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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When I first looked at my phone this morning there was a bright red notification badge to say I had received a group message on Facebook. It was from an old army friend and all I could see was the first word, Gents. I knew straight away what it was, I've been waiting for this message for a couple of weeks now. I opened the messenger app with dread and there it was; Gents, Bad news, Graham lost his battle with cancer last night. More information regarding funeral etc in due course. My heart sank and some tears came, just a few as I didn't want the kids to come down stairs and see me upset, and then I wished him goodbye. My thoughts were of happy times, some random memories and of course our last night out which I talked about briefly in this blog earlier. I finished my coffee, took my eldest son to training and set off for work. I had a really important meeting to get to today and I knew that in the car alone I could gather my thoughts and process them properly. As I made my way up the motorway I thought about the last 3 years, Graham was diagnosed in the September of 2012 and found out virtually straight away that he was terminal. I was working every hour I could at the time and didn't really get a chance to speak to him properly but I remember feeling shocked. A friend of mine about the same age as me with kids had been told he had terminal cancer, it was the first time I thought of my mortality in terms of illness. I sent him my best wishes, offered to help in anyway I could and then had to face the ridiculous amount of work and stress on my plate. I was diagnosed myself 5 months later and then as you have read previously and will read again as we go along further with this blog that I shut myself off from most people whilst I went through treatment and yes I'm embarrassed to add I found it difficult to think or talk about Graham at this time. When I posted on Facebook that I had gone into remission one of the people who commented was Graham, he was pleased for me and my family, and at that point I knew I needed to speak with him and see how he was. He was working part time still on the army specialist team I served in as the civilian technical officer and I called in to see him and have a chat. We talked about old times, music, some daft memories like our 9 hour drive in a Landrover and trailer from Nottingham to Cornwall and stopping off for pasties at my mum's house, or Janice in the canteen deep frying everything on our breakfasts at Naafi break each morning! We only briefly talked about cancer, I felt guilty I was a survivor and he never would be but that meant nothing to him, we were two old friends catching up nothing else. Over the next year or so I saw him from time to time and other people kept me up to date with how he was getting on, he struggled for a lot of it I'm led to believe, he held onto some anger and found it hard to process. I also believe that he and his wife had some difficult times but and this is probably the point of this chapter, she stayed with him and last night when he went she was there by his side. For me that's how it should be, we all have that one person in our life who is meant to be there, the person who will be with us when we leave this world, who will be our comfort in our darkest times and our rock when we lose our way and need something to cling to. I have that person in my life and for that I am very happy. There is a saying that goes "You only live once" or "YOLO" as the youngsters say! I disagree you only die once, every new day is a new chance to live, to be the person you want to be, to do the things you want to do. You live every day that you wake up and you should appreciate that, you should spend time with the people you love, tell them that you do, because there will be a time that it was the last time you told them. I'm sat thinking about memories of him a lot today and one of the things we talked about a lot was music, he loved his music as do I and one song that reminds me of him is perseverance by Terrorvision. It's a random one I know but it came about during a lively discussion about the Britpop of the mid 90's and he gave me a CD with the album on to broaden my musical tastes. And yes he was right I loved it. I've played it today amongst others and tonight I'm going to finish this chapter with a link to the video. Then tonight I'll sleep and tomorrow I'll wake and live again, I'll live well and tell the people that matter I love them because you never know when that last time will be. Farewell Graham my old friend, sleep well with dreams of happy memories past. Let's rock out one last time. I said earlier in this blog that I was told the fight with cancer would involve days that I win and days that cancer wins. Well today was another day that I won. Today I hit two full years in remission, two years since I was told in the very same room I was diagnosed in that I was now cancer free. This is to me a major milestone, helped by the fact that my consultant is happy to extend my check ups out to every 4 months after my next one. Now that might not sound a big difference to some but to me it's huge, they are now confident enough to let me have another month before they need to check me, 1 less time a year that I have to go through my check up routine, 1 more step to 6 monthly checks and then annually.
