Today is World Mental Health Day 2016 #WMHD2016 and I started it with a tweet... And honestly that is the truth about my cancer diagnosis and treatment. Physically I managed well, I managed quite easily. I experienced pain, nausea, tiredness all the normal things but after 10 years as a soldier I had learnt to deal with them and other discomforts a long time ago. Mental strength was also something I thought I had in abundance, that was until I started to compare myself to others, until I started to feel weak because I wasn't as positive as others were, until I started to feel a failure for not coping with it mentally, until I started feeling guilty for surviving and being happy about it whilst others were struggling. I thought I had it and then in those times I felt like I actually didn't, I felt like I wasn't strong at all, I had been lying to myself all my life. This feeling of failure, of lying to myself was the reason I couldn't and wouldn't talk about it, I couldn't deal with it, I had never been here before, I was an alpha male who had grown up and survived in the men's world of military service and construction, I had always been the strong one for others so for me to show weakness, fear and failure was not an option...
The day I broke, the day I crumbled completely, the day I gave up will stay with me forever. I have discussed it previously in this blog, it is there in all its "glory", it was the day I knew that I couldn't go on like this anymore. I was afraid of dying to the point I had become afraid of living too. I walked into my GP surgery a beaten man, I walked into the room petrified because I was about to say I had failed, I hadn't been able to cope, I was weak and that made me feel like I was worthless. She talked to me with logic and with feeling, she told me that I had carried so much for so long that this was always going to be inevitable but until I had either opened up or this happened then no one would of been able to help me. I was referred to the local mental health service and with the help of CBT I started to fight back against my fears, I started to understand my survivors guilt, my fear of recurrence and death and my need to check myself for lumps almost continuously. This was my first step and was a hard one to take. My next step was 4 months later and being backed into a corner and having to speak publicly about my experiences, I could of backed out I could of said no but I was starting to feel like I wanted to make my first steps into the Sarcoma community, just baby ones but steps none the less and telling my story was the first part. After I made that step, again its all in this blog somewhere I fell head first into the community, I talked to people, I met people, I heard their stories, they told me how they had felt and then it made more sense. I wasn't a failure, I wasn't unusual, I wasn't the only one who couldn't be positive all the time, all of the feelings I punished myself for were "normal", they were quite common among others within the community and I had made myself feel like a failure for no reason. Meeting, talking and sharing with the community gave me the strength to want to help others, to share my experiences with others, to stop others feeling like a failure, to encourage them to talk so they didn't have to crumble like I did before they realised they were like others. I wasn't and I'm not an expert, I'm not on a crusade either but if I could help just one person not go through what I did then I will be a happy man. I wish I had joined the community earlier, I really do, the people I have met have been an inspiration, their strength, their humility, their wisdom and at times their humour have helped me more than they will ever know and I will remain forever grateful to them. The strength they gave me enabled me to start to write this blog, those first words... I'm sorry young man its malignant.. Those words were my third step and I have said just how cathartic I have found this experience, I have been able to look back at it all, to feel those feelings again but to look at what caused them, to look at how I tried to deal with them and how I might have done it differently, I can't say better because my journey was my journey and has bought me to this point and made me who and what I am at the minute. Is that a better man than I was? Is it a better man than I would of been? Who knows, I will never know, what I do know is that I understand myself better now, I understand where I have been and in a way where I'm going. This blog has I'm told also helped a couple of people feel like they weren't alone, like their feelings were OK, like we all feel scared no matter what people expect from us. That I am proud of, immensely proud of and thank you to the people who have told me that. As time went one on from treatment and being declared NED another issue started to become apparent, that was the fear of recurrence and dealing with pains and illness and not immediately thinking its cancer. Life and thoughts for me, for others I'm told, has changed infinitely and permanently, we have a new normal now. We don't and will not ever see things the same way again because our experience has changed us and that change can't be undone. In fact I have been speaking to someone about this very thing tonight, sometimes we want to go back to how we were, we want to not be afraid, we want to be normal. The problem comes from when we can't or we feel like we are not dealing with it or being "normal" quickly enough so we punish ourselves again. We feel that feeling of failure again and we should not. A cancer diagnosis is a life changer, regardless of type, stage and outcome. A cancer journey is a personal journey, an intimately personal journey because whilst we have people to support us we do face this journey alone, no one can change that you got it, no one can guarantee where it will take you, no one can be in your brain and hear your thoughts at 3am, they can help but they can't take them away. For that reason we have to be kind to ourselves, to learn to accept our new normal no matter how long it takes. That doesn't mean we shouldn't talk because we should, then our loved ones and others may understand better this journey we are on and be able to do the thing they want to do the most for us... To love us, to help us, to stop us feeling lonely, to comfort us and to celebrate when we can because after all they will be the ones we turn to when we want, no, when we need someone to understand and to be there. I guess what I'm saying is one of the other hashtags within that tweet. I couldn't and wouldn't talk about how I felt and as such I could and did deal with the physical side of cancer easily but the mental side, yes it broke me because I didn't realise one very important thing... #itsgoodtotalk
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So you may have realised and those who know me have that I have been quiet for a while, its not just here, my entire digital life has been quiet and in some cases completely on hold. It was a conscious decision, I had so much going on in the real world I needed to be present in it, I needed to confront some things and resolve some others so I could find some peace again.
