So my second year started with a thumb that ached and was in a comedy size bandage along with a body and mind that ached after what was my first full night of sleep in weeks. I woke that morning as I always do the morning after a check up, happy, relaxed and ready to take on the world. My body always aches the day after check up day, I think it's because my muscles are tense all day when I have my scan, I can feel it, I know I'm doing it, I try and relax, use mindfulness but I'm still a coiled spring. Then the next day I'm so relaxed I ache, my mind is the same though. I feel almost foggy, confused, hungover even. It's like my mind is relaxing after being tensed up the previous day, it's a strange feeling that I really can't explain, I can't concentrate or think straight, I'm exhausted.
That morning, after a full clear year, I tried to make a promise with myself, the promise was that I would try and improve in the next year. I would try and deal with sarcoma and life differently. I would use this as a second chance at my life, I would start to push sarcoma out of the centre point of my life. It would no longer be the part of my life that every thing else rotated around, it wouldn't control the other parts of my life, cancer would be a part of my life but it wouldn't consume it as it had for the last 12 months. 1 year down, a whole year NED, there was a time I never thought I would get this far but now I was and I saw I was wasting my life. I would discover my life again over the next year. It started by letting people in, I made some contact with old friends, people I had not spoken to since before my illness. I had cut so many of them out it was hard to reconnect, I found it difficult to make that first contact. I was embarrassed and didn't know what say, I was also still a little angry that some people hadn't tried harder to stay in touch, then again was I receptive when they did? Probably not, did that help them want to keep trying? Probably not. They were pleased to here from me, they wanted to know I was ok, that I was on the mend and I found myself starting to enjoy being around people again, being able to do the "normal" things and not just thinking about cancer all the time. I also let new people in, I had never really done this before and it was a difficult experience for me. I have always been guarded and I found it difficult to make new friends, not because I was shy, not because I couldn't but because I had always forged friendships over long periods of time and needed to know I could trust people before being open with them. There was one friend though who had not been especially close to me before my illness, we talked occasionally and that was about it but when I was ill and immediately afterwards they talked to me about how I was feeling, explaining that they had been through some similar struggles of their own and I found myself talking more and allowing them to become a friend, a close friend. It helped me learn I could speak about my illness, about what I had gone through and what I wanted for my future. I owe a lot and I appreciate what people did, family and close friends are what dragged me back during the second year, the people I love and the ones who love me, are the ones who brought me to a place of strength. It was as I moved into my second year that I first saw Graham since my diagnosis, and that was probably the hardest thing I had faced since my diagnosis. I had called into the barracks to arrange some training for them and to speak about a project I had planned and one of the lads said "Graham is in, you going to pop down and see him?" I walked down the corridor feeling sick with nerves, how could I speak to him about being all clear whilst he was dealing with a terminal diagnosis. I had heard he was struggling and I just didn't know what to say to him. Yes I knew what having cancer felt like but I had no idea what it felt to be terminal. Selfishly I worried "Would he be angry towards me? Would he even speak to me? What can I talk to him about? What do I even say to him?" It felt like a very long walk and then I was there at the office door and he looked up. A big smile "Daz! Bloody hell, sit down, sit down are you ok?" And right there I relaxed, we sat and talked. We discussed what had happened to us both, we discussed what we had and he congratulated me on being clear. We didn't discuss his diagnosis though, not the real one, he told me that the chemo had stopped it growing and he was being checked but that was it. We both knew what the future held and it didn't need talking about, we started talking about music as we always did and about Janice and her deep fried breakfasts! Seeing Graham and talking to him did affect me but not just in a bad way something about speaking to him made me realise that I could be around someone who was terminal, something I had always struggled with before, the fear of seeing "my future" made it impossible for me to deal with before. This was the point I started to think about groups and wanting to talk to people who had been through what I had, who knew what the fear felt like, who knew what it felt like to be told that "it's malignant", to wonder what their future held or even of they would have one. My problem was that I was still so private, would