Czech Please! (Dobrodružství terminálně optimistického života)

When I first started this blog, I made a very conscious decision: I wanted to “be that Google Hit” found when someone first diagnosed with CRC is scrambling to search for information in the middle of the panic of recent diagnosis.  Patients panicking while looking at survival stats, in need of HOPE.  Following the extremely good role models of the two blogs that performed that role for me during my own diagnosis panic (“life and breath: outliving lung cancer for the terminally optimistic” and “Adventures in Spiritual Living“), I also wanted to write in such a way to present a realistic portrayal of Stage IV cancer.  Its chemo vomiting (previous infusion scorecard Tom 0, Vomiting 12)… its ER trips… its death, etc..  But at the same time showing that even in that horrible mix – Stage IV patients are living ordinary (and extraordinary!!) joyous lives!

2016-05_Colon Club at Joes Wedding

As a pictorial example of the advances already made in CRC and extraordinary Stage IV LIVING, posted above is a picture from a Wedding I was Best Man in last weekend.  Everyone in the picture is from the incredible Colon Club.  A fellow 2016-Colondar survivor and close friend Lauren is next to me, then the all-around in every way amazing Krista (the President of the Colon Club) and finally yet another fellow 2016-Colondar survivor Joe, the big man of the hour, the groom!  Looking at the picture, try to pick out which of the 3 out of the four people are Stage IV cancer survivors?  Big hint: they’re Me, Lauren and Joe!  It’s hard to figure that out from a picture now days – I can’t remember how far out they are each from their diagnoses but I am about to hit 4-years, and 4-years post-diagnosis I was doing wedding toasts and getting busy on the dance floor!  Even without bringing in science – that there is HOPE to a newly diagnosed and that is why I love the Colon Club so much!

But I am not just a patient & advocate, I am a scientist.  And some people are living longer and longer through scientific advances that may not be household names of information!  Information that is known to the scientific community but which has not been effectively communicated to the real target audience: the patient community! A major goal of mine has been to change that. We are about to enter ASCO season so fasten your seat belts for some pending science posts….

All of this writer juggling I try to do of advocate, patient and scientist viewpoints is not easy to do but the response I have received has been incredible.  I receive at least one Thank You note each & every day.

Sometimes a particular thank you note received really sticks out.

fighting-woman-over-czech-flag-12532738

Although the above is a stock photo, it represents Michaela from the Czech Republic

Michaela wrote me a note that tugged at my heart-strings.  There is a special place in my heart when I receive notes from small countries.  Michaela is a MD and her mother is a MD with CRC.  Michaela is also a fighter on behalf of Czech CRC patients!  She cold-messaged me out of the blue.  Here are excerpts of her message to me:

I have found your blog when searching some information on immunotherapy/vaccines for CRC as my mother (who is 61 and a physician as well as me) was very unexpectedly diagnosed with metastatic colorectal cancer…. I have read many of your posts and it has been a roller-coaster reading with crying and smiling. Your blog is wonderful and it provides a lot of (scientific and other) hope and comfort to someone who is trying to navigate in the crazy internet world… Unfortunately, there is no comparable source of well-founded scientifically data, personal experience and links to other sources available in Czech republic respectively in Czech language. 

Michaela then went on to offer to translate my entire blog into Czech…  and then also help to promote it!

But she then made an interesting comment which really drives home my views on advocacy…

Michaela went on to mention that she was also fluent in German and that she would be happy to instead make a German translation, since Germany is a much higher population country & many more people speak its language than Czech.

I immediately asked her a simple question: which country did she feel was more in need?

She answered: the Czech Republic. Germany has more patient education resources available. In contrast, the Czech Republic does not have patient resources or information available similar to your blog. Czech patients were desperately in need of both information and Hope.

My response: the next translated site for my blog then needs to be Czech ASAP! I am not interested in number of readers (that seems to be taking care of itself) – I am interested in having my blog and its messages of Hope and scientific information be readable in the local languages where it is needed most.

So I am thrilled to announce that the Czech version of this blog is now LIVE (just some minor tweaking remaining)!: “Dobrodružství terminálně optimistického života”   https://adventuresinlivingterminallyoptimistic-czech.com/

Following my tradition – due to the high stakes involved (potentially life-saving): the first blog to be translated is about PD-(L)1 inhibitor immunotherapies for MSI-high CRC.  https://adventuresinlivingterminallyoptimistic-czech.com/2016/05/17/tvare-uspesne-imunoterapie-kolorektalniho-karcinomu-vol-1/

So… the Czech Republic may not be the largest country in the world.  But… it has high need.  One thing I have learned is to first focus on the need, and once need is addressed, popularity will arrive as icing on the cake.

