So my weekend didn't go quite as I hoped, an unexpected collision between my head and a bit of 4" x 2" wood mean't headaches, not feeling wonderful and unfortunately missing the first meeting of the West Midlands Sarcoma support group, something I was actually looking forward to especially with this week being Sarcoma awareness week here in the UK. I also know that whilst July is Sarcoma awareness month in the US they are currently petitioning for it to be made official. I'm not sure if signatures outside the US count but it can't hurt to sign their petition and if you are reading this in the US and you are not aware of it the link is here.. Here in the UK today starts our week, a week that we can use to raise our voices, our chance to shout about Sarcoma and raise awareness about the thing that changed our lives. The fantastic people over at Sarcoma UK, everyone who completes an event, everyone who talks about it with their friends isn't just doing it for a week, they do it all year round and that is what it really needs to get our message out. For this week though I hope everyone can do just one more thing, be that sharing the Sarcoma UK video, signing the petition above, taking a golf ball to your GP as part of the "On the ball" campaign, or just putting a link or message on your social media pages. This is the new Sarcoma UK video, please watch it and share it far and wide, the statistics speak for themselves, over half the population have never heard of Sarcoma and only a quarter know that it is cancer! Let's be honest how many times have people looked at you strange when you said "I had / have Sarcoma"? "What is that?" is always the response to me, always apart from once, that is a worrying thing. I have heard too many horror stories of misdiagnosis or delayed diagnosis that has led to complications. The magnificent people in the NHS saved my life, no ifs, ands or buts about it, they did. I was lucky that my GP had seen a sarcoma 15 years before, let that sink in, 2 in 15 years, just 2! It is no wonder that some are unaware or unsure but that doesn't help those that have had to suffer more because of it. There are also people who weren't sure what to do or ignored the symptoms, I was going to, I thought I had a dead leg or a torn muscle, I don't know how long I would of left it if my wife hadn't told me to go to see a doctor, maybe months, I dread to think what may have happened or been the outcome then. I was sent straight to a Sarcoma Specialist after my ultrasound was inconclusive by my GP because they were aware, another lucky moment for me whilst it is something others have again had to fight for. That quick and decisive action helped to control my outcome. I have talked of good luck and bad luck before and how I'm not sure there is such a thing, in my case maybe it wasn't luck but it was because people around me and in my treatment path were aware of Sarcoma. If that's the case, and I think it is, then I owe it to the world to shout loudly because awareness is key to saving lives, to finding cures, to stopping further heartbreak. Awareness saved my life, it really is that simple. This is me, right there, this is the life they saved and this is the person behind this story. I have put this hear because it leads me onto the other part of awareness that I see, the part that relates to a person, a man, a woman, a husband, a wife, a father, a mother, a brother or sister. Sarcoma happens to real people, normal people and they all have a story to tell. Awareness is not just facts, figures, statistics and funding. Awareness is also our stories, our feelings and our emotions. I know that I have got frustrated when I felt that people didn't know how to speak to me, to act around me or that they expected something different. That's not their fault, there is still a tendency to see cancer as an end, to whisper it's name in hushed tones, an uncomfortable feeling as people digest what you have just told them, that you have or had cancer, you know the one, the head tilt one! It happened to me just last week, 3 years on and still happening, it's not their fault it's just the way it is.
My tattoos were being discussed, particularly the one across my chest, It says "The only thing that's left to do is live", I've talked about it before on here but this person asked me "That's nice, is it for someone who died or could of died?" I sat looking a bit uncomfortable and then my friend said "Yeah it's him". I smiled "Yes it's me, I had sarcoma, cancer, 3 years ago and it's a little reminder to myself". The head tilt appeared instantly "Aww I won't look at you the same way again now, Aww I don't believe it" Straight back to the conversations of 3 years before and that's why I want our stories heard too, that's why the awareness of our stories are so important. Yes, I had cancer. There, simple, straightforward and a fact. It has changed me massively, another fact. I see and feel in a different way, not all good and not always constant. I am still me just a different version of me but the thing I don't want is people to treat me differently just because I had cancer. It is not needed because I can pretty much do most things that I want, not all but most, especially on my good days. My bad days are a little different but even on those I don't want sympathy just because. All our stories are different, all of us are dealing with it in a different way and that is something people need to know and understand. All of our stories can inspire, can comfort, can change the life of someone who is new to this club or dealing with it for years. The strength in the stories of others I have met have shown me that I am not alone in my thoughts or feelings and have helped me to process and deal with mine. The strength shown by those who have lost loved ones inspires me to try and be a better man for those I love and who love me, I'm not always but I am always trying. There are two links below of people sharing their stories, please click on them, read them, they say so much about this life with Sarcoma, they show how we are all different, that we all have fears but also strength. Awareness of our stories will show the world that Sarcoma and all cancers should not be talked of in hushed tones, that way only gives it strength through fear. Talk about it, make people aware of it, the symptoms, the treatments, the research needed but also make people aware of the feelings and strength of those who have fought and continue to fight because that can only inspire us all to keep fighting back, to not stop until we win. I go back to when I was first diagnosed and some words that were said to me "Cancer is going to win some days, and other days you are going to" That's the truth, some days cancer does win but every day or every battle we win we get closer to winning the war.
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Darren EvansOn Feb 11th 2013 my life changed forever when I was diagnosed with a myxoid liposarcoma of the right thigh. This is my version of my life since then. Archives
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