to whine now and then. Call it my way of singing the blues.....

Well, the story is complete from the first discovery of my cancer to the full removal of every cancer cell in my body. I am now on a trajectory of healing and the only way I am going from here is upward. I am still tired very quickly and that means that I can't do much yet, but gradually I'll return to normal life, with my social things such as discussion groups, harmonica playing and several other things you may or may not notice. But I'll be coming back and that is for sure. From this position I thank you all for your unquestioning support and your supportive reactions. They helped me through what probably has been the darkest period of my mind. You all have shown me who my real friends are and how tight a group the harmonica community is.  Thank you all for that.

In utter gratitude

Paul / Doc

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

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

Date: Wed, 12 Sep 2024 12:06:04 +0200

Reply-to: harptalk@yahoogroups.com

Subject: [HarpTalk] Off-topic: Sincere condolences

Yesterday afternoon around 5 PM local time (about 11 AM EST) I heard about the dreadful incidents that even defy the term "act of terrorism".  I was utterly shocked when I heard about what happened in New York and Washington DC and could only imagine the death toll these mass murders would bring.  I rushed home and tuned in to CNN Europe, who of course had the news live. Seeing the devastation caused by the collapsing of the Twin Towers, I could only believe that anyone who had not cleared the buildings before that did not have the slightest chance of survival. Maybe, just some survivors will be found, but these people will have to have been extremely lucky, although it is imaginable their chances of survival are diminishing by the minute.

Olga arrived home only minutes after I turned on the TV, unaware of anything yet. She was in utter shock too. The first thing I did this morning was put on CNN again to see if more had happened and I learned a third tower had collapsed early in the New York evening. I sincerely hope this building had been evacuated before the collapse.

About the Pentagon much less was known since the entire complex was reportedly sealed of hermitically directly after the crash by the FBI, and understandably so. The mere function of the complex and the nature of the information stored there will severely hinder rescue workers in doing what they need to do and that is finding and rescuing possible survivors.  I cannot find the words to express my disgust and horror about what happened and only wish I could be there to try and help as many people as I could.

Then of course there is the mystery of the fourth plane crashing at a seemingly random location, its planned destination unknown. Also that crash left no survivors and we can only guess what happened there.  Maybe the cockpit crew managed to somehow prevent the hijackers executing whatever demonic plans they had, at the cost of their own lives and many others.

It will be extremely difficult to find out who is behind all this as long as all known terrorist organizations remain denying involvement in this massacre. The size of the operation suggests a massive amount of military-like precision planning must have gone into this operation, suggesting a large organization has to have been responsible for this horror. But then again a relatively small splinter group of fanatics, say no larger than 25 individuals, could have planned and executed this, operating fully independently from any of the larger organizations they may have separated themselves from in the conviction that more drastic actions should be taken against the US. It may be very well possible the true culprits will never be found and either go unpunished or all have perished themselves in this action.  On behalf of Olga and myself I want to express my deepest condolences and sympathy to all those who are touched either directly or indirectly by this horrendous act of mass murder. Even though I am not a believer I wish them all the strength their God or anyone can give them in overcoming their pain, indignation and fear caused by the idiots who were responsible for this. My sincere sympathy to all of you.

Respectful regards,

Doc

PS: I currently still lack the physical strength to monitor the newsgroups, so much of your reactions to this post may go unnoticed by me.  For those of you concerned for my own well being I can tell I passed surgery extremely well. Although the surgery was massive and huge parts of my body have been affected, either directly or through damage to several nerves I am now totally free of cancer cells and technically cured of the horrendous disease I have been suffering from. I will need several more weeks to regain any form of strength but I can assure you that I have survived without any major complications. Compared to the horrors that struck thousands of US citizens yesterday my personal inconveniences I still endure now seem trivial in the light of what has happened. At least i have the certainty I will live a normal life from now in relative comfort even though it may still take me the better part of a year to fully recover. That is more than can be said about thousands of Americans. Despite my own situation my thoughts are almost exclusively with them.

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

Date: Wed, 21 Nov 2024 11:19:40 +0100

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

Subject: Update, and not a happy one

Hi folks!

