It’s often been said that if you wish hard enough, wishes will come true. I wished for a long time that I would have to travel so much again from home to hospital to a different hospital. It eats away the energy that I need for different things. Things I like. Thank God that the winter is crawling back under the rock it came from and that spring is kicking in the door. I’ve been prepping my veggie garden and already planted the garlic (you never know if a vampire decides to show up) and in a few weeks the peppers, paprikas, cucumbers, radishes, carrots etc will be seeded.

So what about the cancer front, am I doing nothing? Of course not. I still have this very annoying bag strapped to my belly. If my body holds up and if I have the strength, the doctors will finally reconnect my guts so that I can go take a dump just like a normal person. I really hate having to take this bloody stoma into account with whatever I plan. Can’t go anywhere if there is no toilet available.

The work for the historical society is keeping me busy as well. Next year marks the 75 anniversary of the liberation of fortress Europe and the long anticipated defeat of Nazi Germany, and we will celebrate it with an expo, and my job will probably be a living, breathing information portal. We’ll see how that goes, if I’m not pushing up daisies by that time.

Take care,




IMG-20190203-WA0001So, this is the first new blog of my old blog. Are you still with me? Good. First a few household messages: 1, I’ve stopped any kind of treatment and I feel “good”. Of course I still have bad moments, on the contrary, I often feel really Ill, but not nearly as much as I did when I was in treatment. The constant hospital visits, split into two hospitals, one near my hometown, one way up in the north. It was getting too much!. Also the long term stays, all because of that experimental treatment…I simply had enough of it. Was it wise? Probably not, but ill or not, I have a life and I want to live it.

Yesterday I had the pleasure of meeting up with my friend Maia and her friend Grace. They are stating their European trip (both being US Citizens). I love it that Mia always plans in a bit of time for me. She is possibly the sweetest girl I know, not many would cramb you in a very tight schedule and giving you the possibility for making a new friend, Grace. Usually I worry when Mia travels alone, but now that she is traveling with her old time friend, Grace I’m feeling much more at ease. Mia gave me a self knitted hat and it’s by far one of the best things I ever got. Very authentic. Mom wanted to alter it a bit, so it doesn’t fall apart. I gave her permission as long If she kept the hole in it that was a bit of a woopsy. Like I said, it’s authentic, it’s handwork and above all, it was made with love and I absolutely love it. I gave Mia a Dutch version of Harry Potter and the philosopher’s stone and Grace a Dutch version of maze runner. This was a bit of a gamble, but it payed out, Grace loved it.

When they got on their way I made my way back home. It was a short visit, but in those 90 I saw one of my all time best friend’s and made a new one in that process.

All in all this Sunday was a good one. This week I’m up for a hospital visit, spinal puncture. Also soon a CT scan coming up (they want to monitor Bobby and Rufus, my to largest tumours) and I want a reconstruction of my inner plumbing, meaning the removal of my stoma. Keeping you in a loop.

Greetings, Wilco!

Lynch syndrom

Here a new blog and i will explain about Lynch syndrome and what it means for me.

Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). People with Lynch syndrome may occasionally have noncancerous (benign) growths (polyps) in the colon, called colon polyps. In individuals with this disorder, colon polyps occur earlier but not in greater numbers than they do in the general population.

Variations in the MLH1, MSH2, MSH6, PMS2, or EPCAM gene increase the risk of developing Lynch syndrome.

The MLH1, MSH2, MSH6, and PMS2 genes are involved in the repair of mistakes that occur when DNA is copied in preparation for cell division (a process called DNA replication). Mutations in any of these genes prevent the proper repair of DNA replication mistakes. As the abnormal cells continue to divide, the accumulated mistakes can lead to uncontrolled cell growth and possibly cancer.

Mutations in the EPCAM gene also lead to impaired DNA repair, although the gene is not itself involved in this process. The EPCAM gene lies next to the MSH2 gene on chromosome 2; certainEPCAM gene mutations cause the MSH2 gene to be turned off (inactivated), interrupting DNA repair and leading to accumulated DNA mistakes.

Lynch syndrome cancer risk is inherited in an autosomal dominant pattern, which means one inherited copy of the altered gene in each cell is sufficient to increase cancer risk. It is important to note that people inherit an increased risk of cancer, not the disease itself. Not all people who inherit mutations in these genes will develop cancer.


Source https://ghr.nlm.nih.gov/condition/lynch-syndrome

Drop me a line if you have any questions.