Well here I sit, my normal spot at the WRVS cafe at City Hospital Nottingham. I've had my chest xray amd now its my routine that is kicking in. My radiologist was the lady who first did me back on 11th Feb 2013, she has done me lots of times since but everytime that doubt nags, the pattern, the previous experience..... I'm not one for food photos either but again another part of the routine..No coffee it makes me even more hyper than I already am and that isn't a good thing!! Nice cup of weak tea and loads of sugar, I know I'm on a diet but today is a lots of sugar day...
It's because I haven't eaten yet, I can't face it, I feel sick to my stomach, I can taste it in my throat and it is making me worse. I'm not overly scared, I'm fidgety, I want it done and over now but I'm not scared so to speak. I am worried of course, I don't want to be told there is a recurrence but I know now after speaking to so many wonderful people that a recurrence doesn't always mean terminal, it means a pain in the arse and a lot more treatment but it doesn't always mean terminal and thats what I need to think. So OK its 1415 hrs (sorry still use Army time..) and its time for my walk down the corridor. In there 5 minutes before, no more than that because there is always a delay... And then its hello to the staff, take a seat and fidget and fuss until the door opens and "Darren, Darren Evans" is called. OK that's it no more putting it off, wish me luck! Time to start walking....
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Cancer has been everywhere recently, on the TV, the radio, social media has been saturated with it. One reason was that February 4th was world cancer day, we were encouraged to unite, to stand together, to beat cancer sooner. To post a picture, to tell the world who you were united with. I did, I posted that I was stood in unity with everyone who was ever told "I'm sorry but it's,,," I stand with all of them because unless you have heard those words said to you then you can not truly understand what they mean. You can feel sympathy for that person, you can feel shock, upset, a desire for them to beat it but you can't feel those feelings at the same level as that person and you can't feel the fear, the fear that reaches deep inside of you and really does turn you inside out. Please don't think that those words are harsh, selfish or dramatic. No one can be in your head, no one can ask the questions that you ask yourself at that point in time and from then on. The other reason it has been everywhere has been the passing of Terry Wogan, Alan Rickman and David Bowie. All of them, cancer, all of them front page news. I mourn for them, I truly do because they too I'm sure heard the words "I'm sorry but it's...." and in that instant all the success, wealth, fame and everything else would of faded away to the background because it wouldn't have mattered I'm sure. That gut wrenching inside out fear and the worry and guilt for what it would put the ones we love and who love us through goes with those words. I have said it before Cancer doesn't discriminate, it doesn't care about colour, wealth, success, age, sexuality or faith. It is blind to it all as it consumes the person it turned it's own body against, wealth may afford you the best treatment but it doesn't guarantee a win. The passing of celebrities always makes people think, in this case I'm sure it reminded people that cancer is out there, wherever it wants to be and it still wins sometimes. But what about those who don't make the front page when cancer wins, those people are no less important in the fight, in the war on cancer. Their loss impacts on those they loved and loved them, their loss can give great grief but can also inspire. They inspire new charities and foundations, they inspire new awareness campaigns, they inspire "ordinary people" to do "extraordinary things", and those people take the fight a step further down the road to a complete victory. It's those amazing people as well as some other things that have been my inspiration this last couple of days. I have had a difficult couple of days in so much as it has been my 3 year diagnosis anniversary, I know it means nothing really, its just a date, but if you have read this blog from the start you know anniversaries and dates are a particular difficulty of mine. As I started drifting I have seen some people get bad news, people who have read and commented on this blog, people I have shared messages and conversations with and friends. I haven't ever had the news that they have had and because of that I have a future of endless possibilities still, yes Sarcoma might cross my path again but until it does I shouldn't sit and wait for it to make an appearance. I do not know my future, as I write this I do not know where and when or even who will be in my future. I don't know how long it will be, if I will be a success? Or even if I will get the things I want most. I owe it to those who don't have that chance to live mine and live mine well, to maybe be that ordinary person who does an extraordinary thing that inspires someone else's journey or fight....I doubt it I'm just a normal bloke lol but I do still have a lust for life, a desire for love and a need to explore. I do need to realise that I have to stop needing control at all times because I can't control everything, that was a sarcoma given lesson, and I can't keep pushing people away whenever I get scared.
My next scan is rapidly approaching, it's next week, my scanxiety is building and I am having my normal reaction of closing up, pushing people away, being unreasonable, just being a dick. I know I'm doing it, I don't like doing it but I can't stop myself some days. That isn't going to help me so tonight I make a decision to embrace my future. I make a decision to look forward, start walking and don't stop. Let's see what this future brings, the good and the bad because I'm sure there will be both. There will be love and loss as well I'm sure but I don't know when or where so I won't let them dictate my path. I'll lose people along the way and I'll bring more in, that's the exciting bit I guess! There was another reason for 4th Feb to be important and it is the source of one of my true inspirations. My 3 kids are my life, my constant for love and joy when I struggle to find it in life. The 4th was my daughter's 8th birthday. A special day for the most special girl. I wanted to put it here because well it is a check up I have next week and you never know... but also because it gives me a reminder that all days, even world cancer day which can be full of sadness, can also be full of hope and joy. So happy 8th birthday Madison Lily, dream big, love always Daddy x So voting for the 2016 UK Blog awards closed at 9pm today, that's it, voting done, it's now time to sit and wait to see if we made the final. Yes I said we and I sincerely mean we, it's not just me, not anymore, it's a sarcoma thing, a sarcoma community thing!
This blog was not intended for "public consumption" when I wrote that first chapter, Diagnosis and the reality sets in back in July, this was to be my document of my story. I was going to write down my thoughts, feelings and experiences and then when, because back then it was only about when it was coming back I couldn't think of another outcome, when it came back and that it was my time I would leave a link to this page with the people who love me and they would then access it and be able to see my feelings and know my story, warts and all, a story to remember me by along with the memories we created together. It was important to me that they knew that no matter how bad it got I always fought for them, to stay with them because believe me now and always I will fight for those I love and their happiness. I still get scared and feel guilty when I think of not being here but they would know how much I loved them and how hard I fought because they could see just how hard I found this fight. So what changed? I was encouraged to post it, I was encouraged to share it and it was because of that faith in this story and what it could do for others that Sarcoma and Me was turned public and it went out into the world. I can still remember how nervous I felt when I pressed publish for the first time, I wasn't sure I was making the right decision, what if it was only me who felt like this? what if people told me I was stupid for feeling that way? How would I have felt then? Those first couple of weeks were a blur post after post as my thoughts tumbled from my head and onto these pages. I didn't realise during those weeks what was happening but as time went on and the post count went up I realised I was helping myself. All of those bottled up thoughts, fears, memories and issues were not bottled up anymore. I was telling people about them, OK not very many, but I had started and it felt good to do it. It felt like I was taking some control back, that I could feel some of those bad feelings leaving me. They will never all leave, I accept this, there will be relapses, just like last week but this blog has introduced me to people who when they see I'm struggling a quick message is sent and that touches me, it makes me realise that this blog has brought new friends into my life and somehow changed me to allow that to happen. I'm grateful to have them I really am. When I linked it to my twitter account it started to spread quicker and I noticed more and more views from more visitors, then some of those people started to contact me. They told me there stories, asked me about mine, they explained how they had felt the same as me, thought the same things and had the same fears. I couldn't believe it, I wasn't a failure for struggling, I wasn't weak for not being strong everyday, my life was others lives, my fears were others fears. This made me see I wasn't a failure or weak, I wasn't alone, others weren't always positive, others were scared, we are allowed to be, it's OK to have bad days. Every time I saw the visitor and page view numbers go up I felt a mixture of pride and humility. Pride because well because I'm hoping together we can acheive something with this blog and the more that people read it, share it, they see they are not alone from it, changes how the outside world sees sarcoma because of how rare sarcoma is compared to the others. Humility because in comparison to others, and I know I say we are all unique in our journeys, but I know others have a lot more to bear than me and they do, no fuss, no fanfares they just keep fighting and they inspire me to do the same. I guess what I want to say is I am grateful, for those who read this blog, who share this blog, who tell their friends about it and especially those who have voted to get us to London. Yes us because if we get there, wow, we have a new forum to talk sarcoma, to raise awareness, to tell our stories. That's why this is a sarcoma community thing, because it was the sarcoma community that got this blog that far. Thank you. Sincerely. Thank you. It means a lot It's been a strange week, a really strange one. Life has been great recently, I've been positive about the present and future, I've been thinking about the future in great depth, making plans and those plans had given me a huge smile. Then a couple of things went a bit wrong and I wondered if the future was still there, and that's where my head was when my phone "binged" on Monday, Monday was the 18th and the 4 week alarm for my next scan was on the screen. I know it's coming, my head is already thinking on it a little but that alarm just gave me a little bit of scanxiety, I thought it was fleeting feeling but as the week went on it has still lingered, just at the very back of my mind.
This is my first scan at a 4 month interval and whilst it was a huge celebration when I moved to 4 months, it is also a major milestone and they have always been difficult for me, major milestones are a weakness of mine and this one is definitely following the trend. How do I know this? Well I've caught myself rubbing my leg this week, not just occasionally but at a level that has made me realise I'm doing it, I'm noticing my hand on my leg and the routine is back, the same way I always check it for lumps, exactly the same way, and I know why as well. On Tuesday I drove from Derby to Kent to give a presentation and then from there I drove into Europe, across to a small place just outside Maastricht for a team meeting and it took a lot longer than I thought, it was about 10 hours of driving in total and when I got there my leg felt like it was on fire! Pain is a panic trigger for me so this set me off, not massively but just enough for it to be in my thoughts almost constantly, again not at a full blown panic level but just a nagging, an itch that couldn't be scratched. The hotel where I was staying was in a stunning location it really was and on Thursday I caught myself again relapsing. We visited the point where Belgium, Holland and Germany meet and I was compelled to walk to the actual point, to see the marker, to just be there. The reason was that I know I will never go back there, I have no real reason for ever going there again and it was a cool place but it wasn't just the fact I haven't got a reason to go back that was playing on my mind. We had dinner in a great little restaurant and at one point I found myself alone in the corner and I was happy, I didn't want company I wanted to be alone. That's when I caught myself again. I had my hand on my thigh and was subconsciously rubbing my leg but I was also taking what I call mental photos. I couldn't take physical ones, people would wonder what I was doing but I could take what I call mental ones. I look at the place I am, the person I'm with, the thing I'm holding or concentrate on what I'm doing to try and create a solid memory of that very moment. I look or feel and then close my eyes and try to do the same, to see what I've just seen in my mind's eye or feel what I've just felt. I haven't done this in a while, in fact a long time so I knew in that very instance that something just isn't right with me at present, if it was I wouldn't be doing either of these things. I got back yesterday and it was another gruelling journey that ended late last night with severe pain in my leg and it's then I knew, I'm struggling because I'm scared. I'm scared the pain is a recurrence. The fear of a recurrence for those of you who have read from the start will know is a real problem for me. It was the thing that affected me the most along my journey and its also the thing I have fought the hardest to beat and I really don't want to go back down that road. I'm terrified of going back down that road so I need to turn back now, right now. I have had a couple of scares over the last couple of years, most have been imagined lumps, well not imagined they are lumps but they were lumps of muscle, muscle that was supposed to be there and feel like that. My first one was a couple of months after I was declared NED, I was checking myself almost constantly back then and whilst rubbing my left leg, my good one, I thought I felt a funny lump on the side of my thigh. I just lost it, it was a lump, it was back, I was finished, that's it. I was on the phone to whoever would answer, what should I do? I didn't know. I ended up in the GP's office, sobbing with relief because she had told me it was my muscle I could feel, it had always been there but because the same one in my right leg was missing now I couldn't compare the two so it would feel different. I was embarrassed, well actually I was mortified, I had wasted their time worrying about a muscle, I was pathetic. My GP understood, she knew that I was struggling, it was here she first suggested counselling to me, she also asked if I wanted to consider anti-depressants? I didn't. Not because I didn't agree with them or think that they didn't work or wouldn't help. It was because I wanted to save that option, I wanted to save anti-depressants to help me when I was diagnosed terminal and needed something to help me with how I would feel at that point. So anti-depressants were out and at that time so was counselling, I didn't want to admit that I needed help, it was further loss of control which again some of you will know is what is my real problem. That wasn't the only time I went back with a "lump or bump", I went back a couple more times in the first year with them but I also went back when my chest was so bad I couldn't breathe because I was convinced I had lung mets. I didn't, my asthma was out of control but the tightness of chest along with the fact I honestly thought I could feel tumours in my chest sent me back to the GP almost begging for a chest scan. They calmed me and told me, you had a chest xray 6 weeks ago, even if it has spread you couldn't feel it, no way. It was another embarrassment, another feeling of losing it. The worst scare personally for me was just before Christmas 2014, I was getting into a good place personally and then one evening I felt a lump in my stomach whilst I was in the shower. I crumbled. It was a proper lump, about the size of a large pea and it was under my skin. I didn't sleep all night, really, not a wink. I couldn't I was back in the dark place immediately. My stomach was red raw the next morning, I had been rubbing and poking it all night and now it was tender to touch. I went to the GP the next morning I had to get it checked. My GP wasn't there so I saw a locum. He felt my stomach and told me straight away "yes its a lump, it's definitely under the skin, under the fat and it appears to be unattached at present. In my head it was cancer, I told him my history and his face visibly paled. He started filling in online referrals for emergency ultrasounds, he explained it would be in the next day or so, he could get me fast tracked because of my history..... It was hardly reassuring, in fact he put me into proper panic. Only one option, my default option, phone Nicola. I got her that day, Friday, and told her what was happening. As always calmly she reassured me and told me to come into clinic on Monday and they would have a look at me. I felt reassured that I was seeing them but that was one of the longest weekends ever, no sleep, sick feeling in my stomach and what felt like no one to talk to. I was in my dark place and there wasn't anyone to bring me out of it. I don't know how I got through that weekend but I did and as I entered the room I was already close to tears. Nicola and the registrar were waiting for me, he told me to lay on the couch had a prod and told me it was a cyst, something about hair follicles under the fat layer but it wasn't cancer, it wasn't a recurrence it was nothing to worry about. The relief was exhausting, it was another scare and luckily it was relief again, I was lucky, I still am. To this day I have never had to deal with someone telling me it's back and I hope I never do because I still don't know if I will have the strength to face it. I hope I have if that day ever comes but I also hope it never does. I guess what I'm saying is that scares are the worst thing in my life since my diagnosis and I guess I will never learn to cope well with them. Like this week, like this weekend because I'm still sore and still worrying about what is causing the pain, I can cope, its just I can't cope well. It's a lonely place I'm in tonight, there is no one about and no one to talk to. It's all me and my head and thoughts and that's the fight for tonight. It's the target for tonight, just get through until tomorrow and see how my leg feels then. If I'm still sore next week I'll make that call again, until then I will just hope that it is the time in the car that has caused it and the remaining muscles are just a bit sore nothing else. Hi all, Just to say that thank you is the latest post, for some reason they have gotten a bit confused!!! Thanks.
So voting for the 2016 UK Blog awards closed at 9pm today, that's it, voting done, it's now time to sit and wait to see if we made the final. Yes I said we and I sincerely mean we, it's not just me, not anymore, it's a sarcoma thing, a sarcoma community thing!
This blog was not intended for "public consumption" when I wrote that first chapter, Diagnosis and the reality sets in back in July, this was to be my document of my story. I was going to write down my thoughts, feelings and experiences and then when, because back then it was only about when it was coming back I couldn't think of another outcome, when it came back and that it was my time I would leave a link to this page with the people who love me and they would then access it and be able to see my feelings and know my story, warts and all, a story to remember me by along with the memories we created together. It was important to me that they knew that no matter how bad it got I always fought for them, to stay with them because believe me now and always I will fight for those I love and their happiness. I still get scared and feel guilty when I think of not being here but they would know how much I loved them and how hard I fought because they could see just how hard I found this fight. So what changed? I was encouraged to post it, I was encouraged to share it and it was because of that faith in this story and what it could do for others that Sarcoma and Me was turned public and it went out into the world. I can still remember how nervous I felt when I pressed publish for the first time, I wasn't sure I was making the right decision, what if it was only me who felt like this? what if people told me I was stupid for feeling that way? How would I have felt then? Those first couple of weeks were a blur post after post as my thoughts tumbled from my head and onto these pages. I didn't realise during those weeks what was happening but as time went on and the post count went up I realised I was helping myself. All of those bottled up thoughts, fears, memories and issues were not bottled up anymore. I was telling people about them, OK not very many, but I had started and it felt good to do it. It felt like I was taking some control back, that I could feel some of those bad feelings leaving me. They will never all leave, I accept this, there will be relapses, just like last week but this blog has introduced me to people who when they see I'm struggling a quick message is sent and that touches me, it makes me realise that this blog has brought new friends into my life and somehow changed me to allow that to happen. I'm grateful to have them I really am. When I linked it to my twitter account it started to spread quicker and I noticed more and more views from more visitors, then some of those people started to contact me. They told me there stories, asked me about mine, they explained how they had felt the same as me, thought the same things and had the same fears. I couldn't believe it, I wasn't a failure for struggling, I wasn't weak for not being strong everyday, my life was others lives, my fears were others fears. This made me see I wasn't a failure or weak, I wasn't alone, others weren't always positive, others were scared, we are allowed to be, it's OK to have bad days. Every time I saw the visitor and page view numbers go up I felt a mixture of pride and humility. Pride because well because I'm hoping together we can acheive something with this blog and the more that people read it, share it, they see they are not alone from it, changes how the outside world sees sarcoma because of how rare sarcoma is compared to the others. Humility because in comparison to others, and I know I say we are all unique in our journeys, but I know others have a lot more to bear than me and they do, no fuss, no fanfares they just keep fighting and they inspire me to do the same. I guess what I want to say is I am grateful, for those who read this blog, who share this blog, who tell their friends about it and especially those who have voted to get us to London. Yes us because if we get there, wow, we have a new forum to talk sarcoma, to raise awareness, to tell our stories. That's why this is a sarcoma community thing, because it was the sarcoma community that got this blog that far. Thank you. Sincerely. Thank you. It means a lot. This is a photo of me and two of my oldest friends, I have known them for 30 years and when we were teenagers we were inseparable, we were always around each others houses, or out together and even going on holidays with each others families. Then at 18 I left Plymouth to join the army and whilst we still all saw each other when I came home, in the end I stopped coming home as much as my life was developing away from Plymouth and I didn't feel the pull of returning like I had when I was younger. As a consequence of that we grew apart and lost touch as our lives took us all in different directions.
I had tried to find them on social media over the years but had never been successful and then a chance encounter at a corporate event with another old friend enabled us to make contact again. We linked and started liking each others posts and chatting a bit but at the end of last year we finally managed to all catch up and sit down for a beer and a chat together. The years rolled back and we talked like we always had and laughed, we laughed a lot. After I had started this blog I started to look at where life had taken me, where I was headed and last year I also started to get quite nostalgic. I had started to wonder more about those old friends, I thought back to "the old days" and it generally made me smile! I really did want to meet up with those old friends again, not just Adam and Ian, the others, the ones who had seen me on social media and had sent me requests or had accepted mine but I never seemed able to get to meet or a have a coffee with them, I was always too busy or needed to be somewhere else. That's what I told myself but there was also another reason, just a small one, but it was a reason that was eating at me. The people who were around me now knew about my illness, I had spoken with them about it, it was almost in the past for them so we didn't speak about it anymore really. When I met up with people who hadn't seen me in a long time they would ask me about it, I was sure they would, of course they would, they had known I had been ill with sarcoma but we had never talked about it and if I met them the chances were I would have to talk about it again. I know I was talking about it on here and that I had faced my darkest times in writing and survived them, I had spoken publicly and also at support groups but for some reason having to speak to people who knew me and who would want to know all about it was eating away at me. I wasn't sure I was going to be happy talking about it with them as I was I didn't want to open that can of worms again around those that knew me. I know that sounds strange, stupid even but when I talk on here there is still a sense of distance, a sense of invisibility, and I could delete it if I wanted to. When I speak at a group I can choose not to go back, I won't do that the two I have been to have been full of wonderful people but I could choose to do that if I wanted to. As for speaking publicly, I may never see those people again, in fact most of them I know I won't so that doesn't matter either but talking to those who may not have seen me for a long time, those who do actually know me and that I will definitely see again made me nervous. What if I closed up? What if I broke down? What would they think of me? I was as always running late this night, I phoned Ian said I would be there shortly and he told me Adam was going to be there. I had seen Ian before, Ian had come to my talk on Sarcoma and as such we had talked a bit but not much, he had listened to my story but hadn't really asked me any questions and we hadn't talked about how it had changed me since. I hadn't spoken to Adam in over 20 years so I was chuffed he was coming but at the same time I knew that the cancer thing would come up and I was unsure of what I would be like, a year ago I would of used my stock answers, my escape answers and then moved the conversation on quickly. I was getting better now and I suppose this would be a test for myself, a way to gauge if I really was improving, if I really now could talk about it. We hugged, we smiled, we ordered beers and sat down to talk and talk we did! We talked about the old days, old music, old adventures, old girlfriends and we laughed, we really laughed. It was like we were kids again, enjoying each others company and laughing about stupid things. The elephant in the room arrived as an innocuous comment, as a question, just a throw away one. "So, everything is ok with the leg then?" and there it was, the can was open and I had no way to avoid it. "yeah I'm 29 months NED now, still a bit sore at times and feels numb but it's good. I can't run for shit but I'll take that.." and a smile, I actually smiled. I hadn't used a stock answer I had just answered and even made a small joke. The questions then came thick and fast, the standard where, when, how, what happened next ones, the ones we all get asked and to my shock I found that I could talk about it, I answered all the questions without dwelling on the answers or a feeling of panic building. It actually felt good. I was talking and it felt good to talk, more importantly it felt easy to talk. If you have been back to the start of this blog you will know how big a step that is for me to have taken. I found I can talk about my experience openly. Not just in a therapy room, or to Nicola, or in the safety of a sarcoma group, or with the anonymity of a blog page, or just to the ones at the very centre of my world, I could talk about it openly and easily. It wasn't me who achieved that though, it was all those people above, they made it possible with their kindness, patience and love, that's how they got me to that point. When I felt like I couldn't talk they understood and waited for me, when I started and got upset they calmed me, when I just wanted to cry they comforted me and gave me strength to go again. They helped me talk, they helped me open up, they helped me start this blog and they still listen to me now when I go off the rails. That's important because I know I will fall again, I know because a reminder for my next scan pinged up today and I felt the pangs of scanxiety. I beat them down quickly, I used mindfulness and CBT as I always do and it worked, let's hope it's still working the night before! This has also made me think of those who are on the periphery of our diagnosis, the ones who love us, the ones who care and support us. I don't really know how that feels and I think that is a chapter in itself but I do know they get frustrated with us at times, Christ we get frustrated with us at times! I say this because I've been told how frustrating I am and also because I saw a comment on a social media site the other day and it was upsetting for me. Please if you are a carer this isn't a pop at you I can't imagine how it must feel to watch someone you love deeply go through this disease it's just something I saw. It was a discussion about living life to the full and someone said "I wish my partner would be like this but he just won't" I'm paraphrasing but that was the essence of the comment. I wanted to say, please just have a little more patience and faith in him, he is obviously battling and he will want to be that way more than anything but not everyone gets there straight away, some of us need time. It took me 2 years, after being declared NED, it's not always that easy. I didn't comment because I didn't want it to appear that I was "having a go" or worse make them feel bad for what they said. They are obviously frustrated and probably scared themselves and I get that. I guess what I'm trying to say is that if you are a carer please don't take this as an attack and if the person you love is struggling just give them a little time, don't berate them and don't compare them to such and such who is so positive and doing so well because they are probably doing that to themselves. Doing that to yourself hurts, believe me it hurts a lot. Just be there, just wait and when they start to talk keep them going because that's going to be a massive step for them and it's a step that they must take, it's essential they do. Since I met Adam and Ian I've met a few more old friends and I've loved it, I really have. We have talked about the past and the future and I remembered why each and every one of these people were in my life. We have talked cancer as well, we talked sarcoma and each time I have been able to talk comfortably and honestly. No one has given me the head tilt stay strong, they have just chatted and that's helped even more. What I'm trying to say I guess is that I'm finding every time the can gets opened the easier it is to talk, the less scary the contents of the can are and more and more I feel positive about where I am from where I was. So tomorrow at midnight the voting for the UK Blog Awards 2016 opens and I can't believe I'm typing this but I really hope you can all find the time to click on the link on the top right of this page and give this blog a vote? If this blog starts just one conversation on Sarcoma, makes just one person who reads it for the first time get their funny lump or symptoms checked then a good thing has happened.
By entering this blog, it and now by proxy those linked to it will be on the health page of the competition. I am told that people do read the pages and with a word that they probably haven't heard before, Sarcoma, I hope that they will take the time to click on it and explore further, to read the other blogs, to see what the charities do, to talk to people about Sarcoma. I also hope by reading it that they understand that Sarcoma and Cancer in general is not just a physical disease and that the mental health side of it is just as if not more important. If it makes them understand the mind of a cancer patient just a little better so that they can talk to them a little easier or say the right things or even learn when there is a time to say nothing, well that can only be another good thing can't it? Don't get me wrong I am very proud of this blog, very proud. Not because it got me likes and followers but because it gave me a voice, a voice I had lost, it gave me a way of connecting with people, people who made me realise that my thoughts and feelings weren't unique or wrong. I have connected with people who understand me, who know how it feels to feel like there is no future, that you are truly alone, that anger and fear are truly incapacitating feelings. They have also given me strength, a strength that came from kind words and actions, from messages and conversations, from their own humility and determination. Without this blog I never would of met them and I am very thankful for that. So I guess thanks to all of you for reading and supporting me so far, and a very special thanks to someone who I know believes in me, believes in what I can achieve and always tells me that. And just a reminder, Midnight on the 4th Jan, tell your friends and click the link..... Thanks. Hi all. Just a really quick one to say I have added a links page to the site which has some websites for information, reputable ones I hope, and links to some of the other blogs I have come across whilst writing mine. I've included them because when I read them they all resonated with me in one way or another and I wanted to share these stories too. I never actually got around to asking the authors first so I really hope they don't mind me linking them here?
I really hope you can click and read because the strength, humility and humour at times within these blogs show just how remarkable people can be when facing what is probably the most difficult time in their life. The words at times could be my words, the thoughts my thoughts who knows you may see yourself in there too! I've not posted in a while because life has just been insanely busy. The build up to Christmas is always one of the busiest periods of the year for me, it's the one time of the year that I stop work completely, no calls, no emails, no "can you just", it's my time to relax. That means I have to get my workload to a point where I can stop and that is no easy feat!! Add into that 3 kids under 11 years old and the excitement levels they can achieve in the two weeks leading up to the "big man" coming and you can see that whilst sarcoma, my fears, my hopes and my blog are still in my thoughts because I am so busy I can push them down and leave them tucked away. I've said before that used to be my new control mechanism, the way I dealt with things after diagnosis and treatment but it was also how the pressure built and eventually exploded so I don't like to do it for too long these days. It's the 28th today so effectively Christmas is over again for another year, yes I have had the "I wonder if this will be my last Christmas" thoughts and yes they settled in for a few hours but again I managed to control them, I managed to ride them out so to speak and I am really pleased I did because it shows I'm managing to keep making progress with that way of thinking. Although whilst Christmas is over the new year beckons, 2016, new years eve and all the thoughts, reflections and promises made to oneself for the year ahead whilst looking back at the year you had just had. As 2013 started I knew deep down that I had cancer, it was a feeling deep inside me, no that's not a sarcoma joke either! As I sat there on that night I knew that I was going to be in a fight that year, my status on Facebook even intimated it and I prepared myself thinking that whatever happened I would deal with it as I always dealt with things, humour and unbreakable strength. As 2014 started I looked back and realised that I had been right and I had been through a fight that year but I hadn't dealt with it how I had expected to and I had lost a lot of me along the way. I was determined to start again in 2014, to regain control and to rebuild myself in a way I would like, to take control back from cancer and to find happiness again. As I posted earlier in this blog, in 2014 I started to try and find a way, I had some huge ups and downs that year, I had immense highs and I had crushing lows. My scanxiety was still uncontrollable and one of my lowest points was swearing at Nicola, I still feel embarrassed about it now. With support I started to find my way back though, I started to see joy in things, to remember the man I was and start to bring the new version of him closer to the surface. I also started my first tentative steps into the sarcoma community, I started looking at the Sarcoma UK website in small doses, still not about my sub type or statistics but just about the work they did etc.. As I got to the end of 2014 I really was starting to look at myself and life with some more optimism and I was proud of myself. Again my status update on New Years Eve 2014 reflected this and for me personally it was another year, more distance between the present and diagnosis, another year closer to the mythical 10 year point and survival. Why have you gone that far back you may ask? Well for me as I sit tonight and look back on 2015 I have to look at it both in it's own right but also as a comparison to those two previous years because then it confirms to me how far my journey has taken me. 2015 contained some defining moments for me, moments that have reminded me that I am strong, that I didn't fail it just took me a while to get here, that I do still have something to offer to this world, that the future whilst uncertain should not be lived under a cloud of fear and that I can be happy. So what are these defining moments? My first one was the first time I talked about sarcoma and me. The first time I spoke openly in public and not the safety of a therapy room was as a speaker at a charity lunch, in front of strangers and some people who had known about my diagnosis but were not particularly close to me. It was liberating, I could feel some of the weight leaving my shoulders as I described in every detail my journey through diagnosis and treatment, more weight was lifted as people approached me and told me how moved they were by my story and that I should tell as many people as I could. That led to what I think was the most important step for me this year and also in my sarcoma journey to date, the start of this blog. Since July I have been writing down my innermost thoughts, they were never meant to be for public consumption but after some pushing I published them and I have to say thank you to all of you that started to read them and especially to those who have stuck with me all the way through! From conversations, messages, emails and texts I have discovered that I wasn't alone in my thoughts and others out there felt the same way through their journeys too. That helped me realise that I wasn't a failure and that helped me find that part of me I thought I had lost. I've met a couple of people who read this blog and the welcome and friendliness they showed me has meant that they broke down years of barriers and I allowed them almost immediately into my life. I met them at a support group, that is something I never thought I would ever say. I went to a support group for the first time and I also joined the sarcoma community in a way that I would call properly. It is full of some wonderful, strong, kind and truly humbling people and I wish I had joined it sooner. I think if I had opened up earlier I definitely wouldn't have fallen so far and I hope that the conversations I have had with some who have just started their journey has helped them and maybe stopped them falling as far as me. I know we are all different and like I said I'm just a normal bloke but if I have helped just one person and they think I'm a "good" bloke, well then I'm happy, very happy. The one closest to me, the one I love, has also been there this year when things went wrong. There have been some bad times but when I turned to them they were there for me. When I lost friends, when my brain ran away from me and took me back to the bad places they gently brought me back, just some love and a bit of normality was all it took to help me fight those demons. Some words and a cuddle made me realise that I could go on and that the good times would outweigh the bad. There have been times this year I have needed that support, I don't really want to talk about them again, they are all in here, I've written about them before but tonight I'm a bit close to a wobble so I don't want to go there again. I just want to say thank you, to those that love me and those that have came into my life and hopefully will stay. As I look back at the year I also find myself doing what lots of people do at this time of year and that's make plans and promises to myself about next year and where I want it to take me. It will be interesting because hopefully at this time next year I will be able to look back on 2016 and say yes I did it! As I think about it I have found inspiration in a couple of posts that I really want to share with you. They have both made me think about my life, my future and where I want next year to go so please stick with me as I share them with you. This week something stopped me in my tracks and I mean it literally stopped me still as I read it. It was a message left for her daughter by a breast cancer patient who had sadly died that had been shared as a post by her husband. I shared this letter on my Facebook page and I hope you find time to read it if you haven't already. The words in that post were written by in my opinion a truly inspirational woman, her name was Heather Mcnamany and she brought many tears from me, not tears of sadness but tears of, well I don't know what really. I suppose there was some sadness, sadness that her daughter will not grow up with her mother and for a mother that will not kiss her daughter for luck on her wedding day, or hold her first grandchild. It was also the words of a wife that leaves behind the love of her life, you know that one true love that we all search for and the really lucky ones of us find. That special beautiful one that makes our life complete and as cancer patients that one person other than our kids we have that we hate the thought of leaving and hurting by leaving. I also found strength in what Heather wrote, a thankfulness for knowing that true love, for being a parent and experiencing what that means, a strength that even in the end looks to comfort others in their fears and sadness. I found her words moving and humbling, they were almost my words, what I would say to those I would be leaving behind. It's reminded me that we can find solace at the darkest times in our love for others and their love for us, I think love will give us strength when it seems all is lost and for that I am thankful. And while we are talking about strength..... I came across a song, well I say came across, my daughter was singing it and when I googled it I found it and listened to it properly. It's called "Fight song" by Rachel Platten. The words and meaning really resonate, it has an uplifting feel but the words, well they just fit. I was going to link the video here and so I had a look for it on youtube, then I found a different version of it, that version is below.... Strength. These kids have real strength. I sat and cried the first, second, third and well pretty much every time I watch this I cry. It makes me realise again it's about looking at where we are and we we want to go with optimism. These kids have that, you can see it and again their voices need to be heard. That's why I shared their version, it's not just some emotional video, it's sad of course it is, I hate cancer and wish no one would get it, but especially not kids. They should never know the fear, the sadness, they should never have to think about their mortality and this is the reason I want to make 2016 the year I start fundraising at the same time as helping to raise awareness. I will be publishing a just giving page on here soon because I hope to take part in some events this year and I want as much money as possible to go into research against Sarcoma. It will only be by research that we can improve survival rates and prolong life in those who can't be treated for cure. I've got some plans and again I'll publish them as the year goes on and I really hope you can support them if you can.
I want to raise awareness too, that was the reason behind entering the UK Blog awards. I want as many people talking about sarcoma as possible, I want people to know what sarcoma is and not just because them or someone they know has been diagnosed with it. Something like that event could really help spread the word, just the fact that people may be directed here or to others blogs about sarcoma will help us all increase understanding of what sarcoma is and what it means. If you can please let people know about this and the other sarcoma blogs that are out there, get people talking about it, get people reading about it, raise the level of awareness, who knows someone might even go to the doctor earlier and get diagnosed earlier. For me personally next year I just want to be healthy and happy. I want to get to Christmas 2016 still NED. Nothing more nothing less regards my health, I have my first check up at 4 monthly intervals in February and as long as I get through 2 more at 4 monthly intervals they will move me out to 6 months. I can't wait for that, 6 monthly was a distant dream in 2013 and now seems so close I can taste it! Isn't it amazing how our priorities change after a cancer diagnosis, for me now money and success are a very distant relation to my health and I would sacrifice both in a heart beat for good health. Happy for me is to see my kids happy, to see them grow, to see them learn, to share their success and help them manage when they don't succeed. Happy is to continue to feel loved, loved deeply and truly. Happy is to continue to be the new me, the old me is gone I've said that but the new me is not an inferior version it's just a different version. So I guess that will probably be it for 2015, thank you all for taking time to read this blog I really appreciate it and for everyone who has messaged or emailed me you have all changed me and my life in a positive way and for that I am truly thankful. Happy New Year all. x Daz. |
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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