My day went as I expected it to, I didn't really sleep last night and at about 6 this morning I decided it was time for coffee. I got up made my normal super strong first coffee and watched an old episode of Soldier, Soldier on some random Sky channel. It helped me to relax, I drifted back to the early 90's and watching it just as I was joining the army, I'm not sure if I was more Tucker or Garvey but it did help me to just gather myself before my day began. The kids got up and then kept me busy until I dropped them at school, then I made a bit of a gesture at doing some work. At 11 I couldn't sit still any longer and headed off to Nottingham, stereo blasting and mind elsewhere until I got to about a mile from the hospital and saw it was only 1145. my appointment wasn't until 2.30! I made a couple of work calls, spoke to some friends and my family, then tried to have some lunch. I bought it, looked at it, chucked it in the bin and got another coffee and a bottle of water. At 1245 that was enough, I finished the journey and headed straight for x-ray. In, deep breath, click and on my way. Next stop the WRVS and my normal cup of tea. I sat in the garden made some more calls, texts and emails and just about passed the time without going mad until 2 o clock, when that was it, I headed down to oncology outpatients, I had left Nicola a message this morning and for once I wasn't I tears as I made it, I wanted to catch her before my appointment to tell her about my blog and that I wanted to consider getting involved in a support group. As always though clinic was busy so I got another cup of tea sat down and waited. I went into the room and If I'm honest I started to go a bit, I was rubbing my leg, getting up to pace about, sit down rub my leg, get up pace around and so on. I was probably in there 5 minutes but it felt longer, lots longer. When they came in I saw Nicola first and her look relaxed me, my consultant spoke straight away "chest x-ray is clear, how are you?" There it was, my deep breath, my lip wobble and a brief shudder. I'd made it, 2 years, 2 years, I had made it. I said I was ok, I was getting better with my anxiety in so much in that I wasn't close to throwing up in the waiting room, I wasn't going to snap at Nicola like I had at 1 year because I wondered why she was there, "it must be bad news if you're here!" I then had the scar check, leg rub for lumps followed by lymph nodes and stomach check. All the time Nicola was explaining my history, both my clinical and my mental health one to the student doctor in the room. She has a way of telling it and making me laugh, there are no airs and graces just telling how it is, that's great that's me as well, and some times I just need that. My consultant told me well done and then about the extended appointment durations. I felt good. I feel like today cancer lost another battle and maybe another little bit of it's hold on me. Each bit it loses the more I take control back from it regarding my life and my emotions, I have had some really dark times and thoughts this week but this was part of my journey back. Today was another step away from that brink, there are some plans in place now to make sure I never go back there and I know now that I won't. I will always need those people who love and care for me to be there, I know that but I have to look forward not back. I'm grateful to those that are there, very grateful and to know that people love and care is a humbling experience. One that inspires me to move forward now, to continue with this blog, to finish telling the story of how I got here and then to keep sharing my thoughts and experiences as I do make those forward steps. I have cried today but I've smiled too and that brings a bit of balance to it. This is just a quick addition as tonight I sit here and think about my 3 month appointment tomorrow, the scanxiety is back, really badly and the people I would normally speak to about it I'm not able to at the minute. I'm also going by myself for the first time tomorrow and that is playing on my mind, normally when I'm there I don't talk anyway but tomorrow I wont have the option, it will just be me. Don't get me wrong I need to be able to do this, I want to be able to do this, it's another important milestone for me in my recovery. If I can learn to control it I can learnt to deal with it better and then hopefully talk about it more.
Talking about it I've learned over the last 2 years is very important, not necessarily about statistics, survival rates or the clinical side but the emotional side, the one that helps you cope with your feelings both good and bad. I have a couple of people I can talk to and they really do help me, really they do. Without them I'd be lost. People also tell me I should be pleased that I get regular checks and that they would catch it early but me I'll be happier when I get to annual or even no check ups because that means it has been a long time since it was in me and therefore less chance of it coming back. I'm not sure if that is clinically correct and if you know don't tell me, it's best for me still that I don't know. The big anniversaries are the difficult ones for me, 1 year was a tough one, 2 years is working out the same way. I don't know why these in particular seem to be like that, maybe because they represent, well they are real measurable and substantial chunks of time. If I can get through just 1 more year I get to go to 6 month checks and that to me is the promised land at the minute. So what happens tomorrow? Well my appointment is with the oncology consultant tomorrow. This alternates with the plastic surgery consultant who carried out my surgery but as always it starts the same way. My thoughts will actually be at the hospital the minute I wake up, I will be desperate to leave to get there and at the same time find a million reasons and stupid little jobs to delay my departure as well. I'll get in the car and pick some of my favourite songs and turn it up loud but when I get to the hospital I wouldn't be able to tell you what I had listened to. I park and go straight to x-ray, I get there