13 minute read
Against All Odds with Herman Otten
from Rarity Life Issue 01
by Rarity Life
^ Photographs featured are courtesy of Herman Otten
When faced by adversity some of us try our best to carry on, some hide under the duvet and wait for a better day and some, like Herman Otten, are driven to be at the heart of change. Despite experiencing many personal challenges Herman is a Patient Advocate at Inspire2Live and a parliamentary lobbyist in the Netherlands. He has made remarkable strides in pushing for the best cancer care and cancer diagnosis across the Netherlands, making it fair and accessible to all. He has been involved in many initiatives with Inspire2Live, all aimed at making the lives of cancer patients better, providing advice, compassion and understanding.
Talking to us here at Rarity Life he explained, “My experience with cancer started a really long time ago. It started with my dad getting bladder cancer 35 years ago and then sadly dying of complications during surgery. In 2012, I was also diagnosed with bladder cancer. I was treated with BCG. That’s bovine tuberculosis. My dad, before I was born, almost died of tuberculosis. He barely survived. So it’s ironic that he died of bladder cancer while surviving TBC and I managed to survive bladder cancer due to it. It piqued my interest and I wanted to know everything about cancer. It’s not my field of interest and never was but suddenly, it became my way of life. From there it was a small step to getting more active as a patient advocate, and I started by fundraising for cancer research. The people who organised the fundraising then started up an organisation called Inspire2live which I also joined.”
During Herman’s cancer diagnosis and journey, he was compelled to understand more and to improve things for other cancer patients. It was a progressive path that is aiming to create equity in diagnosis across the Netherlands. Herman told us, “Since I had lost my job and my house after the diagnosis, all I had left was the ability to be, at least, a little bit useful for others. By doing so, at the same time I learned a lot from others and saw a lot of things going wrong in their process from diagnosis to treatment and aftercare. That’s why I joined Inspire2Live to address those wrongs. It has been a natural progression, I have always followed, and been interested, in the politics at The Hague and Brussels. In my daily work, I used to work for organisations of social partners and before that, I was the secretary-general of the student union in the Netherlands. So I had a lot of contact with members of parliament. I had a good network to use.And since I didn’t have a paid job anymore, I would might as well try and change things as a lobbyist, make things a little bit better, for other cancer patients.”
As Herman stated;
Herman speaking at Inspire2Live
"We want every patient to get the best treatments based on the best possible diagnostics. In the Netherlands, we have a system, you go to the G.P for a checkup or with some kind of health problem, based on his diagnosis, he might refer you to the hospital nearby. That’s usually a general hospital not specialising in any form of cancer. A file is then opened and a budget is set. The budget is for diagnosis and treatment together. The more that is spent on Diagnostics the less that remains for treatment. After diagnostics, if they outsource part of it, they have less money to spend themselves. So there’s a stimulus on doing as much as possible yourself as a hospital. Even if you are not well equipped or specialised in a certain ailment. That’s of course not in the interest of the patient. You end up with what we call postal code diagnostics and that leads to postal code care, meaning that surviving cancer with a good quality of life depends on where you live. And that shouldn’t be the case. So how do we get from there to a situation where everybody has the same chance of surviving cancer with a good quality of life?”
Herman started talking with a Member of Parliament, who was also a cancer patient. They both knew that cancer treatment and diagnosis needed to be fairer and patients sometimes aren’t afforded the luxury of time to wait for the endless tests. The payment of the tests versus treatment also needed addressing. Together with the Hartwig Medical Foundation, that member of Parliament and Herman together wrote up an initiative paper to be submited to Parliament. The initiative passed unanimously in the Dutch Parliament, a huge achievement and giant step forward in cancer care provided in The Netherlands, giving faster access to reimbursed Whole Genome Sequencing to a broader range of cancerpatients.
Herman still feels passionately about cancer care and equality for all. He blogs regularly and will always take the time to support other cancer patients wherever he can. He wants to make the lives of others, better. He believes arming patients with knowledge is an important part of any cancer patients journey, providing them with the opportunity to make their own informed decisions based on a variety of knowledge gained in the cancer field from research, personal experience, oncologists, specialists, scientists, cancer patients and cancer survivors.
“The most important thing right now isn’t political awareness anymore but awareness amongst patients. Patients now have got choices and need to know that you can ask for something else. There are other options available, and being aware of these makes a huge difference. What you will get offered automatically isn’t always the best, especially when decisions being made are budget-driven. You have to be very careful as a patient and you have to be able to say, Okay, listen, I understand that you want to start with with treatment conform protocol. However I would first like to get more information based on whole genome sequencing and I would like to be further diagnosed and treated in a hospital that is super specialised in my form of cancer.”
Herman’s personal journey is very moving to hear. His positivity and outlook despite all the odds are truly inspiring. Herman’s initial cancer diagnosis was discovered after he felt poorly and had dizzy spells, he initially thought it was the flu and made an appointment with his G.P. After investigation, it turned out to be trouble with his stomach and colon. During his colon treatment and investigations, it was found that he had traces of blood in his urine which, paired with his family history, required further testing and a referral to a urologist. Despite his fear Herman attended his appointment for a Cystoscopy and was shown into the dressing room.
