My single step was phoning my GP. That's how I started to return from where I was. I made that first step and I have been walking ever since.
I've not made it anywhere near a thousand miles yet, I've probably not even made it to a hundred, but I am walking and I won't stop, no way, I will stop when I get to where I need to be, where sarcoma and cancer are no longer scary words but just words. I will get to where my future no longer scares me but excites me, I will get to where I will plan for the next year and not worry if I will be there to see it. My GP listened to me and said she had been expecting it, she had thought I would break at some point. She spoke to me about how I was feeling, looked at my notes and saw that I had seen not only her about phantom lumps but two of the other doctors as well. She asked if I wanted medication which I didn't, I have no problems with it but I did know my friend who was terminal was taking anti-depressants and I thought to myself "If I accept them now what will I take when I'm terminal" seriously I was holding back on medication because I wanted to have it available and working for when I had a terminal recurrence. It's only now I see how bad I was, that just isn't a normal thought process but hindsight is a wonderful thing and I write this now not then when I was at my lowest. I was told to refer myself to Derby PTS who were the first contact for people self referring with mental health issues within Derby and I filled my form in online and just waited for them to contact me. They came back within a couple of days and offered me an assessment appointment to see if they could help me. I told hardly anyone I was going, only those who were closest to me, I didn't want pity but I also didn't want people to question why I needed help now I was in remission, people just wouldn't understand. I took the appointment booked it on one of my rest days from work and wondered what they would do for me. I got to what looked like a very nice house in a very nice garden on the outskirts of Derby city centre, I buzzed the bell they let me in and I found myself in a large bright room that was obviously part of a health establishment but one trying not to be. There wasn't many people in the room just me, the receptionist and a lady at the far end of the room filling a form in. I told the receptionist who I was and she handed me some forms and a pen. I was asked to sit an fill it in before I was seen. I filled in the top and then started to read the questions... Do you feel sad and lonely? Do you have no or too much energy? Do you struggle to concentrate? Are you irritable and distant? Do you worry about the future? The answers were based on how often you felt this way and I answered at least once a day to all of them. This was a moment in my journey, a real moment, up there with other key points like diagnosis, start of treatment, first clear scans and so on because at this moment I realised where I was and where I had fallen to. A light came on and then I read the next questions.. Do you have the urge to cause yourself harm? Do you have suicidal thoughts? No I didn't, none at all. My worries were actually that I was petrified of harm to me, I was terrified of dying so no way did or had I considered that. This was another moment for me because it made me realise some people did, they had fears and feelings that caused them to feel low enough to consider that. I realised right then that there were people a lot worse of than me, I had to find a way now because below me was only those feelings and they were not feelings I ever wanted to feel. I wrote in big letters "NO, NOT AT ALL" and then sat and waited for my therapist. He came in and spoke my name, I looked up from my phone, the universal waiting room distraction tool, and saw a young lad who reminded me of Sheldon from The Big Bang Theory. I was taken aback a bit, I expected someone older but I've complained about stereotypes earlier in the blog, so once again maybe I should of listened to my own advice. After shaking his hand it was through a maze of corridors to his office and I thought "Christ I couldn't run out of here if I wanted to, I wouldn't know where to go" and then I was sat down and after he looked at my forms he asked me the question I had been dreading and at the same time desperate to hear for a while. "So then Darren, how you feeling?" Deep breath, then another, then I started. I told him everything, I told him how I was feeling right then, I told him of the panic attacks when I was alone, I told him of the fear that made me feel physically sick when I thought of the cancer coming back, my feelings of guilt as I worried about dying and leaving people behind, I told him I wished I could go 10 years into the future so I knew that I had beaten it, I told him of the constant self checking to the point of being in pain from the constant rubbing and prodding. I opened up and just talked, it was horrible I didn't want to talk but it kept coming out and all the time he just sat there and looked at me. "Darren, firstly stop apologising, you are not wasting anyone's time" Had I been apologising? I must have been? Yeah I was, I was sorry for taking up his time, I knew how ridiculous I sounded, well to me it was ridiculous. "You are not the only person I treat who suffers from these feelings after going into remission from cancer, I have people who are worse than you. I have seen this before and I'll see it again I'm sure, we just need to get you to understand and deal with your feelings. I won't lie this is going to be tough and you won't like it at times but I know what we need to do, do you think you can try it?" I told him about being a squaddie, about being an obstinate awkward so and so and never backing down from a fight until now. I told him I wanted my life back. I wanted to dream again, to dream of places and travel to them, to be impulsive again, to be relaxed again, to be me again. We talked about the "check up cycle" that I thought was unique to me. The build up, the anxiety as it approached, the relief on the day, the period of calm afterwards and then the start of the cycle and the build up again. We talked about the checking and he asked me if I could check my lungs or see into my stomach and brain? I said no and he asked "well why constantly check your leg then?" I had no answer of course I had no answer there wasn't one. "Do you think a tumour can grow in 5 minutes or even 10 so that you can feel it?" No of course it couldn't, that's impossible. "So why check your leg every 5 minutes?" Again, I couldn't answer because there wasn't an answer. It all made sense to the logical me, the engineer me, I deal in logic every day, I work on big construction projects, I offer solutions to problems associated with building large civil engineering projects. Logic is my method of work. Yet when it came to my illness I couldn't apply my own rules and personality to it. That was my homework for the first week, I wasn't allowed to check myself more than once a day, if I did I had to stop and concentrate on how I felt not doing it. I had to write down what I did and how I felt at that minute and see how long the feelings lasted. That next week was a nightmare, I tried to stop every time I felt myself doing it, I wasn't always successful and sometimes I just did it anyway. I tried though, I did try and when I did stop myself I felt awful, I was struck with worry that by not checking I was missing something, it was there and I was letting it grow. Sitting and thinking about how I felt was horrible too and this is the first time I wrote anything about my illness down. There were words like Panic, Fear, Urge, Panic, Feeling Sick etc.. I would love to say by the end of the week I had stopped checking, I won't lie I hadn't but I had started to realise when I was doing it and I was also trying to stop myself when I could. I had started to fight again and that felt good. I came back after a week and we talked again about my feelings when I thought of dying, we talked about would I really give up the next 10 years, not see my kids grow, not see what my life would be, where it would take me and what I would do? I said that I still would, my fear of death was not a fear of dying but a feeling of guilt. This was now added to my "homework". I had to start to explore those feelings when they appeared, to explore until I was uncomfortable and to continue to stop checking myself. That was a difficult week, I kept going on my stopping my check but starting to explore my feelings of fear was horrific. My coping strategy was normally to distract myself, to find something to do instead so to have to start to feel it and see what it was like was really difficult. I admit I struggled that first week, in fact I can still struggle with it even now, but that first week was tough. I tried to do as he asked but I couldn't, it was just too uncomfortable, I didn't want to do it but at the same time I knew I had to. It was a battle because the old me wanted to take it on, to fight it and show it I was in control, but the new me was too scared of what those feelings were because I knew what a real fear of death was now and that was not an easy fear to beat. This was Cognitive Behavioural Therapy and it was hard, I had heard of it before but never really understood it and now I did I didn't like it, it was exploring and facing a lack of control to regain control and it was so alien to me that I really hated it. I hated it but I could see the logic in it, our bodies can't remain frightened forever, there comes a point when it has to beat the symptoms of fear, your heart has to slow down, the adrenalin can't last forever, you have to crash, you have to push through because your body has no choice. The next 6 weeks we continued down this road, every time we went we talked about how I felt, my past, who I was, what had made me. Ben told me some more about him, he liked to run half marathons and liked Scandanavian fashion. He told me how his family had a history of the men dying from heart disease in their early 50's, and it was all of them, not just some all of them so in his head he would only live until then, anything more was a bonus and as such he lived a full life now. We talked about superstitions and luck, about was it bad luck I got cancer or good luck I survived? Did it really matter what clothes I wore to an appointment? He didn't believe in luck, it just happened, life just happened. We based everything in logic, that was our baseline, logic was my thought process when I was well so we had to find it again. You know from earlier chapters that I still have my superstitions about my check ups so you can see that not everything we did in therapy stuck, I still don't wear that watch or clothes, it didn't all become a new way of doing things because I do believe in luck still, well to an extent anyway. What I did keep trying was the stopping of physical checks and exploring my fears and forcing my body to calm itself as a natural reaction. It got easier but never easy, I still have to go through it now when it comes, I still have to use the techniques especially as I get closer to scans and checks. I also try to apply it to other things that scare me, feelings that sometimes overwhelm me I treat the same way. After 6 weeks I felt more comfortable when thinking of a recurrence and what that could mean, in fact comfortable is the wrong word, it's bearable. I still get the sick feeling in the pit of my stomach and my heart races even now, even as I write this and I consider a recurrence it starts but I sit and I think about it, I almost stare it down, I don't back down I ride it like a roller coaster. That's where the mindfulness comes in as well, it still takes it out of me when I do this so I use mindfulness to take me back to the sea and the horizon, to bobbing in the waves as I look out, out to a future, a future of happy times. As the picture at the start of this chapter says, a journey of a thousand miles must begin with a single step, therapy wasn't a miracle cure for my fears just like mindfulness wasn't, it was my first step. It was the step I made to start to regain control, there were and are many other steps that I took and that happened and every single one has helped in a different way. I'll talk more about them in the next chapters but accepting my problem and starting to talk were where it began. I am going to end this chapter with another picture, yes it's a motivational one and you may love them or hate them but for me this one makes sense. People in general but especially people with serious illness are strong, and we are brave. It's in us because we need it to be, we have no choice. How we display that bravery is an individual thing and we shouldn't get caught up in comparing ourselves to others and how they travel their journey. That was one of the things that caused my problems, I felt a lesser person because I knew I wasn't coping, that I couldn't or wouldn't talk about my journey like some could and I saw them as brave and strong because that's what people expect of those of us who fight cancer, it's just some of us can't or don't always feel that way, sorry but we don't.
0 Comments
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. |
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
June 2018
Categories
All
|