about an hour before my appointment at clinic and it's pick up my ticket at the desk, waiting room, x-ray room, t-shirt off, deep breath, hold the rails, click, and I'm done. Then I try and read the radiologists face and comments. Are they secretly telling me it's back, are they telling me it's fine? They actually all say the same each and every time. "Ok Darren are you off to clinic now? Yes? Ok they will have a copy on the computer, bye." But each time I listen for a change in voice tone or a sad look in their eyes, I guess they are used to it and I would never play cards with them that I know. Then it's the wait, the hour that feels like a day, the cup of tea that tastes of nothing. The blank stare and the thinking of "so what do I do if they say it's back?" Then 5 minutes before my appointment I walk down the corridor to Oncology outpatients, hand gel, reception, book in and sit. I sit and look around "who's here for the first time, who's been here before." I watch people go into the rooms and come out, the ones who have had good news smile and chat but the ones who have bad news, well they look like I did when I first walked out of that room. A support worker will then say "Darren, Darren Evans, Hi Darren follow me, take a seat, Doctor will be in soon." And I sit and wait, feet tapping rubbing my leg and waiting for them to come in and speak. That's the minute that feels like a year, the one I truly struggle to cope with. Then the news whether it's good or bad will be delivered, I've only ever had good news for 2 years now and I hope that stays the same tomorrow. If it does I'll thank them, walk out and try not to look to happy, I don't want to upset people who may be getting or have just had bad news, I make my next appointment and go back to the car. This is the point where I go, every time I just go, a deep breath and then tears, not as long as before and no sobs, but there will be some tears as the relief enters and the stress and worry leaves before home and sleep, I haven't slept properly in 4-5 days at present and I hope tomorrow I will, I hope I sleep knowing that I've made two years, that I'm nearly half way there. Now I don't know how many people who are reading this have had an MRI scan, I'm guessing if you have had cancer you probably have but if you haven't let me try and describe it to you. I'm not a small bloke, in fact I'm a big one. The MRI tube is not exactly spacious, in fact when I looked at it and looked at myself the engineer in me laughed and said in my head "where's the one they are putting me in?" They are also very loud, very loud so they give you headphones if you want them to try and take your mind off things. I chose Paul Weller for my session, he was another favourite artist of mine and I love this song. It has always relaxed me, made me feel calm and that's what I needed as I was pushed into the tube. The MRI came after a CT Scan of my chest and abdomen, apparently this would give a more detailed picture than the x-ray and would be a double check on the chance of there being any mets in my chest or stomach. The CT scan was easy, sitting in the waiting room as an old man with cancer for the third time told me all about it was not. I hated being around people with cancer, they all seemed to be really positive and brave yet I couldn't be like them. I still had dark moments, more of that in a bit, but they all seemed that it was easy you just thought positive all the time. I know now that it isn't always the case and people act that way because people expect you to act that way. It's bad enough that you have cancer and some people don't want to talk to you because they don't know what to say to you but to then also have to deal with you in your dark places as well, well that takes a very special kind of friend and person. I'm blessed I do have people like that who love me and help me through it. That was another anxious day waiting for that result, little sleep and food was becoming the routine after any scan whilst I waited for results, it wasn't as bad as the initial x-ray wait because I had already been told that I should be ok after that but it was still uncomfortable. Then I received another letter saying I needed a full body MRI Scan to confirm that I did indeed only have the one tumour. The build up to this one was bad, panic and anxiety were again my companions most days, my worry was that yes my chest and stomach were clear but what if it had gone to my brain? Did sarcoma go there? Maybe I'll look it up, no I won't if I see it does I'll convince myself and I did have that headache last week. It's amazing the hurt and pain that our own minds put on us sometimes and because it's our own minds it's even more convincing. So the build up was a nightmare and the thought of being completely in that tube for 90 minutes, the expected length of scan it said in the letter, was not helping either. Scan day came, off I went in my shorts and t-shirt, there is no metal allowed in the tube, I picked my music, laid on the bed and after being squeezed in to the tube I tried to relax to take my brain away from where I was. What I didn’t tell anyone and never have until now is that during the scan I planned my funeral, I laid crammed into the MRI tube, arms pinned by my side, headphone cable across my throat, fear building inside me and I planned it all. I wanted something simple, nothing big but it had to be a celebration of my life and all that it had involved. Music has always been a big part of me and who I am, I attach songs to memories and people, places and times and this was to be no different. I picked 3 songs that were to be played and in what order they were to be played in. They were… Oasis “Stop crying your heart out”, I wanted this as people came in, I didn’t want tears I wanted smiles, old friends and family seeing each other again and smiling. No tears were needed, I say in my bio page on this blog that I have lived a truly great life, I honestly believe that and no matter what my future holds I will not lie down and regret a thing. Every place, time, person is a memory a point in my life where it connected