When I decided to write this blog, the exact when comes later in my story, I decided that I would have to be completely honest in what I wrote and most importantly with how I felt at all stages of my journey. Now I knew that it would be difficult to write and also at times difficult to read for some people, but if it could help just one person by helping them realize that they are not alone in their thoughts or feelings and that someone else has felt or thought that way then I had a duty to put it up here. I guessed that at times I would make people laugh, possibly at times cry and probably at times angry, I've always had that effect on people....! In all honesty those and a big dollop of embarrassment are probably what I have felt and feel now as I write all this down. All I ask is that you don't judge me, not until I have completed my story on my journey to where I am now, I have a very different outlook now, massively different, I can face my future now, I see a future now, no matter how long that future may be, and that future will be full of love and happiness.
Yesterday I had a chat with Steve on Twitter, he has been great supporting me and this blog and has kindly invited me down to meet him and the support group he is connected with. He was worried after the last couple of chapters about me meeting the group. I'm guessing that he was not sure how I would react to people. We talked a little and I tried to explain the basic essence of what tonight's blog is all about and how I have changed during my journey and how I really am looking forward to meeting him and the group. After that chat I thought a lot today about the recent chapters and wanted to write this one as I felt that this part of my journey and how I got here needed a separate chapter. There are some very dark places that my blog goes to, they're there because I went to some very dark places, It's really difficult putting them here because some of the old feelings come back when I write them. I have fought hard to clear those thoughts as much as I can, yes they still come back from time to time and I can manage them now, but writing them and reading them gives them some power and I go back to how I was and how I felt. If I don't put them in though someone might be having those thoughts, might be feeling that way, they may be laid in an MRI scan thinking of their funeral or sitting up all night looking at their kids wondering if they will make it out of this. They may not want to talk to someone or feel that they aren't brave because they can't just deal with it like some do, and it's for them that I write those parts. Them and for me, to remind me that no matter how bad it looks there is a better time coming, it may not be perfect but it will be better than it was. I needed to go that low before I could come back but I hope that by me talking about it maybe one person won't have to. The problem was that I was always a very private person, I struggle to talk about things that bother me and I'm also a person that doesn't like to show any weakness. It's not an arrogance thing it's really not, I have always been in very "alpha male" types of institutions and jobs. I went to an all boys school, then the army and finally into construction and those places didn't really allow for any show of weakness so I had learnt to never show it. I had also been very much in control of my life, I had always decided what was best and then I lived with those decisions be them good or bad. They were my decisions and they meant I controlled my life and where it was going. After my diagnosis all of a sudden I was helpless, I had no control over my life and if there would be a future or not. That lack of control was the real problem for me, the lack of control on whether I would live or die. That lack of control meant that I was weak but with my personality the way it was then I had no way to show my weaknesses, I couldn't show any weakness or fear and that's why it consumed me. I know that none of us actually have that control, that life is short and I could be involved in a car accident or get hit by a bus, but we do all have that illusion of control until that illusion is shattered. If you have never been told you will die in an amount of time or that you have an illness or injury that gives a real possibility of death you still have that illusion, you can eat healthy, go to the gym, not smoke etc.. and all that gives you the illusion of control that you won't die soon, that you are controlling it. I can only assume for others but that first time they told me I had cancer that illusion and my control got smashed into a thousand pieces and can not be fixed and put back together now. It can be altered and fixed to work in a different way but it can't be returned to it's original state. If you add the lack of control to the resistance to show any weakness and admit to wanting help you can see where my troubles began. Right there in that instant but built from years of developing who I was in many different places and times. That was the first battle for me, acceptance that I actually needed help. Support groups were offered to me, right at the start my CNS Nicola knew they weren't for me. I instantly said that I didn't want to know any statistics or "what my chances were", I wanted to ignore them and just focus on what I needed to get through the next bit of the journey that I had. I didn't fear death as such, I was scared of the mess me dying would leave behind and the guilt of leaving behind people I love. I still have those feelings, the fear and guilt of who would be there to pick up the pieces for the people who love me when I could no longer be there to pick up the pieces!! This is going to be another embarrassing and maybe horrible admission, I didn't want to be around incurable and terminal people back then and I avoided any situation where I may have been because I did not want to look at my future. I could only see that in my future and because when I did I went into a full panic attack and lost all ability to cope with my situation I didn't want to have to deal with that so I ran away from it. I could not understand how they coped, they made me feel a failure for not being able to cope with a diagnosis when they were in such a worse place with so much more to deal with, and they handled it with strength and dignity. I feel sick writing the last couple of lines but I have to say that was how I was because back then