It has been rather quiet from my side since some time. The main reason for that is that I had a pain in the knee that would not allow me to sit on a normal chair for longer than a few minutes without excruciating pains going up and down my leg. The same is happening now, but I endure it to bring you the latest news.  Two or three weeks after I returned home from the hospital after radical surgery of the tumor in my lung, my right knee started hurting. I thought it was an enflamed tendon, grabbing its chance with my immune system at an all time low. Extensive search in that direction however turned out nothing.  I went for an MRI scan of the knee, and a tumor the size of a finger tip showed up in my knee. Samples were taken from both bone and soft tissue above. At first they didn't show anything, but the orthopedist did not trust the results and ordered a new series of tissue samples to be taken from the soft parts just outside the bone.  I had a terrible time on the table, and in the week following the sampling, the past week, the pain grew stronger by the day, driving me crazy. I couldn't walk, except short distances using crutches. I had nowhere to go, couldn't read because of lack of concentration both as a result of the pain and the pain killers. I just sat on the couch, one spot, all day, waiting for Olga to return from work. Then at about 10 PM we would go to bed and either I woke up early in the night or at the normal time. In any case my leg would be completely cramped. I took tranquilizer pills to keep myself sedated and keep me from thinking too much, as well as make me lose track of time so that days didn't last that long.

This morning the word came in from the orthopedist: In the latest samples the same cells were found as were in my lung tumor. In other words: metastasis, albeit discovered in a late stage.  All this happened this morning, so I can't really tell much yet. It's 11:15 AM now. I already spoke to my oncologist, who will see what he can do to get me to radiotherapy ASAP. This will stop further growth of the tumor and hopefully reduce the pain. After that of course there will be surgery, but we'll cross that bridge when we'll get there.  Due to the pain I have I won't be at my computer very often, so reactions will reach me, but I may not read them immediately. Wish me luck and pray for me. That is all that we can do. And let's be grateful this tumor is in a significantly less dangerous spot.

Regards to all of you

Paul / Doc - frightened beyond anything in his life.

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

Date: Sun, 13 Jan 2024 03:36:00 +0100

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

To: coast2coastmusic@yahoo.com

Subject: Attn. John Watts: New model Hering Chromatic

Hi John,

First off, I want to wish you a very happy new year and may it be even  more successful than the last one.  Today I received a paper catalog in the mail from a British harmonica dealer:  http://www.harmonicas-direct.co.uk  In that catalog they reported a new Hering chromatic harmonica: the 9148 Opus. It is definitely *not* the Charlie Musselwhite follow-up, it's a totally different harmonica. I quote:
"The new top of the range Opus has phosphor bronze reeds and nickel coated reed plates. It is hand finished to a high degree and fitted with wind savers. Each hole in the mouthpiece is specially channeled to optimize the air flow, making it highly responsive even when played at low volume. The opus comes in a stylish brown leatherette box."  Retail price UK Pounds 169.00 - no less than US $244.19 I have sought your new web site (beautiful, by the way) and couldn't find it. Any chance you heard of it?  I must remind you that these Brits are ridiculously expensive in their retail prices; generally they charge in UK Pounds what you charge in Dollars, where there is a price difference of 1.44 US Dollars for a pound. So usually their products are about 50 percent more expensive than yours.  As for me, I have a new gang mail in the making. At January 21 and 22 I have talks with my orthopedist and my oncologist respectively and after those two I finish up the communiqué and will send it round to the usual group.

A small unveiling for you only:
I have become much more energetic in the past two weeks, but I pay a very dear price for that. They have discovered a metastasis tumor in my right knee joint, that is about 2" in its longest axis, half of it grown into the bone. That makes the bone as brittle as porcelain and if I fall, if only with part of my full weight on the tumor, the spot where the bearing part of my thigh bone goes over into the knee joint breaks up into a 1,000 pieces, never to heal again. Amputation is the only option then.  Since January 9 I am officially declared invalid, which means I have to live off a pension that is roughly 50 percent of my usual income. No exceptions and thanks to the fact that I can hardly stand, let alone walk on that right leg, there is no way I am going to get out of that, except in my old job as a management consultant. Now that is not much of a point, but I have been out of business for more than two years now. My ready knowledge has been reduced to virtually zero and I did not really keep up with new developments. I have to use the time left to me to revalidate as much as I can and study, but I still am on very heavy duty medication. I only name 300 to 400 mg of Morphine a day. That makes it very hard to concentrate on reading anything longer than an average newspaper article and it's a far cry from being ready to study.  During the surgery I had in August, where the primary tumor has been removed, some nerve damage has occurred. My left vocal cord is paralyzed in the open position. That has ruined my singing and talking voice to a hoarse whisper, leaking air like crazy. End of possibilities for a glottal stop in playing the harmonica.

