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 don't know if you have ever heard of mindfulness, I never had. I had heard of meditation and Buddhism but never really understood it. When they first gave me a book on it as a self help guide I looked at them like they were out of their mind. I did not do touchy feely sitting in a circle holding hands and talking about my feelings. That was not me and was definitely not about to be me, not any day soon. I got introduced to it by one of the workers at Maggie's in Nottingham, Nicola had met me down there to try and find a way for me to deal with the nervousness and the anxiety I was starting to really struggle with. She spoke with me and told me that I wasn't alone in feeling this way but I had to find a way to deal with it. I had good margins from surgery, the cancer was caught early, I had no mets, and after radiotherapy I had over 90% necrosis in the tumour. Yes I had been a cancer patient, yes it might come back but everything up until now had been a success and that is what I should of been concentrating on. I agreed with her but the fear of a recurrence was becoming all consuming when I wasn't doing something to keep me busy. I had started to fear being alone and quiet because my thoughts always went the same way. The wrong way. I would find ways to not be alone, I would find reasons to phone people, reasons to chat, I hated being alone in hotels and would hope someone would travel with me, even then I hated going back to the room as my head would go as soon as I was alone. They recommended it and explained a little about it, it was to help me face my fears and deal with them without them taking me over. I would have to speak to a man called Dave who ran the courses and he would make the decision as to whether I could have a place on the next one. I took my book home and read it, well tried to, whilst I waited for the meeting day and time to come through. I say tried because it just wasn't me or it didn't seem to be. It talked a lot about people who always thought of the future, who were so busy that life was passing them by, people who were so busy they didn't know themselves anymore, and most importantly it said those people were getting it wrong. Well I know I'm not the only person who doesn't like being told they are getting it wrong!! So when that book said I was, I wasn't overly enthused about reading it anymore, it was an attack on me and how I was..... I was desperate to get better though so when I received a call from Dave asking me to come into Maggie's to meet him, I agreed and got there early, the problem with that was it is such a welcoming place that I was instantly invited into the kitchen to have a coffee and a chat whilst I waited. Yes i know that sounds a horrible thing to say but please understand at that time I couldn't and wouldn't talk about cancer, it wasn't something I could do so being in a room full of people who could, who could with such optimism, and these people being so happy just threw me, threw me right off. I made an excuse and went and stood on the balcony by myself, trying to calm down, fighting to stop myself bolting for the door. It's strange really, I hated being alone and was desperate to speak to someone yet I was avoiding the very people who knew how I felt. Dave was brilliant, he did have a real calm about him, a presence, almost an aura built from what I believe to be an inner strength and peace he had. I liked him right away and he explained a bit more about it and how it would apply to me. He explained it was a method of just being in the moment, being in that place in time, no past, no future, just that moment. He explained it would help me face and process any emotion so that I could experience it but not let it shape me. I liked the idea, I really did, he asked me where I was in my cancer journey and said that the whole class had experienced cancer. That scared me a bit but like i said I really liked him and he gave me confidence in what he was talking about and I decided that I needed to do this and I had to give it a go. I arrived just before the class started on the first day, it said to wear comfortable clothes, shorts and flip flops is what I read ! Yes I arrived just before so that I wouldn't have to engage in too much conversation but that didn't work for me as I ended up in the front chair! I looked around the room and just tried to see who everyone was and wondered what had brought them here, now I have been on enough courses and seminars and I should of known what was coming next.... "So then, let's go round the room and introduce ourselves and what we want to get from the course". I looked up and every eye was on me, "so how's that worked out for you Daz?" my brain asked. I could feel panic rising as I thought "Ok, they have all been through it, they know how you feel, just spit it out" and then I opened my mouth and it started to come out... "Hello everyone, my name's Darren, most people call me Daz and I had a sarcoma in my right thigh. I've had some radiotherapy and surgery and I've been in remission for the last 4 months, my problem is that I am terrified the cancer will come back and I really struggle with my follow up appointments and suffer terrible anxiety. I'm convinced it will come back or they have missed something and I'm sure that it will be terminal and that's that. I hope this course will help me deal with this and learn how to cope". There it was, out in the open, my secret fear, I had said it aloud and it felt very good. I felt safe in that room, everyone knew what I was going through, they all had the same fears and hopes, or so I thought. I had assumed that everyone was in the same situation as me, in remission and struggling a bit to face the future, I was wrong, very wrong. After I finished speaking they all said hello, all smiled, well apart from one man, and welcomed me. Then all eyes