Introducing NED and LEON
I have been completely enclosed by the feeling that I don’t matter, trying to advocate for metastatic breast cancer doesn’t matter, that actually nothing matters.
I have never felt that I truly belonged anywhere, except maybe at one MBC forum that is in America. They have started a new project and because I am not resident in the US I am excluded. This has led me to question whether I belong there either, especially as one of the sponsors of the group is a Big Pharma company in which, sad to say, I have no confidence in, nor any such company that they are doing their utmost to find treatments to help patients; only in their desire to do the utmost to maximise their profits. But that is not the subject of this blog, and I could go on about it ….
I was so taken aback by the ‘US residents only’ tag that it fair took my breath away. Here at last was a group bringing together various non-profit organisations who advocate for, and take a real interest in MBC, so to be excluded was devastating. I have slept most of the last 30 odd hours because that has been the best way to stop myself crying and getting stressed and angry about the whole thing. There isn’t even a dedicted MBC non-profit in the UK, we just get a corner of breast cancer sites, but where we are generally ignored. I certainly don’t feel welcome on websites which shout about survivorship and life after cancer and think of us as a bit of an afterthought.
We are not the afterthought of breast cancer we are breast cancer in its rawest and most immediate and intimidating form. It might recur for early stagers, but it is with us for the rest of our lives, 24/7 and the best we can hope for is that we become NED (No Evidence of Disease) meaning that it is not detectable at the moment, though this is not the same as remission where they think they have ‘got’ it. NED is unpredicatable and has been known to disappear in an instant, or a scan.
The second best is LEON (Less Evidence Of Nasties), who is NEDs younger but somewhat more constant and less fickle brother. NED can tend to leave us in the lurch with no notice that he was going, while LEON sticks around for a bit longer and is also known as stable disease (holding our own). On a really good day LEON actually gives us hope because there is less evidence of the disease and we are making headway against our captor. LEON may not be as dashingly handsome and will not sweep us onto the dance floor for a tango or two, but he is more faithful and gentle so when he leaves it is not as devastating as being dumped by LEON. NED can kind of promise you the world and delivers nothing real, whereas LEON supported us and delivered hope whilst making no big promises.
Since I have been diagnosed with MBC I have not encountered NED, but LEON has been my companion for over four years. But you may ask, how was I introduced to LEON in the first place? Did the medical profession bring you two together? A Big Pharma company? Actually we were brought together by Prof. Jane Plant through her book Your Life in Your Hands. The whole subject of alternative and complementary medicines and treatment is very controversial in the world of conventional medicine, but conventional medicine just told me I was incurable and any treatment would be palliative. ? I was 47 years old and they have just written me off.
Whether or not you wish to follow an alternative, complementary or integrated approach is totally up to you. I am not a doctor and you should follow the advice of the doctors that you trust. Sadly I don’t really trust them, and because NO ONE was going to give up on me before even my 50th birthday so I went out and found my own hope. My hope is not based of anything other than diet and nutrition by using food and supplements to nurture and strengthen my body and immune system. I must also say that I do still have conventional treatment in the form of an Aromatase Inhibitor and four weekly infusions of Zoledronic Acid (Zometa) which is a bisphosphonate to strengthen my bones, but I only began to feel and get better when I integrated my conventional treatment with diet and nutrition. As I have said this is controversial, though why a good diet that cuts out foods that encourage ER+ breast cancer can be controversial heaven only knows. Hippocrates said ‘Let food by thy medicine, and medicine be thy food’. What is so different today? Science wants to tell us that obesity is a prime cause of pretty much any cancer, but mention treating cancer with food and nutrition! Heresy! Science wants to tell us that environmental factors help cause cancer, but mention Organic Food and non-GMO food?! Heresy!
Maybe I see NED as being the scientist and LEON as the organic farmer. One has the power to destroy everything in his path, and the other will nurture you. I know which I prefer. LEON, shall we dance?