Herman explains; “I remember walking into the dressing room and I sat down and I started crying. The staff opened the door and asked me why I was crying? They explained they were only going to look to see what was going on. I told them my father had died from bladder cancer. The urologist was a very, very caring and gentle woman and she said she would skip the procedure and would schedule me in for surgery. She told me if she’d found anything then she’d take it away. So when I’d wake up, it’d be either good news because there was nothing to find or it was good news because I would have already been treated.”
Unfortunately, this was not the end of Herman’s cancer journey. After 3 months he returned for his check-up. This time his entire bladder was filled with a different form of cancer, totally unrelated to the first bladder cancer. This one was much more aggressive. There was only one choice left for Herman if he were to keep his bladder and that was treatment with BCG. Herman found he suffered a lot of side effects when the treatment started, explaining he said “Your immune system doesn’t recognise bladder cancer and my new cancer was a specific type of bladder cancer that can multiply itself by changing a bit of DNA so it grows aggressively and fast, unchecked by your immune system. But the change in the DNA causes a backdoor to open in the cells which makes it possible for bacteria like in BCG to do something it normally isn’t able to do. Such bacteria usually aren’t able to enter the tumour cells. But since the back door was opened by the tumour cell, they are able to enter the cell and the body. Your immune system can recognise the cells with TBC and then it gets rid of the infected cells. Since only the cancer cells are infected with TBC, only those cells are destroyed by the immune system.”
“The treatment causes you to get lots of inflammation which causes pain. It means for a guy, the prostate, which is in the same area gets infected too. In my case it got chronically affected. I found I dreaded using the toilet in the morning to urinate as the pain was awful. So it wasn’t the best of times.”
Aside from the pain and the treatment Herman’s life was under attack too. Because of his cancer and treatment, his work contract ended and wasn’t continued. He found himself jobless and homeless and ended up temporarily living in a holiday shack. Because of his situation, Herman had no permanent address so couldn’t register for social benefits or any type of help. So mentally and physically Herman was fighting battles to survive on all fronts.
“I tried everything, even the Salvation Army when I ended up without a roof over my head. I managed to get the holiday shack, so I had somewhere to stay at least temporarily. Unfortunately, the Salvation Army said they couldn’t help me because I would only be eligible if I was on one of the programmes that they were running but these were only for people with alcohol or drug problems and since I had a roof over my head I seemed to be able to handle myself ok. It felt like nobody cared. I was diagnosed with something that might be the end for me. I might die and it felt like society was saying well, you’re going to die anyway so as far as we are concerned, you are already dead. You don’t exist anymore.”
Having his family there was a comfort to Herman but his struggles were as much mental as physical and at the beginning of his diagnosis, he had little to motivate him until he was inspired to help other people dealing with cancer and the life changes that it brings.
“People often use the term fighting cancer. Some struggle with the term, they say it’s not a matter of fighting because if someone dies are you saying they haven’t fought hard enough? No, of course not, in that sense it’s wrong. But I think it’s a very good phrase to use because it really is a fight. It is a fight to get out of bed in the morning when you’re facing this and everything that comes with it. It really is a struggle to get up and live your life fully. In the beginning, I just wanted to stay in bed because it all felt so useless. So senseless. But, I had to get up to make the most out of the day and I started writing on a website called kanker.nl. I have a blog there and I thought maybe someone else coming after me with the same diagnosis might be able to use my experience.”
Photograph featured is courtesy of Herman Otten
Thankfully Herman is cancer-free at the moment and living in a real house again, thanks to his sister. It has been 10 years since his diagnosis. However, because the type of Bladder cancer has a 95% chance of recurrence he still has to have regular check-ups. It’s a part of his life indefinitely now and he said most of the time he doesn’t give it a thought until the week or sometimes even the night prior to his oncology appointment. Then he will worry about cancer returning.
Herman is also focused on his sister who has since been diagnosed with breast cancer which has now spread to her bones. This is also motivating Herman to push forward in achieving the best possible care for every single patient. Frustratingly, as with every country, Covid has slowed down so much in the medical world. Herman’s frustration in the pandemic is echoed by many. He wants to get things moving in the right direction again. “I still hope we can speed things up a bit more. That’s what Inspire2Live is working very hard for right now. I mean, there are a lot of people dying at the moment and being diagnosed too late with cancer is completely unnecessary.”
Looking to the future Herman wants every patient worldwide to get access in time to the best possible care, based on the best possible diagnostics. He has such a lovely way to describe what he has been through and is fighting for today. He told us “Weirdly cancer has also has been an enrichment of my life, a lot of people, myself included, are on the highway of life. Daily work, day in day out. Well, then I suddenly found myself off the highway on a very bumpy, off-road, terrain. Stumbling and falling but with a lot of other people and we help each other up and move on together. At the very same time, we can see things those people on the highway have never seen. And sometimes those can be very nice and beautiful things as well.”
