ingFifty-eight days ago I was diagnosed with stage 4 Uterine Leiomyosarcoma with 11 detectable metastases in both lungs. Incurable and palliative. Since then I have been in the care of the Netherlands Cancer Institute and Preventive Medical Centre.
Fifty-seven days ago I started on a holistic path consisting of a mixture of conventional and complementary treatments, spiritual, mental and physical nourishment. Conscious, present and mindful living
In my first 3 blogs, I gave you some insight as to my emotional state of mind. And the difference in how I felt before surgery and after surgery. Twenty-three days ago the primary tumor along with my uterus and ovaries was removed with a clean margin. To improve quality of life rather than to extend it.
The days in the hospital, all drugged up, were light compared to the dark first days at home. Everyone keeps saying I am on an emotional roller coaster. Speeding up, slowing down, standing still, reversing … Except it is more like being on a train that stops at every station. A roller coaster loops, a train is linear. I am fully aware that I can choose to get off whenever I want to.
During these past two weeks at home I have done a lot of snapping and felt insignificant in spite of loads of wishing cards I received, text messages, good talks. I felt tired, cried a lot, restrained myself from breaking stuff, and tried very hard not to take it out on my husband and son. My husband and I had a little fight which in my head went from molehill to mountain within a matter of seconds. I am sure you know how that is?
I hate fights and always try to find a way to make up. So about an hour after the fight, we did just by litterally saying: shall we make up? And then not let your pride get in the way and just say yes. We talked and this is what I learned.
Please always be clear on what you need
from your partner – Which means being explicit. I know it is nothing new but oh so very hard to do. In my case, it was this: I was feeling lonely because I was the only one researching this ravaging illness and the more I read the more I was discouraged and felt powerless. I had a great need to share this process with my husband. It was tiring to keep trying to get him up to date while wading through incomprehensible biological data. Of course, he was doing his part in caring for day-to-day stuff in and around our house and driving me back and forth to appointments.
While not wanting to burden him even more (yes, that is the story those dragons luring in your head keep telling you), I had to admit to needing his emotional and rational support in dealing with the – hard to swallow and heartbreaking – information that was being revealed in the data. When I told him this he immediately said; even though it was emotionally difficult for him to read, he’ll support me in whatever way I need support.
So we switched off enough to organise the information in an excel document with the most effective chemos according to RGCC’s (genetics lab in Switzerland) testing on my DNA and the chemos that AVL had suggested. Both emotional and rational exercises.
from your doctors – In my case that meant telling my doctors that I am not ethically opposed to chemotherapy however, if its purpose is to improve quality and not just add days, then I have to make a well-informed decision which means adding my RGCC results to our decision-making matrix. And of course, she had not read our report which was in her possession for the past 3 weeks. Even though I longed to correct and judge, I kept my cool because at the end of the day I need her, at least for now. And I realise that she did not intentionally not read the report. To cut a long story short, she herself suggested that she would:
conduct her own genetic assessment of the primary tumor, cancel the first chemo session planned for next week, order extra scans and then come together in two weeks to re-evaluate and make what I call a new battle plan.
from friends – every single day I am getting better at this even though the ever present story of being a burden with the underlying story of not being worth it, lurks in my head. Then I remember what I would tell my clients who struggle with the same issue: asking for help is a great sign of trust. You trust someone enough to show them your vulnerability which is in itself a gift. So in fact you are also giving them something. In my case being explicit in what I need is asking for help and my friends are more that happy to chip in and express love in whatever way they can. I have to keep reminding myself that I do not have to do anything in return. Tough! What are they helping with?
Presorting my personal belongings, helping me with last wishes, driving me to appointments etc…
from family – these are complex relationships, at least in my family. It is a challenge to stay true to me and to keep reminding them that it is about my proces and my emotions in this stage of my life. And those I need the most have stood up and are there holding space, which is for some an even greater challenge.
My resolutions for next week?
Meditate and pray more
Let go more
Love (me) more
Finish Steal Away website (the profit made from our vacation rental in Putten will be solely used to pay for my treatments).
Upkeeping my Waheeda.nl website with all my uterine leiomyosarcoma-related info.
Forever love and light