with something else and that is for always. Frank Turner “I knew Prufrock before he was famous”, there is a verse in this song that has always spoken to me, when I first heard it it spoke to the very core of me. Those words are “Life is about love, last minutes and lost evenings, about fire in our bellies and furtive little feelings, the aching amplitudes that get our needles all a flickering, they help us to remember that the only thing that’s left to do is live, the only thing that’s left to do is live.” And that just about summed it up, that is what life is about all those precious moments and memories that I have just mentioned, and that even if I wasn’t there I wanted everyone to go and live, I wanted my children to know that life was there to be lived, experienced, enjoyed. They were to go and light the fire in themselves and create their own last minutes and lost evenings. The final song was the one I used earlier in this blog, Frank Turner again, “Long live the queen.” I hope you’ve clicked on it and listened, if you haven’t please go and do it now, it’s somewhere below on this page. And then just take from it one line “we lived to dance another day, it’s just we have to dance, for one more of us.” If you have lost someone close to you, then go and dance for them, go and dance like no one is watching because I’m sure that they want to see you dancing and living life for yourself and for them because that way they never left. And that’s what I thought about for 90 minutes in that tube, I tried to go away, to concentrate on the song at the top of the page but it didn’t work. As soon as the scan finished I got out of the building as soon as I could movement and activity took my brain away from the funeral and back into the now and the next wait for the next set of results. These were the next big ones, one tumour meant a big positive step, a huge one, one that would give me a massive lift ready to start treatment. Another 2 days and then the call came, I had one tumour in my body, one, in my leg, yes it was a decent sized one but it was one just one and now they had a plan to treat it. That plan was now a definite plan with a definite time frame, I needed one planning scan on my leg for the radiotherapy and then radiotherapy would begin within 2 weeks. 25 doses over a 5 week period followed by 4 weeks rest before surgery to finally cut this thing out of me. So there we were, the tests were over the doctors had made their plans and if that didn't work, well I'd made mine too. Someone once said to me that the fight with cancer would be one of many battles, some days the cancer would win, some days I would win but whatever kind of day it was accept it, deal with the day and start again the next day. That phone call was my first win, my first chance to think positively. I had to embrace it and enjoy it, for the first time in 3 days the sick feeling in the pit of my stomach lifted and so did the fog around my thoughts. I still needed to speak with Nicola to get it confirmed but for now I concentrated on the win, this was beatable and it was time to start to fight.
I walked to the school that afternoon and stood at my normal spot at the gate to wait for my eldest. I had told a couple of friends by phone and when they saw me they came over to speak. Again the conversation was the one we all know "you have to be positive, you can fight this, if you need anything just ask" I nodded, I was truly touched that people genuinely seemed upset. I would never ask for help, I'm to stubborn and proud I suppose, and I thought that if I asked for help it would show I was losing or beaten and that as long as I could do it all myself then I still retained some control and the illusion of victory. I ate that night, the first food since my diagnosis, it was a simple spaghetti but I wanted to eat, I wanted to sit at the table and eat with my family. I even managed a smile with the eldest two as they talked about school, I bathed my youngest got him ready for bed and settled down with him and a bottle. I chatted to him again as he drank, nothing major just promising again that it would be fine, that everything would be ok. I spoke to Charlie a lot over the period of my treatment, it's probably because that was the only peaceful time in a house with 3 kids, that was my quiet and reflective time and when I could try and put my thoughts in order. Sleep still eluded me though, every time I became calm or cleared my head one thought always popped into it "I've got cancer" but tonight I could also counter it with "yeah but my chest x-ray was clear". The pre op assessment was fairly uneventful, it was normal routine health stuff really. Height, weight, some swabs for MRSA and blood pressure. I seemed in good health all things considered and my operation was confirmed for 6 days time, the following Wednesday. From there I went down to oncology outpatients and asked for Nicola, I wanted to confirm what I'd been told and just chat about what happens next. We chatted for a while and she told me it would be surgery then some radiotherapy just to make sure all was clear as discussed in my diagnosis meeting, I told her I dint really remember that bit. We started to talk a bit more about sarcoma and it was then I made up my mind that I didn't want to know anything more than I already did. Now I'm not saying this is the right way for everyone, this was a decision I made that would suit me best. I had watched the introduction video on the sarcoma website, well some of it anyway and I saw a couple of statistics. They scared me. In fact they petrified me. I decided that from that point on I only needed to know about me and where I was with my illness. I would only want to know what the plan was for me and if that plan was to change at anytime. Yes you could say I buried my head in the sand and that was wrong but like I said this was the way I was going to face it, it was my coping strategy. In the long term if I'm honest if this was to lead to some of the other problems I was to have regarding cancer and how I deal with it. So that was it for now, off I went with a surgery