Thanks to the fact that my leg hurt like crazy and it has taken the gentlemen doctors more than two months to discover it was a metastasis tumor I have been sitting on the couch all the time, unable to move from the pain, with far too much time to think and all that jazz. I can't play the harmonica since my physical condition is virtually zero. If  I walk for 10 minutes (with one of those racks you see used by the elderly people) I am completely exhausted. But my mind is willing so I go out every day if I can. Slowly building up my stamina. If  I do a train song on a diatonic for ten or twenty seconds I have to sit down because the entire world is revolving around me then.  In other words: Things are looking upward. I entered a test program for a new drug; so new it doesn't even have a name yet, just a number. That seems to be working well, hence the energy. But my body keeps on tagging behind. That is why I go to the orthopedist. A tumor in my knee - okay.  But what is the next step? It has been radiated already, so it is damaged goods down there and an artificial knee is almost sure to be rejected by my body. The skin is totally dead from radiation, so it can't be used to seal off the wound from an amputation just above the knee with a flexible prosthesis. Amputation has to take place very high up, where the skin is healthy and that leaves me with not enough leverage to attach a flexible prosthesis, so I get a rigid one. But I don't want to lose the leg, yet removal of the tumor takes away so much bone tissue that reinforcement is necessary no matter what and that - as we heard before - is almost sure to be rejected. See why I want to wait until after the talks with the doctors before concluding my next communiqué?

Happy harpin'

Doc

- featuring Thirsty, the groggy froggy

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

Date: Tue, 15 Jan 2024 11:31:10 +0100

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

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

Subject: Re: Attn. John Watts: New model Hering Chromatic

John Watts wrote:

> Hi Paul,
> We have sold a few of those Hering Opus but I did not try them
> out. Our price was $199.00. Since I've had so much
> trouble with Hering response and supply I've stopped
> offering them. I did get one unexpectedly last week
> and put it up on eBay. Last time I looked it was at
> about $143.00.

I don't understand at all. Hering produces first-grade, top of the list harmonicas, not only in the chromatic, but in *all* lines. Why do they have so much trouble distributing the things? Brazil is a bit out of the way for me, but I would *gladly* pick up worldwide distribution for them; analyze and improve their complete logistical system and make sure there is at least one Hering harmonica in ever harmonica player's house. It is a sad, sad thing to see a superior product like Hering be almost impossible to come by, while harmonicas that in fact are no more than so-so, for instance the Huang series, are available on just about every street corner.

> I'm sorry to hear that you are continuing to have
> health problems, and I wish you all the best. I pray
> for you every week at mass.

Thank you for doing so. Last August - in my euphoria - I thought I bested it, but now I realize this disease is here to stay. That doesn't automatically mean I'll drop dead from my shoes within a couple of months from now, but I will continue to be bothered by it for every day during the remainder of may natural life. I did something a 40 year old should not have to worry about. I made a complete script for what to do immediately after my demise, apart from my last will and testimony. If this disease should have one advantage, it is that you can prepare for the end in exactly the way you want it to be. I do not think you believe in euthanasia, but I for one do not want to spend the last two or three months of my life slowly withering away and praying every day the good Lord is good enough to take my life that day, totally addicted to morphine, methadone and other pain killers to keep life bearable while I see my loved ones suffer for me.

Yet, I do not lose hope. I enrolled on this program for experimental drugs. This Thursday, January 17, we are going to register our marriage and on January 17th Olga and I will officially become husband and wife. I wouldn't do that if I did not trust the future. Two weeks ago, on December 31, 2023 as the evening ended and 2002 drew closer, my confidence grew. I had a lot of trouble in 2001 and as I thought, or rather 'envisioned' 2002 I saw solutions, change, and most of all: Power. Lately I have become so much more energetic, that my body cannot keep up with my mind. I spent three months sitting on the couch, two of them without the slightest idea what was wrong with my knee, but knowing I had had a cancer once. Can you imagine the stress such a thing poses? There you sit, unable to move except against excruciating pain. Moving through the house you do sitting on your butt, slowly moving yourself on your one healthy leg and arms, like riding a sled. Slowly, but purposefully moving where you want to go. The bathroom for instance. Twice I didn't make it. Imagine the embarrassment of me sitting somewhere in the middle of the living room, in a wet spot that keeps getting bigger by the second. Imagine that and then rethink the euthanasia bit.

Sorry John. I am rambling away and you may not be the person to do that to. We have been on excellent terms at all times, but not this close. Maybe that is why it comes so easy for me to tell my story to you. But in the same time I do not want to burden you with my sorrow. Suffering from cancer is more than having a potentially lethal disease. It is a constant strain: where will the next metastasis tumor appear? Will that be a vital spot? Or will some overzealous oncologist start standard treatment, making it forever impossible for a good orthopedist to replace the damaged knee with the tumor with ever improving prosthesis, sure that it immediately will be rejected by the body because the radiation therapy that belongs to the standard treatment changes both skin and bone marrow to such an extent that nothing else is possible but amputating the leg. And normally amputation could have taken place just above the knee, giving me room for a lower leg prosthesis with a knee, thanks to advances in modern medical science virtually undetectable from a natural leg when worn under normal trousers. But thanks again to radiation therapy the very structure of the skin around the knee has died, making the skin totally unsuitable to be used to seal off the amputation wound. And since radiation doesn't stop at the skin the material underneath is also damaged to a point that a skin transplant from anywhere else on my own body is sure to be rejected, complete with severe and painful inflammations.

The only solution left is amputating my right leg so far above the knee that only inches of stump remain from the thigh down. Any prothesis on that misses leverage to support a knee imitation, so I will end up with a rigid prosthesis. That makes me walk weird. Now that is not the problem; people walk weird all the time, but think of the extra wear and tear that puts on my hip, my lower back, my healthy leg and all other body parts I cannot oversee right now?. So I may end up in a wheelchair, just because of two radiation treatments that are supposed to be standard operational procedure.

Dutch legislation is far different from the American way of things. I can sue the hospital for all this, but damages will only be payed as they can be proven. So I get a free wheelchair and free medical treatment, but the immaterial damages are not quantifiable, so they are virtually zero. A couple of tens of thousands is the highest sum ever paid for immaterial damages in this country. So even with my life totally ruined there is no way I can get the several millions granted in American cases like this to spice up what is left of my life, whilst Olga will have even more work taking care of me because I can't even dress myself properly in the morning with a 12 to 15 inch stump where a leg is supposed to be. I can't drive a car anymore, unless I have one fitted with special attributes to compensate for the use of one leg only, the opposite leg one uses when driving a normal automatic; so my mobility is completely gone. I will be dependent on others for the rest of my life, living under the constant fear that the next metastasis tumor will appear in my spinal cord somewhere between my shoulder blades...

But now the good new: Since January 9 I am officially declared invalid since I passed the two year mark of physical inability to work. This means my boss has the right to fire me and he has already announced to fully exercise that right. Give or take a few days for the paperwork to round off, I will be officially out of a job from April 1, 2002. From that day I will be living off a government grant for invalid persons, that is maximized. I worked my butt off the past 12 years to get to the degree of specialization and skill I have now as an Senior ICT Consultant, making about $150,000.00 a year, company car, company computer, company cell phone, expense account, company credit card and you name it. I lose all that. And of course the government grant is maximized to a level: somewhere about $68,000.00 a year.

I know that moving your spending pattern upward to a higher income is easy enough. But moving it downward to suit a lower income is a disaster. I will have to cancel subscriptions, make do with less holidays. Hell, I even have to take care not to take a bunch of flowers home to Olga too often now in order not to endanger the household budget. Okay, okay, I am slightly exaggerating this; that much is clear. But you get the general picture. Imagine there are people faking to be invalid and working on the side to live a very good life. I can't. My physical condition simply does not allow me to, so there is no way I can fill a 70,000 dollar gap between my 2000 income and my 2002 income, except when I completely heal from cancer and when is someone healed from cancer? Only then I can apply for a job like the one I had, because at a salary like that people tend to expect something high-grade in return, and rightfully so I may add. I was good at my job, still am, but thanks to pain medication I cannot concentrate enough to read half a page without having to turn back and see what it was about. Put me on a large project now and you'll end up with a screwup that could very well get the client belly-up. Think of the lawsuit that would bring.   So nobody would hire me now.