I was like that. I was so scared of my future and so selfish and so determined that I didn't want to die that I couldn't be around those facing it. I knew that at groups there would be people who were in that situation and I didn't want to have to look at myself after meeting them and knowing that they were better people than me. All I wanted to be was strong, brave and positive but I just couldn't, on the outside I put my work face on and dealt with it whilst inside I was in turmoil. That's where my blog is up to so far on the story of my journey, it's nearly at the point I broke, the point where I really hit the bottom so to speak. I knew I was heading there after I left mindfulness, it was almost an inevitability after I gave up on the mindfulness group. Mindfulness had given me a tool to block out the feelings at that point but I was missing the point completely, I shouldn't have been blocking them out I should of been processing and dealing with those feelings and using the mindfulness to support that, I was missing the very core of the mindfulness message. After I went to the bottom I went into therapy and worked with a psychiatrist on cognitive behavioural therapy, that's going to be a chapter in itself and I don't want to talk about it too much here because it is a massive part in me starting to bring myself back. In the end the only one who could bring me back was me, only me. By forcing me to face those fears, by making me think about dying and what that meant, it made me stronger, I still feel sick and my heart races if I think too much about it but I can bring it back quicker, I can talk myself down with the techniques they taught me and that brings some control back to me. With me I have learnt that it's control, I have to believe I'm in control and then I can cope. I also have to say I know myself both physically and mentally so much more now, I understand myself, I know my fears, my hopes, my strengths and my weaknesses. I feel things more strongly as well, I feel love stronger than before, I feel hope stronger than before, I want my future more than before, I want to live my life to the very fullest and I will. This is what led me to join the sarcoma community, to reach out to people who knew what I had gone through, who understood my feelings and could relate to the pain, fear and yes sometimes the humour of a cancer journey. I want to support that community now and when I gave my first public talk on my journey it empowered me to take the next steps such as this blog and registering to be a sarcoma voice. I want to be involved now, I want to hear people's stories and help those I can. I want to raise awareness and money, I want to make people know what sarcoma is, so that you don't get a quizzical look when you say the word and I will continue to try until we win that fight. I guess that what this chapter really says is that my journey was made harder by not talking, by not admitting I was afraid, by shutting myself off. Now for you that may be the best thing, that may be the way you are going to deal with it but for me that idea was an illusion in itself. All the time I thought I was winning I wasn't, cancer was. I found in the end that having people who wanted to talk to me and in return me wanting to talk to them was what brought me back and gave me my future again. Yes mindfulness and CBT gave me some extra tools and I value them greatly and use them daily but it was love that made me find my strength. It was love and the finding of hope that made me believe that there was a future and it is a future that will be lived.
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I've been working on and writing some more of my story recently but the reality of life, work and commitments has slowed me down as I've juggled what I have to do and what I want to do. This was always the normality that I craved during treatment and immediately after, I've had some reminders that I had once had a Sarcoma but they will be talked about later as part of my story but really I've just been incredibly busy, with loads on my mind and Sarcoma or Cancer wasn't always part of those thoughts recently. In this time I've also been reading through some posts and stories on a Sarcoma Facebook group to which I belong, speaking in messages to Steve about support groups and also to a couple others who I won't name but sincerely hope our chats have helped a little. Today is also 9/11, a day that always makes me consider life, love and loss, a day that thousands said goodbye to their loved ones not knowing it would be the last time. All this has led to a little collection of thoughts in my head and with the assisted dying vote that was held today these thoughts have been nagging at me to be written down, to get out of my head and see if I can process them a little easier when I write them and not just think about them. I'm going to start this collection with a video that appeared on one of my social media timelines this week, I really hope they don't mind me sharing it here just as I did on my Facebook page. I was going to say you may not have a Facebook page or be a member of a Sarcoma group so may not have seen this one but the chances are you do at least have a Facebook page, you are reading a blog so why wouldn't you have a Facebook page!! You may not be a member of a support group on there though, I mean I only joined a group last month, and that's after 2 years in remission. I want to put it here because if you haven't seen it you should, this is a story that needs sharing. This video and the stories of others I've read have made me realize how lucky I was with my diagnosis, I thought I had suffered a large tumour but when I read and hear some stories mine was small in comparison, absolutely tiny. Now that to me though doesn't lessen my story or my feelings because they are mine, they were my journey and that journey has brought me happiness and sadness, it has created the person I am now and it was the journey that scares me still. But when I read those stories of tumours the size of melons, of reoccurrences, of people losing limbs or the inoperable tumours and the loss of loved ones my heart feels for all of them, it feels for everyone who has been touched by this disease because I believe you can only sympathise if you have never joined the "cancer club" you can't empathise because you will never know how it feels to have cancer until someone tells you that you have it.