date and an instruction to try and rest a bit, to try and think about the positives. And that's what I did. I still had the "I've got cancer" thought every 10 minutes or so but I tried desperately to keep it at bay with positive thoughts. I wasn't always successful but I kept trying and kept looking forward to Wednesday when the tumour would be out of me and then it wouldn't be able to spread. I kept myself as busy as physically possible during the weekend, football with Harry, swimming with the family, cooking a roast dinner that I didn't eat, anything that kept me occupied. Sleep was fitful and then it was Monday morning. There was no work to go to today so I tried to think of different things I could do to fill my day and settled on going out to do a bit of shopping and buy some new shorts, t-shirts and a pair of flip flops for hospital. I wasn't sure how long I would be in for and any excuse to buy some new things and I'm off to DW Sports! The phone call came whilst I was out, I was at the Wyvern Retail Park and it was my surgeon's secretary. "Hello is that Darren, it's Mr. Perk's secretary. I'm just telling you that your surgery isn't going to happen on Wednesday now." 'Why? what's changed? I'm ready to go now, why won't they operate?" "I'm sorry I don't know, I've just been told that the surgery is not happening on Wednesday, I'm really sorry." With that she was gone and I lost it again, completely lost it. My heart raced and my breathing became difficult, my legs were shaking again and the fog descended into my mind again. Why was my surgery cancelled, they must have found something else, somehow they think it's not worthwhile to operate on me, well that's me then I'm finished. My mind had gone and the only thing I could think to do was call Nicola. The answer phone messages started again, call after call after call getting more frantic and panicked. All the positivity and control I had gained over the last couple of days flooded out of me and was replaced by panic and fear. I lost the rest of the afternoon and just couldn't concentrate. Nothing mattered until I could get through on the phone to someone and find out why. That call came at about 5, it was Nicola, and she started by telling me not to panic, I had to stop panicking. They had held an MDT meeting that morning and then went straight into clinic, which I knew was always busy, and no one had any time to call me. The decision had been made to treat with radiotherapy first, this type of tumour reacted well in general to radiotherapy and it may also help to shrink it and limit the amount of damage to my leg caused by surgery. My tumour was 100mm x 70mm x 50mm, about the size of a tin of baked beans, and also about the average size of a sarcoma on diagnosis. To imagine it hold your fist or a tin against your thigh, when I do that now it always makes me shudder but it does demonstrate well the size of it. To remove that with good margins would of caused me some severe damage and due to my age they wanted to give me the best quality of life possible after the surgery and not leave me with leg that was useless. There would now be some more scans and tests but things would be moving. I put the phone down and went and sat quietly in the conservatory, today had almost been another victory for cancer, I had let my panic and fear get the better of me again. To win this fight I would have to remember what had been told to me, I had to accept both but concentrate on the good. They wanted to save as much of my leg as possible to give me the best quality of life after my treatment. That meant I was treatable, I could survive, I would survive but I had to concentrate on that. At that point I could and I did, there have been times since I couldn't and I will talk about them in more detail later in this blog, but for now I had a plan and I knew I was treatable and now I had to start to fight. So the waiting game started......I sat and waited for the phone calls, one to arrange my pre-op assessment and one from Nicola with my chest x-ray results. I had never heard of metastasis before, mets I call them now, that's the in the know name, and I know exactly what they are. They are what I was waiting for news on and I knew if the cancer had spread the mets would probably be on my chest. The chest x-ray would show them and then this was serious, really serious.
I dropped the kids at school, I avoided everyone, all the parents I considered friends, they knew I was waiting for results and they knew I was in on Monday to get them. I didn't want to be playground gossip and I didn't want everyone knowing in case it got back to the kids, I would have to tell some people yes, but I would choose who and I had to tell my family first. My mum would be first, then I would tell my extended family. I discussed telling my Dad with Emma, we hadn't spoken in a couple of years and I didn't want to tell him. I didn't suddenly want him in my life because I was ill, he was the most negative person I knew and that mixed with guilt, if he had any, was not going to help me now. That call was never made. I called my mum, I knew that her dad had his leg amputated fairly young and he had died before I was born, hence my middle name. I recently found out my granddad lost his leg because he had a tumour in his right thigh, he then fought for 20 years before cancer finally won, it was those bloody mets again! I apparently look and act just like him, maybe we are more alike than anyone would know! My mum bless her was no use at all, the tears started and wouldn't stop. I told her I would talk to her later I had to call other people If I'm honest I didn't want any negativity near me, I didn't want to hear it. She still to this day does not say I had cancer, she won't say the word and my name in the same sentence. She winces if I mention it and yet has all my appointments and check ups on her calendar. Just so she knows she says. Next it was work, my boss was already aware of what I was being tested for. It was another call to make, another time to say "I've got cancer", I didn't want to keep saying it, if I didn't say it again