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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I have been thinking about this recently, I have been thinking about it a lot. It was said to me recently and I was hurt by the words and the implication. In my head I have always been generous and kind, in my head I always put the wants and needs of others before mine so how can I be selfish, I really can't? It has been swirling around my head because I have changed as a result of my experience, I know I have changed and whilst I never really wanted to look at myself too deeply before I realised that by writing this blog I had started to do that and maybe this was the place to start looking to see if it was true. I went back to the start and read through it all, I went back to the places where things looked and felt bad, to where I didn't know what would happen and what the future held. I see that I really did break, that I stopped being the man I was before I walked into the hospital on February 11th 2013, that man and his thoughts were now gone and if I'm honest he wasn't coming back. How could he? He genuinely felt he was invincible, he had never considered his own mortality or that life would be nothing but long, happy and an adventure. That was all gone with those first 6 words, well one of them anyway, malignant that was the one that changed all of that. So I had changed, I knew I had changed so what sort of man am I now? Am I now a selfish man? How have I changed? Is it in my thoughts, my actions, both? I have written about the physical things it took away from me and also how it had altered me mentally. I have written how I struggle to be alone at times, how it makes my mind wander down roads it doesn't need to go down, but also how I do appreciate my life and how I want to survive, to be happy, to love and to be old. But what has this got to do with being selfish? I have always wanted to control my life, to make my decisions, to make my fate, to choose my journey and because of that I guess I have always wanted things done how I want them done. I have never suffered fools gladly, well more truthfully those I considered fools. I am outspoken and people do know where they stand with me. I don't lie but sometimes the truth is not well accepted and that maybe makes me appear arrogant and maybe selfish. That's not the selfish that was meant though, it was the selfish where I only think of myself, or where I only think of myself before others and that is a different feeling. A friend of mine split with his wife as she went NED and says it was because she was selfish, another friend who is in remission said that he felt a lot more selfish these days and then I really started to look at myself. Everyone who is NED that I have met have all found a new and probably more intense love of life, we appreciate it, we cherish it, we know what it means to stare our mortality in the face. That's not a quick life flash in front of your eyes moment when you are in an accident or something dangerous happens, it's a long slow look at it whilst you go through diagnosis and treatment, its hours, nights, whole days spent worrying about what it means and even making plans in case the worst happens. Then you get told its treatable, you can have a future. It's here I always think of those worse of than me, I know how lucky I am to be told that, I do still have a future and for that I am grateful to whoever I need to be, I could of been a lot worse off. So after you have been told it's treatable you have your treatment, all the time worrying that this time, for you this treatment won't work, that you have built your hopes up and the plans you made you will need after all. Then comes the NED appointment, you have beaten this, you have won the battle, you have to be happy, everything is over, life is normal..... This is where the above picture comes in. There are some that can live like that afterwards, life is normal again but for me and for a lot of people I talk to it's not, it never is normal again. I couldn't be happy because my biggest fear was that it would come back, that the next time it would be terminal, my life would not be the long happy adventure I wanted it to be. I would only have limited time to live and I would have to do all of my living within that time.
How can I explain that to someone who has never felt that way, who hasn't stayed awake all night because there is a real chance of death being just around the corner, felt the fear of it, felt the guilt of leaving the ones we love behind to grieve without us being there to console them. I'm sorry to say this but unless you have been there you really can't understand it, you can imagine it but you can't understand it and this is where I think the "selfish" thing comes from. I lost all control, or what I perceive to be control of my life the minute I was diagnosed. I can't explain how that feels, yes none of us really know when we are going to die, but I have a real chance that something I can't control can come back at anytime and put me right back into those long lonely nights of wondering and planning. I can't do anything to prevent it, I just have to accept it. That's hard to take so maybe just maybe I want to control the parts of my life I can. I have said before that I think about cancer every day, not one day goes past where I don't think about it and about it coming back. I can manage it better these days but it is always there and underlines a lot of the decisions I make. Those decisions are based on what my future can hold and what I want it to hold, they are based on me being happy, on me living the best life I can for as long as I can. I don't want to be miserable, I don't want to be cautious, I don't want to have my last day on this earth full of regrets for the people I wanted to spend time with and the things I wanted to do. As I wrote earlier, as in the Noah and the Whale song "on my last night on earth, I'd pay a high price, to have no regrets and be done with my life" that's me, that's my only aim. Maybe that's where the selfish comes from, I think it does, I really do. I want to live, love and be loved, to smile and laugh, to see the places I want to see and fit it all in before I run out of time. There is nothing wrong with that and I won't apologise for it. I want to control my life so that I only experience the good as well, so I try to control it to make sure all the situations of my life suit me. Please don't think that has stopped me thinking about others and wanting the people I love to be happy, I probably want that more than anything! I want them to have nothing but good memories if the worst ever happened, I want them to know how much I loved them, what they meant to me. I guess this is the battle raging in my mind some days, that and the fact that the "normal" is difficult for me to get excited about. Work, bills, hum drum life is not what I want to think about, problems that once seemed impossible to deal with don't feel so big anymore, money doesn't seem important why would it? No amount of money will save me if the cancer really wants to win and take hold, it could pay for the best treatment but that won't necessarily be enough. This isn't a pessimistic look at life, it's not an optimistic one either, its just mine, just me, trying to make sure that in the end my loved ones know I loved them. Whilst at the same time I make sure when I look back I have no regrets or feel I missed something in my life. I guess in a way I am selfish, I want everything, I want everything and I want it now, I don't want to wait because maybe I won't have time to. Who knows, certainly not me, I guess I will just have to try and be more patient. 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. This subject of this chapter may seem a bit strange, some of you may wonder why I am even talking about it, wondering why its important on this journey. When I tell some people, especially others who suffer from high scanxiety levels, the ones that go through this and for who it is an ordeal, just like it is for me, they look at me like I'm daft but I hope I can explain why I think I'm not.