This also brings me on to the assisted dying debate and vote that was held today, I say this again now, I do not know how it feels to be living and knowing for definite that you only have limited time left in this life and I am so incredibly grateful for that. I can sort of imagine because I have had those worries as I journeyed through diagnosis and treatment, but I have never been told it's inoperable or that I am terminal so I can't say I can speak for those people I can only offer my thoughts from my experiences. I always thought that my desire to live would see me through to the very end, it was the thought of leaving my loved ones behind that created my mental health issues and if I'm honest that thought and fear is still the one that crushes me if I dwell on it for too long. Since my friend died though I have been thinking of what someone who had seen him close to the end told me, "he has said he is ready to go Daz", was what they said and then I could see maybe why he had come to that. He was in pain, he slept a lot and he knew his time was coming, I guess he couldn't face going on like that anymore. He had always wanted to keep going but I guess in the very end as it got worse and he knew what was to come he made his peace. This is why I can't understand why the politicians get to decide and not the person about this very important and personal decision, how can someone who has never been in that position be the right person to decide what is right? If you have never been told you have a terminal illness you can't decide what is right for the person that has. Yes we can campaign for better standards of care for terminal patients, but lets be honest we shouldn't have to campaign for that it should be the norm. If that person decides they have made their peace with their loved ones, family, friends and their life they should be allowed to make what will be their last decision. If a person wants to decide to fight until they get to the end that is their choice and if a person decides that they can't fight what is a battle that is already lost anymore then that is there choice as well. I pray that I never have to make that choice and "touch wood" as they say I haven't even had to consider a second bout of the disease but if I had to I still don't know what I would think or decide because I haven't ever been there, I like to think I would give it all I've got to the end but that doesn't mean I can't sympathise and understand with those that can't. I hope this bill gets another reading and vote, a nation and it's people are judged on how they treat their ill and those that can't help themselves, what did today say about us? Lastly today is 9/11. 14 years ago I was a soldier on what was my last operational tour. I was in Macedonia on Task Force Harvest, a weapons collection programme and amnesty to stop the trouble there developing further and leading to what could of become another Bosnia. I had been out working all morning and as we got back to base someone came running over saying that a plane had hit the twin towers. We went and sat in front of our one TV, pretty much the whole squadron did and we watched as it unfolded. We already knew deep down that some of us would be off to fight another battle, not me I had only a little time left in the army, but those sat around me almost definitely would. I still shudder when I watch it now, all those people, the ones who didn't know before they died, the ones who knew they would die, the ones who decided to jump instead of, well just instead of. I hope they are all sleeping well with dreams of nothing but good memories but it also takes me to something I wrote earlier in this blog. That goodbye you have just said, that kiss you have just given, that hug that made you feel warm or maybe that angry word you have just spoken may be the last time that person is in your life. If you love them don't let an angry word be the thing you both remember as the last thing, let it be a hug, a kiss or an I love you. I'm sorry if this chapter is a bit preachy or maybe you disagree with something I have written here but as the bio says, I'm no expert, just an ordinary bloke trying to make sense of his thoughts. As always I'd love to hear from you or discuss anything written here, and of course thanks for reading and I promise to get back to my story soon! |
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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