So I was flicking through Twitter not really reading it but scanning and I saw a tweet talking about Xmas number 1 and at first thought it was another campaign to stop The X Factor claiming it again but then I saw the name and I watched it. It is this song, the one below... I can't lie, there were a couple of tears watching it and I hope the following words explain why. This is a kind of difficult time of year for me, it has been since 2013 and I don't think it will ever change and although the reason for that may seem daft it is for me unfortunately just there and won't change.
I find this time of year difficult because there always seems to be a lot of reflection for me, I look to my past, my present and my future. Armistice day and Remembrance Sunday takes me back to my life in the Army and to my friends who are no longer here, I go back to the laughter and jokes, the good times and the bad ones, the memories are still as vivid as the day we made them. It was also this time in 2013 that I broke, when I couldn't take my thoughts anymore, when I lost myself and had to admit that, not just to myself but to others, and going back there can turn my thoughts dark again. It is also my birthday, and I think we all look at ourselves and our lives on that day, I turned 42 yesterday and the same thought I had last year and the year before and the year before that was back as I looked at my cards over a coffee. "What if this is my last birthday?" I don't know why and I know that I shouldn't have that worry, I'm "lucky", I'm NED, I'm heading to 6 month checks and there is no reason other than statistics to make me worry but I do. Its there and that leads me on to those tears because I have recently spoken with and heard the stories of others not in the same place as me. I have heard and read the words of them and the people who love them and as always their strength, dignity and love is inspirational. I am not in there situation and can never expect to understand how they feel I can only imagine, I hope I never know, I hope that those who love me never know it either but if they do the chances are a Hospice will be involved. I have only been in an Hospice once, to visit someone just before their fight ended, the part of this journey I can't allow myself to think or dwell on, that is embarrassing to admit because again I see the strength of the people who have to and I don't think I could be the same, not knowing what I know now about how I've coped so far. There is a moment in this video, a nurse sprays perfume onto a lady, she has I guess asked for it and I guess it makes her feel herself, normal, just for a second and I think that is such a touching moment but also a reminder that this is real and happening to real people, mothers, fathers, brothers, sisters, husbands, wives, real people, real families and it reminds me how much I hate this fucking disease. From the moment Sarcoma, cancer, entered our lives our normal changed, it will never be the same again, our thoughts our hopes our dreams changed. Yes some of our hopes and dreams remain the same but I'm sure like mine some have changed beyond all recognition. I had to learn to accept that new normal, I wasn't exactly the same, I never would be but some things didn't change. I still love music, I still want more tattoos, I still want to visit Hawaii, I am still me. That is what I see in the lady with the perfume, I guess that is part of her from before, the person she was and still is, maybe that is the thing her loved ones think of when they think of her or what they will remember in the future. I may be wrong of course but I hope that no matter what happens in my future there are little things about me that bring a smile to the faces of those closest to me. I wish none of us had to see this new normal, that nobody ever had to support a loved one as they face it, I especially wish that those conversations I haven't had to have would never have to be had again. I wish we could beat this disease once and for all, for all of us, but unfortunately at the minute we can't so all I can do is wish as much love, happiness and peace as you can have no matter where you are right now on your journey. I am lucky, my worry has come and gone ( well not completely yet...) this weekend, others are not that lucky so if you can I guess maybe we should try and get this to the Christmas number one spot, let's raise some money so people can continue to be who they are, let's raise some awareness and get people talking about the part of cancer that doesn't make the adverts, their twitter page @ChoirLondon tells you how.
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It's my youngest son Charlie's 3rd Birthday this week and he is super excited, he thinks Santa comes on his birthday, you can try telling him different if you want he is having none of it. It's a big day, his 3rd birthday, he's now officially a big boy and not a baby but last week there was also another significant anniversary in my life and the lives of those who love me. It was 3 years last week that I went to the see my doctor with a funny lump in my leg. 3 years since I joined the club.
I can still remember it, I walked into the surgery in shorts and flip flops without a care. I didn't think I had anything to worry about so why would I have been worrying. The only brief moment of concern was when she said "OK, take your shorts off please" because I normally didn't wear anything under those shorts and that may have been awkward! Luckily I had but I can also remember feeling very conscious of the doctor knelt down in front of me rubbing my legs and saying "yes, that's different, it feels like it's in the muscle not under the skin". We talked about my weight, had I put some on or lost some? I sat there wishing I had never had that last bag if chips! She believed it to be a fatty lump, nothing to be worried about, if it was we would probably leave it alone unless it was causing me discomfort and then it would be a quick surgical procedure but I wasn't to worry and the ultrasound was to stop me worrying. I've talked about being laid on the ultrasound table and my thought's going to Graham and his eye test because of his headaches and what had happened from there. I really did have a sick feeling in the pit of my stomach, I did feel real fear, it was fleeting and I controlled it, I was 38 a bit chubby yes but generally healthy and anyway that wouldn't happen to me I was invincible. Even when he said I need to refer you as I can't see the centre of the lump the fear was only fleeting, I didn't understand what that meant I mean why would I? Christmas 2012 was a strange one, life was so busy, a newborn and two over excited kids, I was waiting for the referral but not quite sure what it meant, missed calls from an unknown number on Christmas eve but telling myself if it was important they would leave a message. Then the call on the 27th telling me I was being referred to a Sarcoma clinic but not to worry when I got the letter or to google it, just go and see what they said. That was the first time in my life I had ever heard the word sarcoma, I hate the word but now it is just a word nothing more than that, I can read it, write and say it without feeling sick, without my heart racing. I'm not going to rehash old chapters or go through it again but I guess what I'm saying is that 3 years is a long time it really is. Life goes on, time stops for nothing. My life and who I am have changed, at times beyond recognition but I still remember every point of how I joined the club with perfect detail. There is no artistic licence in these words, they are exactly what happened, what was said and how I felt. I can't remember where I was 2 weeks ago, I travel a lot, but I can remember December 2012. I guess that shows just what this sarcoma thing, this sarcoma journey does to us. It changes our lives beyond all recognition, it changes our hopes and dreams, it changes how we feel about ourselves and those around us. I think it makes love more intense, desire stronger, a sense of mortality that pushes us to truly accept we are only here for a limited amount of time and that time should be full of love, wonder, excitement, happiness. It also makes us scared, I can say that because I have spoken to enough people now that even the bravest, most optimistic among us get scared sometimes. For too long I thought that was just me, that I was weak for feeling that way, that I should be stronger, more of a man, people were depending on me, people were a lot worse off than me so why couldn't I shake that fear. That fear controlled my first two years, it changed my life not in a good way, it made me hide, something else I had never done. I had to learn to accept it, to realise that whilst our journeys will be similar they will never be the same because your journey is yours and mine is mine. there is no right or wrong way to feel or to act, we do what we feel and that is all we can do. The last year has been different, I accept my future. I accept a future that will always have sarcoma in it, it will always be a weight on my shoulder and some times it will get too heavy for me to bear. I will need help to carry it but now I know that people will bear it with me and it doesn't make me weak or a failure to ask for help. That is the difference now and I refuse to let any more time go by, not one day, one week, one month or definitely one more year where the fear of this journey stops me making the trip. Everyone says that you only live once, I believed that until it was put a different way to me. You don't only live once you only die once, everyday you get to start again, to start your life how you want it to be. I don't know what the next 3 years will bring but they are 3 years that I intend to live, to enjoy. Even if there are days that I fail, that the load gets too great, that I let sarcoma and cancer get the better of me, I will always get a chance to start again the next day, to take another step, to look to my future and make that journey. |
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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