When my 2 year check up came around I decided that I would go by myself. I went completely alone, out of choice I wanted no one with me. I decided that I would face one of my biggest fears and probably what was currently one of the most important days of my life without anyone there. I had been running it through my head for a couple of weeks, should I? shouldn't I? Would I be able to cope? Would I find it easier? What do other people do? Everyone else seems to have someone with them. What if they tell me it's back? They are also the questions that people ask me when I tell them I went alone. Most people can't understand it, it seems a strange thing to do, almost unheard of by the people I have spoken to about it. Maybe it's not unusual for you, maybe you go alone or you know someone who does? If you do I would love to hear the reasons why to see if they are the same as mine and if they're not then I would love to understand why it suits you better. I'm also asked "But don't you get nervous?" Of course I get nervous! I suffer from scanxiety like anyone else, I've written about how bad it is for me in this blog. Even as I get stronger and it is not as bad as it was, as soon as I get into oncology outpatients my heart beats, my mouth goes dry, I either can't shut up or to the other extreme I won't talk. I tap my hands, fidget, stand up, sit down again, huff and puff and generally just make people around me angry. If I'm honest it starts in the x-ray department, I look for signs in the face of the radiographer, clues in the words she uses or how she reacts to me. Does she change after my x-ray is taken? Does that mean she has seen something? That's what I thought as I contemplated going alone. As I sit in those rooms I am always in my own head, my own thoughts, my own feelings, everyone else just fades into the back ground. That's why I thought that if I went on my own I could sit and wallow in those thoughts without thinking about others. Wallow is probably the wrong word but the selfish part of me just decided it might be easier for me to go alone. Then I could be in my own thoughts, completely in my own thoughts. That seemed like the best way for me and that was what decided it in my mind. I have also been asked "what if you have questions, what if you forget them, having someone there could help?" I have previously only asked questions that relate to the here and now. I never asked what the stats were, I never asked what the diagnosis meant, I never asked about stages or types and I never asked what the options were. I asked what was the plan? what did I need to do? where did I need to be? Did I need to do anything else? All I ever needed to know was what happened next, not after that and not what it meant. That would be the same again if it came back, what do I need to do now? I would not need to know more than that. I also know what the survival and recurrence rates are now, I now know that I had a stage 2 intermediate tumour. I wouldn't need to know what type and stage any recurrence was, I would need to know what the plan was and what the I needed to do and where I needed to be to be part of the plan. That would be enough, I don't need to know it all I really don't. Again I know some people do and if that's your way I would love to talk about why its best for you, maybe I do have this all wrong. I also accepted that day that if it was bad news nothing will get resolved on that day. If they were to turn and tell me that it was back on my lungs or in my leg they were not going to operate or give me treatment there and then. Would I have been upset or scared? Of course I would of, but I have been there before and if I'm honest I do expect to be back there again one day. When I do what can the person with me do at that point? Last time I couldn't think, hear or listen anyway. I didn't speak, I didn't want to until it had sunk in so I guess I would react the same way again. If that's the case maybe that bit of time alone will help me gather my thoughts so that I am ready to talk by the time I leave the hospital. I may be ready to find a way to tell those who love me that it's back and here we go again, back on the rollercoaster, back in the fight. This doesn't mean that I don't want or need support. I have written a previous chapter on how important it is to have support. Family, friends, other people who have been through it, they are all critical to getting through diagnosis, treatment and life afterwards. For me the man who craves control over this situation, any opportunity I can get to gain that control or even a part of it I have to take it. I know now that this part of my healing process, losing control was such a big part of my downward spiral that any gaining of control was and is a big part of the climb back up. It felt like gaining some independence again, I had always liked having people around but didn't like having to admit I needed help. Doing this with no help was like a part of the old me was back. I wasn't completely alone that day, I had my phone with me and as I sat with my cup of tea, you see the same routine as always, I was texting and emailing, looking for support and getting it, my mind whirring but trying to keep my messages light so as not to cause worry. I also sat back in my chair staring into the sky, it was really blue that day, warm and with a breeze and as I felt that breeze I started going into my mindfulness, into "the pause". It calmed me, showing me that it really did work, well until it was time for the walk to Oncology Outpatients anyway! I've written about the appointment before so I won't go over it again but when I left that day I really did feel like an part of the old me was back. I had faced my fear and I had won. It was another small battle but it was still a battle I had won. It has given me the confidence to know that if I want or need to go alone at any time, then I can. I can do it. I can do it because I have done it before. Of course I can say this because I haven't been told yet that it is back, I really hope I never get told that. I just hope that if or when I do I can still find this amount of strength but until it happens I will never know. I will never know for sure until it happens but I can hope and I can believe that I can. |
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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