I fell asleep on Friday afternoon and woke up at Saturday lunchtime, my leg was throbbing and that was what woke me up. I hadn't taken any painkillers in nearly 24 hours and my drain was nearly full, I ached from being laid still for so long and my head was still quite fuzzy. My first thoughts were of the dull ache in my leg and then happiness, the tumour was gone and now I was going to recover. I had an appointment in 4 weeks where I would be told the results of the pathology of the tumour and also if the margins were clean after testing was completed on them, I pushed that out of my head for the next couple of days I just had to rest and then get ready for rebuilding the strength in my leg. I knew there would be some things I would struggle to do but I had decided that I would treat this like every injury I had ever had over the years and the harder I tried the easier it would be to deal with and improve. But first Saturday was going to be a rest day, I got out of bed, bed was for ill people, and used the toilet. I know that's not the most interesting or even nicest thing to write here but after the "trials" of the hospital pots it was a wonderful thing!! I went and sat with a cup of tea and watched the British and Irish Lions match I had recorded on Sky earlier and just switched my brain off. Charlie came and sat with me and I tried to explain the intricacies of the game of rugby to him but at 6 months old I don't think he got a lot of it! I had some messages on Facebook with some people just wishing me well and others saying they wanted to come and see me, I did actually respond to some that day so I must of been feeling very confident of what was to come, I looked through the list and saw the people who had persevered with me through the dark times, they were there again, wishing me well and I thanked them, I truly meant it. I have to say that this really was one of the good days during the whole journey up to the present, I think the high level of painkillers running through my system may have helped though as well! I crashed out early again that night, it felt like a lot of pressure was slowly releasing, it wasn't all going but a lot of it was and my body was shutting down. The whole 5 months of pressure, panic, fear, worry was lessening and my body was saying "rest Darren, sleep mate, come on let's sleep". So I did. When I woke on the Sunday it was father's day, Harry was coming back from Spain and I was with my kids on father's day, the walk up the hospital corridor and the pain that went with it was all forgotten, now in the cuddles from Madison and Charlie and the thought of seeing Harry later all of it was gone. Mid afternoon I put my drain into the leg pocket of my shorts and managed to squeeze myself into the car and we went to the academy to meet Harry from the bus. It was lovely to see his smile, he had had a great time in Spain and couldn't wait to tell me all about it, I think he was also secretly a bit worried after he had left me in hospital on Thursday and was pleased that I was out now. I got home was given my cards and presents and I just enjoyed the rest of the day, it was my day after all. It was about this time I started to take my first steps into the Sarcoma community, I started to follow Sarcoma UK on twitter (@Sarcoma_UK) although I didn't click onto any links, no, no, no, not yet I still wasn't ready for that and I tweeted a couple of times about #sarcoma, then a couple of people started to follow me and talk to me. I was still really scared about learning about my cancer or seeing any statistics so I didn't say much but it was contact with other cancer patients which was something later on I really struggled to do. That is something I will talk about later as it will highlight some of the other issues that cancer patients encounter, very serious issues, mental health issues but that's for another day as I think they deserve a chapter of their own as they had a very traumatic and lasting affect on me. A tweet I received was from another Sarcoma patient living in America, she sent me a link to the song below, she said that when surgery and everything else got too much she would turn this up and sing as loud as she could. The thought that a complete stranger would send me a small thing like this just to support me was touching, we talked on and off over the next couple of months and I saw that she was going into remission as well. She stopped tweeting in June 2014, I really hope it's because her life is back to normal and she never gives cancer a second thought! She deserves that for the random act of kindness she showed me that day. I actually heard this song on the radio this morning, it was just such a coincidence as my brain has been telling me the negative thoughts again for a couple of days, I'm fighting it back though and listening to this song took me right back to 2013, I could feel tears in my eyes and the hairs on the back of my neck stand up, so I turned it up full and sang "Can we go back, this our moment, tonight is the night, WE'LL FIGHT 'TIL IT'S OVER, so we put our hands up like the ceiling can't hold us!" The first week after surgery I made a real effort to be up and about as much as possible, I wanted to keep moving and develop a new routine, once again life had changed so a new routine was needed, a new direction and focus needed to be found. I was yearning the security of the routine again. I would be waiting 4 weeks for the results of the surgery, I know that might not sound much but 4 weeks waiting for results of any kind is a lifetime to a cancer patient, so what could I do? If I'm honest my obsession with my drain consumed a lot of that first week. I was desperate to get the bloody thing out of me, it got in the way when I slept, when I tried to shower, when I wanted to go anywhere. I wear shorts a lot, in fact most of the year I wear shorts, it's just me, so in a way that's a good thing. No one thought it unusual to see me knocking around in shorts, only the really eagle eyed ones could see the small pipe that ran from the bottom of the leg into my pocket, and not all of those asked.
