What is one thing you wish you knew before Michel started treatment?
Michel Britte was born and raised in Belgium, but moved to the United States at the age of 21 to attend school. It’s there where he met and married his wife, Noelle. Together they have 3 children and all live in Salt Lake City, Utah.
Michel was diagnosed with grade 4 glioblastoma brain cancer in February 2019. He had been experiencing symptoms like pains in the neck and chest, and some behavior issues and falls, but was repeatedly misdiagnosed by the many doctors they sought out.
The Britte family had a Caribbean cruise planned for the beginning of February and decided to go in spite of his symptoms, hoping the sun and some rest would do him good. After disembarking in Florida, Michel had a seizure in the airport while the family waited for their flight home. It was in a local hospital where the tumor was discovered and was eventually diagnosed as glioblastoma after the family traveled back to Utah for surgery.
In his 40 months living with glioblastoma, Michel endured 3 brain surgeries, 2 clinical trials and an immunotherapy study, 4 rounds of chemo, 3 rounds of radiation (targeted, full brain, and spinal) and numerous other tests and procedures.
Michel was a true warrior, staying positive and realistic during his illness. He influenced many people for good including the players of numerous youth soccer (football) teams he coached. He remained high functioning until just the last few months before his passing on June 10, 2022.
We found Noelle and Michel's instagram account early on after Stu was diagnosed, following along their journey and seeing what treatment entailed in America gave us hope and there were many times that Noelle messaged to say she was praying for Stu. She has generously agreed to share their story so that others can find hope and hindsight. Their instagram link is below if you'd like to connect.
I wish I would have known how smoothly that first 6 weeks of treatment would be, actually. We prepared for the worst, but there was no nausea, no loss of energy, no hair loss. I think the fact that the chemo was in pill form made a difference. Michel took the time off of work, but continued to coach youth soccer besides reeling from the shock of such a diagnosis, we did normal things, but always with a new awareness of what our future held.
What advice would you give on how to best support a loved one going through brain cancer?
My advice has remained fairly consistent from the beginning: Try to focus on loving your loved one and on making good memories instead of trying to find cures, alternative treatments, etc. Let the professionals do that and let them do the research while you focus on your family and being at your loved one’s side. If you are offered a clinical trial, take it. Look for the miracles and the positive experiences. If possible, keep a journal and record the good and the bad times, but especially how the bad times made you stronger.
What was the most difficult part of the journey and how did you overcome it?
The most difficult part of the journey emotionally was the anticipatory grief -knowing the outcome of glioblastoma, but not knowing how we would get there. You live everyday on the edge in an uncertain world. You can't overcome that until your loved one passes and you finally know how the story plays out.
Physically the hardest part was right at the end when he needed help walking and when he lost the ability to communicate clearly. Honestly, that was only the last few weeks with a steeper decline in the last few days. Michel’s positive attitude buoyed us all up and helped us face the potentially darker times.
What was your biggest self-discovery or revelation after Michel was diagnosed?
Michel literally went through a process of perfection of his soul; where he really became humble and more gentle, more patient and more focused on what is important in life like family and preparing us to live without him. Something about facing his own mortality caused this evolution and made him a better man. I always thought he was amazing, but this brought out the best in him. I often say that I want him back, but I want him back the way he became and without the cancer. If only. As the caregiver, my biggest self discovery is that I was capable of doing and feeling and learning and understanding more than I ever thought I could.
How did Michel find the strength to go through the treatments?
While everyone will have a different experience, ours was faith in God and faith and trust in modern medicine. Michel had a positive attitude that was infectious and that helped influence all of us. I became convinced that this trial was not given to us to test us, it was given to us because we were capable of it and of making us better and stronger.
How did you as a family deal with the anxiety that surrounded Michel's diagnosis?
That’s a good question because I don’t know if I ever figured that out. In fact I find myself comparing the anticipatory grief to the real-life grief and the only difference I come up with is that the mystery is now solved on how this would end. In the beginning a diagnosis like glioblastoma is so shocking that when it’s over there is a sense of relief mingled in with the pain. I think the way Michel and I tried to deal with the anxiety was to control what we could control. We got everything in order as far as our house, cars, finances, relationships, etc. I cleaned and de-junked and reorganized every inch of our home.