Whilst I was away I missed what is a big milestone for me, well for this blog actually. Its been a year, this blog is a year old, well just over that now. I can't believe it has been a year since I pressed the post button for the first time, a year since I started putting my innermost thoughts "on paper" and in the public domain. I never thought I would, never, but I have and it has changed me and my life. It helped my recovery, brought new people into my life and has given me a chance to look back and actually look at how and what I felt during this journey properly and maybe understand why I was how I was and how I am. The most surprising and honestly humbling thing for me was the numbers, over 208,000 page views. Firstly thank you, thank you all for taking the time to read my words and hear my thoughts. I never thought anyone would read it, I didn't think it would be of interest to anyone, it was just somewhere my kids would always be able to access me even if the worst happened. Secondly if my words have helped just one person, if they have made you feel you are not alone in your thoughts or feelings, if it has made you go to the doctors to get a lump checked, if it has made you talk about Sarcoma to someone you know or even didn't know, then I am happy, truly I am. Third, thank you all to everyone who has found and helped me through this blog, you do know who you are and I remain forever grateful to you and I am pleased you managed to get me to let you into my life because it is better for knowing you. Some of you have given me so much inspiration, your strength has helped me to find strength in myself even when the tough times have hit this year. Thank you, thank you again. I'm not going to bore or bother you with everything that has been going on in my life but there are two things that have had quite a large impact on me and where my life and more importantly my head is at right now. My mum has "joined the club", I can't say much as she is still in diagnosis and planning stages but I will say it has rocked me and brought back some really vivid memories, the first meeting with the CNS, in the comfy sofa room of course, the fear instilled by a GP, the calm reassurance of the specialist and just the entry to the club and the feelings it brings. I don't want to talk to much about it as she reads this blog and I don't think it is fair to talk about her at present, she is still getting everything sorted so I think its best to leave it there for now. The next one is the difficult one for me to think about and to talk about. In July I went for my 3 year check up, my big one, the one I have been thinking about since I was first told I had cancer. The first year and second year were massive and survival at 10 years was, and still is too far away to think of, but 3 years well 3 years and 6 monthly check ups, that was the goal, that was where I wanted to be. I had the check up, my leg and chest x-ray seemed fine, no change to my lungs and no new lumps in my leg, I had made it I was over the 3 year line so when I was asked did I have any worries I said "No", just the one word but it was a lie, I knew it was but I didn't want to ruin that moment because I was happy and just for a minute I wanted to just feel happy not to think about the worries that had been eating away at me. It was wrong of me to do it but I have had so much making me feel shit at the minute I just wanted to forget it all and just be happy. I left and after a couple of weeks it was too much to keep inside and I phoned Nicola, as always she was there to listen, just listen and not judge me on my fears or tell me I was being stupid. I tried to say I wasn't worried but as always with straight talking she told me that if I wasn't worried I wouldn't be phoning.... Point made, me put firmly in my place lol.... I have been experiencing a lot of pain in my original site, well not the actual original site as that has been cut out and destroyed a long time ago!! In the area around where my tumour was the muscles have almost had a constant ache for months, at times it has been pain. I've been told that this could be a symptom of the radiotherapy damage still after all this time and at first I fought my worries with this reason. I controlled it I pushed it down but now it was too close to the surface. Nicola arranged for me to come in and see my surgeon to put my mind at rest so it was back in to my least favourite place in the world to try and get my mind rested... Miss Raurell was as calming as ever, her whole persona is that of calm of logic but by the time she had got to me I had already worked myself into a frenzy, I hated being there and although she said look it seems fine I can't feel any new lumps but we can arrange an x-ray for today and follow that up with an MRI to be sure I just convinced myself that I was back in the club and the fight was about to start again. I went straight to x-ray and had what felt like way too many pictures for just a check up taken and was sent off with a "you will get you results at you appointment". If you have read this blog you will know that I have my check up x-rays on the day of my appointments to stop me from building myself up, to stop what the last couple of weeks have been like. I didn't hear anything about my x-ray but had a telephone call just confirming the date of my MRI, that set the two parts of my brain off against each other again. The logical engineer part of my brain said and is still saying "if there was a problem they would call you in, if there was a problem you would know by now" and its right, its logical but the cancer patient side of my brain is screaming out "if there was no problem then you would not have even needed a scan or an x-ray, this is back, get ready to fight". So that's where I am right now, I'm fighting myself, and that is a fight I just can't win. I survived my MRI last week which is an achievement in itself but Monday can't come soon enough because one way or another I will have the facts again and its the facts that help me control my anxiety and that control is desperately needed. That takes me back to the start of this post and this blog, I have "met" some wonderful people through writing this blog and it is their support that is getting me through this. When I feel like I have no one to talk to or no one I can talk to I can head to Facebook and the great group of people in the 2 groups I belong too will just listen to me rant or moan, just listen and not judge me for being scared or in a bad place or tell me to stop being stupid. This blog brought me into the Sarcoma community and it is the people who are in that community that are helping me get through to Monday and whatever that brings. So thank you again for reading this blog, for joining me on this journey and for understanding just how shit this ride is at times. Thanks again all, I hope you are all as well as can be. x So my weekend didn't go quite as I hoped, an unexpected collision between my head and a