maybe it wouldn't be true. Who was I kidding, it was true. I phoned Andy and told him, "I won't be in for a bit, it's cancer and I need to get my head right, I'll clear the important emails but I'm not speaking to anyone. After that I'll call you when I can." He was great, "no worries, leave it all, I'll deal with it. Take as much time as you need, phone me when you want, do you want me to tell everyone?". "You may as well, but please ask them not to call at the minute, I'm not up to people and sympathy just yet" and with that I was off work. That had gotten me to lunchtime, but there had been no call from the hospital. Why the delay? Someone was going to call me today, why hadn't they called me? What was wrong? It must be bad news, why hadn't they called? Can they tell me the results over the phone, why hadn't they called? Yes, you can see the pattern, why hadn't they called became the mantra of the day. I asked my wife that question about 100 times, 1000 times even, the longer the wait went on the further into panic I descended, further and further down. This was a path I was to learn well over the next couple of weeks, panic became a problem, a real problem. My problem was control, I liked control and now I had none. I had never really been in this situation before and that's where the panic came from, I know this now, but at the time the panic clouded my thoughts, my actions, everything. I had been given some leaflets and letters when I left the hospital the day before, I remembered Nicola's telephone number was in there, "I'll phone her, see what she says." This was my first introduction to dedicated Sarcoma services within the NHS. I didn't know that Nicola also covered another hospital and was not just the sarcoma nurse specialist, she also had another type to look after. She must have wondered what was on her answer phone when she picked it up. Calls, lots and lots of calls, each more desperate than the last, each more breathless, each with more panic than the previous. The last one was left at 4.55pm, I was pleading, begging for my results. I had worked myself into a frenzy, they had told me they would call me today, why won't they call me, they have to call me, they told me they would call me, I'm going up there, they have finished for the day, they told me they would call me! I don't know how I got threw the night, at times I was physically sick with panic and at times I was shaking with the adrenalin I was producing as my heart raced. The physical symptoms were nothing compared to the mental pain I was in. I needed to know, I thought I could deal with it if I knew, I knew I could deal with it if I knew. From conversations since with other patients and survivors I'm not alone with how I dealt with this, we have all had the initial shock of being diagnosed and we have all had "the waiting game." The waiting game is what I call it, it's the wait to see if it's treatable or it's not, the critical part of the diagnosis, the business end, and the bit where you know what you have to do. There are some who can't do anything but fight and hope for a miracle, I have a friend like that. He has taken it, dealt with it the best he could and as I write this has a matter of days left. He has continued to fight for every minute of life he could, 6 - 8 weeks has become nearly 3 years. I said my goodbye weeks ago and will always remember the last boys night out, a dodgy 2 piece rock band singing covers in a village pub. Laughter, beer, hugs, beer, memories, beer, well you get the gist. What I'm saying really is that night sat alone in a dark front room with shit TV on, I was desperate to know where I was going to start from, if I could fight I would, with every ounce of my being, but I needed to know. After another night of bad TV and no sleep, I was out of bed at 5 and I started on the phone at 8.30, the last time I saw Nicola she always uses these 2 days as my bench mark, she remembers the panicked begging voice on her answerphone and says "look how far you have come". But that morning I was still at the start and I was a mess. I hid away from the kids until they left for school that morning, I just couldn't do it, they would know something was wrong they only had to look at me to see that. By 1130 I had left more messages and heard nothing, then the home phone rang. For someone who had desperately wanted it to ring for two days I couldn't pick it up. I let it ring again, and again and then it was in my hand "hello?" "Hi Darren, it's the pre op assessment team office, we need to book you in for an assessment, I see your surgery is next Wednesday, can you come in tomorrow?" I lost myself, "it wasn't the results, f**k, why isn't it the results?" I agreed to come in at the time and then said "Do you have my file, do you know my results of my chest x-ray?" They couldn't tell me, it wasn't them that would tell me that it was my nurse or consultant. I begged and as I begged I walked up and down the hallway, my wife and mother in law were watching me from the kitchen, eyes and ears on stalks, trying to pick up the conversation form my words and actions. I begged again and they relented, now I don't know if they were allowed to and if I knew their name I wouldn't use it in case they got in trouble but that person was truly wonderful to me, "Ok Darren let me look, right this will need to come from your doctor or nurse but let me read your file, ..........no sign of secondary metastasis", "no, really, no" I had collapsed, I can still feel my knees hit the floor and the tears on my cheeks. I'm not embarrassed I'm crying again now as I write this, "no, you're sure, no?" My wife ran up the hall screaming "what is it? what is it?". Through sobs "no secondary mets, no secondary mets...", it may have started the fight but I had now thrown my first punch. I'm sorry young man it's malignant...... they were the 6 words that changed my life forever, completely and totally, in an instant. I felt scared, sick, confused and didn't really believe that they were talking to me. I can remember them talking, my wife crying and me having a conversation in my own head.
