Johan's blog

In memory of Johan

My brother Johan C. Lont, born August 30, 1959, died at the age of 51, September 6th, 2010.

During his illness he shared many of his experiences through twitter and his blogs.

This weblog contains notes and tweets from the Summer of 2009, when he was diagnosed with cancer, untill early 2010, as published by him at Vox.com.

Just a few days before he died, with little strength left, he forwarded me an email from Vox which announced that they would end their services soon. Johan wanted to keep his memories online, at least for some time. So on his behalf I transferred this weblog to typepad.com.

Johan appreciated the online community, and his family likes to thank those who stood by him in this difficult year.

Ytzen Lont
(one of Johan's brothers)

More tweets - Jan., 2010

thatangiegirl:
It is going to be a great week! What are you looking forward to the most about this week? #fb
3:29 PM Jan 11th

jclont:
@thatangiegirl What I am looking forward to (and dread) most for this week, is my appt. with my oncologist, Friday. Hoping to learn more.
6:06 AM Jan 12th

**** ****
Because I currently do not notice/feel any effects at all from the cancer, chemo isn't useful at this time, doctor said.
10:38 PM Jan 15th

The doctor will monitor my condition with blood tests and X-rays. She'll see me again in six weeks.
10:37 PM Jan 15th

To summarize: the dark clouds haven't disappeared, but at least it isn't raining today.
10:36 PM Jan 15th

http://twitter.com/jclont

Is this good news or bad news?

After my lung operation in November, my doctor recommended they'd first remove the primary tumor by amputating my leg and apply chemo therapy later to tackle any secondary tumors.

After the amputation, in December, the doctors told me the chemo could not start immediately. They explained that chemo specifically targets dividing cells. This not only kills cancer cells, but also stops any operation wound from healing. So, the wound from the amputation had to be cured completely before a chemo therapy could be started. We had to wait for at least four or five weeks.

Three weeks after the amputation, on January 15th, I had an appointment with the medical oncologist. She told me they would not start chemo therapy. In the first place, they could hardly predict the effect of the therapy, because I had a very rare type of tumor. In the second place, one of the typical goals of chemo therapy is to reduce the suffering of the patient and I didn't suffer at all. I could not even feel anything from the suspicious spots in my lungs. So, in conclusion, positive effects were uncertain, while there were definitely considerable side-effects. These drugs against cancer can do serious damage. Some are even carcinogenic!

Instead, they would check me regularly with X-rays and blood tests. If any symptom would appear, they would reconsider the best approach based on all available information. Then, the doctor advised me not to delve too much into information about chemo therapy, but to focus on the things that are meaningful to me, such as work or hobbies.

I found this a confusing message. I told my siblings the story, and they were equally confused. Is this bad news are good news? Did the doctor just tell you to give up all hope of a cure, or just the opposite -- that there was no reason to fear the disease. After a day of contemplation, I decided to take it as good news, and to focus on the rehabilitation process and learning to walk again.

Paris in tweets - August 10-14, 2009

Packing can be stressful if you're scared to forget something important. Luckily, I printed a (long) list of things to pack.
9:21 AM Aug 10th, 2009

What if I forgot to add something important to the list *stresses again*
9:22 AM Aug 10th, 2009

I arrived at Barneveld Noord railway station with my suitcase. - http://mobypicture.com/?ldxv5a
12:00 PM Aug 10th, 2009

I just passed by Feyenoord soccer stadium. For a high speed train, we're not going very fast yet.
1:35 PM Aug 10th, 2009

I have arrived at my hotel :) No working WiFi though :( - http://mobypicture.com/?w63r9z
6:21 PM Aug 10th, 2009

Typical. I left my tourist guide in the train! Probably was too engaged in conversation with the lady next to me.
6:41 PM Aug 10th, 2009

Maybe I can find another touristic guide in a book store somewhere
6:42 PM Aug 10th, 2009