bit of 4" x 2" wood mean't headaches, not feeling wonderful and unfortunately missing the first meeting of the West Midlands Sarcoma support group, something I was actually looking forward to especially with this week being Sarcoma awareness week here in the UK. I also know that whilst July is Sarcoma awareness month in the US they are currently petitioning for it to be made official. I'm not sure if signatures outside the US count but it can't hurt to sign their petition and if you are reading this in the US and you are not aware of it the link is here.. Here in the UK today starts our week, a week that we can use to raise our voices, our chance to shout about Sarcoma and raise awareness about the thing that changed our lives. The fantastic people over at Sarcoma UK, everyone who completes an event, everyone who talks about it with their friends isn't just doing it for a week, they do it all year round and that is what it really needs to get our message out. For this week though I hope everyone can do just one more thing, be that sharing the Sarcoma UK video, signing the petition above, taking a golf ball to your GP as part of the "On the ball" campaign, or just putting a link or message on your social media pages. This is the new Sarcoma UK video, please watch it and share it far and wide, the statistics speak for themselves, over half the population have never heard of Sarcoma and only a quarter know that it is cancer! Let's be honest how many times have people looked at you strange when you said "I had / have Sarcoma"? "What is that?" is always the response to me, always apart from once, that is a worrying thing. I have heard too many horror stories of misdiagnosis or delayed diagnosis that has led to complications. The magnificent people in the NHS saved my life, no ifs, ands or buts about it, they did. I was lucky that my GP had seen a sarcoma 15 years before, let that sink in, 2 in 15 years, just 2! It is no wonder that some are unaware or unsure but that doesn't help those that have had to suffer more because of it. There are also people who weren't sure what to do or ignored the symptoms, I was going to, I thought I had a dead leg or a torn muscle, I don't know how long I would of left it if my wife hadn't told me to go to see a doctor, maybe months, I dread to think what may have happened or been the outcome then. I was sent straight to a Sarcoma Specialist after my ultrasound was inconclusive by my GP because they were aware, another lucky moment for me whilst it is something others have again had to fight for. That quick and decisive action helped to control my outcome. I have talked of good luck and bad luck before and how I'm not sure there is such a thing, in my case maybe it wasn't luck but it was because people around me and in my treatment path were aware of Sarcoma. If that's the case, and I think it is, then I owe it to the world to shout loudly because awareness is key to saving lives, to finding cures, to stopping further heartbreak. Awareness saved my life, it really is that simple. This is me, right there, this is the life they saved and this is the person behind this story. I have put this hear because it leads me onto the other part of awareness that I see, the part that relates to a person, a man, a woman, a husband, a wife, a father, a mother, a brother or sister. Sarcoma happens to real people, normal people and they all have a story to tell. Awareness is not just facts, figures, statistics and funding. Awareness is also our stories, our feelings and our emotions. I know that I have got frustrated when I felt that people didn't know how to speak to me, to act around me or that they expected something different. That's not their fault, there is still a tendency to see cancer as an end, to whisper it's name in hushed tones, an uncomfortable feeling as people digest what you have just told them, that you have or had cancer, you know the one, the head tilt one! It happened to me just last week, 3 years on and still happening, it's not their fault it's just the way it is.
My tattoos were being discussed, particularly the one across my chest, It says "The only thing that's left to do is live", I've talked about it before on here but this person asked me "That's nice, is it for someone who died or could of died?" I sat looking a bit uncomfortable and then my friend said "Yeah it's him". I smiled "Yes it's me, I had sarcoma, cancer, 3 years ago and it's a little reminder to myself". The head tilt appeared instantly "Aww I won't look at you the same way again now, Aww I don't believe it" Straight back to the conversations of 3 years before and that's why I want our stories heard too, that's why the awareness of our stories are so important. Yes, I had cancer. There, simple, straightforward and a fact. It has changed me massively, another fact. I see and feel in a different way, not all good and not always constant. I am still me just a different version of me but the thing I don't want is people to treat me differently just because I had cancer. It is not needed because I can pretty much do most things that I want, not all but most, especially on my good days. My bad days are a little different but even on those I don't want sympathy just because. All our stories are different, all of us are dealing with it in a different way and that is something people need to know and understand. All of our stories can inspire, can comfort, can change the life of someone who is new to this club or dealing with it for years. The strength in the stories of others I have met have shown me that I am not alone in my thoughts or feelings and have helped me to process and deal with mine. The strength shown by those who have lost loved ones inspires me to try and be a better man for those I love and who love me, I'm not always but I am always trying. There are two links below of people sharing their stories, please click on them, read them, they say so much about this life with Sarcoma, they show how we are all different, that we all have fears but also strength. Awareness of our stories will show the world that Sarcoma and all cancers should not be talked of in hushed tones, that way only gives it strength through fear. Talk about it, make people aware of it, the symptoms, the treatments, the research needed but also make people aware of the feelings and strength of those who have fought and continue to fight because that can only inspire us all to keep fighting back, to not stop until we win. I go back to when I was first diagnosed and some words that were said to me "Cancer is going to win some days, and other days you are going to" That's the truth, some days cancer does win but every day or every battle we win we get closer to winning the war. What a week it's been. Seriously what a week. I have been juggling so many balls and having so many thoughts I am not going to be critical of myself for allowing myself to go backwards a bit and to struggle with thoughts and feelings I haven't had in a while.
