I've not posted in a while because life has just been insanely busy. The build up to Christmas is always one of the busiest periods of the year for me, it's the one time of the year that I stop work completely, no calls, no emails, no "can you just", it's my time to relax. That means I have to get my workload to a point where I can stop and that is no easy feat!! Add into that 3 kids under 11 years old and the excitement levels they can achieve in the two weeks leading up to the "big man" coming and you can see that whilst sarcoma, my fears, my hopes and my blog are still in my thoughts because I am so busy I can push them down and leave them tucked away. I've said before that used to be my new control mechanism, the way I dealt with things after diagnosis and treatment but it was also how the pressure built and eventually exploded so I don't like to do it for too long these days. It's the 28th today so effectively Christmas is over again for another year, yes I have had the "I wonder if this will be my last Christmas" thoughts and yes they settled in for a few hours but again I managed to control them, I managed to ride them out so to speak and I am really pleased I did because it shows I'm managing to keep making progress with that way of thinking. Although whilst Christmas is over the new year beckons, 2016, new years eve and all the thoughts, reflections and promises made to oneself for the year ahead whilst looking back at the year you had just had. As 2013 started I knew deep down that I had cancer, it was a feeling deep inside me, no that's not a sarcoma joke either! As I sat there on that night I knew that I was going to be in a fight that year, my status on Facebook even intimated it and I prepared myself thinking that whatever happened I would deal with it as I always dealt with things, humour and unbreakable strength. As 2014 started I looked back and realised that I had been right and I had been through a fight that year but I hadn't dealt with it how I had expected to and I had lost a lot of me along the way. I was determined to start again in 2014, to regain control and to rebuild myself in a way I would like, to take control back from cancer and to find happiness again. As I posted earlier in this blog, in 2014 I started to try and find a way, I had some huge ups and downs that year, I had immense highs and I had crushing lows. My scanxiety was still uncontrollable and one of my lowest points was swearing at Nicola, I still feel embarrassed about it now. With support I started to find my way back though, I started to see joy in things, to remember the man I was and start to bring the new version of him closer to the surface. I also started my first tentative steps into the sarcoma community, I started looking at the Sarcoma UK website in small doses, still not about my sub type or statistics but just about the work they did etc.. As I got to the end of 2014 I really was starting to look at myself and life with some more optimism and I was proud of myself. Again my status update on New Years Eve 2014 reflected this and for me personally it was another year, more distance between the present and diagnosis, another year closer to the mythical 10 year point and survival. Why have you gone that far back you may ask? Well for me as I sit tonight and look back on 2015 I have to look at it both in it's own right but also as a comparison to those two previous years because then it confirms to me how far my journey has taken me. 2015 contained some defining moments for me, moments that have reminded me that I am strong, that I didn't fail it just took me a while to get here, that I do still have something to offer to this world, that the future whilst uncertain should not be lived under a cloud of fear and that I can be happy. So what are these defining moments? My first one was the first time I talked about sarcoma and me. The first time I spoke openly in public and not the safety of a therapy room was as a speaker at a charity lunch, in front of strangers and some people who had known about my diagnosis but were not particularly close to me. It was liberating, I could feel some of the weight leaving my shoulders as I described in every detail my journey through diagnosis and treatment, more weight was lifted as people approached me and told me how moved they were by my story and that I should tell as many people as I could. That led to what I think was the most important step for me this year and also in my sarcoma journey to date, the start of this blog. Since July I have been writing down my innermost thoughts, they were never meant to be for public consumption but after some pushing I published them and I have to say thank you to all of you that started to read them and especially to those who have stuck with me all the way through! From conversations, messages, emails and texts I have discovered that I wasn't alone in my thoughts and others out there felt the same way through their journeys too. That helped me realise that I wasn't a failure and that helped me find that part of me I thought I had lost. I've met a couple of people who read this blog and the welcome and friendliness they showed me has meant that they broke down years of barriers and I allowed them almost immediately into my life. I met them at a support group, that is something I never thought I would ever say. I went to a support group for the first time and I also joined the sarcoma community in a way that I would call properly. It is full of some wonderful, strong, kind and truly humbling people and I wish I had joined it sooner. I think if I had opened up earlier I definitely wouldn't have fallen so far and I hope that the conversations I have had with some who have just started their journey has helped them and maybe stopped them falling as far as me. I know we are all different and like I said I'm just a normal bloke but if I have helped just one person and they think I'm a "good" bloke, well then I'm happy, very happy. The one closest to me, the one I love, has also been there this year when things went wrong. There have been some bad times but when I turned to them they were there for me. When I lost friends, when my brain ran away from me and took me back to the bad places they gently brought me back, just some love and a bit of normality was all it took to help me