Maxime Vossen

Loss of Previous Life, Stage 4 Bowel Cancer Diagnosis

Hi Maxime, what’s your story?

I’m Maxime, a 30 year old cat mom who just moved into the tiniest house (with the cutest garden) with her husband and two cats. i spend my days living “a slow life,” really focusing on nourishing myself. in a way it is the life i’ve been dreaming of for myself, and the reason i became self employed all those years ago, so i could have this kind of life. i love waking up with the sun, drinking coffee in the garden, spending time outdoors in nature, and focusing on creating, on writing, taking pictures, connecting to something bigger than myself.  

I’m a creator, always jutting down words and musings in my journal. taking photographs of everything, especially of beautiful light. i love to dress up and do my make-up and take self-portraits, its a way of expressing how i feel, a way of feeling alive and like a piece of art myself. i love to go on adventures, visiting place that inspire me, sitting in cafes and watching people pass by, reading or writing. 

I’m “spiritual” even though i don't like that word very much, i read tarot cards and love to spend time connecting with my guides, channeling messages. I used to work as a therapist/body worker/tarot reader and now i use all the tools i have accumulated over the years to take care of myself and to spark inspiration on instagram. 

You shared with me that you were diagnosed with cancer. What was life like before your diagnosis? 

before life, at the same time wasn't that different, and yet it completely was. i was self-employed, working as an energy worker and therapist, i had a successful podcast and really felt like i was on my way to do something worthwhile, i wanted to write books, hosts seminars, guide people, share all these gifts that i got with the world. right now my health is not stable enough to pick up work and i really miss it, trying to find a way to fill that gap in a way that is physically accessible.  that’s what has shifted most, the things i can’t do anymore, i think i’m on 20% physical capacity from before, taking care of my body is a full-time job now.

another thing that has shifted completely is that i used to be so carefree, so much faith that i would live a long and healthy life, that i would have so much time to grow and experience all kinds of things. 

Can you share about your diagnoses?

i had been having migraine-type symptoms starting 10 months before diagnosis. i know now that  that was a vagal response to whatever was shifting in my gut. “real” symptoms started 3 months before diagnosis. i had one night of massive colic-type pains in my stomach, went to first aid but by then it was mostly gone. this type of pain came back more and more frequently until i was in immense pain every day and couldn’t really eat anymore. i went to different gps and first aid a couple of times, where i was always brushed off because they thought it was inflammatory bowel disease (ibd). i was too young and had a history of an eating disorder, so sadly i wasn’t taken seriously. thank god for my primary gp who pushed for an echo. 

in october 2020 i was diagnosed with stage 4 bowel cancer (mets to both ovaries and lymp nodes). i had an emergency hipec surgery and was started on chemo. in january 2021 they then discovered i had a rare mutation (BRAF) and chemo was failing. the treatment i am on now is not curative (aka i am treatable but i will not be cured).

How did you feel when you first received the news? 

calm. i knew i was ill and could feel it wasn’t good so it didn’t come as such a surprise. i was kind of relieved they finally found something and now we could start doing something. i also think for the first few months i didn’t realise how serious it actually was since i was in full on survival mode with the surgery and recovering from it. i remember thinking i just had “a bit” of cancer and they were going to get it out and then life would go on as before, i was so wrong but in a  way i’m glad i felt that way because it helped me go through those first few months. 

What are the treatment options for this type of cancer? What has treatment been for you? 

not a lot of options, chemo doesn’t have a high success rate. there has been targeted immunotherapy for only a couple of year with mixed succes, i’m on it now and it keeps me stable but there aren’t really other viable options once the immuno doesn’t work.

i’ve had a hipec surgery to remove parts of my colon and ovaries, followed by chemo, i was NED for about 2months and then had a recurrence, thats when they discovered my cancer mutation (BRAF) and i had the “we wont be able to cure you talk.” i was then switched to  immunotherapy which thankfully is keeping me stable.  

right now is not too bad, i’ve been on immuno for a year and am mostly very tired. chemo was a living hell and very hard on me, thankfully i only had that for a few months. i am in some ways still recovering from surgery, which was extremely invasive, even now a year and a half later i have manual therapy two times a week and am on a lot of pain meds.

How did friends and family handle your diagnosis? 

i’ve lost a lot of friends since the diagnosis, people who can’t deal with the reality of what being incurably ill means. i think it’s also harder when you get sick so young, all the people my age are buying houses and having kids and here i am slowly dying, its like living in a completely different  universe. the friends that stayed stepped it up in a big way, they are really here for me, emotionally and practically.  

my dad had a really hard time with diagnosis and mostly had a hard time wrapping his head around me not getting better, especially since i felt from the beginning that this wasn’t something i would be cured from (even before the doctors specifically told me). he has been the biggest supporter and cheerleader though, visiting multiple times a week, i actually think our relationship got much closer and that’s a real blessing. 

and then there’s my, then boyfriend, now husband. when i got diagnosed we had been together for about 4 years with vague plans of getting married and buying a house. i really wanted to offer him an out when we found out i wouldn’t be getting better - again no one signs up for this but especially not in your thirties. he was very adamant though about wanting to do this together and wanting to be with me no matter what. we got married a year ago, because we wanted to have this ritual and binding of our love but also practically to make sure he will be a bit more protected when i pass away. our relationship has shifted in a lot of way, its not always easy being partners that have slipped into a caretaker/caregiver dynamic, but we have also  grown so much closer and i am grateful every day to have him by my side as my parter in crime. 

Any words of wisdom you would give to other people in a similar situation? 

there is still a life worth living here. it might not feel like it at first when all you can see are all the things you are going to lose. take your time to grieve and be angry and sad and upset, feel whatever you need to feel and then find a way to see beauty again, to realise that you are still a person who’s worthwhile, that this can still be a life that’s magical and important even if its in different ways than you have imagined.  

What has been a specific low point or struggle you’ve experienced since the diagnosis?  

for me its more like a cyclical thing, there are moments when i’m doing pretty good and it feels like i’ve accepted it and am dealing with all of it well, and then there are moments where i’m just not doing good at all. my threshold and my resilience is much lower, so every once in a while it gets too much physically or emotionally and i stay down at rock bottom for a couple of days. i think its important to realise that that’s only normal, that we are dealing with a lot of things every day and its a lot to wrap your head around. it’s normal that sometimes we just feel sad and stuck.  

How did you manage to find joy in those low moments? 

by being in the present moment and focusing on the small things. i’ve always been a person that could really be brought to tears by the moon or a beautiful sunrise or my cats. small, precious things have always touched my heart and that’s a “talent” i really learned to rely on in the hard moments. i might be stuck on the couch with fatigue and be very very annoyed by that because i wanted to go out for coffee, but look at the beautiful light that is filtering through the plants in the living room and this gorgeous puddle of fluffy cat that is keeping me company. i splurge on little comforts specifically for these moments - a luxurious tea, nice candles, good  chocolate. i try to create a kind of rest sanctuary and see it as an act of self-care instead of something that is here to punish me. 

also writing and talking about it, it’s so important to have a safe space to vent and be heard. i  opted not to see a therapist because i’m one myself and have been in years of therapy before so i really know what i need and how to give it to myself, but my main advice will always be to find a great therapist and let them help you on the way to learn to express your feelings and create a toolbox that helps you take care of yourself in these moments. 

Do you live life differently since the diagnosis? 

i do but mostly because of the limitations of what my body can handle. there are a lot of stories of people who really shifted their way of life after something serious happened to them but mine is not one of those. i always joke that i didn’t need cancer as some sort of wake-up call, i was already living a life that was very close to myself, i was taking care of myself, doing what i loved to do, and connected to something bigger. the thing that did shift is that my body needs more rest and can’t always do what i want to do so i am much more strict and have even better boundaries. i prioritise things that give me energy, that inspire me, i carve out time for people that i love, but i’m very strict at saying no to things that don’t feel good for me. 

So often people think grief and loss only affects those dealing with a death. What do you want others to know about grief from the perspective of a cancer patient? 

there are a lot of things to grieve as a cancer patient, also when you have a good prognosis. it’s the grief of the person you were and have to let go of from one moment unto the next. it’s grieving that carefree, safe, “i will live forever” mentality, grieving all the trauma and fears. it’s  grieving the person you thought you would be.

there’s a lot of loss of identity that comes from being so ill, not just for the person you were but also for the person you could be, and i think it’s very important for cancer patients as well as for the people around them, to acknowledge that and hold space for that. and the medical trauma - it’s something i could never have imagined. hospitals, certain smells, certain situations, they will never ever be the same for me and they will never be complexity safe for me. you really lose a  part of your innocence and inherent trust in the world. 

How open are you about talking about death with those closest to you? 

very open, it’s a very real option for me and an outcome that will happen sooner or later. even before, i was very open about talking about life and death and now i think it’s even more important to talk about these things, especially because it is something i do think about, i  wouldn’t say a lot but probably more than the average healthy person, and i don't want to hide that from the people around me. 

i also think its really important from a practical point of view, that your family and loved ones know what you would or wouldn’t like for your end-of-life care and your funeral. its a lot of practical things to consider and i think it takes some load off of them when you have had these conversations. 

another part is slightly more egoistical, i’m really sad that i won’t be there for them to help them grieve and move through the world after i’m gone. talking about it now gives me the idea that i can kind of share in that grieving process in a way. 

Oftentimes when we are faced with our own mortality, we create a bucket list of items we hope to accomplish in whatever time we have left on this planet. Do you have a list? If so, what are  some of the items on it? 

i’m not a fan of bucket lists personally. i’ve always said i don’t want to live like i’m already dying and a bucket list to me is something that reminds me too much of the dying part. i want to live whatever time i have left following my intuition and following the flow of life and not having it be ruled by a list, that’s not ever been my style so why start doing that now?

i do have a more of a “if i want to do it, i might as well do it now’ mentality. if something pops in my head as something i’d like to do one day, i try to plan it already. i got myself skates for example. i saw a dear online friend of mine having so much fun on skates and it was something i’d always wanted to try so then i was like, “oke what am i waiting for exactly? if this is something i want to do, why not do it?” so i bought myself a pair of skates and i’m now skating in my living room and it has brought me so much joy. 

we also brought up some of our long term plans as well, like getting married and buying a house. there’s no use in waiting for a certain time or a certain moment, all we have is now.

How can a person best be there to support a loved one in a similar situation? 

by being there. it’s so normal to not to know what to say or do, so if you feel like you don’t know how to show up for someone, tell them that and then show up anyway. i find it really helpful when people treat me like they treated me before bc it makes me feel like a person and not a patient. for example, the first few months my friends tried to “spare” me and not talk about their issues because i was going though something “so much worse.” but i made me feel really alienated and like the relationship wasn’t equal anymore. so i told them, “i would love to talk about you too bc your things are valid and right now it doesn’t feel like i’m part of your life anymore.” we have strict boundaries, they always ask me if i have space to talk about something or if i feel good enough for them to vent, but i honestly think that should be part of any relationship anyway - to check if people are available to listen to you. 

also, practical things, the support i remember most and still appreciate now are people that called me and said, i’m going to the store what can i get you or just dropped off food or flowers.  i had friends that came to clean my house and helped me get to scan etc. having cancer is so much practical hassle and people helping you out, especially without you having to tell or ask them is such a blessing. so basically my other tip would be: help with practical things and don’t burden them with the what and when too much. pick up the phone and tell them you are going to drop of food. maybe just ask if there is something they can’t eat right now if they are in active treatment, but then make the decision for them. 

Any resources that have been helpful for you that others might be able to utilize? 

@thecancerpatient on instagram has been such an important and valuable resource to learn more about cancer life and also to have a good laugh about it with people who are in the same situation. social media in general has also been very helpful, its an easy way to meet other cancer patients and chat with them. 

What brings you joy today?  

the morning sun while i’m sitting here at our dining table, while i’m finishing breakfast and having my first sip of coffee. i can hear the cats running around in the kitchen and all of my painting gear is lying here because that’s what i’m going to do next. simple bliss. 

Anything else you’d like readers to know? 

trust your body and your intuition. you always know when something is wrong and its very important to trust that and to act on that. find doctors that trust in that ability and work with you instead of around you.

Want to know more about Maxime and her story? Follow her on Instagram @maximevossen.be or check out her website at www.maximevossen.be