"Malignant, what one's that? Is it the bad one? or is that benign? No it must be bad, they look sad and Emma is crying so it must be the bad one. F**k I've got cancer, s**t I'm going to die, no I won't it's in my leg, chest x-ray, why are they talking about a chest x-ray, how is that connected to my leg". The sound of his voice became clearer, less like it was underwater, "So Nicola will be with you now, this is Nicola, ask her any questions you may have". And with that the room emptied a little and my journey into treatment began. Although this isn't the start of the journey really, to understand how I got to that room I need to go back a couple of months and finding the lump. It had been there a couple of weeks, I'm a man, I ignored it, well I rubbed it a lot, poked it and even showed it to my mates but then one night I had my shorts on and as they rode up when I went to put my trainers away my wife saw it and asked me what it was. The conversation went a little like... "What's that?" "lump", "how long has that been there?" "Don't know, couple of weeks", "when you going doctors?" "I'll try and go this week, I'm busy", "No you're going tomorrow, that needs looking at", "ok I'll try and get in". And that was it, no worry, no panic just a funny lump and a trip to the doctors to keep the peace. The doctor didn't seem worried, talked about weight loss, looked at me talked about weight gain, and thought I'd developed a fatty lump as I'd put some weight on over the last couple of months. She arranged an ultrasound and I left fairly happy and ready to wait for my appointment to come through. I had other things in my mind, my third child was due anytime and we were getting ready for that so everything else played second fiddle. Charlie was born a week later, the 11th December 2012, and my main thought at the time was I really wished he had been born on 12/12/12 because that was a cool date. My appointment came through the week after and I got to x-ray, checked in on Facebook and moaned about the queue as you do, then sat waited for my turn on the bed. I talked the normal small talk with the staff and then all of a sudden a thought popped into my head and I couldn't shake it off. In September a friend of mine had been to an optician to check why he was getting headaches and was diagnosed a couple of days later with a terminal brain tumour and I suddenly thought what if this is cancer...? could it be...? no it can't no one has mentioned it. He scanned me and told me he couldn't see into the middle of the lump and that he would need to refer me back to the GP to see where to go from there as it would need to be checked, this raised the fear levels again but my brain kept saying "it's fine, no one has said cancer, stop being an idiot" and by the time I got home it was out my head again and life went back to bottles, nappies and no sleep. Christmas Eve my phone kept ringing from a withheld number, answer that? not a chance, I don't answer withheld numbers if it's important they'll leave a message. The 27th it started again, it was winding me up, and then I answered the home phone. "Hi Darren, it's the doctors, we have written to you and I didn't want you to open the letter and panic, we have referred you to the sarcoma clinic but we didn't want you to google it if you hadn't heard of it and start to worry". Now I've been bitten by that dog before and there was no way I was googling a thing. I went to clinic 2 days later and then it all just sped up, but still no one talked about cancer, and I definitely still avoided mixing google and sarcoma like the plague. My wife did it once, looked at the results and shut the page in less than a second!! I was referred for an MRI, back for results and now for the first time people started looking at me sympathetically. "Well were not sure, nothing to be worried about, it could be a fatty lump, it's just that it doesn't change colour when we do this" were said and then another referral to the regional sarcoma specialists. This is when it got serious, I realized something was wrong deep down, way at the back of my mind, but I could still control it. Another appointment and then I was having a biopsy, I think I knew at this point and when the consultant looked at the sample and said "yes just as we expect" I think I knew I was in trouble, but still as no one had said cancer I still would not even entertain it, not a chance. Results were due in 2 weeks, fine, it was my daughters birthday on Sunday, I left and drove home. My wife and I sat in silence on the way home, I think we looked at each other once, but not once was cancer mentioned. The phone call came on the Tuesday, "can you come in next week, we have clinic on Monday and we have made you an appointment at 2pm". Still nothing to worry me, the optimist in me was saying they are calling you in because it's nothing and they want you out the system. Now the staff are brilliant, and the décor and magazines fairly up to date but oncology outpatients is not a great place. And there I was, the 11th of February 2013, sat with people who had cancer, what the f**k was I doing here? In I went about 2.30, my consultant I've now discovered is always running late, more about his wonderful way with people than anything else, but still we were running late. The door opened in he came "I'm so sorry, we need a report from pathology, can you come back at 3.15?" really, why? can't we just do it now? ok I'll get a coffee. Back we came at 3.15pm and in we went at 3.30pm. Even at this point I still was saying outwardly that I was fine, it was nothing. I didn't realize my wife had heard them talking next door, she had heard that "it's a sarcoma" and then the door opened and into a room that was already claustrophobic and small came my consultant, a nurse, and someone else. Then came the 6 words that started this blog, and my world came crashing in. Nicola was great, she told me she was the sarcoma nurse and that she was there to look after me, gave me her phone number and said that my pre op for my surgery would be that week. I was given a slip for a chest x-ray and a blood test and I walked out the room. My wife was in tears, I was close, and outside the room was a couple, they looked at me, looked at my wife and the looked back at me. I was given my first ever "it will be ok" look, and then it was x-ray and blood test. I know I had them but I don't really remember them, I wanted to be home, to see my kids, to hold them, to plan my next move. I needed to be in control, I've always controlled my life, always, even the army didn't control me and this wouldn't. How wrong I was. AeedNichola is che, , s**e e ee saggne?eown oion in wwwim ta m mm, sick,redrlately hanged hhhterthatttha This is my favourite song of all time, I first heard it just after a mate of mine had died in a climbing accident on Mount Snowdon, the cancer bit of it never really came into my head really, the wanting to live, the dancing for them when they had gone and really enjoying life did. I took this to heart when Mac died, we had served together and a man who enjoyed life more you would never have met. Then it came on the car stereo the morning after my diagnosis as I took the kids to school and I heard the words in a completely different way. I couldn't listen to it, I loved this song but I couldn't listen to it and that really was the start of my "issues". To get there I need to go back again to my diagnosis day, the one in the previous chapter. Is that what you call it in a blog? I will for now until someone tells me anyway!
