24/4/2016

Advocacy Connections

I have had about a month now to reflect on my trip to Brussels and what it means to me and what i have learned from the experience. On a personal level it was wonderful to meet a whole group of people that I had only known online that were in a similar position to myself medically speaking. Cancer as I have heard repeated so many times, not just from melanoma patients, is a lonely and at times very isolating place, sometimes it is hard to lay it all on the line, your fears and anxiety are often so overwhelming to yourself its a self preservation exercise keeping it to yourself and it’s also to protect those nearest and dearest who are worried enough, in your mind, about you, you never want to add to the burden that has been inflicted on the family already. So to be able to sit in a room and talk openly and freely in group and individually about this disease without fear of hurting anyone’s feelings was very liberating. It was also very educational, I learned a lot, but also learned how little I actually know but as someone pointed out none of us has a degree in melanoma but if there was such a thing its probably the patients that should receive it first as they are the only ones that can really understand what it is like to live with this thing.

So that is my goal to learn as much as I can but WHY you might ask isn’t it better to just go to your appointments trust in your Doctors and get on with it, leave the clinic put it behind you as much as you can. There you see is the conundrum, how can you get away from something that is always with you, and I firmly believe now that Knowledge is Power, I look back on when I was first diagnosed twelve years ago, and I can see clearly mistakes that were made possibly by myself from ignorance to the seriousness of the situation, but certainly also by health professionals I came into contact with, having knowledge gives us the strength to speak up for ourselves and ask is this right? Is this normal? Is it possible to explore different options, where can I get advice about this situation? Above all I have learned from MPNE, that it’s OK to question but it is even better to know the right questions to ask!!

So that’s my plan, but this whole situation is much bigger than me of course I am but a “cog in the wheel” our Facebook Support page and getting involved in different groups to raise awareness comes in to it. It’s always primarily my number one reason if at all possible in any small way to contribute to no other person having to go through this (I won’t call it journey because believe me it’s no Cruise) I know it’s a hard sell especially in Ireland we have such a love affair with the sun when it puts in its rare appearance, we are mostly ill prepared for this apparition when it happens and abandon all reason in the pursuit of its lovely warm welcoming feeling on our skin. It’s such a fantastic feeling it’s hard to comprehend how something that feels so good can in fact be so deadly dangerous. It is unfortunately a double edged sword, I know people have Cancer fatigue they are fed up of being told the endless list of things that can cause it, some we have no control over and we have to turn over to fate, but don’t we have a responsibility to our selves and our families to protect from the things we can, the change in attitude to smoking is a excellent example of this in action. It is something I feel passionate about, it’s not about living like vampires afraid of daybreak and hiding away it’s small changes making a big difference and leading by example so it filters down to the next generation and becomes common practice without thinking .

http://www.melanomapatientnetworkeu.org/mpne-members.html