When you get told they want to refuse treatment...

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Codename Denebola1b, hello Macmillan community..

***WARNING: EXTREMELY LONG RANT*** I hope this okay, I just really need to get this out....

I am in a long distance relationship with my fiancé who resides in the United Sates. We met through rather unorthodox means though considering the times we live in these days I guess its not all that unusual.. However, our individual circumstances as I found were certainly unique.

She's a single mother with two beautiful children, an 11 year old son and a 13 year old daughter. Both extremely bright though challenged as they're on the autistic spectrum. Her previous marriage was an extremely sheltered one... with a narcissistic partner who only really cared about his own image and kept her away from the world and other people. When she finally broke free, she found herself unprepared for the world but she did the best she could for herself and her children, even moving back in proximity to the parents who disowned and gave her to the state when she was a young teen.

Her life growing up was filled with trauma both medically and emotionally. Having gone through an experimental procedure that led to her bladder being created out of intestine she succumbed to a lifetime of operations and body disfigurement... as well as eventually being disowned by her parents due to her emotional temperaments which were likely exacerbated by the fact that she herself is on the autistic spectrum, though nobody knew at that time.

She therefore took a tumultuous journey through the American mental health system which... when I first heard her speak about it, sounded exactly like what you and I would see in a movie. Real-time suicides and self-harm, blood and defecated smearing on the walls, un-provoked violence in all manners and forms... being wrestled and pinned down by men in white coats for refusing to take medication.

She became silent, just observed... Eventually, she was put through a specialized school, did extremely well and passed with distinction and eventually told that she didnt belong there and got discharged out of the mental asylum, but she had nowhere to go.. her parents had disowned her. She was given housing, and lived her life until she gave up an opportunity to study primatology and found her first partner with whom she eventually had her children with.

The honeymoon period was short lived, she found herself in yet another precarious situation... but she had nothing... was made to believe she was nothing else but a wife and a mother to her two children, and she believed it. She was abandoned again by her partner who became a drunk and would not return home for weeks and months on end.. That is until 5 years ago when something snapped and she mustered up the courage to divorce despite having no safety net, no idea of how she'll support herself and the kids... she just wanted out... 

Two years later, after somewhat patching up her relationship with her parents and moving nearby to them.... we met online. I listened to her story and was horrified yet... in absolute awe of her resilience and strength.. how is she so calm? how has she managed to raise these kids who were so well mannered and impeccably smart?? She was so... pure, angelic in her nature and forgiving to all that's happened to her. I was stumped... how is it possible for a human being to experience such trauma and yet, have such a beautiful and forgiving nature... life has not been kind to her and yet.. here she is, shining.

I fell in love.. we had so much in common spiritually. I myself was on a personal path of reflection and shared with her what I'd learnt and experienced through teachings of daoist philosophy and zen buhdism.. We hit it off like a rocket and were finishing each others sentences left, right and center... gosh.. what i'd give to experience all that again.. I became enamoured in her nature.

And thus, despite our individual circumstances.. we became an item, we visited each other... each and everytime being better than the last. Our moral support for each other was unparalleled and we rose each other to new heights... she had no qualifications, but she loved studying and became an advocate for autism and developed her own teaching philosophy whilst homeschooling her own autistic children. She then became an English Language teacher for foreign students and set up her own website and business.. I on the other hand got inspired and decided to re-train myself in IT and became an IT Engineer once again by recertifying, now.... I am back in industry after 5-6 years since I left it.

When she thought she was at last at peace... she got served for custody of her children from their father... this was 12months ago, and the battle is still ongoing... Fast forward to 4 weeks ago, she got diagnosed with Triple negative breast cancer which had also spread into her near lymph nodes. She's been reccomended the harshest treatment there is and has been told that the goal was to slow it down, and that it wont kill it. Again, she must face this alone... due to the situation of the custody battle and the well-being of the kids who have explicitly expressed discomfort in the presence of another man in the house, I cannot be there... nor can I afford to, even I have only just got myself back on track... I was diagnosed with severe depression several years ago and currently being diagnosed for chronic pain / fibromyalgia. I'm currently on heavy medication for both my depression and chronic pain.

Our conversations have been tough... she was told that she will feel like she cant get out of bed.. that she will be sick and that can be dangerous so it needs to be cleaned up... "who will clean up after me when I do"? she says.. She was told that she wont feel hungry and might actually not eat at all. Her students told her from their experience, that it was a challenge to encourage them to eat... "who will do that for me"? she says... 

To put it into perspective... she has no one.. no friends nearby, and her parents are hit and miss... She'll have to deal with the after effects of treatment alone whilst looking after her two kids which... she may not have for much longer.. She wonders what the point is if the treatment wont kill it and why is she going through pain for a 'maybe' or even more pain down the line. And so she said it... "I'm going to refuse treatment and let it run its course...." 

I'm at a loss... I dont know what to say... I dont know how I should be thinking or how to respond.. I ask myself.. "really? is the only way to just accept that and be the one to understand her feelings"? "should I be fighting her or should I respect what she wants"? To be okay with watching her die like this... to speak to her across the ether until she can speak no more and joins it herself... 

She's supposed to have her port put in on Friday.. her veins are too small to survive the chemo so the only way in is through the port directly into the heart.. and she's considering not going.. and beginning to decide what her kids will keep from her possessions.. I have no more to say, i feel this is it...

If you made it this far, thank you from the bottom of my heart... 

Denebola1b

  • Hi  and welcome to the Macmillan Community but so sorry to read about your fiancés diagnosis.

    A cancer diagnosis like this can be such a challenging and stressful time and more so due to the distance involved and the complications of her diagnosis……. but getting support from others who my be dealing with the ‘same' challenges could help you a lot.

    This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your fiancé and indeed yourself you may benefit from joining and posting in our 

    Family and Friends

    Supporting someone with incurable cancer

    ……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.

    Please do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you Mike, i have done as you have advised.

  • If it helps, I’m coming towards the last chemotherapy treatment for Triple Negative Breast cancer (I’ve had 15 already) and not once have I been sick. The hospital gave me tablets to take at home if I feel nausea's. Hopefully your fiancé won’t feel as bad as she thinks she will be. I know I did a lot of overthinking before starting chemotherapy and honestly it’s not been as bad as I expected it to be.