This topic also links in with my other posts on the BRIAN APP of ‘Why we need a paradigm shift in health professional’s current belief’s and thinking’ and ‘How Star Trek influenced my belief in a way to improve survival for a high-grade tumour’
My thinking is around the fact that when we use the words ‘terminal cancer’, we are ignoring a fundamental principle of life – ‘all life is terminal’, no human, animal, creature etc., gets to live for ever. The only guarantee in life we have from the moment we are born, is that at some point, we are going to die. For some people is it far too earlier than expected, for others, a lot later. My life was already terminal before my diagnosis of a GBM grade 4 brain tumour and continues to be so.
The word ‘terminal’ is such a harsh word to use, and I remember my reaction when I received a telephone call from my brother to say my elder brother David’s brain tumour was terminal and I needed to attend a meeting to discuss his care plan at the hospital in 2009. At the time, I was at work preparing and setting up for a regional meeting at the Town Hall where I worked. I can still remember the state of shock I was in, like a punch in the solar plexus, it took the ‘wind out of my sails’ and left me feeling numb. I spent the next, 15-20 minutes, which seemed like an hour, walking around the Town Hall and gardens in a total daze.
If the call had said David had a grade 4 diagnosis, I would have been unsure what that meant, but my reaction would have been a lot less stressful.
Does what I have written, make sense? I really would appreciate any feedback about my thoughts regarding this topic.
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Tansi75
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I get it! Hate the word. It’s terrifyingly blunt and other people hate it too, it frightens them and makes them feel they have to comfort you when actually they don’t. I am good with where I am but other people think I am in purgatory. I am not. I have to accept the situation in order to be happy and I do like being happy!!!!!!!!
Is end stage better?? I guess the grade does define it…… honestly! They say you need a manual for parenting but my goodness, you need an encyclopaedia for dealing with this beastie and you need to be bright! It’s tough!
In order to survive any traumatic event you must have hope and for far too long 'hope' has been taken away from people by the continued use of the 'T' word. Last year I placed a post on the BRIAN APP discussion board 'Why we need a paradigm shift in health professionals current thinking and beliefs', which you might find interesting.
I think one of the reasons I am still alive today is because from the moment I was told my tumour was a grade 4, which was very much an 'oh ****!' moment. I've never had any intention of dying and have concentrated on living. 🙂
we just found out our 18 year old son has a grade 4 glioma. After basically emergency brain surgery. We live in China and so we automatically assumed they meant stage 4 as they also mentioned life expectancy. But after try to make sense of all this - I came across this post and it's help me face this morning. I really appreciate it. I have no idea where this is going but I'm determined to give my son a fighting chance at it. I saw your star trek reference and we're going with this simple Black Panther quote. We Gon Fight! We Gon Fight!
More than anything, it is very important to stay positive and believe that it is possible to live beyond a prognosis if you concentrate on living. If you download the Brain Tumour Charity's BRIAN APP you will find more of my postings about my experience and advice on the Discussion Board.
Have you cut out all unnecessary sugar from your sons diet, which feeds cancer cells. Also include blueberries, pecan nuts and turmeric spice which have anti-cancer properties.
Stay strong, positive and consider your sons current situation as a life changing opportunity for him to take his life in a new direction. I do believe that a diagnosis for a high grade brain tumour can mean 'change of life' not 'end of life'.
I wish you all the very best for a longer and better life together, for as long as it may be. 🙂
Describing this as “terminal” cancer paints a picture to most who hear it. Patient and most others. As noted (and nicely framed/worded) all of us has an expiration date. Most just don’t have any idea of when. That said, using the term “terminal” is upsetting to my spouse who already has enough to worry about (i am tge one with cancer). We try not to use the term. We focus on the positive. We live for now. One day at a time. Gratitude is our mantra. Grateful for today and any more we get. Many learn this too late. Stay positive. Stay humble. Be kind. Be grateful. Good luck! 👍
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