turned to the lady on my right. I feel embarrassed to say I can't remember any names from the group but as this blog chapter continues you may see why I can't, and yeah even writing this I feel that embarrassment for not remembering. She started "Hi my name is..., and I have had Hodgkin's Lymphoma, I've had it twice and I'm 28. I know it will come back, I've been told that I just don't know when and I want to learn to deal with that because I have children and I don't want them to see me upset". I looked at her, young, healthy looking, pretty, happy and a mother. She wasn't in the same place as me, nowhere near, absolutely nowhere near and if I'm honest this sat me back in my seat as I started to look around the room again. Had I got it wrong? I started to think I had... The stories continued, one lady had been fighting cancer for 12 years and 4 recurrences, another was fighting breast cancer for the second time and the man who glared at me earlier, well he had been diagnosed a couple of months ago with testicular cancer with secondary mets. He was currently having chemotherapy and in his words "this was recommended to me to help me but I don't think it will, and I can't wait to be worrying about my 3 month check ups". "Shit, I was now feeling very uncomfortable, I can see now why he wasn't overly enthused with my introduction and I could see why he would feel that way. Here I was moaning and worrying and yet he was still unsure if he could beat it. As I have said before, all our journeys are unique, all our journeys are personal and all have an impact on us and the people who love us. At that time in my journey I didn't think that way, I was feeling really stupid being there and what was worrying me although I decided I wouldn't feel bad, I wouldn't feel guilty and then someone else spoke and that just stopped me in my tracks. The lady who spoke was sat in the rear corner, again I don't remember her name and I apologise for that because I should have remembered it. "Hi my name is....., I had a tumour in my right calf and after they found it they discovered it had spread to my brain, I am terminal, I know how long I have left and I can deal with that. I used to be an holistic therapist, you know alternative therapies, and I hope this can help me just relax and learn to experience and enjoy every moment now". I looked at her, we all looked at her, she just sat and smiled. This just sat me back in my chair, she was about my age, again healthy looking, fit looking, immaculately dressed and just with a sense of calm about her. I know I have commented that people shouldnt expect cancer patients to look a certain way and on that day I did but I just couldn't believe it and then another thought came into my head. "They aren't like you Daz, these people have real fears and worries, and what the f**k are you doing here? Look at these people, you are pathetic next to them, look how they deal with it and you can't even deal with being in remission". I sat in turmoil for the next couple of minutes, head spinning but then we moved into the first exercise and this is where I really learnt something. We completed an exercise called "the pause", it's a central factor of mindfulness I believe and it involved sitting in our chairs, closing our eyes, breathing and thinking of nothing else but the breath you take and the feel of the chair against you. I lost myself, it was a feeling I had lost, I relaxed, it just did something to my mind, at that moment it just seemed to work, to be right. We practiced a few more times and we were given some coloured dot stickers to take home to remind us to do the pause. As we were leaving everyone headed down to the kitchen to have a drink together and some asked me to join them. I didn't know what to do, this was the first time I had been around people with cancer in a social setting, and I didn't want to do it, that's wrong it wasn't I didnt want to, I just couldn't, I couldn't talk to these people who were still fighting, it scared me, it embarrassed me, I shouldn't be worrying, I shouldn't be afraid I should be brave and positive like they were but I still couldn't. I made an excuse about work and left, I was gone, into the car and out of Nottingham. In the car though and all night, in fact for all of the next week I thought of the lady with the brain tumour. I couldn't get her out of my head and writing this is bringing those thoughts back, she was dying, the same as my friend Graham, and both were dealing with things better than me. I felt like an absolute failure, how could I be this way? And then I started to worry, nearly everyone in the room had suffered recurrence of their cancer and that was my biggest fear, they all reminded me that it could come back and I couldn't do anything about it. I knew that this is why I was here, to deal with this feeling, to learn to control it so then I could beat it well not let it beat me at least but I was now feeling like I shouldn't be here, that I couldn't deal with being here. I did keep going but as always I developed a routine, an avoidance strategy is what it really was, a way of avoiding everyone whilst at the same time showing willing so to speak. I would arrive just before the start of the session, I would have a bottle of water in my hand so I didn't need to go to the kitchen for a drink and at the end I would say goodbye to everyone and then head for the door after making up some excuse about work. Every time I did it I felt bad, these people knew what I was going through, many were a lot worse off than me and they wanted to help me, out of kindness they wanted to be there for me but I would not let them in. The course itself was really starting to help me relax and find a way to clear my mind but being in a social setting with people with cancer, some of who were terminal was really affecting my thoughts and my moods and I couldn't get them to balance.
