I love this song, I heard it a week ago and it got to the very core of me. I heard it in the car and straight away I heard the words, not just listened but really heard the words and they made me smile. That sort of love, true, deep, honest love only comes around once in a lifetime and shouldn't be wasted. I'm sorry if this is a spoiler but then I heard the last verse, I heard the line "Then the nurses came, they said it's come back again" and I knew right away what the end of this song was, I actually slumped in the driving seat as I was driving. It's come back again, a horrible line in it's meaning no matter when it's said but made worse because I knew what it meant. I had to watch the video and when I did it hit me even harder. We all live our younger lives waiting for that kind of love, and then to lose it early must be so difficult. I couldn't even think to imagine what it must be like, although I do appreciate the fact that they had found that one love, that soulmate and they had been together, that's more than some get. Then I found myself thinking about it from the wife's point of view and how she probably felt like we all do, especially those of us who may or will leave our loved ones early. It's guilt, that is my overriding feeling and what I've realised is the emotion that has been battering me again this week. We all want to be here for the ones we love, we want to support them, to help them, to laugh with them, cry with them and sometimes just sit in silence with them! So to be the one that causes them pain, a pain that shouldn't be experienced as a husband or wife until you are old and lived a life together and more importantly as a parent especially a pain that shouldn't be felt by children. Knowing I could do that is what breaks me up, makes me push people away, isolates me and makes me feel I don't deserve to be loved like that because if I'm not I can't cause that pain. But then, that love that I feel in return for them is what defines me as a person, is what makes me who I am and is what will be left as my memory. This led me to start thinking about what would be the memories of me that I would leave behind, yes there would be the memories of time spent with me, things done, places visited but what would be the memories of me, what would be the things people thought of when they thought of me. Hopefully as a confident, laid back man who made people laugh, a man that didn't suffer fools and was always honest if not tactful. A good man, who loved without conditions and was as loyal to his friends as he was a pain in the arse to those he didn't like. Then I realised they would probably remember me for tattoos, red wine, a sarcastic tongue and a love of music. Music, always music, my headphones are my pride and joy and I have songs for every memory, person and place that remain in brain and I class as important. I have loved music since childhood, I never had a voice or the temperament to learn an instrument but music in all of it's forms is part of what makes me me. I then started to think about the songs for my sarcoma journey and there are a few, so for this blog I want to share them and what I attach to them in my mind, some good and some bad but all have been part of this journey. Please, if I've not bored you already, listen to the songs but also try and hear the words, because they all have a meaning to me. You all know about Frank Turner and Long live the queen which has been mentioned more than once in this blog so I won't go through that one again or the ones I planned to use for my funeral because they are already here. This means the first one after that is this.. Josie used to play this album all the time in the radiotherapy room, I don't think she planned that I would get this song but nearly every morning it was on as I came in. It reminds me of the initial awkwardness as the pants came off and the taping up began but then it also felt like an omen, a message, "keep your head up" yeah that's what I'll do, it's radiotherapy and it's here to cure me to help me beat this, keep your head up Daz, you've got this. I've already talked about Macklemore and "Can't hold us" sent to me by Emma in America fighting her own battle with Myxoid Liposarcoma and how I used that to get me through surgery and rehab. So I guess the next one is an old one I came across on my playlists and when I heard it..... I turned it up, I turned it up loud! This song can only be played loud, so loud the speakers wobble. When I hear it I sing it like it's the last song I will ever hear, on my good days this song lifts me from my pit of my stomach until my heart and head feel like they will burst. "I'm still alive" just say it, shout it, scream it if you have to. It's right, we are still alive maybe I should remember that more. Next is a song for my kids, I heard it on a video from Derby County FC academy that featured my eldest son, it was a song that was meant to be uplifting and it is, it speaks of my wishes for my kids, it speaks to me of the things I might say if I had to leave, it would be advice that I would give them for when I wasn't here. I have thought about this a lot, what would I say to them, what would I leave for them if I was faced with no option but to tell them. I swore that they would never know that I had cancer unless there was no choice. I still hold to this, my kids are my life and I hope that I never have to have that conversation with them because I don't know if I could. I don't know if I could sit and tell them that I was leaving and I had to say goodbye. I try not to think of this because it sends me to the dark place, and quickly. So to avoid the dark place I'm not going to dwell too much on what I would say to them, they don't need to know at the minute so I don't need to think too hard about it. That song and again the following one will be ones I leave for them though. That I guess is a bit of a cheesy one, but when I was younger, when I was a soldier, I did live every day, week and month like it was my last. I had a wanderlust that couldn't be controlled, I wanted to see every part of the world, to feel everything, to experience life and I wish that for my kids. I want them to remain curious, to desire life and all it brings. For me a man is not measured in the wealth he accumulates before the grave, more the memories and love he accumulates in those he leaves behind, that is the mark of a man and I hope my mark is a decent one, a mark that doesn't fade with time. The next song I first heard in Kenya in 1999, it can take me back to there but it also now has a sarcoma meaning for me. It makes me think about life and the decisions we make and where they lead us. The decisions we make create our memories and what we leave behind, the path we take creates the photos on our walls, the places we see and the friends we make. I've started to think about love again now, that hoping you have given someone the time of their life. We can only do that with love and I'm thinking about that sort of love that makes you daft, makes you silly, makes you forget all common sense, that sort of love that not everyone will ever feel in there life. The ones of us that are lucky enough to feel it should hold it like we can never let it go, it's a privilege and should be treated as such. To love and be loved completely makes us a complete person, it makes us put someone before ourselves. With that thought though we also go back to losing that person and knowing you will never get them back, well that's something I think is impossible to get over. I don't think this song is about that but is about a hopeless relationship, maybe that is actually a relationship with someone with cancer, it can be hopeless, it can