I have been deciding on whether to move to a new job and the stress that gave to me has been huge, it's no wonder I haven't changed jobs very often (nearly 8 years at this one..) because as you can see in this blog change that takes me out of my comfort zone can be unsettling for me and whilst I am choosing to move on this time and that is in my control, I would be moving to somewhere new and I have no real control over what that place will be like.. It's that control thing again, controlling my destiny, my life, what I can do. I know I can't control what others think and do, I can't control every situation but I do like to feel like my decisions are what affects my life because it's my life and no one else's. That's why joining this club and getting on this ride have been difficult because I didn't choose it, none of us did, no matter what people like Noel Edmonds and others say (but more of that another time), but because I can't and will never be able to control what happens to me regarding sarcoma. Last weekend was not great I admit that, last weekend was pretty shit regarding how I felt. Monday was looming, looming large. It would be exactly 3 years since I had the surgery that took the tumour, cancer, out of my leg but not out of my life. The 13th of June, a date that I won't ever forget, so there it was check up day, the possibilty of moving to 6 monthly checks and it was on the actual 3rd anniversary of my surgery. That was just way too much for my brain to cope with and last sunday I just processed it over and over, literally, it took my mind of everything else but put it squarely back into worrying about recurrences. For some reason I think anniversaries are the time it is most likely to be a recurrence, is that odd? I really don't know if that is a common thing or not. If you are currently NED or in remission does it affect you like that? I would love to know, really I would, because since I started this blog I have found out that a lot of how I think and feel is quite common, I'm not alone in it, but this particular quirk I'm not sure if it is just me? Monday morning came and as always I slipped right into check up day routine, I was distant and quiet, my thoughts elsewhere. I wanted to get to the hospital quickly bit at the same time started looking for reasons to delay heading off. I didn't really speak a lot and had my game face on, just get it done, just get it done, over and over in my thoughts. Heading up I put my music on in the car and my mind drifted away, not really thinking of anyone, banal thoughts, just thoughts to take my mind off where I was headed. Parked up headed in, timings perfect, in to X-ray, at the reception and.... "No, sorry you aren't scheduled for an x-ray today", Yes I am, it's my check up day, I'm in clinic in an hour, I always have an x-ray. "Nope, nothing here, you best go to oncology and check.." Routine changed, problems, why has it changed? Maybe they just forgot. After 3 years of this they wouldn't have forgot. Why is it not booked. Have I got my day wrong? Did I miss a check? Shit, I've missed it, what happens now..? All whirring around my mind as I headed to oncology outpatients, having to go in here before I needed to wasn't helping either, I don't like it in there, why would I, why would anyone? "Hi ya Darren, how are you?" Err not great, I haven't got a chest x-ray booked, is there something I've missed? "Let me look, oh no, nothing to worry about it's just been forgotten, take a slow walk back and it will be ready" It's no ones fault, its not really a problem I guess, its just one of those things, but for me on this day my routine changing isn't great, not when I am already struggling, I've talked before I am a creature of routine, change isn't always welcome.. By the time I got back it was there, I was in and out in 5 minutes, then sat at my seat in the WRVS with my cup of tea and my thoughts. If anything the distration of the return to x-ray reduced sitting and waitting time and I was soon heading back down the corridor and checking in for the second time. It was so quiet in here today... That was my thought, oncology outpatients was very quiet, I liked it and not because it meant I may be in and out quickly but because I said to myself "Its quiet because maybe this week not many people have got cancer, that's good". That is honestly what I thought, Monday was my diagnosis day so for some reason I always think every one gets told on a Monday, I knwo they don't but in my head they do. So I sat there actually happy because it meant that not a lot of people would have to have that conversation today, there wouldn't be many tears today, lives wouldn't be changed forever, there wasn't many people here so cancer was having a break and giving people a break at the same time. I wish oncolgy was always quiet, I wish it was always empty, hopefully one day it will be. Into the room I went, on time, that really is a first, "doctor will be with you shortly", thanks see ya. Alone. Heart beating now, stomach churning, fidgeting, tapping, cheels puffing, "come on, come on". I heard voices in the next room, in the office but between the two consultation rooms, I didn't hear much but what I did was one sentence, and what a sentence it was.. Again it's no ones fault, I'm sat alone in a consultation room so no I am not making much noise, the waiting room is quiet so there is no background noise, and a flimsy door and some plasterboard can't contain everything. Bearing in mind I have just said how quiet it is and I don't think anyone else has been called into the other room you will hopefully understand why I crumbled. "I would recommend a needle biopsy" That is what I heard, the eact words, no more no less. "Oh my f**king life, they found something, the x-ray has shown something, f**k, it's in my lungs, how big is it that they can get a needle into it, f**k, they did that last time, f**k, it's back, I f**king knew it". Please excuse the language but that was my exact thoughts, I'm not an angel, I have a bad mouth sometimes, under stress normally and my stress levels had just gone through the roof! I felt sick to my stomach, my head was thinking "how do I tell everyone? Not again, I don't want to do this again" The door opened and I was waiting for the masses, the doctor, Nicola and whoever else would be needed, they would all be there to give me the bad news. Instead it was just the registrar, alone. That's odd, where is everyone? "Hi Darren, sorry about the x-ray confusion, I've had a look and without waiting for the consultant's report it looks fine" I don't knwo if I was confused or relieved, it wasn't me, thank god for that, f**k that's bad news for someone though, sh*t I feel for them, I hope it works out for them. My lungs were clear though and after my physical check my leg, stomach and lymph nodes had no lumps either, it was good, I had done it, 3 years, 3 years since I had cancer, 3 years NED, 3 years I had got to 3 years and that meant 6 month check ups. In my darkest days, at diagnosis, during treatment, when my mental health was close to breaking, this was my target, this was my fixed point. I couldn't think of 5 years and definitely not 10 years but getting to this point was where I put my target and I had got here, f**k sarcoma, I had got here. I made my next 2 appointments with a smile. This year I only have to do this twice. This year tehy will only check me twice becacuse there is less chance of my cancer coming back, That is a wonderful thing to write. I won't lie, there were tears when I sat in my car, not many, just some, no one could see me, no one could hear me so they came, relief came in my tears, I had reached something massive, something I thought I would never reach I had. The relief gave me the crash it always does on Monday night and I slept, I slept without a care, everything else could wait again, I needed sleep and tonight I would get it. Tuesday the other stresses came back but I dealt with them differently than I thought I would. I am supposed to be moving to a new job now but there was some clauses and problems with my old contract and I needed to clear some things up before I could. I asked for a delay but instead got what felt like bullied into trying to make me accept some one elses way of thinking and doing what they wanted. I had never done that before cancer but had lost some confidence since, I felt like agreeing to what they wanted until something happened in my mind, I told myself "you have just reached 3 years, you have made it this far, you have to take your life back, you have to consider your long term future now, you have to do what is right for you, and being bullied isn't something you have