This subject of this chapter may seem a bit strange, some of you may wonder why I am even talking about it, wondering why its important on this journey. When I tell some people, especially others who suffer from high scanxiety levels, the ones that go through this and for who it is an ordeal, just like it is for me, they look at me like I'm daft but I hope I can explain why I think I'm not.
When my 2 year check up came around I decided that I would go by myself. I went completely alone, out of choice I wanted no one with me. I decided that I would face one of my biggest fears and probably what was currently one of the most important days of my life without anyone there. I had been running it through my head for a couple of weeks, should I? shouldn't I? Would I be able to cope? Would I find it easier? What do other people do? Everyone else seems to have someone with them. What if they tell me it's back? They are also the questions that people ask me when I tell them I went alone. Most people can't understand it, it seems a strange thing to do, almost unheard of by the people I have spoken to about it. Maybe it's not unusual for you, maybe you go alone or you know someone who does? If you do I would love to hear the reasons why to see if they are the same as mine and if they're not then I would love to understand why it suits you better. I'm also asked "But don't you get nervous?" Of course I get nervous! I suffer from scanxiety like anyone else, I've written about how bad it is for me in this blog. Even as I get stronger and it is not as bad as it was, as soon as I get into oncology outpatients my heart beats, my mouth goes dry, I either can't shut up or to the other extreme I won't talk. I tap my hands, fidget, stand up, sit down again, huff and puff and generally just make people around me angry. If I'm honest it starts in the x-ray department, I look for signs in the face of the radiographer, clues in the words she uses or how she reacts to me. Does she change after my x-ray is taken? Does that mean she has seen something? That's what I thought as I contemplated going alone. As I sit in those rooms I am always in my own head, my own thoughts, my own feelings, everyone else just fades into the back ground. That's why I thought that if I went on my own I could sit and wallow in those thoughts without thinking about others. Wallow is probably the wrong word but the selfish part of me just decided it might be easier for me to go alone. Then I could be in my own thoughts, completely in my own thoughts. That seemed like the best way for me and that was what decided it in my mind. I have also been asked "what if you have questions, what if you forget them, having someone there could help?" I have previously only asked questions that relate to the here and now. I never asked what the stats were, I never asked what the diagnosis meant, I never asked about stages or types and I never asked what the options were. I asked what was the plan? what did I need to do? where did I need to be? Did I need to do anything else? All I ever needed to know was what happened next, not after that and not what it meant. That would be the same again if it came back, what do I need to do now? I would not need to know more than that. I also know what the survival and recurrence rates are now, I now know that I had a stage 2 intermediate tumour. I wouldn't need to know what type and stage any recurrence was, I would need to know what the plan was and what the I needed to do and where I needed to be to be part of the plan. That would be enough, I don't need to know it all I really don't. Again I know some people do and if that's your way I would love to talk about why its best for you, maybe I do have this all wrong. I also accepted that day that if it was bad news nothing will get resolved on that day. If they were to turn and tell me that it was back on my lungs or in my leg they were not going to operate or give me treatment there and then. Would I have been upset or scared? Of course I would of, but I have been there before and if I'm honest I do expect to be back there again one day. When I do what can the person with me do at that point? Last time I couldn't think, hear or listen anyway. I didn't speak, I didn't want to until it had sunk in so I guess I would react the same way again. If that's the case maybe that bit of time alone will help me gather my thoughts so that I am ready to talk by the time I leave the hospital. I may be ready to find a way to tell those who love me that it's back and here we go again, back on the rollercoaster, back in the fight. This doesn't mean that I don't want or need support. I have written a previous chapter on how important it is to have support. Family, friends, other people who have been through it, they are all critical to getting through diagnosis, treatment and life afterwards. For me the man who craves control over this situation, any opportunity I can get to gain that control or even a part of it I have to take it. I know now that this part of my healing process, losing control was such a big part of my downward spiral that any gaining of control was and is a big part of the climb back up. It felt like gaining some independence again, I had always liked having people around but didn't like having to admit I needed help. Doing this with no help was like a part of the old me was back. I wasn't completely alone that day, I had my phone with me and as I sat with my cup of tea, you see the same routine as always, I was texting and emailing, looking for support and getting it, my mind whirring but trying to keep my messages light so as not to cause worry. I also sat back in my chair staring into the sky, it was really blue that day, warm and with a breeze and as I felt that breeze I started going into my mindfulness, into "the pause". It calmed me, showing me that it really did work, well until it was time for the walk to Oncology Outpatients anyway! I've written about the appointment before so I won't go over it again but when I left that day I really did feel like an part of the old me was back. I had faced my fear and I had won. It was another small battle but it was still a battle I had won. It has given me the confidence to know that if I want or need to go alone at any time, then I can. I can do it. I can do it because I have done it before. Of course I can say this because I haven't been told yet that it is back, I really hope I never get told that. I just hope that if or when I do I can still find this amount of strength but until it happens I will never know. I will never know for sure until it happens but I can hope and I can believe that I can.
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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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