still only talk to a very few people. I knew I wanted to but also didn't know how to go about it. That's when twitter became important, I started to connect with other sarcoma patients, to tentatively talk, to make connections, to read and listen to others stories. I looked on the Sarcoma UK website and read some of the stories, I wanted to add mine but couldn't bring myself to do it, not just yet. There were still too many brave people out there who when I looked at what they went through I felt stupid for my worries over what appeared so trivial in comparison. It was a start though and as I realised that my story was my story, that my feelings were my feelings, that how I dealt with everything was not unusual it was quite normal actually it allowed that start to build, to build into where I am now. Christmas was another strange time, it was when I had another of my "will this be my last" turns. I was watching the kids play on Christmas day and how care free they were and as we were going into the restaurant for lunch I was walking behind everyone and as I watched the kids walk in I wondered how many more Christmases I would see, how many birthdays, how many other occasions would I be at? It rocked me and left me a little quiet over lunch and if I'm honest it carried on all the way through to New Years Eve. It was daft things that kept the feeling going, for example was this the last time I would see Sherlock, I would never know what the answer to the cliffhanger it ended on would be! Stupid I know but it was there it was in my head and it wouldn't shake out. On New Years Eve I found myself sat alone in the early hours, as always I was watching Hootenany and the Glastonbury highlights with too much red wine in my system and a half full bottle to go when my mind traveled back over the previous year. I had suffered these thoughts a few times but in my first year NED they were all consuming, almost debilitating at times. I fell back into despair and couldn't see a way back when I was suffering but now I was actually starting to. I was starting to see that thinking about the future wasn't necessarily a way of tempting fate into taking that future away. I could see the progress I was making, I could see that I was starting to deal with my fears as best that I could. I can't say that I beat them because even to this day I haven't, they are still there but I call it fear management now. They can still incapacitate me but not for as long, they can still enter and run around my head for a while, the last couple of weeks have shown that, but I can bring them under control again if I really work at it. That was huge progress from the first year, still not where I wanted to end up but definitely far enough away from where I was for it to be considered real progress. I went into 2015 full of real hope, I was determined that this year I would make an effort to make sure that I wrestled back more control from sarcoma of my body and also my mind. That began with the charity lunch and the first talk I ever gave which I mentioned earlier in the blog, that was a real watershed moment for me. As I've said before it was when the idea of writing everything down first entered my head, I never expected to get to this point and to be talking to so many new people who I met through writing my thoughts down. I never expected to be part of the sarcoma community, I had thought I would always be on the outside just dipping my toe in from time to time but not really taking part. My second year NED is twhen I finally felt ready to join that community properly and I'm very glad I did. I'm not going to lie, Christmas to July and getting to that 2 years NED confirmation wasn't all easy. I did have wobbles, I had health scares where I was convinced it was back, my best mate ended up in a coma, another friend moved into the final months of his life, it all reminded me of my illness, my mortality and at times the tears flowed, really flowed. I had one small goal and that was 2 years, I had to make 2 years, it was all I could think of as I got past 18 and then 21 months clear. My mortality has never really left me since my diagnosis, actually my awareness of it is a more accurate statement. In some instances I take less chances now, I'm a lot more cautious but every now and then that threat of not being here forever makes me take a chance, take a risk and some of the things done under that spell...well they have brought smiles like nothing else can! I got to 2 years, I wrote a chapter about it which I hope you have found and read earlier in the blog. What I didn't write at the time was that I went to that appointment alone. When I told people who go through scanxiety that they looked at me like I was stupid! Not in a bad way but they couldn't understand why I would choose to do that, scanxiety is a nasty horrible beast and I hate it but I had my reasons. I want to talk about those reasons but it will have to be in another chapter! If you have made it this far in this one, thank you, maybe a whole year in one chapter is a bit too much but you have probably realised that once I start typing.....
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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
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