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.
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Darren EvansOn Feb 11th 2013 my life changed forever when I was diagnosed with a myxoid liposarcoma of the right thigh. This is my version of my life since then. Archives
June 2018
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