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!
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.
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!
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. 🙂