CORRECTION: I found the booklet deep in the wrong pocket of my bag. Now I should try to get something to eat.
7:00 PM Aug 10th, 2009

Hotel fire instruction: If the corridor and (open) stair well or full of smoke or flames, go to your window and wait for the fire brigade.
7:25 PM Aug 10th, 2009

I remembered just in time that in Turkish coffee, they leave the coffee sludge (how do you call that?) in the cup. Wait after stirring!
8:10 PM Aug 10th, 2009

Now I'm in Paris I'm of course having dinner in a real, er, sort of Turkish restaurant.
8:12 PM Aug 10th, 2009

Murphy's law: if you're having a nice conversation in the train, it's a High Speed train that brings you to the end station before you know.
3:44 AM Aug 11th, 2009

...but in every train you get much faster at your end station if you're with good company. I experienced that many times.
3:49 AM Aug 11th, 2009

Instead of investing in costly high speed trains, the railways would better invest in good company. Same effect.
3:51 AM Aug 11th, 2009

When I reserved a room and they asked me what floor I preferred, I somehow assumed the building had an elevator. Wrong.
10:29 AM Aug 11th, 2009

Lady in electric wheelchair keeps a referee whistle (flute?) in her mouth, whistling herself a passage through the sidewalk.
11:27 AM Aug 11th, 2009

On the OpenTour on the Rue Auber going towards Opéra. - http://mobypicture.com/?7z6xoj
2:58 PM Aug 11th, 2009

At bar brasserie Paris Orsay (14, rue de Bellechasse, 75007 Paris) - http://mobypicture.com/?scb8c1
5:01 PM Aug 11th, 2009

Àl'éise Saint-Julien le Pauvre, Herbert du Plessis joue Chopin, Liszt (it's intermission now) - http://mobypicture.com/?az8jhl
9:22 PM Aug 11th, 2009

Somehow, this picture link failed to post earlier today: http://i.mobypicture.com/user/jclont/view/419413
11:19 PM Aug 11th, 2009

Musée d'Orsay is great. Some of these paintings have their own Wikipedia pages.
10:27 AM Aug 12th, 2009

Renoir - Bal du moulin de la galette http://bit.ly/Fo8eP - http://mobypicture.com/?ji440l
10:43 AM Aug 12th, 2009

I planned to try again this evening if the waiting lines for the Eiffel tower have shortened, but at 8pm, I felt too exhausted to even try.
9:03 PM Aug 12th, 2009

Since my limping got worse lately, I use a walking stick more often. That caused a museum official to take me to the front of the line. :)
10:11 PM Aug 12th, 2009

... To my surprise, I even got a free ticket. Apparently, I'm a disabled person and may enter French museums for free.
10:17 PM Aug 12th, 2009

Harp player near Sacré-Coeur - http://mobypicture.com/?hlqlrc
11:38 AM Aug 13th, 2009

A one feet tall street musician in Paris - http://mobypicture.com/?ytvkrr
12:08 PM Aug 13th, 2009

I own a book with French chansons. I liked to sing 'Pigalle,' about the colorful people at Place Pigalle. That's where I am now!
1:26 PM Aug 13th, 2009

I went for a coffee to relax in a place with lounge chairs (at Pigalle). But then they put on that very nervous music :(
1:27 PM Aug 13th, 2009

I gave myself permission to skip both museums that were still on my list. Better enjoy my public transport day pass and see the city :)
1:29 PM Aug 13th, 2009

I think I'll stay here a while. The garden at Place des Abbesses. - http://mobypicture.com/?gj1pg2
2:29 PM Aug 13th, 2009

Behind me is this art work. Blue ceramic tiles with "I love you" in countless many languages. - http://mobypicture.com/?6p1hch
2:31 PM Aug 13th, 2009