come with the chance that there will be one last time you hold that person, one last chance to speak, to laugh, to say I love you. That's why I guess we should be silly, be daft, tell them we love them whilst we can because at the end we never know. This next one is a tough one, it was played at Graham's funeral and it broke me that day. I had never heard it before, I didn't know what it was called but I've found out and now I have to include it here. The words of this song are beautiful, to me they are the words of someone leaving because of cancer, they talk of love, of regret, of fear, of not wanting to give up but knowing they are beat. This song made me cry the first time I heard it and does again tonight. This last week has been a tough one for me, I'm dealing with my fears and guilt again, I'm struggling with the thoughts of leaving the ones I love but tonight as I listen to this next song I realise that I have not left them yet, I am still here, I am still here for when they need me and when they don't. I do still have my life and I do still have to live it, I owe it to those friends of mine who don't and all of those who have had to leave early to make sure my life is a good one for however long it lasts. I'm going to keep fighting, I'm going to get some help again to deal with these feelings because I know deep down I won't beat them alone not matter what I tell myself.I've put the video with the lyrics for this song, if you ignore all the others please listen to this one, read the words. I can't leave this chapter on this song, I want this to be a look into me through the music I love and there is one last song that has spoken to me recently. It's a Frank Turner song but that's no surprise! Well not to me anyway. It's a song about positivity, a song about the celebration of life. It's about recognizing that shitty things happen but that they can't define us. I know that this chapter has been up and down, positive, negative and somewhere in between but if I'm honest that's because that's how I feel at the moment. I am experiencing massive mood swings, highs and lows and yet I can't seem to find the middle ground. I think that makes this last song even more pertinent and maybe I should listen to it more.
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I think about cancer every single day, there is never a day off, never a day when I don't, I think about it every single day.
Most days I manage those thoughts but as I have said over the last couple of days, recently I've been struggling to do that. This makes me not great to be around, I'm miserable, I'm snappy, I look for help, I look for reassurance, I look for people to be there. TI've started to wonder if that is actually the right thing to do, because I really do need to be more self reliant, I need to find the mental strength that I had before all of this started. That will help me get back to being the old me, the confident, laid back, impulsive to the point of reckless, lover of life. That man is still here, he's just down deep, he comes up every now and again but I need him here more often. I told you in the last blog that I used to be laid back, I used to live for now, the future could wait. But now as my future is more uncertain and I can't really control it I find myself looking at it more, wishing for it more. That's made me worse, I can't wish for anything other than a cancer free future, from there everything else will come. From a cancer free future I can see my kids grow, I can see their future, I can love, I can live, I can travel but all of that comes from the first wish, the cancer free future. The problem is it's just a wish and not a guarantee and I have to accept that, well I have to learn to accept that and deal with it. I thought I had, recently I really thought I had, but maybe I haven't. I'm closing up again, I can feel it, I'm lapsing back into my old ways of holding onto my thoughts and feelings and not wanting to talk about them, of holding onto the bad and not processing it well. I think I've let it get a bit more control of me than it has in a while and I need to get that control back. I don't want to close the cancer thoughts off, that way will lead to nothing but trouble, burying them will only store them to give them strength. Dealing with them now and controlling them will remove their power. Yes, I will always need support I know that, and I will always accept any support that's given. I need people to be there I know that too, and I will always hope that they are there when I need them but I can't expect to depend on them all the time, I can't expect them to carry me. I have a small circle of people that I trust implicitly, and only a couple of people who I would call my best friends but I have to learn to carry myself as well. I have to find some strength from inside me again, I know it's there, it always has been before so why can't I find it now? That frustrates me. I'm am though finding it easier than I used to to talk to people who have been in "The cancer club", I know now that they understand how I am, that helps more than I thought it would and I'm glad that I've discovered that. They have the same feelings, they have the same fears, they struggle with the same things. That's why I'm starting to see that a support group would be good for me, it would allow me to talk about these feelings in a place where people won't look at me confused, where people won't think I'm daft for having these feelings. I'm going to my first support group meeting in a couple of weeks and I'm really looking forward to it, I'm going to meet people who have been supportive of the blog and have talked to me about how I feel and how they feel. I feel I already know them to some extent because I know they know how I feel and vice versa, that's quite a thing for me, it really is. I have always been private about things but I suppose that one of the sliver linings from this illness is that some of those barriers have started to come down. Those barriers stopped me before and I won't let them stop me again, but I can't constantly be in a support group, I can't always be around people who have had this disease, they have their own lives, fears and thoughts. Again I need to deal with my dark thoughts again, to find a way to break them before they build to large. I guess I need to rediscover the strength in myself again, the picture at the top has struck a chord with me. I think I just need to clear my head, to get it all out, all the sh*t I seem to be carrying inside my head and analyse why it's there and what it means. It's weighing me down, really breaking me down and it's doing me no good. I need to think what it is that's bothering me, think about what I can do to change it, accept that much of it is out of my control and just trust it will work out. Hopefully if I can accept it I can start to see clearly again, I can start to rebuild again after this latest relapse into the dark places of my mind. I wish more than anything I could just stop thinking about cancer, that I could put it to the back of my mind and just leave it there. I've realised today that I never will and that's impossible. It will dominate and to an extent control my life forever but I have to find my way to deal with that and only I can walk that path. People can support me, but it's support, "to bear all or part of the load, to hold up" as it says in the dictionary, but they can't do it for me, I have to learn to do that myself. Have you recently just sat quietly and thought about your life up to this point, right now, the present, and tried to pick what experiences, places and people have got you to this point and then try to guess what ones will be in your future? I have, I do it every now and again just to reminisce the past in my mind and to try and guess where my future will go. I have to guess because who knows what decisions I will have to make, what people will come and what people will go and where on this world I may find myself. I also have to consider the fact that one day my cancer may return and at that point all bets are off and I will no longer control my life anymore anyway. It is only a consideration though, it may not, but my experiences are telling me those things, telling me that I should always be a little worried because this point, this period of my life now dominates every other one. The people who were with me in that phase of my life are also the biggest part of my life now too, the ones who stood by me, they are the ones who will be in my future. I started scrolling down my facebook profile page the other day, way down, beyond the places I was last month, the photos I took 6 months ago, the inane ramblings I wrote down under the influence of red wine or beer a couple of years ago. I lingered a while on Feb 2013 through to Sept 2013, the start of my sarcoma journey but then I went further back, right back, as far as I could. I found photos and conversations with people, friends, because we were way back then, that I went school with. That chats were awkward, like we hadn't seen each other for a long time but that's understandable. I left Plymouth at 18 to find my way in the world and the Army was my first path, a path I didn't really look back down for a long time. Now I've started to see the odd old school friend from time to time, a chat, a catch up, a talk of old times but there is never much talk of the future, I guess because there was such a gap of me leaving to me talking with them again. I still call them friends because they are and I will continue to keep seeing them and trying to build that relationship again because I still have some great memories of that time, of us growing up, well as much as 16 year old lads grow up. First cars, first girlfriends, first hangovers, lots of firsts, lots. Then came my army years, this was the time I really grew up. These friends are close friends, real close friends, we lived together, we drank together, we fought together, we cried together and we laughed together, god we laughed together. From this time of my life, laughter is the thing I remember the most, we lived as if we would either live forever or die the next day. There were no plans, no future past Saturday night and where we would spend it and your past didn't matter, we were all the same no matter where we had come from. This photo sums up a part of that time, myself and Joe ready for a night out. We had been out to get our clothes early that afternoon, spent the rest of it drinking cheap lager and then heading out looking like, well like this..... I ended that night in the Krankenhaus Willhemstrasse having surgery to my hand because I had fallen over on a wet floor wearing high heels and still holding onto my bottle of beer. We laughed about it then, we laugh about it now, it was just another Saturday night and another story for my list! This point in my life I felt invincible, there was nothing that could ever hurt me, I was a soldier, fit, healthy, ish, and absolutely nothing scared me. How I long for that attitude now? How I long to have that same outlook on life, I know I can't, I know it was a false outlook back then, because it could of never last forever, we all had to grow up. After I left the army I started to work for a living, really work. I struggled at first to make any friends outside of my army circle. I didn't understand them and they thought that no one could of lived the life I had as a soldier. No one could have that many stories and them all to be true! I couldn't understand how they had never felt that urge to see as much of the world as possible and to have a beer in those places. I hated it at first, I couldn't settle in a job and I kept searching for another variation on army life but it wasn't there and then I realised it was actually me and I needed to grow up a bit. I had to when I became a Dad, those 3 dominate my Facebook timeline as most kids do for anyone who is a parent. They come first in my life, their smiles still light me from the inside when I see them. When I was going through treatment I would often just thumb through pictures of them, looking at them growing, enjoying the experiences they are having on days out and holidays. It was those photos that gave me strength when I felt I had none, the thought of leaving them made me fight when I thought I was done, it was them that made we want to live, to hear the words "You are in remission Darren", because then I knew I could look at them again without tears in my eyes and guilt in my mind. There is a definite change in my timeline pre and post cancer, you can see that change in my attitude, my outlook and how I look at life. See that's the point of this chapter I guess, it's that one big experience that completely blocks out all my past and experiences up to that point in my life. I'm not the laid back carefree man I used to be, I'm only just starting to enjoy that part of life again, to have fun and not worry. For nearly 3 years I thought I had lost that part of me, I had lost me in a way, the very core of me. That was one of the problems, I had lost myself along the way, I had lost the way I looked at the world. I eventually started to settle in the world outside of the army, I started to understand how it all worked and I started to plan a future. I didn't make a lot of new friends though, I know lots of people but I wouldn't call many of them friends. I only have a couple of people who I would say are close, a couple of people I can go to when I'm down, when I don't know what to, when I need someone to talk to. I'm a loyal friend and I would do anything for the people I love, I guess that was instilled during my army days, I still live that way now and I know those closest to me are loyal to me. I didn't realise that you need people to help you get through it, I had always relied on myself, that was my way, and again my experience and the people who came into my life altered that. I became someone who could talk about my problems, to share how I felt, to find the strength to talk about my bad days and of course to write this blog. Without that support this blog would still be sat in my mind and fear would stop me. I guess what I'm trying to say is that I think it's people who change our future and how we dream about it. Yes experiences and places will guide us but it's who we want in our lives and them staying there that will create the future we want. This picture is so true, I've met many "lessons" in my life. I intend to hold onto the blessings for the rest of my life, I hope they want to stay in it. To see where my life and my future goes, to see this journey through to the end. I guess this is back to the start of this chapter and me wondering who, what and where will be in my future. I'm scared, I'll admit it, my experience is making me scared, it's making me wonder what this future holds. I said the other day in another chapter that I can't live my life waiting for cancer to come back and I won't, as long as people love me and want me in their lives I will try to live a good life and to share it with them. I owe them that much, the problem is that at the moment I'm struggling and I know what I'm like when I'm struggling, I'm a pain in the arse, I'm hard work. I hope though that when people look through their facebook timelines and they see me or a comment by me that they consider me a blessing in their life and definitely not a lesson.
I've had a bit of a bad weekend, in fact in my head it's been a shitty weekend. This weekend my brain has beaten me, it's give me in no uncertain terms a bit of a kicking and no matter what I've tried I haven't been able to hit it back. I did recognise the triggers building and starting over the last week or so, I've been working long hours, not sleeping, eating badly and thinking about cancer, a lot. Yeah, it's only been a fortnight since my last "all good at the minute" and I published a blog about Steve which was positive but for some reason the doubts and fears started creeping in yesterday morning. I was talking to someone and they said "yeah but the next big one is 50, can you imagine being 50?' I laughed but as I walked away my brain said "you won't make 50 Daz". That was it, it was there, it popped in and dug it's fingers in. It kept repeating itself so I went into CBT mode and thought about that, I thought about what it meant, what not being here in 10 years time would mean. I'd say what it meant for me but it wouldn't mean anything for me, I wouldn't be here, so I thought what it would mean to the people I love and who love me. See that still remains my weak spot, the guilt at leaving those people, the guilt at not being there to pick them up, the guilt of them grieving, the guilt of not having more time with them. That's what gets me, guilt. I went through my CBT techniques, I thought about it, I thought about it hard, my body can't stay scared forever. it will pass, just feel it, think about it...F**k it, no way, I bottled it, I stopped, it was too much. Then I got angry with myself, I had let it in, couldn't face it and then I knew I was in for a bad one. I didn't want to tell anyone how I was feeling, I mean no one, not even those I turn to without fail, they have enough on without me having a collapse. I just haven't found a way to say it's been a bad one properly and yet here I am writing it down. I've felt alone, it's no one's fault and I blame no one, it's been me fighting with myself again and I have been losing. I'm embarrassed as well, I've been so positive recently, I've tried to not let this get to me but just one sentence has. I've struggled to talk about it as well, I wanted to but I stopped myself from telling anyone, I thought I could deal with it alone and I can't. I thought about phoning Macmillan yesterday afternoon for a chat, just to get it off my chest, but then I felt that they have people a lot worse off than me to speak to so I didn't. I just sat and stewed a little, locked away in my own thoughts and fears, fighting my own brain in the "will I make 50 argument". It carried on through the night and sleep was fitful which has made today another long one, I watched my son play football today but can't tell you much about the game, my thoughts were about will I see him grow to be a man, will I walk my daughter down the aisle, will I be there when my youngest son leaves school? Now I know moping about this is pointless and I'm lucky because for some even considering this is not even an option but that hasn't lessened it, if anything it makes it worse because I'm embarrassed by myself and angry too. I have people that love me, I am in remission, I have plans for my future I should not feel this way. I've tried mindfulness as well, today I've had a couple of tries but I just can't seem to clear my thoughts to get to the right place. I listened to some of the songs that get me there and that hasn't helped either, I've explained before that when I use mindfulness I normally end up stood in the ocean, arms wide, looking at the horizon, bobbing in the waves and this song "Waves" by Mr Probz helps me. I discovered it last year and right away it got me, it resonated with me but today even this just didn't relaxed me. I haven't given up though, I've kept going at it tonight, I've kept working at it, mindfullness followed by CBT followed by just trying to be positive. It's working, slowly it's working, I'm looking at the future, I'm planning it in my head, I dreamt about my future last night, one was a horrible dream but one was fantastic. That's how I know it's getting better because before I wouldn't have had the fantastic one, just the bad one and it would of kept me up all night.
Now please don't think this is a post full of self pity, it's not, it's me trying to make sense of my brain, about how a sentence can open this box of worms. If I'm honest I don't know how it did other than maybe the triggers built and built until anything would of started it. I will say writing it down has helped, just writing it I'm seeing the pattern again and I'm also seeing that if I don't give up I can control it again. I have some time with the those closest to me, with those I love this week, seeing them and spending time with them will also help. It's that time that reminds me I can't give up on my future, it's too good to give up on and that's what will focus me, will drive me, will stop these bloody thoughts. I also wanted to write this because I have spoken with someone this week struggling with these sorts of thoughts and I felt for them. They aren't near where I am yet in their journey and they thought they were alone in feeling that way, thought they were going mad and hopefully this will show them that we all get these thoughts from time to time. If you don't I take my hat off to you, but I'd guess you do, you know you do. And if you are also having these thoughts, you aren't alone, you really aren't. Whilst I've been writing this I've had Russell Howard's good news on in the background and I've just seen him interview a remarkable woman. Kris Hallenga has just won a woman of the year award for her coppafeel charity and listening to her speak and then reading her webpage has just humbled and reminded me how f**king lucky I am. Sorry for the bad language I do sometimes swear a lot, it's a hangover from my army days, I'll try and stop. Anyway just listening to her and reading her has made me have another go at CBT, it's helped. I'm worrying about things in remission and she takes on the world. I don't use words like legend or inspiration very often, they get a lot of over use at the minute in the media, but this woman is both. Please read her story, here it is... http://coppafeel.org/kris-story/ So, thinking about it, yes it's been a shitty weekend, sorry for that, but I'm still here and I still have a future, I don't know how long it is but let's be honest do any of us really know that, I'm just going to aim to make 50, to smile when I get there and then look to the next milestone. I'm not over this yet, no I'm not, but I've had another reminder that I'm lucky, really lucky and I can't let this build to this point if I can help it. Another week starts tomorrow, another chance to stop work taking over my life, to eat better again, to sleep more and spend more time with those I love. So come on Monday do your worst because at the end of the day I'm grateful to have another Monday, some people won't. Me and Steve became mates on 13th April 1993 at about 2.30 in the afternoon. You may think that is really accurate and how could I possibly remember it? Well that was when the train arrived at Royston station and we got off to start our Army basic training. He was 17 and I was 18, just a couple of gobby kids who thought they were street smart and knew everything. We were in the same section and slept a couple of beds apart. We hit it off straight away and became good mates. On our first overnight exercise we were partnered up and spent the night messing about and chatting about how and why we had ended up here. We went through the next 6 months of training and then even after being posted we were in the same city in Germany at different regiments so still saw each other, had a beer together, kept on messing about and just being good mates.
We continued to be posted at similar times to places and stayed mates never really ever falling out and then in 1999 we were both posted to the same unit at the same time. We had some great times over the next couple of years, did some things that make great stories, they're unbelievable at times but they really did happen although there is no way I'm writing them down here, not a chance! We then got posted together again to Maidstone and in 2002 I left because I just didn't want to be a soldier anymore. Even after I left we stayed mates and would speak regularly and meet for a brew or a beer whenever we were in the same place. We gave the readings at each others weddings and every now and then still had one of our mad nights out that generally finished in a casino at about 6 o' clock the next morning. Why am I writing all this? Well when I was diagnosed a lot of people didn't know what to say to me so stayed away, some others I pushed away and in some cases it was a bit of both. Steve knew what to say to me and stayed about to help me and support me through it as only he could. I couldn't speak to him about it, I couldn't speak to anyone but he just kept phoning or meeting me for a coffee and talking about rubbish, helping me to fill the days and take my mind off treatment and the situation. He did this all the way through to remission and then it got really hard for me, even as I write that I feel disappointed in myself because I'm thinking how I thought this next bit was going to be hard for me and that was a really selfish thing. We had met for a coffee as I was passing through Nottingham and just as I was about to leave he showed me a lump in his collarbone and said "What do you reckon that is Daz? I'm a bit nervous about it and I'm off to see the Doctor. Go on have a feel, what do you think?" As I sat there rubbing his collarbone and saying "Christ Steve, we're on camp, I hope to God no one looks in this car window!" I was thinking it can't be cancer, out of our group of mates, Graham had a brain tumour, I had been through Sarcoma and the odds of a third one of us getting it before he was 40 just seemed really remote. I also worried because I knew if it was I would have to be there to help him and I still was petrified about what my future with cancer would be, how could I give advice and support someone? But how could I turn my back, he was one of my best mates? Over the next couple of weeks he went through the tests and we kept speaking, he knew I was struggling a bit but appreciated that we could talk and he was asking me if I had had the same tests and how had I found them and then he went quiet for a couple of days. I caught up with him on the sunday afternoon on the phone and as normal he asked me first how I was, hoped I was getting there and then told me "It's cancer, it's Non Hodgkins Lymphoma and I'm at stage 2". I didn't know what stage two was, I had always avoided all cancer information, I hadn't heard about this type of cancer either before but when he said he had secondary mets in his chest I knew it was worse than mine. He told me they were going to give him Chemo to get rid of the ones in his chest as they had cut the two in his shoulder out during the biopsy and they wouldn't operate on his chest. He was really positive or seemed like he was, he had always lived his life that way, always positive, always about enjoying it and it didn't seem like cancer would change that. I felt sick to my stomach, partly because I was worried about my best mate and partly because even now after being told he had secondary mets he was being more positive than me and I was in remission. Then I felt guilty for feeling that way, I should be pleased that he could face it that way, I should be there to help him but I was petrified I couldn't because that meant I would have to face up to cancer, to talk about it, to look at it closely. I was going to have to find a way and that was difficult. Over the next few months we talked a lot, we always spoke a lot but it had always been about rubbish, just messing about but now we were having some really quite deep and for us profound conversations. We talked a bit about what was scaring him, I talked about what had scared me, he talked about feeling either really high or really low, I talked about how I had been the same. He asked me about how my treatment had been, he told me about getting ready for chemotherapy. I had no idea what chemo would be like, I had obviously seen people going through it and heard stories but I didn't want him to hear those as some were really hard to hear and he didn't need that. He still seemed like he was ready to take on the world, he was still Steve and still joking. As his chemo started I didn't see him for the first couple of cycles, he was getting used to it and if I'm honest he told me he was having a fierce time of it. He explained how he felt ill, really ill, how he slept when he could as he was struggling with sleeping at the start of each cycle. Then in the second week of one of his cycles he gave me a call and said he was going to pop over and did I fancy going out for a brew? Yeah, course I did, I'll meet you over at Starbucks. "No Daz, I'll come to you, I'll pick you up" Alright if you want Steve, you sure? I can meet you there, not a problem. "No, No, it's alright I'll pick you up, see you in a bit". That was a weird one and I should of known something was happening, this was Steve, I could tell. Then there he was, a black Porsche pulled up outside and a beaming Steve got out of it. "Do you like it? I just bought it". We got in and drove over to Starbucks, laughing about his Porsche as I had seen all his previous cars! He had decided to treat himself, his words were something along the lines of "Well if anything happens I can always say I had a Porsche..." I smiled because again it just summed him up, once again he had found an opportunity to be himself, that loud, brash but still likeable lad. I started to see and feel that cancer didn't have to take any part of you away, he could still be himself, he was having a rubbish time but he was still himself. It started to make me think a bit about who I had been and had I lost part of that, part of me? I knew I had, I had changed and not for the better, it wasn't for the worse either, it was just that I had lost a bit of me and that was a hard realisation. As we sat in Starbucks we bumped into another mate of mine and as I introduced them I said Steve had been in the Army with me and still was my mate said "Oh you day off today then?" Steve's answer was "yeah I'm having a bit of time off" and that was it, he clammed up, and that wasn't his normal self and I knew not all was well. We went off for something to eat and he told me how he only really had an appetite for a couple of days every cycle and today he was starving. As we ate, I said "you alright mate, I'm sorry if you thought I was going to tell Paul, I wasn't". "No it's alright Daz, I'm just sick of f**king sympathy, people looking at you weird and not knowing what to say or saying what they think you expect to hear, it does my head in, I feel shit enough without them making it worse". This was another realisation for me, I had felt the same way and just assumed it was me, but no Steve felt the same, what I felt wasn't different or weird, I didn't want to tell everyone and neither did he, maybe how I felt wasn't different, maybe I shouldn't feel bad feeling how I felt. We had a chat about it, I told him I had felt like that, I still did, I hated talking about it and he said he was the same, he would only talk to a couple of people, he hated people thinking they knew how he felt, it was easy talking to me because I'd been there. It was true, I could talk to Steve, I thought it was just because we were good mates but it wasn't he knew how I felt because he had been there. That was something I should see, people who had been there would know how I had felt, how I was feeling, they would understand and maybe talking to them would help, maybe being able to speak about it to people who had been there would allow me to see my feelings weren't different. We talked every week for the rest of his cycles when we could and then on his last cycle I was due in for my 3 month check up on the same day. I said I would have it and come down and see him if he was still in. After I said that I started to panic, if I went in and was told my cancer was back I might have to have chemo and did I really want to see what it was about, if I got bad news I wouldn't be able to stop and chat because I knew it would be too much. I was still scared that this was my only future and I didn't want to see it until I had to, I was sure that it would come one day and it could wait until then. At the same time, my mate was going to be sat there having his treatment and I would have to walk right past the door, of course I had to go in, but what if I had good news, how could I go in there and be happy, he was still going through it and didn't know what his future was yet, others would be the same, it would be wrong of me, wouldn't it? I kept swinging back and forth until my check up, I really didn't want to see what chemo looked like, it was not for me, my mate is in there just go.... In the end I did go, I had been given another 3 months clear, I could relax again and I couldn't not go, I had to call in. I walked in and felt sick as I did, here I was around people with cancer, around the thing that scared me most, I could do it, I could be around it, I could see what it meant to have chemo. Yes it scared me, but I could control it if I tried. Steve went through his treatment and finally got given his good news, he was in remission and not long after we were sat at my kitchen table talking about it all. He had started to feel the remission guilt that so many of us feel. He didn't feel he could celebrate beating it as to him in his mind he hadn't and people wanted him to, people expected that of him more than they would most people and he struggled with that. I explained that I had felt the same, I had also experienced the mood swings he was experiencing and I told him he needed to speak to someone. He wouldn't, I could see he was just as I had been, denying it was a problem, keeping it in, I kept on at him and he finally agreed to have a think about it. I realised that I was giving advice, I was helping someone get through it, I was talking about how I felt, christ yes I was, I was talking about how I felt and I could do it, and most importantly it was helping me. It was really helping me. Then something I never thought would or could ever happen did, Steve started talking about his cancer and comparing it to mine, he jokingly said I was soft because I only had one tumour and he had 4, I turned to him and said that his wasn't as bad as mine as my one was bigger than all his put together and that his tumour envy was most unbecoming!! Then it happened, we were laughing, we were laughing at cancer. We had done the think that all squaddies always do, we had found humour in the blackest situation, in the darkest thing and we were laughing at it. It suddenly gave me some more power against it, some more power I could use when times got tough. If ever I get really down I think back to that day and use that memory, sat there laughing over whether it was worse to have more or a bigger tumour, this was a big switch in my head and still is a base point I can hold to if I need it. Life goes on, even after cancer life goes on and we went back to chatting every week, we still talked about it of course , we talked when we were struggling and when we weren't, we both still struggled with what it meant for our future, we both still struggled to plan anything a long time into the future, it was still all about the now. Then in May this year something happened that had a profound effect on me. Steve was travelling home from work and had an accident on his motorbike, he was in a coma by the time he got to hospital and he is still in it. It was a moment where a light came on in my head, we had both survived a fight with cancer, we hadn't won the war but we had won our battles, yet we were also both still petrified it would come back, we were both convinced it would. The thing is, it wasn't cancer that put Steve in a coma, it wasn't cancer that put his life on hold, it was an accident, a bloody accident and that could happen to anyone at anytime. I could spend the rest of my life worrying about cancer everyday but it wasn't going to make my life better, I had a choice, a choice to live my life, to look to my future, to plan for a future, to live a happy life, a life where I do and enjoy the things that make me happy, to spend time with the people that make me happy. Yes the cancer may come back but I could also be in an accident tomorrow, all of us only have a limited time here anyway and spending it worrying about what will end that time will not make that time any better, it will not make it a happy time. Only by trying to live a full life, a life of love, happiness and fun will we make whatever time is left no matter what happens. Therapy was not the end of my issues, it enabled the first step to become the 2nd, 3rd and 4th steps. As I continued my therapy I continued to try the methods I was given, it was not easy but I was learning to push a bit further and then a bit further still into the the panic. The panic wasn't getting any less, it was still crippling when I first felt it each time but as it built I used what I had learnt. I sat quietly and thought about it, really concentrated on the feelings as I contemplated death and what that meant, what it would mean to those around me. The feelings didn't lessen but my body dealt with them differently, it peaked sooner but it also went sooner. Sometimes it would leave me drained and that's when I used the mindfulness techniques to centre me and control that. This was the second step.
The third step happened when my best mate Steve met me for a coffee at about this time to ask what I thought the lump in his neck was. It was Non Hodgkins Lymphoma and it was stage 2 when he was finally diagnosed. Steve had been one of the friends who had stood by my side whilst I had gone through diagnosis and treatment and there was no way I could turn my back on him, no way. This meant I had to face talking and thinking about cancer which was more advanced than mine had been. Steve was a positive person, most of the time, and we talked when he was positive and when he wasn't. This part of my journey needs a separate chapter and will be the next one I write, it was another key step, a really important one. The run up to Christmas that year was the 4th step and strange one, I still thought that it would be my last, I could control the fear of that but it was still in my head. I wanted it to be very special, I wanted my kids to have everything they wanted, if this was the last one I would see they would never forget it. They were spoilt, so many gifts under the tree they didn't know where to look, I turned my phone off for the whole two weeks and just enjoyed their laughter and joy as the excitement built in their heads and hearts. At the end of new years eve everyone had gone to bed and I found myself alone in the front room watching the end of Hootenany with Jools Holland with a good bottle of red, well at that point it was probably my third bottle of good red and I sat and took stock of the year. I raised my glass to absent friends, I always think of them this night and wonder what they would have been doing and then I thought of the year I had experienced. I think I had known the previous Christmas and new year that the lump in my leg being tested was cancer but I had chosen to ignore those thoughts. I had been my typical stubborn self and thought that if it was I would be one of those brave people who would see the positive in everything and what will be will be. Well I had got that wrong! By a long way! I couldn't and wasn't going to be disappointed with myself though, how did I know how I would really react until I had faced it, I didn't. I knew now but that didn't make me weak, no way. I thought of the journey up to this night, I thought of radiotherapy, of Josie and how she had treated me with dignity and humour, of Mr. Perks and Ms Raurell who had planned and carried out my surgery, I thought of Nicola always there to speak if I needed to, of Dave and the mindfulness course and Ben who had shattered my comfort zone with his CBT. I thought of the people who had supported me, my family and friends who cared and carried me through, I thought of the people who had become closer to me through their support, those who hadn't been that close at the start of the year but were now important people in my life. All of those people had played a part in getting me to this New Year's Eve and I was thankful. Truly thankful. I wondered if this would be the last time I saw the bells in, if it was then my kids would remember this Christmas, they really would. It was back into work and a 3 month check up as January started, and step number 5. The positivity I had built up over the break disappeared quite quickly as soon as the reminder popped up on my laptop calendar. I'm not going to write about the feelings as I built up to the appointment because I have before and this was 6 months so still early and the feelings were intense. I looked for and found the people who cared to get me through it and they did, a few words, a look, a smile, they did what they could and it helped, it helped a lot. The same cycle, anxiety and fear, appointment, relief, positivity for a few weeks. On the 7th of February I went to see Frank Turner at the Ice Arena in Nottingham. I've linked some of his songs in this blog and I hope you've listened to them. I was having a great night, live music and a few beers makes me very happy. I was still in the post check up positive stage and had been looking forward to this night. About half way through the familiar opening chords of "Long Live the Queen" started and they punched me in the chest. I have put a link to the song here and really hope you listened to it. Anyway it had as I said earlier always been my favourite song and was about someone dying of breast cancer, it has a line "You live to dance another day..." and I hadn't listened to it since the day after I had been diagnosed. I hadn't been able to and then here it was and I had to listen. I sat for the first verse and then found myself starting to stand up. I had been mumbling the words, almost under my breath, and then I sang, I sang loud. I stood holding onto the railings, gripping them and I sang. I didn't feel until the end the tears on my cheeks, they were streaming down my face, streaming down as i sang at the top of my voice. I didn't care if people could see me, I didn't care what they thought of me, pain and fear were leaving me, not all of it but it was leaving. I was claiming my song back, I was taking it back from cancer and making it mine again. Music has a power, it is what I link to memories, to places, to people. Everywhere and everyone that is special to me has a song linked to them, and when I hear that song, the people or place come straight to the front of my mind. That's how it was in the Ice Arena, that song had reminded me of a friend before but now it was my song, it was my story. "I lived to dance another day, and now I had to dance for one more of us". I had lived to dance another day, I needed to grab that chance, I needed to live, to live well because I had a chance to live still. The song still raises me, I listen to it when I want a lift, it became part of my therapy, it is an ongoing part of it to this day. It's my walking song, it's one of the things that keeps me walking..... Well Monday was a good day. It was a very good day. Monday I got to 27 months, that's 2 years and 3 months or 116 weeks since I went into remission, and I'm still in it. I've been moved out to 4 monthly checks for the next year and then it will be assessed again after that. That means it will be February before I have to walk into oncology outpatients again, February before I have to sit watching the people around me, February before the scanxiety will build again. February when I have the chance of someone telling me I have cancer. It may sound like I'm celebrating, I'm not, not really anyway, I'm relieved more than anything, relief that for the next couple of months I will be able to control my fears a bit easier, that I will hopefully not think of a recurrence as much as I did over the last 3 months, that I won't see a date in my diary that makes my heart beat faster for a month longer. As time goes on the start of my scanxiety is later and closer to my appointment. There are still days I think about me having this illness, in fact everyday I think about cancer in one way or another, but the fear isn't there everyday. Well not full blown fear but some, the thoughts are always when I see or read something, I see someone has died or someone has been diagnosed and I feel for them to the bottom of my heart and then I'm thankful, I'm here, I have another day to live and another dream to chase. I still feel love in my heart, I still see a future, I still see happiness and that makes me grateful, that makes me thankful I got another chance. Monday was also a good day for me in that I managed to control my scanxiety to some extent, I wasn't crippled with fear from the moment I woke up. I managed to keep it under enough control to do a little work