ever accepted so don't start now. I didn't, I turned them down. I'm sure there may be some come back off it but this week has reminded me that I do have a future, I am lucky enough to have a future to plan for, other's are not so lucky so I better make the most of mine I owe myself that much. My mood hasn't completely lifted yet because there has been lots of change this week and like I said I don't do change well and I'm not fully in control of my life again yet, I know I never will fully but I can get to a level I'm comfortable with and in a way, life, life that doesn't involve worrying about cancer, normal work and life worries giving me stress is a good thing, it means that cancer isn't the biggest worry in my life anymore. So here I am again, Sunday night, yes I have a bottle of beer on the side but it's only one bottle, not like last weekend. Today was Father's day and I had the whole day with my 3, it's been a bit of a day, they made me laugh, they wound me up, they were cheeky but they also gave me the biggest cuddle this morning and that was why I write this, why I continue to try and deal with what has happened and what might yet happen again, because one day I want them to see this, to read this and understand who there Dad was and why he was like he was, why he had to see the Doctor, why he had a poorly leg, but most importantly in time I want them to know that Dad had cancer and that he beat it, he beat it for them. If you have read this blog before you will know that music has played a massive part of my life and especially this crazy journey. Tonight I have withdrawn from everyone, I am sat alone and the football is on in the background with the volume low, I've sank into the beer bottles but before I lose myself in a bottle of Absolut Blue I am trying to use music to lift my mood, that's some task I tell you because it is lower than it's been in a while. Monday is looming in my thoughts but life and it's pressures are also weighing heavy on my mind and if I add them together and dwell on them both then that bottle of Absolut Blue is looking very appealing.... Anyway, in this blog I have talked about the songs I considered for my funeral when I was in the really dark place, the songs that remind me of my sarcoma journey so far and others that have struck a chord as I have gone along in life. I do have some songs that are my go to mood lifters too, songs that have meaning to me but at the same time lighten my mood, be that with memories or words and I am heading to them again tonight. If you don't mind I think I'm going to share some of them here. It's going to be a strange old mix believe me, my taste is, well I think the word is eclectic, but they all have something that just lifts me. This is my eldest son's song, it's his football song, every matchday we have this in the car as we travel to the training ground, he loves it, he loves the confidence that comes from the song, "I'm the man, yes I am, yes I am" he says makes him feel taller, bigger, just better. I love that he loves it because I do too but the words are different to me. It's amazing how a song can do that, makes two people feel the same but for different reasons. "Somewhere I heard that life is a test, I been through the worst but I still did my best, God made my mould different from the rest, then he broke that mould so I know I'm blessed." "Stand up now and face the sun, won't hide my tail or turn and run, It's time to do what must be done, Be a king when kingdom comes." "I'm a soldier standing on my feet, no surrender and I won't retreat, This is my world." They are the words that speak to me, words of defiance, of strength, of confidence, of a refusal to be beaten For me this is about not giving up, about keeping going when all you want to do is give up, it just makes me think of walking forward, heading to a destination, for me that destination is July 2023, that's survival, true survival. I know it won't be easy getting there and I'm sure there will be some tough times ahead, but if you keep walking forward you are doing all you can. Frank Turner was always going to be in this list, so much of his music speaks to me but this was another of the first songs of his I heard. Even before sarcoma it made me look at myself and my life and made me remember the hopes and dreams I had as a child, as a teenager, a young man, an older man. It says to me that we owe it to ourselves to chase those dreams because life tells us we have to forget them as we get older, just get a job, earn a living, be sensible. If we do that and leave our dreams behind can we really say we have "lived" our lives or did we just go through the motions. If we are just going through the motions then we need to go back remember who we were, who we still are, that should be who we live for. I think everyone knows this song, but when was the last time you thought of the words you were singing? This is my sarcoma community song. A community I avoided for so long, a community I wanted no part of. I joined the club by a twist of luck, by a mutated cell that decided to attack me but I chose for two years to not join the community. I am still embarrassed by that because that was my loss. This song talks about swallowing pride, of people who understand your problem and that if I help you then you can help me. That is the sarcoma community, the only people who can really understand what I am going through, who helped me swallow pride and fear to join them (yes that first step I owe to you wonderful people at the Bournemouth group) because that also allowed me to start to listen and help others where I could. This blog, the messages and emails and the phone calls, by helping those I could I have found that they have helped me, thank you, thank you all. Well the title says it all. What if today was your last day? Could you look back and say you lived your life, you did the best you could, you were the best person you could of been? There are times I'm not the best I can be and the past does drag me backwards, being afraid of what happened before has at times stopped me living now, that's just wrong. We don't only live once we only die once, every tomorrow, every new day is a chance to start again so maybe if we started living each new day like it was our last day we would really make it better for us and those around us because let's be honest, if you are reading this and you have had the words "I'm sorry but it's..." spoken to you about you then you know that fear of this being your last day.... It's the chorus of this one really. When I look in the mirror these days I don't always recognise myself because sarcoma changed me, I have spoken about how and why a lot and I'm not going there again tonight!! I wasn't always strong, I wasn't always the person I thought I would be but hey I can't live back there, I can't regret it because I can't change it. I did what I thought was best, honestly thought was best and that has shaped me and how I am now and that person is finding more strength all the time. No regrets, leave the past back there, it made you but can't control you now. This is a reminder that the best things in life are the little things, happiness is in the little things not necessarily the expensive material things. Somewhere to sleep, some food to eat and love are all I really need to be happy and if I forget that I hope people remind me. I stopped worrying about the material things nearly 3 years ago, I learnt that I really can't take them with me, no amount of money would of stopped me getting cancer, a big house won't stop it coming back and a fast car can't out run it but if I'm happy and I have love in my life well that would be just enough for me thanks and I will be happy with that. I don't know if Ed Sheeran is still cool or not and I don't care lol, I also no there are plenty of love songs that are deemed "better" than this one but I just love the words. I have said through this entire blog that the ones who love us are the ones who keep us strong when we are weak, happy when we are sad and just hold us when there is nothing else that can be done are just so important in these journeys even if at times they are overlooked. The words of this song for me talk of that love, real love, true love, the love that starts when the looks and the lust goes, when we start to fail but still find strength in each other, when we develop together into newer versions of the people we were but still enough to remember why we both fell in love to start with and hope to stay in love until we get older, change more, fail more but still long for that person to be with us. Love, the thing that beats cancer no matter what happens in the journey.