Detail - http://mobypicture.com/?7hgoa8
2:32 PM Aug 13th, 2009

Detail (2) - http://mobypicture.com/?5njczj
2:34 PM Aug 13th, 2009

I filmed the entire Montmatrobus line from inside the bus. Now, my SD-cards are full.
3:36 PM Aug 13th, 2009

Next, I'll take the 85 for fun. It passes through mostly one-way streets. Then, métro to Centre Georges Pompidou.
3:37 PM Aug 13th, 2009

Panorama from the top of the Centre Pompidou (level 5) - sorry for the low picture quality - http://mobypicture.com/?3ixeo9
5:48 PM Aug 13th, 2009

The train has left the station. (with me in it - I should add)
8:35 AM Aug 14th, 2009

Thirty meters outside the hotel, I noticed I left my walking stick in the hotel. Apparently, I don't need it so badly.
8:37 AM Aug 14th, 2009

Draw a rectangular grid, then one more with different widths at a random angle from the first. That's what Paris' street plan looks like.
10:31 AM Aug 14th, 2009

http://twitter.com/jclont

Attitude

Ever since I first heard I might have a cancerous tumor -- that was in July 2009, -- I've always said "it's no use to start fretting over bad things that might happen in the future." In my own language: "Het heeft geen zin om te gaan tobben." Of course I knew it was serious: I cannot even exclude the possibility that I will eventually die from this. But lying awake all night worrying about it won't help. There will be plenty of time to worry in the future if need be. Let's focus on what I can do and not forget to enjoy whatever I find to enjoy.

I was well aware that 'not worry' is not always an option. Just like if someone is scared of spiders, you can say to stop being afraid, but it isn't that simple. If you're scared, you're scared and if worried, you're worried. I think I have been lucky. Most of the time, I was able to put it out of my head. Only occasionally, when I was waiting in a doctor's room, the what-ifs crept up on me.

Meanwhile, I had a great trip to Paris in August and I could continue to go to my work until well into November 2009. I felt grateful for both.

Old tweets - Aug. 8, 2009

I think she's after my blood.
4:33 AM Aug 8th, 2009

I hope she will come to her senses. I can't vouch for myself. This may end in bloodshed -- one way or the other...
4:36 AM Aug 8th, 2009

I yelled to this mosquito to go away, but she keeps coming back.
4:32 AM Aug 8th, 2009

I killed two in one blow. It would be awesome if it weren't so sad.
5:21 AM Aug 8th, 2009

I got my mosquito net and put it in place. I had not done that earlier, because I had not seen many mosquitos yet this year. Until tonight.
5:40 AM Aug 8th, 2009

I think she's after my blood.
4:33 AM Aug 8th, 2009

I hope she will come to her senses. I can't vouch for myself. This may end in bloodshed -- one way or the other...
4:36 AM Aug 8th, 2009

I yelled to this mosquito to go away, but she keeps coming back.
4:32 AM Aug 8th, 2009

I killed two in one blow. It would be awesome if it weren't so sad.
5:21 AM Aug 8th, 2009

I got my mosquito net and put it in place. I had not done that earlier, because I had not seen many mosquitos yet this year. Until tonight.
5:40 AM Aug 8th, 2009

A week in tweets 2009, Dec. 20-26

If I want to do something with my right foot, I have three days left to do it.
11:39 PM Dec 20th, 2009

Start a career in professional soccer? Become a folk dance instructor? What else could I try?
11:41 PM Dec 20th, 2009

Kick someone's butt (as if I would)? Put it in my mouth (you think I should)? Run the gauntlet (not sure I could)?
11:51 PM Dec 20th, 2009

This is something that I really would like to do: http://youtube.com/watch?v=MNi5MIXsEsA (but even when I was young I probable couldn't)
12:36 AM Dec 21th, 2009

@lochness You just prescribed someone a Lady Gaga vid? Maybe I should choose you as my doctor? I'd prefer you over House MD.
7:02 PM Dec 22st, 2009

It is allowed to use a cell phone here! I can keep contact with y'all via the internet.
1:05 PM Dec 22nd, 2009

