I came off my crutches after about 4 weeks, and went straight into physiotherapy. Andy was my physio and apart from the pain he put me through he was a good bloke! I met him and we discussed my "injury", he had previously treated a Sarcoma patient before and was the first person I had met outside of the City Hospital team who knew what Sarcoma was. Since then I have always been surprised by how little people do know about Sarcoma, as I have been more able to talk about it the look on peoples faces when I tell them what I had shows me how little is actually known about Sarcoma by people and actually just how few people have actually heard of it.
The conversation normally goes along the lines of "yes I was off work for a while, but I'm ok now" "What was it then, stress?" "No I had cancer" at that point you have to quickly add "but I'm in remission now" or the sad eyes, head cocked, stay positive conversation looks like it's building on their lips. Then they can't help themselves as remission to them means you are better so therefore it's open season and 20 questions time! "So where was it?" normally leads the conversation and when you say "in my leg" the look of confusion is sometimes worth the conversation itself. "How did you get it there?" really, you think I know how I got it in there? You think I know why my body decided to turn on itself, why it decided to start to make something that could kill me? You think I did something to put it in there? Those are my thoughts but I won't say them now, I've learnt to control that part of me. I'm sorry if that sounds like a rant, it's really not and it's also not a criticism of people asking questions. I mean it took me nearly two years to want to and to be able to talk about it, How can you expect someone who has never been told they have cancer to know what to talk about? I've been pissed off with people saying stay positive and I've been pissed off by people being insensitive, I mean that does make it really hard for them, they don't know what to say and then I criticize both ways! I guess what I'm trying to say is that I sometimes wish people would think before they talk, I'm going to have good days and bad days, and yes I know, how can they guess what today is? How will they know how I will react? I guess they wont, I guess I'm just asking that they think would I like to answer this question before they ask it and don't get offended if I say I would rather not talk about it, I might just be having one of those days. Anyway back to the conversation, "I don't know how it got there, my body just decided to get my fat and muscle a bit confused and it turned into cancer" Then comes the big one, the one I always hear "I didn't know you could get it there". Now I'm normally smiling and I shouldn't but they then do that thing we all do, everyone who has ever had a lump does, they rub their leg. They rub one and then the other, checking themselves, that thing we all do is catching when they think about it. Then they normally ask how big it was? and what did they have to do to get rid of it? When I tell them it was about as big as your fist they always make a fist and look at it, some even put it next to their leg and then look at me. Really? that big? Yes, That big, that's about average for a sarcoma, I was just lucky it was near the surface and I could feel it. This is what I mean, people just don't know about Sarcoma generally, if you say a body part and then cancer people have heard of it, lung, liver and skin, yes they have heard of all of those, but Sarcoma, normally no. If I can change that in anyway then I will, that was the real reason for me giving the talk at the charity lunch that started the road to this blog, just to get people thinking about Sarcoma, thinking about it from a personal health point of view and of course if companies or individuals are looking at fundraising and what charities to support then I want them to consider Sarcoma UK. I want people to know what Sarcoma is so that it becomes more visible, so we get more fundraising, so that we get more research, so we get more success, so we get more people in remission. So we get more understanding, so someone else doesn't have to explain to their boss like I did why they don't look like people expect, so that we can combat secondary problems like mental health issues. Sorry if that's gone a bit preachy or patronizing, it's not meant to be, it's just me rambling as I digress from the point of this chapter again!! So back to the story, Andy worked me hard in physio and I was now starting to look at my return to work in more detail. I was wondering if I would be physically able to do it? I had driven over 40,000 miles the year before, my leg was still so numb and I was only just about able to drive the 3 miles to the hospital at the minute how could I go back to doing the driving I had before, to walking around building sites and concrete plants, I was actually starting to worry a bit. What would happen if I couldn't do it, how could I go for an interview for a new job and tell them that I would need check ups and that I may get ill and be off work for a long time. What would work say if I couldn't do my job, would they even be willing to put up with the check ups and the risk of illness? Money was a worry, I had been off a while and if I didn't get the result I wanted at my check up what would happen then? Could I afford it if I had to change jobs? I had to fight all these thoughts away, my first priority was getting to my appointment and getting the all clear. That meant I wasn't going to die, well not just yet anyway, work and wages would have to wait until after that. About a week before my