From the hospital I went straight to where my eldest son was playing football, he had been offered his first contract by Derby County the previous august when he was just 7 years old. The pride on his face that night was a wonderful thing, he was determined to make it to the academy and the first team and that night as he got close to his official contract signing he was playing with the smile everyone knew. I walked onto the balcony in a bit of a state of shock, the first parent I saw looked at me and asked "you ok?". My answer "No, I've just been told I got cancer". Now everyone who has ever said that sentence knows the look that you get, the one with the slightly tilted head and look of concern with the eyes saying "God, what do I say to him / her?". Then comes "you've got to stay positive, that's really important". I got both of those and then a couple others did the same. It was really uncomfortable, for us all I think. I made an excuse about fresh air, walked out, came back in and stood at the end by myself. I didn't really want anyone with me in all honestly. I stood on the balcony and watched him play for about an hour, he had such a big grin on his face, he was truly happy. Inside I was in turmoil, in the car park at the training ground we discussed it and decided the kids were not to know, at no cost and I knew when I saw that smile that was the right choice. They did not need to know unless they really needed to, and that was a decision that would be made on the outcome of the chest x-ray results. I took him home that night to my in-laws house where we were staying at the time, I even cooked tea, home made burgers, sausages, wedges and salad. I can't believe I remember that but at the same time I can because of the atmosphere. Everyone ate, chatted, laughed around me, doing the normal things for the kids and I just sat and pushed food around my plate. After they finished eating I went to the bathroom, I pushed the door closed and the whole day came out. I sobbed, not cried, sobbed. Then I stood in front of the mirror, looked my self in the eye, washed my face and went out and got my kids ready for bed. A little while later the eldest two had gone to bed and I gave my 2 month old son his bottle, it was just me and him, and I promised him I would never give up, never. I had taken the other two to nursery and school on their first days and I would do the same for him, I would see them married, have kids, live their dreams. I told him over and over. I don't know if I really believed it, deep down I knew this wasn't a straight fight, I had lost control and I didn't know what I was fighting yet, for the time being anyway. I could promise though that I would fight, this thing had picked the most stubborn, obstinate and determined person to pick a fight with. I was a soldier for 10 years, I have never backed down from a fight. I didn't sleep that night but that was no surprise. I kept getting up, walking around, watching bad television, do you know what sort of crap Sky has on at 3.30 am? I do now. All I could think is "I've got cancer, what if it is in my lungs? will I die? what does death feel like? who will look after my family? They all come to me when their upset so who will they go to when I'm not here? I felt guilty, I was going to cause them all this pain and I couldn't take it away." This was all cut with "I will beat this, yes I will, they have made great advances in treatment, I'm in for surgery next week, once it's out it's out, surgery and radiotherapy not a problem." I think I slept a little in the end, just an hour or so, the super juicer 3000 + or whatever it was advert did it for me and I finally let my brain shut down and try to recover from the hammering it had had all day. When I woke, for just a second, I didn't think, and then my first thought of the day was "I've got cancer" and off my brain went again in every possible direction it could. I showered, rubbing my leg and looking at my lump with real hatred, if I could of ripped it out I would of there and then, but I had jobs to do and the kids needed to get to school. They were their normal selves, didn't want to get ready, arguing over who sits where for breakfast. The normality was soothing and again I got a respite as I just did the simple jobs that needed doing and then we got in the car. The engine and the iPod started and coincidentally my favourite song came on and I realized I couldn't listen to it, I just couldn't. That song plays another key part in my journey and I'll talk about it again later, but please just click and enjoy it, it's a brilliant song from a brilliant artist and is still now my favourite ever song. |
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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