So to all my Czech readers – welcome to the Family! To Life!

-Tom

PS: BTW – in contrast to the last infusion’s scorecard mentioned above – the scorecard on today’s FOLFIRI infusion (following that “living life to the fullest” Colon Club weekend in Chicago)?: Tom 1 and Vomiting zero! Probably a coincidence but for fun… I’ll say not. 🙂

 

7 Comments on “Czech Please! (Dobrodružství terminálně optimistického života)

  1. Congratulations Tom! This is such wonderful news to read for those in Czech craving HOPE. I know when we first started searching online 3 years ago I couldn’t find any HOPE. It was devastating. Since I’m a persistent advocate for my husband, I never gave up searching, researching and asking tons of questions to his Oncologist. I still do that today. Because of your blog, we just learned that he is MSS. He doesn’t have wild kras. I guess you could say he’s “Normal” except he has Stage IV CRC. As I mentioned in my last message to you, his CEA is climbing (because of growth) so now we’re off to Seattle Cancer Care Alliance for hopefully a different treatment program with a possibility of clinical trial participation. It’s our HOPE that these folks will finally slow down this growth for many more years to come. I made the Staff laugh already when I made his appointment this week by asking them if they couldn’t just vacuum his “spots” out since they look like dust bunnies on the scan. If only it were that easy! We must cling to HOPE and trust that we are being lead down this road for a reason. There is something higher than all of us leading the way. We’ll get through this next fork in the road with flying colors!

    Jim wanted me to let you know that since he has been a “peddler” all of his life -we own a safety equipment company and he’s our salesman – that he’ll translate your blog for the peddlers in the world. I’m not sure if that includes some BS along the way but….

    Enjoy the ride!

    Liked by 1 person

  2. Amazing! This is wonderful news!!! You have some dedicated and generous readers, Doc. 🙂

    Like

  3. thank you so much for sharing this. it has given me hope. i am way too young to be giving up like this – but alas i am looking at a recurrence for my stage iv breast cancer and after a year of treatments felt this was the universe telling me it’s ok i’ve done enough. i’m not sure now and will continue to remain optimistic.

    Like

    • Hi Christa, Thank you for the note. Looking at the current speed of cancer research and the wide variability in patient outcomes with the same diagnosis, I see no reason not to feel optimistic for future possibilities. I also encourage you to check out the Miracle Survivors book in the “Fav. Books” tab at the top of the page. These are real people – I’ve talked to more than one of them personally – not unverified web anecdotes. I certainly can’t tell you what the Universe has planned for either you or me but I can tell you I think having optimism gives a more enjoyable ride along the way… I wish you all the best – take care, Tom

      Like

  4. Pingback: ASCO 2016 Preview: Checkpoint Immunotherapy Activity in MSS Colorectal Cancer | AdventuresInLivingTerminallyOptimistic

  5. Pingback: Zákulisí ASCO 2016: účinek inhibitorů kontrolních uzlů imunity u pacientů s MSS-kolorektálním karcinomem | Dobrodružství_terminálně_optimistického_života

  6. Pingback: True Faith (FAVORITE POSTS OF 2016) | AdventuresInLivingTerminallyOptimistic

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Avonturen_in_het_ongeneeslijk_optimistisch_leven

Scroll naar beneden langs de grote bomen:-)

My Cancered Life

Relentlessly Attacking Cancer Through Fitness, Family, Advocacy, and Laughter

Dobrodružství_terminálně_optimistického_života

Přejděte dolů kolem velkých stromů :-)

Aventuras_Viviendo_Terminalmente_y_Optimistamente

Más allá de los grandes árboles :-)

乐观地和绝症一起进行人生冒险

向下拖动滚动条看看大树底下 :-)

Приключения_безнадежного_оптимиста

Пролистайте вниз мимо больших деревьев :-)

Cancer Riot

Scroll Down Past the Big Trees :-)

SugarCone Biotech

Research and Development - Analysis, Consulting, Investment

Fightin 4 Blue.org

Colorectal Cancer Awareness

Tami Boehmer | Miracle Survivors

Just another WordPress.com site

Adventures in Spiritual Living

Riding the spiritual waves of everyday life

life and breath: outliving lung cancer

for the terminally optimistic

%d bloggers like this: