Eighty-one days since being diagnosed with stage 4 Uterine Leiomyosarcoma with 6 lung metastases (spots). Eighteen days ago 6 became 20. Sixty days to my 55th birthday.
This journey started on November 18th, 2021 with a visit to my GP for a bump in my abdomen. A bump that went from burden to beast bent on killing me. The heaviest yet most beautiful beast weighing on these shoulders who have carried more than their fair share of burden during this lifetime.
Not so much because of its qualities but because of the implications for my life and that of my family and friends.
I have made it my job as a storyteller to encourage others to tell their true raw stories. Therein lies true freedom. Encouraged them to avoid telling polished, Mrs. Bouquet (keeping up appearances), embellished (social media) stories. To avoid a self imposed lockdown or lockedin state of being. Lockedin in a lie or a fantasy.
The past two months I have been telling my Cancer story over and over. As honest as possible, as raw as possible. What no one realises is that I keep telling the story to myself. Sometimes three times a day and last week after my last scan five times as is. While I have always emphasised the importance of telling your (vulnerable) story after it has become a scar and not while it is still a wound, my story is a gaping wound with my life oozing out of it. It helps me process, cope, act, stay grounded in a harsh reality and still be of meaning. To use similar words of president Zelensky in this war on his country that is like an agressive cancerous tumour: You will see my face not my back.
I spoke to a friend of a friend this week who is in her 5th year of Cancer and five years palliative. Now there is no more treatment and she has declined taking part in a study. She has had enough. She told me that she kept on working after being diagnosed and did not want the Cancer to determine who she is. For a moment I felt guilt and the need to defend myself because I, following my holistic doctor’s advice, had dropped everything to study this disease. In my previous reflections I told you of my need to understand what is going on, for conscious decision making and to find renewed purpose.
I told her that I had put my coach practice on hold, following doctor’s advice, which was easy to do because before being diagnosed I was at a crossroad. Trying to decide if to go on as a coach and storyteller on the same path or oragnising coach and storytelling retreats using my own Steal Away vacation location. This made it so much easier to drop my day to day activities.
The amazing thing is, I ended up creating my own retreat, trying to find that inner voice, follow my intuition and block out the noise around me. Refinding my reason to live, my Ikigai, my reason to love me, to carry on even when this beast keeps breathing fire in my body. Sounds corny and cliché and all of that but, I also felt an urge to be close to people. Not only my own people but all people. I clearly remember walking in the shopping area where we live, just a few days after being diagnosed, looking at people and feeling a deep and inexplicable love and need to approach them, touch them and tell them I love them. Don’t worry I didn’t. Think they would have thought I am crazy or who knows maybe even returned the love. Maybe I shoud have?
As an experiment I once went with colleagues to the Utrecht Central Station and gave free hugs to all those passerbys who allowed me into their arms. It is one of the most wonderful and powerful things I have done. I felt energised, empowered and overflowing with happiness.
So I decided to follow my intuition because, there is literally no time to lose. To start with the people closest to me. Personal and professional. A great sense of urgency overwhelmed me and rallied me on to do what I felt I should do. Come to think of it, I have always lived my life this way but when it came to relationships I tend to be more careful, hesitant, less upfront about how I truely feel.
My friends, family and clients became my guinea pigs in my campaign of expressing how I truly feel and what I truly need, see blog nr. 4. The response was beyond my expectations. Some of my relationships evolved overnight into something of pure and of true beauty. Acquantainces became friends, friends became family, strangers offered help, fellow Cancer bravehearts were willing to tell me their most vulnerable story. Family members became soulmates.
Complex relationships within my family evolved overnight into pure, loving and butt-naked (sometimes literally) honest wholehearted connections. My sister was the first one I called when I got the life changing news. Instinct. We did not grow up in the same family, same culture, same values, same influence, yet we have never been as close, as easy and as compassionate with each other as we now are. Discovering how amazingly alike we are. Without rehashing the past or bashing each other with words that have lost their meaning. Without wading through all the shit that has been circling around us.
What we did do? Say we are sorry. Over and over. Dug a hole somewhere in between us and let it all be sucked in. Without blaming or fingerpointing. Build a bridge forged on love and acceptance. This alone is healing and the greatest gain of me having Cancer. I cannot speak for anyone else. And let’s be honest the best way to end any conflict is putting ego and pride aside and the need to be in the right. Listen to the other, see the other, see the human and feel the ever existing connection. Blood or no blood.
My mother has never declared her love as much as she is now doing. My siblings and my in-laws are suporting me and loving me to the best of their abilities. Travelling from far, Australia, USA and Qatar, in spite of Covid to come visit me. I have the most loving friends who know exactly what to do and what to say, who have for the first time ever told me they love me, offering help, forever holding space and playing a meaningful part in this phase of my life.
No place for egos. Some say this is what people do when they know there is not enough time. When faced with death. But, let’s face it having enough time is an illusion. The only time we have is now, this moment, you reading this now. Which means that all that matters is what we do now real time. That is what we leave behind and what we are remembered by. our past and our future
While typing this I realise that this is basically what we need to prevent war and to stop war. The realisation of that what is most important. If Putin knew he only had one day to live would his actions be any different? I really do not know because I do believe that you have people who have been taken over by their EGO. That, in spite of all the history lessons, common sense, we cannot seem to fight the most aggresive of Cancers, EGO.
Every life – every year approximately 50 women get uterine Leiomyosarcoma in the Netherlands – is worth me sharing my most vulnerable and intimate journey. Sharing my encounters with doctors, nurses, surgeons, patients… in Dutch. Soon to be found here. To reflect (in English) on this journey I am on, to do more and be of whatever help I can while fighting, embracing, beating, cursing, caressing this beast that is costing me more than anything in my life and has brought me more than I could have imagined.
Sounds cliché and as real end of life talk but, it is the honest to goodness truth. My journey these past three months went from:
First phase (November – december 2021) – diagnosis
To second phase (January – February 2022)- operation (removal of the primary tumour)
and now entering the third phase (March – June 2022) – chemotherapy
All the while living in the now and yet preparing for the moment that I will leave this realm.
My resolutions for next week has to do with my third phase:
Acceptance that this is the fight I have to fight to tame this beast.
Commitment to the choice I have made
Acceptance of all the body-, heart- and soulache I will feel.
Continue to discover my limits and to listen to me without being sidetracked.
Write and reflect.
Be patient with and love my people.
Focus on my journey not on the destination while being thankful for the rainbows.
Love and light,
Aiming to move, mobilise and motivate you with real impact stories.
P.S. This photo was taken by my dear friend Christel on February 24th, who has been showering me with love.