I guess that's me for tonight, finding, playing and listening to these songs have helped me, I'm not heading for the absolut, I might just stay on youtube and find some more of the songs I grew up to, lived to and built memories to. I'm sure you have your own songs for your life, your journey and your future, I would love to hear them if you want to share them I really would. For me music is the key to the soul, it really is and I hope you can see a little further into mine now. Down there on the right among the tweets about football and rubbish that give the impression I am coping well with my impending 3 year check up is a tweet with a link to the BBC television programme called The Big C and me, have you seen it yet? If not please try to.
Firstly it says a lot for CBT and mindfulness that with less than a week before I am back for x-rays and checks that I can actually sit and watch this without collapsing like a warm lump of jelly in fits of sadness and panic, but secondly this programme puts cancer patients front and centre into peoples front rooms and lives. Most people know someone who has had cancer but until it comes into the very centre of your life it is really difficult to understand the full effect it can have. It talks about it, the hopes and fears, the success and failure, problems with treatment, treatments that work, the support of dedicated NHS staff who no messing about here actually save lives, real lives, my life, every day and then most importantly the unconditional love of those who watch us go through it. It talks about cancer in their words, our words, not medical terms or hushed tones but shouting our words as loud as it can. I'm watching Phoebe discuss her blog and she talks how it has helped her stop bottling things up (yes, sounds very familiar to me), I see people going through it discussing their fear of leaving their kids, I see the tears of strength as they, we, take on this disease, head on because there is no other choice, taking it on is all they, we, can do (yes, very familiar again). I have also seen people make the decision not to have any more treatment as quality of life is what they want now above all else. I may be struggling at the minute but tonight 9 year old Mikey is taking on a brain tumour and a 30% survival rate and he is doing it with more bravery than I could manage and do you know what, I'm inspired to look at myself again, to find some strength to get through this next week because if he can manage it then I owe it to myself to try. The opening credits say that 2.5 million people in the UK are living with cancer and a 1000 people join us in "the club" everyday. I have talked before that our fear of it, our reluctance to say it's name, the expected death sentence of a diagnosis is what gives it the ability to create the fear it does and only by changing that reluctance, that fear, by talking openly can we truly beat it. It may win battles but we can win the war by refusing to give it that ability and this programme and it's "stars" do just that. Please give it a watch, their stories deserve to be heard. I have put a link to a fantastic blog on the links page, it is to the blog of Becky and is called diary of a fat bottomed girl. I started reading Becky's blog through finding it on Twitter and I have to say that it moved me, the strength and love she has for her husband and family really did move me but it also made me think about what it must be like for those that love us, us, the patient, the fighter, the sufferer, the person... I'm not going to say that I have never thought about diagnosis, treatment and afterwards from this side of it because I have of course I have, I have changed massively throughout this trip and not just for the best, I have turned to those who love me when I need them, I still do and I probably don't think about how I am affects them and to what extent as well, There are people who love me, no honestly there are, and they have to put up with a lot. I'm not the man I was, I'm not the man I want to be, I'm a pain in the arse, Unfortunately my cancer diagnosis and treatment, yes it was successful, didn't at first give me a new love of life it gave me a fear of the future, it didn't give me mental strength it gave me mental heath issues, I didn't approach everything with a sense of positivity I approached it all with a sense of dread. I lost my sense of fun, my relaxed way of looking at life and for a long while the ability to think beyond the next day. I'm not bitter, not in the slightest. I have met some remarkable people who take this life event and attack it, they attack it with positivity, with strength, with no fear and I admire them greatly. They were who I thought I would be but now I know I'm not they are the people I wish I could of been because then it wouldn't have taken me so long to start to heal. Yes start to heal because even now nearly 3 years NED later I still haven't fully healed and in that sentence lies the problem for those who love me, I haven't fully healed. Losing those big parts of me has made it very difficult for those closest to me, I expect them to put up with my extreme mood swings, my craving for control of my future whilst at the same time my fear that I don't have a long one. I expect them to understand when out of the blue my fear of a recurrence and dying makes me quiet and sullen. I withdraw even further on those days, I need contact, affection, a soft word more than ever but I retreat so they can't be said. I feel guilty for being this way, for having to make the people around me see that or feel down because they know on those days I won't respond anyway. Without going to deep because it's just my ideas and not scientific fact, I think that guilt makes me retreat so I punish myself for not allowing them to be close to me, the punishment is what I deserve for having put them through this. They don't deserve it, I don't either but when that mood is set in, well it takes some shifting. A bit of time and a bit of love work, but it isn't instant. Then there is the other side of the coin...They then have to also be ready for when I'm "up" and ready to take on the world, desperate for more fun and laughter, wanting to create memories and special moments. When I am up they see the man I was, the laid back, impetuous, adventurous, happy man who took things in his stride and laughed. That must be difficult, the change in me isn't a small one and to be reminded of who I was and yet see who I now am must be difficult to take. You fall in love with someone because of all of them, not parts, when some of them has gone or seems to have gone I imagine it can be difficult because you see they are struggling but you don't know how to help. Add to that for me there is rarely a constant, a median line, a "normal" I am either one or the other well that's a roller coaster in anyone's world.