The nurse said I should expect a stay of six days after the operation. More or less. If no complications arise.
1:10 PM Dec 22nd, 2009

They posted a sheet of paper on the wall here that reads: "You are in the Radboud hospital in Nijmegen." Now that is communication strategy!
1:13 PM Dec 22nd, 2009

The anestetic subsided. I can wiggle my toes again - all five of them. It is good now. Operation went well.
5:42 PM Dec 23rd, 2009

I know many of you had me in your thoughts. Thanks.
5:42 PM Dec 23rd, 2009

I have a button here. If I press it a young, cheerful person comes asking me what I desire. I think I will steal it at smuggle it to my home
5:52 PM Dec 24th, 2009

@forgivemeology I'm relatively ok, consideringmy leg was amputated last Wednesday. They already removed all the tubes and wires I had on me.
8:10 AM Dec 26th, 2009

I woke up at 3am wanting to scratch an itch on my lower leg, but that leg had gone. Pain is under control though.
8:15 AM Dec 26th, 2009

I took a shower this morning. I didn't even know I could do that with a bandaged stump, but these nurses have a solution for everything.
10:25 AM Dec 26th, 2009

My amputatiom and illness made me realise more that it's important to focus on the future and not on the past.
10:33 AM Dec 26th, 2009

While I washed myself under the shower, a feeling creeped on me that I had forgotten some bits. Then it hit me. Of course, I miss some bits.
10:35 AM Dec 26th, 2009

The doctor 4 weeks ago: "This may sound strange, but amputations are actually pretty simple procedures; we call it wartime surgery."
11:50 AM Dec 26th, 2009

The dinner I'm about to eat on this 2nd day of Christmas.s - http://moby.to/2z0ypj
5:31 PM Dec 26th, 2009

Going by the expression "that costed me an arm and a leg," I got that dinner at half that price.
5:35 PM Dec 26th, 2009

I'm honestly trying to make morbid jokes only very sparingly, but I couldn't resist sharing that one.
5:37 PM Dec 26th, 2009

@Crystalsmom Normally dinner here is good but simple, but with the holidays they make something extra special.
5:55 PM Dec 26th, 2009

http://twitter.com/jclont

A week in tweets, Nov. 29 - Dec 5, 2009

I'm staying at my brother's. My sister & her husband brought mom over. Other brother picked her up later. Good to see'm all.
12:30 PM Nov 28th, 2009

Next week we'll be celebrating my mother's 84th birthday.
12:31 PM Nov 28th, 2009

My boss visited me yesterday and brought a basket with delicious fruit. I told my brother @ytzen he can have 3 grapes (He asked nicely)
12:18 PM Dec 1st, 2009

My health is currently in the care of no less than TWO medical professors. That's a good thing, isn't it?
12:24 PM Dec 1st, 2009

http://twitter.com/jclont

A week in tweets, Nov. 22-28, 2009

Dear followers, I'm back again in the land of internet. I missed you a lot at first, but got used to it after a few days.
8:18 AM Nov 25th, 2009

I spent a week in a hospital room where cell phone use was not allowed because it could interfere with the telemetric heart monitors.
8:20 AM Nov 25th, 2009

All doctors and nurses were nice and friendly (I won't reveal which were my favorite)
8:23 AM Nov 25th, 2009

The operation went very well, but now my prospects are: amputation of 3/4 of a leg and chemo therapy.
8:26 AM Nov 25th, 2009

Looks like I'm going to see many more of those cute nurses in the coming period.
8:30 AM Nov 25th, 2009

I read through about 700 of the tweets I missed in the last 7 days.
1:18 PM Nov 26th, 2009

http://twitter.com/jclont

A week in tweets, Nov. 15-21, 2009

I'll probably will not be much on Twitter the coming days or not at all. No internet connection for a while.
12:32 PM Nov 17th, 2009

http://twitter.com/jclont