fight those demons. Some words and a cuddle made me realise that I could go on and that the good times would outweigh the bad. There have been times this year I have needed that support, I don't really want to talk about them again, they are all in here, I've written about them before but tonight I'm a bit close to a wobble so I don't want to go there again. I just want to say thank you, to those that love me and those that have came into my life and hopefully will stay. As I look back at the year I also find myself doing what lots of people do at this time of year and that's make plans and promises to myself about next year and where I want it to take me. It will be interesting because hopefully at this time next year I will be able to look back on 2016 and say yes I did it! As I think about it I have found inspiration in a couple of posts that I really want to share with you. They have both made me think about my life, my future and where I want next year to go so please stick with me as I share them with you. This week something stopped me in my tracks and I mean it literally stopped me still as I read it. It was a message left for her daughter by a breast cancer patient who had sadly died that had been shared as a post by her husband. I shared this letter on my Facebook page and I hope you find time to read it if you haven't already. The words in that post were written by in my opinion a truly inspirational woman, her name was Heather Mcnamany and she brought many tears from me, not tears of sadness but tears of, well I don't know what really. I suppose there was some sadness, sadness that her daughter will not grow up with her mother and for a mother that will not kiss her daughter for luck on her wedding day, or hold her first grandchild. It was also the words of a wife that leaves behind the love of her life, you know that one true love that we all search for and the really lucky ones of us find. That special beautiful one that makes our life complete and as cancer patients that one person other than our kids we have that we hate the thought of leaving and hurting by leaving. I also found strength in what Heather wrote, a thankfulness for knowing that true love, for being a parent and experiencing what that means, a strength that even in the end looks to comfort others in their fears and sadness. I found her words moving and humbling, they were almost my words, what I would say to those I would be leaving behind. It's reminded me that we can find solace at the darkest times in our love for others and their love for us, I think love will give us strength when it seems all is lost and for that I am thankful. And while we are talking about strength..... I came across a song, well I say came across, my daughter was singing it and when I googled it I found it and listened to it properly. It's called "Fight song" by Rachel Platten. The words and meaning really resonate, it has an uplifting feel but the words, well they just fit. I was going to link the video here and so I had a look for it on youtube, then I found a different version of it, that version is below.... Strength. These kids have real strength. I sat and cried the first, second, third and well pretty much every time I watch this I cry. It makes me realise again it's about looking at where we are and we we want to go with optimism. These kids have that, you can see it and again their voices need to be heard. That's why I shared their version, it's not just some emotional video, it's sad of course it is, I hate cancer and wish no one would get it, but especially not kids. They should never know the fear, the sadness, they should never have to think about their mortality and this is the reason I want to make 2016 the year I start fundraising at the same time as helping to raise awareness. I will be publishing a just giving page on here soon because I hope to take part in some events this year and I want as much money as possible to go into research against Sarcoma. It will only be by research that we can improve survival rates and prolong life in those who can't be treated for cure. I've got some plans and again I'll publish them as the year goes on and I really hope you can support them if you can.
I want to raise awareness too, that was the reason behind entering the UK Blog awards. I want as many people talking about sarcoma as possible, I want people to know what sarcoma is and not just because them or someone they know has been diagnosed with it. Something like that event could really help spread the word, just the fact that people may be directed here or to others blogs about sarcoma will help us all increase understanding of what sarcoma is and what it means. If you can please let people know about this and the other sarcoma blogs that are out there, get people talking about it, get people reading about it, raise the level of awareness, who knows someone might even go to the doctor earlier and get diagnosed earlier. For me personally next year I just want to be healthy and happy. I want to get to Christmas 2016 still NED. Nothing more nothing less regards my health, I have my first check up at 4 monthly intervals in February and as long as I get through 2 more at 4 monthly intervals they will move me out to 6 months. I can't wait for that, 6 monthly was a distant dream in 2013 and now seems so close I can taste it! Isn't it amazing how our priorities change after a cancer diagnosis, for me now money and success are a very distant relation to my health and I would sacrifice both in a heart beat for good health. Happy for me is to see my kids happy, to see them grow, to see them learn, to share their success and help them manage when they don't succeed. Happy is to continue to feel loved, loved deeply and truly. Happy is to continue to be the new me, the old me is gone I've said that but the new me is not an inferior version it's just a different version. So I guess that will probably be it for 2015, thank you all for taking time to read this blog I really appreciate it and for everyone who has messaged or emailed me you have all changed me and my life in a positive way and for that I am truly thankful. Happy New Year all. x Daz.
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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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