I've stopped talking about my feelings again with those closest to me because I think that they are fed up with it now, it's been 3 years you have to be past it now, let it go, you can't live in fear, all things that have been said to me so when I do talk it is generally only with Nicola or with other patients or survivors, they don't say those things to me so it's easier for me to talk about my fears with them. I know those that love me are there and that they would listen if I wanted them to but it's easier for me to not burden them or make them frustrated with my dark days. I know that it has been 3 years, I know that some people can just go back to normal or be super positive, I know that living in fear restricts my future and if I could change it all without thinking I would do it in a heartbeat but I can't so unfortunately I and therefore them have to live with it until I can. That is a lot to ask anyone and only someone really special will stay by your side when their life is affected by something they can't control. Only someone really special can say "let's just ride out today, it's a bad day tomorrow we go again". That is a truly unconditional love. This next bit it is for me the most difficult part of this chapter to write because I have no experience of it, those who no longer have that person, that husband, wife, boyfriend or girlfriend, that mum or dad or for me worst of all that son or daughter. I can't comment on you or for you or about you because I have never been there, in your shoes walking your journey. It seems almost churlish of me writing this chapter when you have experienced the worst this shit awful disease can throw at a family or a couple. I have met and spoken with some people who have been here and one thing always stays with me. The love you carry, the fact that all of you still carry that love shows to me that even when it wins a battle it can't win the war. Your love inspires you, others, us to push that bit further, to raise that money, to make people talk about cancer, to make people check themselves. That is not just an unconditional love but also an unbreakable one. You inspire me to keep fighting, to win my war in the end, because I have seen the pain you suffer and I don't want those that love me to feel it to. I need to stop talking about myself, you will think it's all about me and this chapter isn't!! So back to those that love us, those that ride this roller coaster with us, you truly are wonderful. Everyone needs someone to tell them they love them and it will be ok, everyone needs someone they can say I love you too, because for me in those dark days all you can really cling to is love. Thank you for putting up with us, thank you for putting up with me, today might be a bad day but tomorrow will hopefully be better thanks to love and those that give it. I took and then posted this photo to my Facebook page on the night of Monday 21st March. I had flown into Brussels early afternoon for a meeting and then after some thought I decided to come back that night on a late flight, although after a spot of dinner following the meeting booking a room and catching the first flight out in the morning seemed really quite appealing. I had a think and just told myself to stop being lazy and get on the flight. I would get home late but it would mean a more relaxed day on Tuesday as my first meeting wasn't until late morning.
I got home about 1.30 am and crashed out, at about 7 the next morning as I was making my first coffee my phone started beeping. I ignored it as anyone who wanted to talk work at that time could "go bollocks" as I so sweetly put it, well until I had at least had a coffee anyway. It kept beeping I kept ignoring it, then the Facebook notification sound started going and I thought "what is that all about, well it can wait..". I was making the kids breakfast and I turned the TV news on and I felt sick. "Explosions at Brussels airports...Terrorist Attacks....Baggage hall...Starbucks...". I couldn't believe it. Christ I was there yesterday, I go there a lot, those poor people, I hope no one is hurt, then realizing that people were, people had been killed and my heart just sank. Anger, sadness and relief. Relief. I'm sorry but I couldn't help it I felt relief. As I responded to everyone who had messaged me I thought "what if?", every time someone said "that was lucky" I knew they were right, and as the facts started to come out my feelings just increased. I had tears for those who were lost and tears that life is so cruel at times. I thought what about if I had decided to change my flights, I would of been in that part of the airport, at that time, would I have been affected? the chances are I probably would of been but I wasn't so it was pointless thinking that way. That didn't change things for the people who were though, those poor people who were and now wouldn't be going home to their loved ones again. I thought about how lucky I was, how those little decisions can affect life in such a big way, how sometimes the smallest margin is the difference between life and death. It took me back to feeling lucky about my diagnosis and treatment. Luck, lucky, good luck and bad luck. Was it bad luck I got cancer? What about good luck it was found and diagnosed early? It would be bad luck if it came back but looking at statistics would I be a lucky one at 5 years if I made it that far? Luck, luck, luck, was it really all about luck? Was Graham unlucky because his tumour was terminal, was that fate, why was it like that for him and why was I "lucky". Steve had a rare cancer, his had metastasized so he was worse off than me, 2 of my mates "unlucky" and me "lucky" how could it be that way? We all had kids so was it fair? This made me struggle, I wanted to speak to Graham but didn't know how to, I felt guilty about being curable and then NED, how could I speak to him about it? I felt guilty that Steve's cancer had spread and he had to face chemo, I hadn't, just radiotherapy and surgery, how could I offer him advice? This was explained to me as survivors guilt and I am told it is common among cancer survivors. It is the same feeling as I felt on that Tuesday morning, sadness for those who weren't as "lucky" as me but relief that it wasn't me and that those who love me still had me in their lives. This is where the guilt comes from, we feel we shouldn't be relieved that we survived and that because there are so many who are so much worse off than us, that could be us, we can't completely understand their feelings but we can imagine them because we have been so close to being them, because of that we feel we can't be happy that we have "made it" to NED. This feeling filled more than one of my therapy sessions, it was one of the key issues I was dealing with and I needed to process it before I could move on, my obsession with luck, with why, with if I would always be lucky. What if my luck ran out, how could I talk to people if it meant being with them meant they would hate me for surviving, how could I talk to someone who wasn't as lucky as me...? Therefore I couldn't be around people with cancer, if it was a 54% survival rate then if I met another person with sarcoma that meant one of us wouldn't be lucky and I would wish that it wasn't me. I obviously wouldn't wish it on them but I still didn't want it to be me, that meant I didn't want to meet other Sarcoma patients. the very people who truly knew how I felt and what I was going through I couldn't meet or talk to because of my issues and feelings centred around luck, luck a thing that would influence my life and future that I couldn't control and I have discussed that I struggle with that before. One sentence in one session still stays with me, one sentence that gave me a kick, one of the kicks I used way back then to start to come back to the world, it was this... "Would you REALLY want it to be you and that your kids, your loved ones didn't have you anymore, that you were terminal?" And my answer... "No, of course not." And in those 4 words I realised that I didn't wish it was me, of course I didn't, I wanted to live for me, for the ones I love, for the ones who love me, and