The only thing left for me is my music. But the surgery in August, when the primary tumor was so successfully removed caused some minor nerve damage paralyzing my left vocal cord in wide open position, making not only my voice sound from rich bronze to rusty rough cast iron, but also making it impossible for me to incorporate glottal stops in my play. I believe I told you that in my previous Email. Also the nerves controlling my left arm are slightly damaged, leaving the strength in my left hand at about 40 % of what it used to be and severely limiting control over the outer two fingers of my left hand. Being a Lefty it ruined not only my handwriting, but in typing I sometimes *think* I hit a key and don't, or *think* I released it, leaving a whole strand of "a"-s as in the word "baaaaaaaaad" typing. That means I have to proof read everything twice instead of once, limiting production.

Sorry again to burden you with all this, but I desperately needed someone to let it out to. You happened to chance along. Don't bother replying. I can't expect you to fully understand what this all means against the backdrop of uncertainty of cancer and the hope that never fades; another constant battle in my mind. Never give up, always try to see the bright side and go for that. It may sound odd, but that grows on you and it puts calluses on your feelings. Not always at the right places, since people worry when I for instance step into a car and drive, despite pain killers, despite a leg that only partially moves the way I want it to, only to experience the fact that I am not totally dependent of others all the time, even on a half-hour drive. So far - knock on wood - all has gone well. I know of people who sank into alcoholism or narcotic addictions because of this. Been there too and climbed out of that as well, on my own and without help from the outside like self help groups or other counseling. I drank a full bottle of Vodka each day, starting at about 10 AM, and more often than not opening the second bottle before 9 PM the same day. Been there - done that - dropped it. I almost lost Olga to the bottle, because she couldn't stand the sight of a partner being drunk 100 % of the time. I can't blame her, but I am glad she held out. My ability to not only get rid of the alcoholism, but also be able to control it to a point where I can be a normal, social drinker and not have the slightest problem with it - no craving, no cold turkey and not even the wish to take more than two or three drinks and then even have the courage to leave the car and take a cab instead - is what impressed Olga to the point that she gladly said "YES" to my proposal to marry her.

Sorry again for burdening you with my daily sorrow and my mental struggles. The drop in income has made it impossible for me to buy the Hering 9148 Opus or I would have bought it from you at list price immediately. I do want to own it, but before I saved up enough to do so the auction at Ebay will be closed and someone else will be the winner. Thinking of disappointments I think that is the greatest one I have right now. But then I turn my head slightly. Olga and I share our working room and she is not at the office today but working from home and I am a happy man. Very happy.

The best of luck in business, John. The moment I feel up to it, I will write some pieces and edit the ones I have right now on other harmonicas than the "standard" diatonic and chromatics, like double reed harmonicas and playing characteristics and stuff. I have some drafts, some rough cuts and some official texts and I think it will be a welcome addition to your new web site. It will be a way to keep me busy without straining myself too much physically. I did so the past few days and I am paying the price now with a slight backdrop in my complaints; they have become worse. Bad news and I have to keep that in check. I can't go around and force things.

Let's keep this monster mail between us. I don't want to bother more people with it than I already have, so the best we can do is leave it for what it is. I will surely talk to you later, when the first of my articles is ready for publishing.

Regards,

Paul / Doc

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

Date: Mon, 28 Jan 2024 13:17:25 +0100

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

Subject: The latest news - and remember where you heard it first!

Hi gang!

First and foremost I want to extend my very best wishes for the new year to each and every one of you, late as it is already. May the new year bring good fortune and prosperity to all of you, both in business and in private and my you all find satisfaction in playing. My wishes of course extend to all those around you; your families and friends; band members and whomever you consider important enough.

It has been quite a while since I wrote my last Gang Mail and in itself that is a good thing. It means things are quiet and I am healing. It also means nothing spectacular enough to report has happened so far and with a disease like mine that usually means there's no bad news.

As you all heard in my last message a metastasis tumor was found in my knee. It has been bugging me big time, making it impossible for me to walk. I have spent more than two months on the couch, leg propped up, watching TV. My world consisted of that one or two square yards and if I needed to go to the bathroom I had to sit down on the floor, slide over there and hoist myself on the toilet bowl. Something you need to plan in advance. I remember that twice my planning failed. Such things happen early in the morning usually, with a full bladder and cold from being in bed and having to get out, well you know. I didn't make it. The embarrassment is terrible when you are there, sitting in the middle of your living room, watching a dark stain slowly spread from under you.