Although now at the school gates people saw the crutches and those that didn't know started to ask what was wrong? What had I done? This was another set back on my journey, I still didn't really want to talk about it and I hadn't had the "aren't you brave look" for a while now and I didn't want it, no way, not after it had been cut out, not a f**king chance. If anything I avoided answering the question "what's happened Darren?" "Just some surgery on my leg, nothing important", it was easier than the look and the positive thinking comment, I really didn't want to have another outburst at someone either. Don't get me wrong I was in a good place, I was happy with how it was going, it's just deep down there was a gnawing thought that what if they missed it? What if it had spread after all the tests and now it was growing in my chest again and no one knew? That's what happened my to Grandad Taylor. I fought against that thought by ignoring it, by every time it popped into my head finding something else to concentrate on, something to do. It was a bit similar to when I gave up smoking in 2008, every time I wanted to smoke I stayed occupied and that's what I did now. If I'm honest this was another step down the mental health rabbit hole that I was digging without realizing it. Whilst I continued to ignore it I didn't learn how to deal with those thoughts that were building up inside, it was inevitable that it would come out at some point and it did just that, later on yes but it did and it was not a good thing. After 9 days I woke up and the drain had very little fluid in it, I looked, smiled, checked the measurement, smiled again, checked again, below 50mm, yep, lets get it out! Then I noticed there was no pressure in it, the bulb at the top which I used to keep it pressurized was not working, I tried and tried to get the pressure in, nothing, yeah now I was making a call but it wasn't the one I wanted to make. I had decided to get out of hospital early, I had said I could look after it, I didn't want to stay in there until the fluid had stopped draining so now I had to deal with that choice, time to put my chin up, my chest out and get it sorted. You said you could do this Darren so now if you have to have it stuffed back in, well that's your fault! I had been passed back to Derby for my surgical follow on care and physiotherapy so I didn't really know who I should contact on a Saturday morning. So after a call to the 111 number or NHS Direct or whatever it was back then it was recommended I headed down to the local Accident and Emergency to see what they could do. After brief wait, brief by A & E standards anyway, I was told that they couldn't really do anything. The drain I had was used by the Nottingham hospitals and not Derby ones, therefore they couldn't replace it as it needed to be the same one. They passed me on to a department up in the hospital so I wandered up there to be told the same thing and that really I should try and phone Nottingham to help. Now please don't think this is in anyway a criticism of the NHS staff, it's not, it's a reflection on how the system works or in this case didn't. I was sat on a Saturday morning with a broken drain and couldn't be looked after at my local hospital, I called the burns ward over at City Hospital and they said to come in. They would have a look and see of they could do anything but as I had been transferred back to Derby they weren't sure exactly what could be done. I made the trip to the burns ward and they looked at it for about 5 seconds and told me the pipe had come out of the wound and couldn't go back in. There was only one option and that was to remove it. The removal itself was fine, not a problem at all but then they told me they would have to monitor my leg because the fluid was still in there and they weren't sure if my body would absorb it or not? Now I'm no doctor but fluid being stuck didn't sound good, in fact it sounded as far from good as I wanted to be at that minute, but unless I wanted extra surgery to put it back in this is where I was and there was no other choice. Like I said the stubborn Darren had got me to this point, the demanding of control of the situation and now I started to realize I couldn't do that and now maybe I should listen more, it would of saved all this! I was back two days later, the painkillers were not working and my leg had started to swell and looked "angry". I was so fed up, after everything I had been through a bloody faulty drain was the thing that created a complication. A bloody stupid plastic pipe was going to cause a problem. That pissed me off. Still when I was laid on the table and they said they were going to aspirate