I still do, everyday I still do. I can feel empathy for those who aren't as "lucky" but it's not my fault, I can talk to them because they understand as well, Graham did, he told me how happy he was for me and my family. Other patients who haven't been as "lucky" that I have met since show great strength in their fights but they also enjoy to hear the good news stories and for that they are truly inspirational. If they can be happy for me then I should be too. I can't feel guilty over luck, I don't control luck, if there is even such a thing as luck, I don't make the decisions for others or even myself, I can only live with what happens to me, with the decisions luck makes for me. I will always hope for good decisions and that's not selfish, that's just being human, that is just being a survivor. I've not blogged in ages, it's been about 4 weeks I think, 4 weeks since I was given NED for another 4 months and the great news that if I stay clear for these next 4 months I can go to 6 monthly check ups. So why haven't I blogged? A question I asked myself earlier and that made me log in... These are photos of Ghent in Belgium, I've been there twice since my last blog and if I'm honest I've fallen a little bit in love with the place. It is absolutely stunning both day and night and have loved just walking around, looking at everything and I mean really looking, making memories in my mind just as I've talked of before. It's not been a sad set of memories with thoughts of illness coming back and stopping me seeing them again, they have been good memories, a sort of seeing something that filled me with wonder again, appreciating the little things without thinking of or linking them to illness. I've been all over since my last post, I have been to Ghent (twice), Frankfurt, Plymouth, Hull, Leeds and London. I have discovered Greenwich and what a lovely place that is, as well as locally brewed Meantime Lager I must add which has definitely become a bit of a favourite!! And that's what I mean, I have been so busy that at times Sarcoma and cancer have been pushed down in my mind. I'm not going to lie I have used this as a coping strategy before, it used to be my way of controlling the situation and I think there has been a touch of this again. I have had a lot on my mind recently, not all sarcoma related although some pain and twitching did get me thinking again but we can talk about that later, I mean other things, life things, happiness things, just getting by things. They are probably not that big a thing but they have been enough to get me thinking, to get my brain whirring, enough for them to mean I am keeping things to myself again, keeping worries and feelings inside and using work and life to keep me busy to stop thinking about them. I find it difficult to talk at the best of times, there are very few people I trust enough to talk to when I'm struggling and the problem is that they have their own problems and worries so I can't burden them with mine that's not fair. There has also been some distance created between me and them as well recently and that has made me close up again, I have struggled to talk or even want to talk so I started to bury it all inside again. The triggers have gone off unaided though this time and I have realised what I am doing so I made a conscious effort to stop that as soon as I saw it happening and realised what I'm doing. I have to say poor old Nicola, she only came in to see how I was at my last check and ended up sat in a room chatting with me for ages, listening to all my worries and fears, if you read this Nic and I know you do sometimes lol, thanks you really helped me! I can't say enough how many times Nicola has brought me back from inside me, I thought she was only going to be there during my treatment but no here she is, still listening to me moaning, still trying to get me to face what I'm scared of and giving me options, ways of solving things and showing just how important a CNS is, at diagnosis, through treatment and way beyond. They know how much this will change you, not just as a cancer patient but as a person and those changes will last a lifetime. In my case I think the change is a case of being scared and that in turn causes overthinking, of wanting to solve it all instead of just going with it and that has now overlapped into my way of thinking about everything not just cancer and at times that makes life hard, very hard. Fear is my problem, it is stopping me getting where I want to be. I am so concerned about my future that I forget about the here and now sometimes. I am so desperate to have the future I want, the happiness I want, the life I want because I'm scared that if I don't sarcoma will stop me, if I don't have plans and try to make them happen then sarcoma will take the opportunity away. I am so scared of my past and letting go sometimes that I may not get that future if I don't deal with me so it's not sarcoma taking that opportunity that future away but myself. All of this stops me being here right now, in the present, and that is what mindfulness was supposed to teach me. I guess I do when I am making the memories in my mind but I don't just let the dice roll anymore, I miss that part of me, and again I said it here and before that cancer takes away certain parts of us and unfortunately for me that was one of the bits of me it took.
So what's this post all about? I guess for me it's about normality starting to come back, after 3 years and 1 month I am starting to worry about other things than cancer again, I know I'm not dealing with those worries and decisions well, I'm dealing with them as I did with the other thing that scared me most, I'm burying them deep inside and hiding by staying busy, but I am worrying about them and yes I have recognised what I am doing so I know I need to deal with it. I guess its saying that after a period of time, for me anyway, the thoughts of cancer are still there and for me it is still nearly everyday, but they are now sometimes not the most scary thoughts, not the thoughts that make me sad, at the minute its thoughts and decisions on other things doing that so whilst cancer is still there in my mind it's not the only thing anymore, life normal life is getting in the way and if I'm honest deep down that pleases me a little bit.... 31 months NED, 31 months and counting... That feels so wonderful to say and yesterday also gave me another step, another milestone to aim for. If I am still NED at my next check up in 4 months time, June, then I will not be seen until December! I will have moved to 6 monthly checks, I can't believe it, 6 monthly. I sit here thinking about that, 6 monthly checks, when I think back to the dark days, the early days I couldn't even think 6 months into the future and now it's 6 months between hospital visits and I couldn't be happier.
I know I haven't beaten this yet but I'm winning, I'm in the lead. I have said all along that I'm a survivor at 10 years, I'm a survivor at discharge. That's not looking at the down side, about being glass half empty, it's about being truthful to myself. I have said that was my only goal from the start but as each appointment gets further and further apart I get closer to it, I feel better because in my head the further apart the checks the less likely the recurrence. I know people say "oh but if you were to have something come back then they would catch it early" well guess what I don't want them to catch something early I want them to be confident there is less chances of it coming back, that means longer appointment times. So I'm going to take 31 months, aim for 35 months and then 6 monthly, that's it for now, no more no less, time to breathe, time to relax. My body and brain crashed last night, it always does afterwards and I end up ill, I think the stress leaves and my body just sort of regroups and gets ready to go again. I'm still feeling rough today but it's a good rough, I'm smiling and the pressure has been released. It will build again, of course it will but for now it's gone and that feels great. |
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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