The doctors were desperate. at discovery of the tumor the pain was so intense I immediately received the standard treatment for that: palliative radiation therapy, meaning a relatively small dosage of radiation is administered, both to stop the tumor from growing any further and to relieve the pain. It didn't work enough, especially on the pain side. I am still on morphine, but I don't dare write down my daily dosage. As I told you the tumor is in my thigh bone, right on the edge where the "bearing" part of the bone becomes the joint. The tumor can be removed, but since it is a stress point, some reinforcement should be added. The simplest thing is an artificial knee. But radiation therapy changes the very structure of your body and the artificial knee is 99% sure to be rejected as a "foreign body". That will probably be done through a major infection, something you don't really want. The alternative is amputation, but for amputation you need skin to cover the amputation wound. The skin around the knee is dead due to radiation and won't work - will be rejected, so they have to go higher up amputating, there where the skin is healthy enough. Even transplanted skin on the affected spot would be rejected, just like artificial materials in my body. So a stump of a few inches would remain; barely enough to fix a prosthesis unto and certainly not enough to act as a lever to make the prosthesis behave more or less naturally. So it will be a fixed one; a real wooden leg. No thank you.

So what happens now is that so long the tumor does not grow or cause any other inconveniences, it will remain there and nothing will be done about it.

Then there is Olga:

The very first time I went up for chemotherapy in December 2000 we met a young guy, my age, who was in about the same stage as I was. Have a 5 minute rest after putting on your socks or you'll be exhausted all day just from getting dressed. We met him again several months later, in the waiting room of the oncology department, just like us waiting for a standard inspection. He looked healthy, energetic and he was carrying a small bottle of pills. He told us he walked the dog twice a day for at least half an hour to an hour and worked part time. A miracle? I still was in the stage of being tired after folding a newspaper. He was asked to partake in a test with a new drug from a French company. Basically the intended results of the drug were the same as chemotherapy, but it went about its business in a totally different way. As a medical layman it is impossible for me to explain the differences, but the results were spectacular. And all you had to do was take one pill in the morning. The drug was so new it didn't even have a name yet; just a code number. Several weeks later there was a TV news show doing a subject on the drug, now being tested in two hospitals in the country. Apparently the results were so spectacular it was worth a newscast. The anchorman closed off the subject however, saying there were enough volunteers for tests and no more were needed. That is when Olga went for the pills and found out about them what she could. She had all the information she needed by the time the metastasis in my knee was considered incurable. My oncologist was with his back to the wall. I was in pain, he couldn't help me, just maim me by amputating a leg - without the security that would be enough - and something needed to be done. In the meantime Olga had found out the manufacturer of the drug, the Dutch representative, a contact.. you name it. In fact she also had their OK to enroll me in the test because I was a special case: the primary tumor already had been removed and only metastasis remained now. They had nobody like that in their test group; all test subjects still were carrying around their primary tumor, that was used to carefully measure the results of the drug. With me they would have to do some guesswork and see how the drug handles metastasis. They claimed it worked on that as well and with no primary tumor to feed new metastasis I was the ideal subject to test that theory. Finally, after long and persistent talking, we got my oncologist to sign the papers and put me in.

The drug is a simple pill and it is claimed to start working two to four weeks after starting the intake. It does. I feel 1,000 times more energetic; so energetic my body can't keep up with my mind in things I want to undertake and I have to restrain myself constantly in order not to overstress things. I have new ideas, I keep my paperwork in order (something that I hated doing and didn't do, resulting in huge stacks with unpaid bills, correspondence and advertising material all in one stack); I cleaned up the mess that was my workspace around the computer and I even do some small DIY stuff, like mounting grips in the shower to be able to keep my balance so that I can take showers without falling all the time. I help out people with computer problems, and have a zillion other ideas to work out. I eat better and more, slowly regaining some weight, but every evening about 7 or 8 PM I am totally exhausted and fall asleep on the couch until 1 AM or so. I can walk considerable distances without my walking stick and do so regularly in order to train the muscles in my leg, and I go out of the house for shopping or anything else at least an hour a day. In fact I already overdid some things already, so I do have to be careful. But it's all in those pills. They actually work! Last week I had my first control visit with the oncologist, but he considered it too early yet to do a new scan to see if there are physical results as well. I have only been using the stuff for 5 weeks or so now, so it is a little too early to say.