" Look for the miracles and the positive experiences. If possible, keep a journal and record the good and the bad times, but especially how the bad times made you stronger "
What did you all do to help you meet the challenges of Michel's treatments?
We were always on guard to meet the challenges, but the treatment effects were really not so bad. We cleared our calendar of major events or vacations so we could focus on rest and me being able to drive him to and from appointments and stay with him. I only ever missed one of his appointments. We made it a priority to do everything together so that I would have the best understanding of the disease and of what the doctors said and Michel’s progress or lack thereof. We kept careful notes and medical charts to track the medications. We relied on the goodness of others to bring us meals, take the kids places, listen to us talk and tell our story.
What did others close to you do for you that made a difference?
It was the support of people around us who really made a difference. I started an Instagram account to keep people updated and it was followed by many friends and family and community members. People who followed were a great support with words and acts of kindness. Michel received a lot of recognition because he was involved in the community as a soccer coach, so his story was very public. Tributes like t-shirts and fundraisers were so kind. But a lot of the more meaningful things people did were dedicate sports or musical performances to him.
In a less public way it was family being willing to understand his treatments, help drive him if necessary, spend time with him and us. Sunday dinners, weeknight hangouts. My extended family called this “our” story. Not “Noelle’s story” or “the Britte’s story”. It was all of ours and that made me never feel alone. Especially meaningful was to be us and with him at the end and not leave our sides.
Did you join a support group? If so, how did it help and are you happy to share the link?
I joined a Facebook group for women whose husband has been diagnosed with GBM. I stayed in the group even though many of the posts were negative, depressing, and very real. It was a treasure trove of answers and resources and people who could relate. I made many friends there.
I started a FB group for local wives and to this day we meet and have dinner, visit each other on birthdays and have plans to travel and spend time together. I also met several people via my instagram account that have become lifetime friends.
Michel and I said that if some good could come from this by helping and supporting others, we would be happy. I will spend the rest of my life if I have to in support of other caregivers who face this most difficult of paths. My instagram link is over there.
What three things would you tell a person who just yesterday learned of their cancer diagnosis?
1. Ask your doctor about clinical trials - they may not be a cure, but they buy time
2. Don’t waste your time looking for a cure and don’t ignore the reality of GBM. Be honest about the situation and get things in order like financials, accounts and passwords, fix things up around the house and with any cars. You don’t have to focus on the terminal nature of GBM, but you will be much happier not having to worry about this when the person is gone. And then enjoy the time you have together doing what you like and loving each other.
3. Look for small miracles and tender mercies that take place along the way. They are there! Record them, focus on them, discuss them. They will carry you through the harder and darker times.
Were there any particular blogs, organisations, websites, journal articles, or people who were especially helpful with support and/or information?
The most helpful to me were other people’s stories on social media and being able to connect to other people. I received support and information from:
What did you change in your life to support any medical treatments Michel got - dietary changes, activity changes, supplements?
We didn’t really make any changes. I think something our doctor told us, kind of stuck with us. He said to enjoy whatever you want! People often ask me how we got 40 months out of a GBM diagnosis and I like to joke that we ate a lot of In-N-Out (burger joint) and Diet Coke.
What is something that you’ve found has given you hope during this time?
I don’t want to be sappy, but truly it has been a faith in God (or whatever higher power you look to). I felt there was a greater purpose to all of this and I don’t know that I will know what that is in this life, but maybe in the next if there is one. I would add that hope has been given by the many people around me who sustain and support me with kind words or actions. With spending time with me.
With the benefits of hindsight. if you or a loved one had to do it all again, what would you do differently when going through your diagnoses and treatments?
Interestingly enough, I wouldn’t change a thing. I think we did everything right. We took advantage of medical offerings, we traveled, we prepared and we tried to do it all with gratitude.