It's been a strange week, a really strange one. Life has been great recently, I've been positive about the present and future, I've been thinking about the future in great depth, making plans and those plans had given me a huge smile. Then a couple of things went a bit wrong and I wondered if the future was still there, and that's where my head was when my phone "binged" on Monday, Monday was the 18th and the 4 week alarm for my next scan was on the screen. I know it's coming, my head is already thinking on it a little but that alarm just gave me a little bit of scanxiety, I thought it was fleeting feeling but as the week went on it has still lingered, just at the very back of my mind.
This is my first scan at a 4 month interval and whilst it was a huge celebration when I moved to 4 months, it is also a major milestone and they have always been difficult for me, major milestones are a weakness of mine and this one is definitely following the trend. How do I know this? Well I've caught myself rubbing my leg this week, not just occasionally but at a level that has made me realise I'm doing it, I'm noticing my hand on my leg and the routine is back, the same way I always check it for lumps, exactly the same way, and I know why as well. On Tuesday I drove from Derby to Kent to give a presentation and then from there I drove into Europe, across to a small place just outside Maastricht for a team meeting and it took a lot longer than I thought, it was about 10 hours of driving in total and when I got there my leg felt like it was on fire! Pain is a panic trigger for me so this set me off, not massively but just enough for it to be in my thoughts almost constantly, again not at a full blown panic level but just a nagging, an itch that couldn't be scratched. The hotel where I was staying was in a stunning location it really was and on Thursday I caught myself again relapsing. We visited the point where Belgium, Holland and Germany meet and I was compelled to walk to the actual point, to see the marker, to just be there. The reason was that I know I will never go back there, I have no real reason for ever going there again and it was a cool place but it wasn't just the fact I haven't got a reason to go back that was playing on my mind. We had dinner in a great little restaurant and at one point I found myself alone in the corner and I was happy, I didn't want company I wanted to be alone. That's when I caught myself again. I had my hand on my thigh and was subconsciously rubbing my leg but I was also taking what I call mental photos. I couldn't take physical ones, people would wonder what I was doing but I could take what I call mental ones. I look at the place I am, the person I'm with, the thing I'm holding or concentrate on what I'm doing to try and create a solid memory of that very moment. I look or feel and then close my eyes and try to do the same, to see what I've just seen in my mind's eye or feel what I've just felt. I haven't done this in a while, in fact a long time so I knew in that very instance that something just isn't right with me at present, if it was I wouldn't be doing either of these things. I got back yesterday and it was another gruelling journey that ended late last night with severe pain in my leg and it's then I knew, I'm struggling because I'm scared. I'm scared the pain is a recurrence. The fear of a recurrence for those of you who have read from the start will know is a real problem for me. It was the thing that affected me the most along my journey and its also the thing I have fought the hardest to beat and I really don't want to go back down that road. I'm terrified of going back down that road so I need to turn back now, right now. I have had a couple of scares over the last couple of years, most have been imagined lumps, well not imagined they are lumps but they were lumps of muscle, muscle that was supposed to be there and feel like that. My first one was a couple of months after I was declared NED, I was checking myself almost constantly back then and whilst rubbing my left leg, my good one, I thought I felt a funny lump on the side of my thigh. I just lost it, it was a lump, it was back, I was finished, that's it. I was on the phone to whoever would answer, what should I do? I didn't know. I ended up in the GP's office, sobbing with relief because she had told me it was my muscle I could feel, it had always been there but because the same one in my right leg was missing now I couldn't compare the two so it would feel different. I was embarrassed, well actually I was mortified, I had wasted their time worrying about a muscle, I was pathetic. My GP understood, she knew that I was struggling, it was here she first suggested counselling to me, she also asked if I wanted to consider anti-depressants? I didn't. Not because I didn't agree with them or think that they didn't work or wouldn't help. It was because I wanted to save that option, I wanted to save anti-depressants to help me when I was diagnosed terminal and needed something to help me with how I would feel at that point. So anti-depressants were out and at that time so was counselling, I didn't want to admit that I needed help, it was further loss of control which again some of you will know is what is my real problem. That wasn't the only time I went back with a "lump or bump", I went back a couple more times in the first year with them but I also went back when my chest was so bad I couldn't breathe because I was convinced I had lung mets. I didn't, my asthma was out of control but the tightness of chest along with the fact I honestly thought I could feel tumours in my chest sent me back to the GP almost begging for a chest scan. They calmed me and told me, you had a chest xray 6 weeks ago, even if it has spread you couldn't feel it, no way. It was another embarrassment, another feeling of losing it. The worst scare personally for me was just before Christmas 2014, I was getting into a good place personally and then one evening I felt a lump in my stomach whilst I was in the shower. I crumbled. It was a proper lump, about the size of a large pea and it was under my skin. I didn't sleep all night, really, not a wink. I couldn't I was back in the dark place immediately. My stomach was red raw the next morning, I had been rubbing and poking it all night and now it was tender to touch. I went to the GP the next morning I had to get it checked. My GP wasn't there so I saw a locum. He felt my stomach and told me straight away "yes its a lump, it's definitely under the skin, under the fat and it appears to be unattached at present. In my head it was cancer, I told him my history and his face visibly paled. He started filling in online referrals for emergency ultrasounds, he explained it would be in the next day or so, he could get me fast tracked because of my history..... It was hardly reassuring, in fact he put me into proper panic. Only one option, my default option, phone Nicola. I got her that day, Friday, and told her what was happening. As always calmly she reassured me and told me to come into clinic on Monday and they would have a look at me. I felt reassured that I was seeing them but that was one of the longest weekends ever, no sleep, sick feeling in my stomach and what felt like no one to talk to. I was in my dark place and there wasn't anyone to bring me out of it. I don't know how I got through that weekend but I did and as I entered the room I was already close to tears. Nicola and the registrar were waiting for me, he told me to lay on the couch had a prod and told me it was a cyst, something about hair follicles under the fat layer but it wasn't cancer, it wasn't a recurrence it was nothing to worry about. The relief was exhausting, it was another scare and luckily it was relief again, I was lucky, I still am. To this day I have never had to deal with someone telling me it's back and I hope I never do because I still don't know if I will have the strength to face it. I hope I have if that day ever comes but I also hope it never does. I guess what I'm saying is that scares are the worst thing in my life since my diagnosis and I guess I will never learn to cope well with them. Like this week, like this weekend because I'm still sore and still worrying about what is causing the pain, I can cope, its just I can't cope well. It's a lonely place I'm in tonight, there is no one about and no one to talk to. It's all me and my head and thoughts and that's the fight for tonight. It's the target for tonight, just get through until tomorrow and see how my leg feels then. If I'm still sore next week I'll make that call again, until then I will just hope that it is the time in the car that has caused it and the remaining muscles are just a bit sore nothing else.
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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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