Then of course, life isn't all that funny. There's bad news as well. Last year this time of year I was officially declared invalid, but I was still employed. This year that is different. My employer does not expect this to turn profitable for him again, so he officially fired me. With all the paperwork involved I will be unemployed no sooner than April or May 1, but than I am what I feared most: an invalid on the dole. With my skills and expertise I'll probably have found a new employer before the current one is able to fire me, but it still is a bit of a drag.

Then there's another point: several weeks ago I noticed a pain on the very tip of one of the ribs they had to saw off during the major surgery last August. I thought it had something to do with muscle or the bone itself settling around it and neglected the pain. But it kept on, to a point where it kept me awake at night and became a real nuisance. So I went back to the surgeon that operated me and he found some tissue that doesn't belong there. Instead of spending months searching for possible causes outside cancer (you don't WANT to believe it is yet another metastasis) I had samples taken immediately and this morning I will be hearing the results. Right now I will be saving this message and as soon as I get back from the hospital I will add the results and their possible consequences. Real news, actual news guys!

The news was exactly as I expected: primary metastasis. I was planning on having the tumor removed at once, but it could be several weeks (in pain) before an OR is available for this kind of low priority surgery. So they will do radiotherapy first, mainly to relieve the pain and to stop the tumor from growing any further and within six weeks or so we'll look further. Next Wednesday, January 30, I will be at the radiotherapy department and the circus will be rolling again. Let's hope the results of this radiation are better than the ones I had with my knee, because they did not work at all.

Well, that is all the news folks: another metastasis discovered and it is being taken care of straight away. I am not afraid or even anxious, I place my full trust in the radiotherapist and his team to get me through this. In the end we *will* have this tumor removed but first I've got to come down off those idiotic dosages of morphine. If that works for me, I'm fine for the time being.

Don't worry about me lads and lasses; I am in good hands. I feel strong and I feel capable of coping with this one too. Let's just hope it works.

From here I greet you all and thank you for the sympathy you have shown me so far and thank you (in advance) for your sympathy you are about to show me over this. Metastasis. It's a drag when they find it; it hurts; and they shouldn't find too many of them in too short a time. If I stay off the hook for another six months to a year or if no more are found at all I would fee l very happy. But please, not one every three months that isn't treatable like the one in my knee.

For now: I wish you a good week. Maybe I will be able to go to bed and get some extra sleep this afternoon. Wish me luck on that, because I'm exhausted from loss of sleep due to the pain. That pain has subsided a bit now, so maybe, just maybe I can find a couple of hours of rest.

Catch you guys later all!

Happy harpin'

Paul / Doc

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

From: "Vonnee" <syde@optusnet.com.au>

Subject: Cheer up Doc (aka Paul)

Date: Wed, 17 Apr 2024 21:31:21 +1000

Hi to all Paul/Doc's Friends,

Some of you may remember me, I am Paul's cousin in Australia. I guess like me, you have been awaiting some news from him.

It appears that Cuz (Doc/Paul) is in a lot more pain from his knee and with the amount of pain relief he needs, he is unable to access his computer, so all our messages are floating in cyber space and we are left out in the dark.

What I am emailing to ask is, if you have the time can you snail mail (you know the one that gets through no matter what - the old fashion way with paper and pen) something that with help cheer up Cuz. A joke, a funny tale, even stuff about life in general or one of those silly cards but the more warped the better I would think, and lets keep up his spirits and help support his theme for his battle "Always look on the bright side of life".

Its easy to be a friend in good times, but its the bad times when you learn who you can count on. I am sure Cuz, can count on all of you.

I wish you all well
Please take care

Vonnee

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

From: "Vonnee" <vonnee@optusnet.com.au>

Subject: News of Doc

Date: Mon, 27 May 2024 22:05:05 +1000

Hi to all of Paul's friends,

I had the honour to meet Paul about 10 days ago as I flew to The Netherlands to see him. It was a short visit but one that made a life time of memories for me.

Not sure its my place to do this or if I am pre-empting something that Cuz had organized. But I would like to share the news I receive soon after my return.

It's with a very heavy heart I tell you...

Paul lost his battle on Wednesday 22nd May at 5pm (Amsterdam time), at home with Olga at his side.

Vonnee