I remember vividly one practice that I still use to this day, I laid on the floor, eyes closed, arms out, breathing and concentrating on the feeling of the floor beneath me, I was told to clench and unclench my hands whilst thinking of movement. As I laid there I felt myself connecting to the floor, it was just there, a feeling and then movement came into my mind, my mind took me to a situation, a place of movement where I always relaxed. I was stood in the sea, the water to my chest, my arms out to the sides with my hands skimming the surface. I was looking to the horizon and could see nothing but sea and sky. I do this every time I go into the sea, I always have, no matter what sea or ocean, no matter where in the world, in real life, it's just something I do. The movement comes from slowly bobbing as the waves pass me, a bounce of the toes, a small jump, the waves pushing against me, then landing and the wave has passed. It's a true "happy place" place for me and I had now found a way of going there wherever I was. I still do this when it all gets too much for me, I can do it laid down, sat or even stood up. It helps it really does, it brings me back to where I am, what I'm doing and what I need to do. It controls my panic, pushes it back down, allows me to breath. So if ever you see me and I seem miles away, I probably am, I'm in the ocean, slowly bobbing as I watch the horizon and the waves coming in. I came round from that feeling energized, relaxed, truly calm but I still couldn't change how I acted at the end of the session, "yeah sorry, would love to stay but I've got to get off, maybe next time" and that's how I was every week for the next 4 weeks. I've been truthful all the way through this blog so I have to be again right now and tell you why I didn't finish the course. I couldn't get the lady with the brain tumour out of my mind, how she was dealing with it I couldn't understand, she was always quick to smile, always a greeting, always willing to talk and really starting to appreciate the little things as she explored mindfulness further. She described losing herself on her sofa, in her shower even in the kitchen opening the cupboard. I felt a mixture of embarrassment because she was so much stronger then me and fear that in the future I would be in her position and seeing her every week reminded me I could be and whilst the techniques I was learning back then were helping I still hadn't learn to deal with them as well as I can now. That mixture of fear and embarassment grew to a point that I decided I couldn't go anymore. I couldn't be around people with cancer and especially those who were terminal, they reminded me that it was a potential future of mine and when I thought about it hard that fear still paralyzed me. I could escape whilst I was in my "mindful" state but not long after the fear and the thoughts would come back. I'm cringing as I write this now because that's not me and definitely not how I am now but it was me back then and that just embarrasses me. I phoned Dave and with real regret told him I wouldn't be coming anymore, I explained my reasons and he accepted them. No judgement, no remarks and no bad feeling. I admired him even more, he could see my struggles and said he would always help if he could but he could also understand why I wasn't in the right place at that time. I didn't say goodbye to anyone else and have never been back to Maggie's since, if I'm honest it's embarrassment that stops me to this day, I know they probably won't even remember me but how I was at that time and how I couldn't deal with people does make me feel small and makes me wish I could turn back time a little so that I did spend more time with those people. Who knows, if I had I might not have sank any further? I may have found strength earlier and probably made some new friends? I do regret it but mindfulness did teach me that fighting the past and the future will consume my present, my now, my life and whilst every now and then I forget that, I am learning to get better and how I deal with life and cancer in general. I can always go to my place in the ocean, put my hands out and just bob slowly whilst my mind finds it's centre and pushes the fears away. |
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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