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
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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! |
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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