So after the events of the last couple of days I decided to get back to the story of my journey with Sarcoma, I can't promise I won't get sidetracked again but if I do I hope it will continue to be relevant to what I'm trying to achieve here and document my relationship with cancer and my journey through life with that relationship.
I'd left it that the plan was ready, my treatment was to be scheduled after my planning scan and I was ready for it, really ready for it. At the time I was desperate to get started I thought that once it was being treated there was less chance of it spreading, I was scared that by the time we started treating it would have spread and we wouldn't know so I really was desperate just to get on with it. I think having a plan helped to regain some control, I knew what they were trying to do, I knew we were trying to fight back and it gave me some positivity. It would give me a routine and again if I'm honest I like routine I find it comforting. I guess it's a leftover from my army days, routines and plans are what I use to make the world go round and now I would have one. First though I had to go for the planning scan, I'd received my letter with a day and time on it, Friday 7th at 2pm. I arrived for my appointment feeling a little sorry myself, checked in and sat down. I was thumbing at a magazine but not reading it when I looked up and there was a mum and dad with a young child, a boy about 5. He was about the same age as my daughter but he had no hair and had a pipe too his nose. He sat quietly but happily reading a book and then went exploring, laughing as he went, running and laughing. I looked up and smiled at his parents, what must they be going through? I was actually thankful then, thankful it was me and not my kids sat here waiting for a scan. I never knew their names but that moment did make me think, if that kid could go through treatment and smile then I surely could and that's what I promised to myself I would do. They took me into the scanning room, there were 4 people in there, all ladies and all younger than me. They checked my details and then explained what was going to happen, they were going to take pictures of the tumour whilst creating a, well I'm not to sure what it was called, it was a pillow that I laid on and they then sucked the air out so it fixed around me. They explained this would be put on the radiotherapy machine during my therapy to keep me in the right place. I was a little embarrassed at that point to admit I didn't know what radiotherapy was and what it entailed. I was still in my place of ignorance is bliss and didn't want to look up that and stumble across something that would scare me! That embarrassment grew slightly more then when they told me to "whip my trousers off and stick them on the chair". Did I have decent pants on? Take them off? Really? Are you sure? Do you all need to be in here? Off they came and on the bed I hopped, slightly uncomfortable, feeling warm and trying not to look at everyone. It was ridiculous really, they were health professionals who had seen a lot more than this I bet and I had been a soldier with no reservations at all back then! There was some noise, some machine movement, some conversation between them, some more noise, some more machine movement and then it got really warm. Well actually I got a lot warmer "sorry Darren, we cant quite get what we need, we need to get these off" and with a well practiced swipe of the hands they were gone and I could feel a breeze. I can honestly say I have never been so aware of my socks, I laid there in a t-shirt and socks and all I could concentrate on was the feeling of having socks on! Why that should make any difference I don't know, but at that point in my life my socks felt very important. They did some more bits with the machine, put their hands in my hips to sort of jiggle me around a bit, yes even warmer still, and then said I was at last in the right spot. They turned on what sounded like a big hoover and I felt the pillow get hard and fit snuggly, really snuggly around my waist, hips and thighs. They then asked me if I minded being tattooed. Then she looked a bit closer at me and saw the amount of tattoos I already had, and smiled "I guess not then." Then she gave me what were probably the most important tattoos I ever had, four dots, one on my shin, one in my groin and one on either hip. I forget they are there most of the time now but every now and then I see one and I go back to this room and them being applied. Not with sadness I add, with a sense of gratitude and sense of well it's gratitude really as they remind me of everyone who worked on my treatment, everyone who saved my life because to me that's what they did. My letter then came with my first treatment date, Monday 18th March at 1012 am. The department is on the lower ground floor of City Hospital, a small sign points the way in and the reception desk is just inside the door. Every morning for 5 weeks I walked in that door to a smile and a good morning from the staff there, no sympathetic looks, no sad eyes, a cheerful greeting and a smile. That was just a little thing but a big thing at the same time and on that first day it took some of the fear away. I still didn't know what radiotherapy involved, I'm not daft I knew that there was radiation and a machine but that was about it. My consultant radiologist met me in the waiting room, I was being looked after by the radiology team during this phase and would be handed back to plastics afterwards for my surgery. There had been what I thought was a bit of a delay as I had had to attend an appointment just to "hand me over" where I was offered the opportunity to go back to the Derby hospital but that would of started me back about 2 weeks and in my head that was never going to be an option. Besides I was happy with the people at City, I liked them, they made me feel confident in what they were doing, there was no way I was moving back now! We started to go through the paperwork and the strangest conversation started. My consultant explained that they would try and tape them out of the way but my testicles were going to be in the way of the dosage. No matter what they would do I would still be "in range" so to speak. There were a couple of side effects and they needed to know now if I still wanted to go ahead. My first thought "What the f**k are they going to tell me that would make me not have treatment to kill the cancer in my leg? I mean this is going to save my life and they are going to tell me something that will make me consider not having it. What the f**k are they going to do to me in that room?" I think the look on my face at that point was what made her start talking, and quickly! "Darren, I have to make you aware that there is a small chance, a low percentage that the radiotherapy can give you cancer." My response "Well I've already got it, so I guess that makes that problem pretty redundant, this one could come back anyway so let's crack on then." "Well there is one more thing, have you got any children?" That thought again "F**k me, what now, what are they doing that will affect my kids, can I not bee in the same room as them or something, how much radiation