appointment I started to experience that feeling for the first time. If you have or have had cancer you probably know it, the what if this scan shows something feeling? It has a name, Scanxiety. For me it starts with that thought, then my heart races, and I mean races, then the sick feeling, then my head gets a bit fuzzy as panic starts. This started to feel a bit like being diagnosed again, about a lack of control, I couldn't change what was going to happen, I could only go and be told. This was also the start of my self checking, the rubbing of the scar, the poking of my right leg. This is a habit I have until this day, it's a subconscious thing now, I don't even know I'm doing it most of the time, I sometimes catch myself and then I force myself to stop, but most of the time I just hear "you're rubbing your leg again" and then I stop, almost embarrassed I was doing it. That week the amount of time I was rubbing and poking increased the closer I got to the day, it was almost constant the day before and as for the morning of the appointment I just couldn't stop. I didn't sleep the night before, that's also part of my scan routine now. I try to and I've tried all sorts to help but none of it does. I now just accept that the night before will be bad TV, cups of tea and a constant nausea, they said it would go after a while, unfortunately for me I don't think it ever will. I accept it now, I know it's coming, I know what I will be like, it's part of the routine for me. I've tried to change that routine but this one is just too strong so for now I'll keep on trying to change but also accept that it might be a while before I do. My appointment was on 15th July and on the day of that appointment I was unbearable, I avoided everyone that morning, I did not want to speak to anyone. I had been so positive and I was furious with myself for letting the dark thoughts back in, for worrying about what they would tell me, for not sleeping. I had been waiting for this day since February 11th and now it was here I was struck with panic and dread. I was angry because everyone else was so positive "this is the day Darren, it's all over, you've beaten it" well why couldn't I think like that? Why was I convinced that it would be bad news? "Sort yourself out Darren, you're making everyone miserable, be positive, everything will be ok, just go and get it done" I said that over and over, every time the negative thoughts crept in, but every time I couldn't shake them and this just made me angry, angry at myself for letting it get to me and angry at cancer for changing and ruining my life. This is probably a good time to talk about my superstitions for scan day, they started on this day but I still keep to them now, Nicola even laughed at me during my 2 years check because they haven't changed. On the day I was told I was wearing a blue and white checked shirt, light blue jeans and my timberland boat shoes. I was also wearing my titanium wedding ring, my omega watch and a black leather bracelet. I have never worn any of those things to an appointment since, not one of them. I can't, in my head if I wear them I am tempting fate, if I wear them they will tell me bad news. I know it's ridiculous but I don't think I'm the only one who does this or who has scan day superstitions. I guess it's just another coping strategy, I mean how can me wearing a watch or a certain pair of shoes change anything? It can't, I'm an adult I know that, but still I'm not taking any chances! I got ready that morning and left my ring, bracelet and watch on the side and then we drove to the hospital and arrived really early, and I mean really early. My appointment was at 3.15 but we were parked up and in the hospital for an hour before I needed to be there. We went for a cup of tea and if I'm honest I didn't want it but I also didn't want to get into clinic until the very last moment, I didn't want to be sat around in there, I hated the place still. It was about 3.15 when they told me I had cancer as well, "Christ that's an omen, why did they have to give me an appointment at that time?" See what I mean, superstitions and illogical thinking, the time meant nothing, a coincidence but I was seeing omens everywhere. When we went into the waiting room I made sure we sat in different seats, I picked up a magazine and realized it was the one I had picked up on February 11th and put it down as quick as I could, another bloody omen, "oh for god sake just hurry up and call me in". And then here it was "Darren? Darren Evans? Hi Darren follow me" In my head "No not this room, for f**ks sake, not this room, f**king hell" another omen, the same room. I had gone now, my head was gone, panic was consuming me, my heart was banging like a drum in my chest, a fast drum, I felt sick, I felt like I would faint, I wanted to turn and run, I wanted out. I sat in the chair, tapping my feet, clicking my fingers, breathing, fidgeting, looking at the door, god I just wanted out of that room. After what felt like an eternity Nicola and Mr. Perks came in, just them, I looked at them both for clues, Nicola was smiling but she always does, "Good afternoon young man" Mr. Perks was talking, "listen to him Daz, listen to him" I was telling myself, still trying to read his face, still trying to guess what was coming, dreading him telling me bad news again. "It's good news, the margins were clear" I didn't hear anything after that, I put my head in my hands and I broke down and cried, the tears started and wouldn't stop, the sobs started and wouldn't stop. I felt like I could breath again, I felt like I wasn't being crushed anymore, I felt relief, happiness, a sense of the future, I felt so