it, I didn't think that would be a problem, I mean aspirate, that doesn't sound bad, it sounds a nice word. Well it wasn't, it felt like they were sticking a drainpipe in my leg. I have to be honest after two goes they said it didn't seem to be working and that they would give me some tablets to take with my painkillers and these would hopefully control it and help the fluids and if not we could give it another week before we needed to aspirate it again, I jumped off the table, grabbed the prescription and sprinted for the door. Well sprinted as fast as a man on crutches with a bad leg that had just been aspirated could sprint. For the next 7 days I took my pills religiously, every 4 hours, with food and lots of fluids. That bit I didn't get, lots of fluids, but maybe the result of drinking all that helped to drain the fluids in my leg too because after a week it had settled down. I went out everyday walking as well, first on my crutches and then after a week I would put less weight on the crutches as I was waking and more on my leg. Around the house after 2 weeks I wasn't using them, only when I went out and had a bigger distance to walk. After 3 weeks I was only using them for really big journeys and even then I was pushing my leg harder and harder. Mentally I was getting stronger, or so I thought at this point. I was actually starting to talk a little about what had happened, to those close friends who had kept on at me and now they had started to break the barriers down slightly. I was now telling them a little bit about it all, only the physical side though, feelings and thoughts were still off limits, that's changed a lot now, I have a friend I can talk to, someone I can tell when I'm bad, when I'm good, when I'm scared. A cancer patient needs someone like that, a person that sometimes just listens, doesn't even have to comment just listen, because sometime just listening is all it takes. I still couldn't even really say I had cancer to people without feeling sick in the pit of my stomach so the thought of telling people what was going on in my brain when the dark thoughts came still terrified me. They didn't come very often, again I think the routine of walking and trying to get off the crutches was helping me suppress them still. I thought I was winning but still they were there, waiting and building, just because I wouldn't acknowledge them didn't mean they had gone. Those friends kept trying though and every couple of days a message or email would come in and I would be pleased to see it, it meant that people outside my family were there and still cared, were there if I needed to talk even if it was just to say I was out and about walking. I also had my first contact with work about possibly returning, I had been off for 5 months and I knew the wages wouldn't keep coming in forever. I took the call and my boss said that he wanted to come and see me. I arranged to meet him in the café near to my kids school, I would take them up in the morning and then go straight there and we could have a coffee and a chat. He was stood outside as I got there and his face look confused as I approached, his first words were "well you look well, I didn't know what to expect and was scared of what you would look like!" Then and even now this rocks me a little, why do people always expect cancer patients to look a certain way? For the first 30 minutes of our meeting I had to explain to him what I treatments I had and why I didn't look as he expected me too. That felt pretty shit, in fact it felt proper shit. I felt like I was justifying my time off and why I looked well, apart from my crutches, there was no real change to my appearance and yet here I was having to what felt like explain why I had needed the time off. He then asked had I thought about my return and would I be ready soon? I wonder if I had looked as he expected if that question would have been asked? I said I had but I would not even think about it until after my surgery check up appointment, I was not coming back until I knew I was in remission and then I would discuss it. This was also the first time I really thought of my future life after cancer, I was a bit battered, a bit bruised but hopefully in a couple of weeks I would be told I was cancer free. I would then go back to the old routine of work and life. I thought that would be the easy part, I honestly thought that, I thought they would tell me I was cancer free I would celebrate and I would just go back to life and not worry about it again. How wrong I was.
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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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