was going into me?" So I responded "yes I've got 3 one's a baby, will there be a problem during treatment?' "No Darren, there won't be a problem with normal life but I need to make you aware that this will make you infertile, do you want more children? Do you need to speak to your wife, will this affect you going forward? Oh and also as your testicles are affected you may experience a drop in your testosterone levels and the associated problems with that." I couldn't believe it, I was due to start my treatment in about 4 minutes and now I was being asked these questions, there was a time and a place for them and right here right now was definitely not it. The next one blew me away, it made me laugh, proper laugh, out loud laugh. "Look we can look to store some semen just in case, what do you want to do?" I looked at her, and then looked again. I'm prone to speaking my mind, to blurting things out, sometimes it's to make a stupid joke, a joke you shouldn't make, I can't help it I was a soldier for too long. "Well if I'm honest I'm not really in the mood" I think that stupid joke stopped the conversation any further. "I've got three kids, I'm happy, they are all healthy, I don't want anymore kids, what I do want is this bloody thing out of me, I'll sign what I need to I just want to start." Two signatures, forms done, "we will see you after the course is done Darren, any problems call" and with that treatment began. I met Josie, Josie was to be my radiologist for the next 5 weeks and honestly she was brilliant. That first session was a benchmark, I walked in and saw a bed with a machine on an arm around it. The great thing was it wasn't like an MRI machine, first worry gone. Next as we chatted in a matter of fact way she said "Ok, then Darren, shorts and pants off and up onto the bed" I think she could see I was a bit embarrassed and she turned away making herself busy with something whilst I did as she asked and laid down into the pillow they had created at the planning scan. I had put flip flops on that morning, I had an idea that no pants was going to be part of it and the thought of having socks on again through me right off. The stupid things we worry about? She turned back and in an instant I was moved and taped up, no fuss, no embarrassment for me, just a job done. I often think to myself, poor Josie for five weeks one of her first jobs everyday was to watch me strip and then tape my balls up. They're right they don't pay them well enough in the NHS! She lined my dots with the lines on the machine and said "Ok Darren, we will fire up the machine and get started" They left and for a second I was alone and wondering what next. The machine whirred for about 20 seconds, then it moved below the table, whirred again for 20 seconds and stopped. I laid waiting for something else. "Ok Darren all done, I'll let you take your tape off" Josie was back and that treatment was over. "That's it? Really?" "Yeah you're all done see you tomorrow" Shorts back on and back to the car thinking to myself "Wow, that's nothing" I had heard about and have since seen friends go through chemotherapy and that is a whole different game to radiotherapy. Yes it's a different treatment but as for discomfort I have to say radiotherapy for me and the treatment I had was easy. I got tired but I think that was more the routine. I treated it a as a job, I got up each morning, I took the kids to school, then drove to Nottingham and had my treatment. I would have a drive back sometimes catching up with friends, especially my best mate Steve more of him later, and then I would have a late lunch and then collect the kids from school. I had worked at home for so long they didn't even really realize there was a change in the normal routine. I wasn't going away as much but they were happy with that, I was at home more than normal and that was great. The routine really did give me some comfort, I was positive because I was doing something, the hospital were doing something, the treatment was attacking the cancer. I still had days where the thought of it would overwhelm me, I still had panic attacks when I thought of it not working and dying but on the whole this was one of the times in my treatment when I was at my mentally strongest. I even managed a weekend away in London with the family, Harry had matches against Arsenal and QPR on the Friday and Saturday so we made a weekend of it. I went for treatment on the Friday morning whilst they all sat in the car, I was having a check up on my funny lump the kids thought and then I drove to London, watched him play and then took them all on a trip of the sites. It was a nice weekend, a break from cancer, a break from worry and it was another rare point of calm during this whole thing. My family were of course helping me through it and giving me the strength to keep going but I also started to respond to some messages during this time as well, not many, but some. the people I felt comfortable with, the people who still asked how I was, the people who still sent messages saying they were thinking of me. I've spoken to those people since and they know who they are, they know that although we didn't always speak a lot the fact that they stayed in touch and kept asking me how I was helped me. They will always have a special place with me because when I needed them they were there. The only downside was about 2 weeks after the radiotherapy had finished, I went for my appointment to see how I was and was I getting ready for surgery and I showed them my burns. Burns are a common side effect, as is hair loss although it's a bit of a radical way to get rid of leg and bikini line hair, and I was burnt enough for it to be uncomfortable. I had used the cream religiously during the treatment but I still got the burns. Although some discomfort to be told the tumour was shrinking was nothing. Yes, I went to that appointment and they told me the tumour had shrunk, it was getting smaller. I left more positive than before, I could do surgery I knew I could and now the tumour was smaller I allowed myself a thought, just once and the only time I did during the whole treatment process. I was going to beat this, yes I was. You may notice the difference between this and my posts about diagnosis and testing. This post is a lot more positive and that's because I was a lot more positive. That was all down to the people providing my care, they were giving me that belief, them and my family and the friends who messaged me were giving me strength to believe we could do this and I could do this. From the receptionist who smiled and joked every morning, to Josie and her Ben Howard CD, Nicola and her no nonsense way of telling me how its was yet still being there to help me up when I fell, to my family telling me to believe and to those friends who I am forever in their debt for not giving up on me. You were the ones who made me believe and who gave me strength. I say thank you now as I will always. Yes it didn't always stay positive but at this point you gave me real belief. Thank you.
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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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