much I didn't know what I was feeling, but it all came out in my tears and sobs, every tear and every sob took more pain away from me. I looked up after 5 minutes or so, and they had all gone quiet, everyone was looking at me and smiling, I started to speak "really? it's gone? there's nothing left in there? it's gone? everything is good?" over and over I asked the questions "yes Darren, it's gone, the margins were all clear, we tested the tumour and there was over 90% necrosis, those results are outstanding, they are the best I've seen for this type of tumour, your leg is clear, it's a good day just enjoy it." That feeling soon came back under control, the day wasn't actually over. "You need to have a chest x-ray now Darren, so I'll write you a slip and if you go down there you can get it done now. "What about the results? when will I get the results? I'm seeing Dr Cardale next week will she tell me?" "No we'll call you Darren" they didn't realize I had been booked in to see the oncology team the following week and said it would be a waste of time to come to that appointment. They would tell me nothing different from what I had been told so they would cancel that one, I could go and get my x-ray and they would phone me the next day with the results. If I'm honest this threw me, it threw me right off, so was I all clear or not? Was I cancer free or not? Should I be happy just yet? I mean if my leg is clear that's a good thing but I knew this would happen, all along I said that in between my first scans and now that the cancer would spread and we would miss it, I wanted to be all clear today, I wanted to be all clear. Now I had to wait another day for it to be official or another day to tell me I needed more treatment, God I just wanted to know now. They could see how this had upset me, they could see I was scared, I told them I would struggle to do this, that the wait every time I had to do this would be unbearable, I just couldn't do it. They talked and explained that if it was easier from now on I could have my chest x-ray before my appointments, they would have a initial result but that would be confirmed by the radiologists after a couple of days. Would I prefer this? God, yes, I would definitely prefer that! Anything to stop waiting for results or at least reduce it to the absolute minimum. This is also when they first explained the follow up process to me, 3 monthly checks for the first 3 years, then 6 monthly for 2 years and annually for 5 years. 10 years, to me that was 10 years until I would be a survivor, 10 whole years before I had beaten this, 10 years, f**k that's a long time. I didn't ask any questions about it, I didn't want to know the statistics still, 10 years that's what it is, ok I'll work on 10 years and see what happens. My next two appointments were made, I would alternate between plastics and oncology so I would see each one every 6 months but would have my check up every 3 months. I thanked them for everything, gave Nicola a hug and went off to x-ray, I didn't know what to feel now, I should be happy, I should be celebrating but I couldn't, not until I had these results back. The similarity of walking to x-ray from oncology was unsettling, I was back into looking for omens and then when I had the same radiologist as my first chest x-ray I started up again. She recognised me and asked how I was, I told her I had finished surgery and this was just a check, she said "well I hope the treatment has worked and keeps working", then it was shirt off, hold here, deep breath, click and shirt back on. She asked if I was going to clinic and I said I had been, that they would give me the results by phone tomorrow, she said "Ok great, well good luck, I hope the treatment keeps working". Well what did she mean by that, did that mean it was ok. did it mean it wasn't, has she got sad eyes, is her voice sympathetic? I left feeling sick, I wanted to be happy, to be all clear and now I had to wait for results again, and waiting for results was the thing I hated the most. That night was a strange one, everyone was happy, the cancer in my leg was gone, I was in remission, but still I couldn't relax, I couldn't be fully happy just yet, I needed that chest x-ray result and then I would accept that I was cancer free. All I needed was that chest x-ray result. I sat up again for most of the night, watching TV and feeling so many mixed emotions, I really wanted to believe it was all over and I could go back to my normal life. I wanted to celebrate really I did but I needed that chest x-ray result. How could I sleep knowing I was so close but could also be told I needed further treatment, my head, my mind would not allow sleep whilst they were both an option. The next morning was like going back to February, I sat looking at the phone, wishing it to ring again and dreading what would be said at the same time. Every time it rang I jumped at it, every time, and then I answered it and heard Nicola's voice, cheerful as ever she didn't hang around and just told me that everything looked fine, we would have to wait for the radiologists report but everything looked fine. The smile on my face grew, it kept growing, the pressure that had held me down since February was gone, my mind felt like it was clearing, like a fog was lifting, my body felt lighter, my muscles were relaxing. I was in remission, I had to think "is that what they call it? Is remission the right word? F**k it whatever you want to call it I was cancer free, after 5 months I was cancer free.
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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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