before I went to hospital. I started to build in the hospital car park though but my mind was able to go elsewhere, to think on happy times, my brain went to holidays to come, of memories yet to create, my loved ones, my friends, the people who mean a lot to me. On another side I have read and seen some stories and posts of people who haven't had a good week like me. I see some are worried about possible recurrences and some have lost their fight. My thoughts have been with those people as well this week, them and the people who love them. I really do wish all the positivity I can to those suffering and I wish love and peace to all that are grieving. People sometimes forget that the people who love us, the members of the cancer club, have worries too. They worry about our futures, about whether we will be here or how they can help us if we get ill again. That's a tough thing, a really tough thing for them and all we can do is tell them that by just being there for us they are doing all we need. They give us love and that gives us strength, that strength gives us fight, and that fight will always give us hope. I've also seen a story this week of strength and hope doing a wonderful thing in the face of sarcoma, it was the story of Carey Lander of the band Camera Obscura. Through what she faced and by doing what she and her friends and loved ones could they have made great leaps in awareness of sarcoma this week. She raised so much money for research as well but just to see social media, newspapers and even the BBC website discussing sarcoma it gives me hope that we can start to raise awareness. Raise it to a level that people do know what sarcoma is, and of course help those who can to donate to further research into a cure. That brings a better future for us all. It was the future that had been my problem, the fact that I had lost control meant I couldn't face thinking about it but now my brain will go there and enjoys it. I can try to look to my future and the fear of not being there for it is not as strong as it was. If I'm honest it all comes down to the realization that "It may not be cancer that kills me!" My best friend is currently in a coma, he's been in it since May after a motorbike accident. He had been in remission from Hodgkins Lymphoma for a few months and was chasing life like he always had and then....that! It helped me see that I can worry about cancer and a recurrence, I've had sarcoma it is a real possibility, but I could also be in a car crash or some other random event. By fixating my worries on one I have forgotten the others, I've also forgotten that there is a life to live. You can see how big a difference that is to my early thoughts, my story chapters have started to tell you how I started to climb out of that hole but there is still more to come, still chapters to tell about the people and experiences that helped me get to this place. So that's it really for this chapter, a short and sweet one, it's back to the story for the next one but for now I'll dream, I'll dream of a future, a future of a cancer free life, a life of love and good times, because if we forget to live and experience the good times well why did we fight at all? If you want to give to Carey's justgiving page here it is https://www.justgiving.com/Carey-Lander and here's a link to some of her music because it's the memories and legacies we leave that are our footprints in the sand of time....... It's here again already, it's been 3 months and tomorrow I will make the trip to Nottingham and City Hospital for my check up. It's a big one for me. a real big one, at my last appointment Dr Esler said she was really happy with me and after tomorrow's appointment with the plastics team I can move out to 4 monthly checks for the next year and that makes my next appointment in February. Why is this big in my mind? I'll share that now....
Firstly the move to 4 monthly for me feels like a big punch being thrown by me at cancer, it's a big step in my journey both mentally and emotionally. Since I went into remission I have at times wished time and my life away, I have wished whole years away as I wanted to be at 10 years and have no more appointments, discharged from oncology outpatients and then to be a true survivor. People say to me "you should be pleased, you get regular checks and if they find anything it's only been 3 months and they can treat it better" and I understand that logic I really do. Unfortunately my thought and my response has always been "Yes, I agree, but they are checking me more regularly because there is a higher chance of recurrence at this time" and that is why the move out to 4 months is a big step. Mentally it starts to reinforce my positive thoughts, it strengthens my mental state as I now have that first step down in probability of recurrence. It's a small step down but by moving me to 4 month gaps means that they are happy to leave me a bit longer and that's a great feeling. Emotionally, yes that's improved because of my mental state but also it means there will be one less build up to a check up this year. One less time to feel the nervousness I feel tonight, one less time to feel alone, to feel that I need people around me but actually I won't talk to . Tonight is a difficult one emotionally because I am deep down feeling good about tomorrow but even just writing that is starting the little piece of my brain that is saying "DO NOT TEMPT FATE", it's not even whispering it's screaming at me and I'm fighting to leave it in because if I go tomorrow and it goes wrong......well I'll blame me for writing that although I know it really will have nothing to do with it, nothing at all. That's tonight's conflict in my head, I feel comfortable but I'm scared that feeling comfortable is wrong and what a feeling it is!! I sit and relax and then the panic builds, I concentrate think logically the panic subsides, I relax the panic builds, it's been back and forth, back and forth since this morning. I determined not to give in though, I will keep trying to remain positive this evening and night. I can't see me sleeping much, in fact I will probably sleep very little so this battle will rage for sometime yet so it's a good job my sky planner is full! I must admit the thought of the next check up being in February is still a bit of a worry, only because of me and and superstition. Like I said I do have a logical brain, I'm an engineer, but I still won't wear certain clothes or jewelry to my check ups because it was what I was wearing when I got diagnosed. That's where the problem with February lies, it was when I got diagnosed, so my head will make a new worry and will try and connect the dots so to speak. That's when the CBT and mindfulness will come into their own as I try to break that connection, that will be what I will work on over the next 4 months, to stop that superstition and that fear from forming. It would be easy to go to a dark place tonight but when I think of what the last 3 months have given me in my journey, they are 3 months that have given me hope and strength. It's been just over 3 months since I started writing this blog, that in itself has lifted me so much. It has helped me to start to make sense of how I felt back then, I have been able to look at that time and see just how low I was and why I felt that way. I understand now that it was the lack of control that caused my problems, I understand I'm not alone in that, people have messaged me since I wrote this blog and told me that was what they struggled with. In fact I have had some great responses to this blog and have started speaking to new people, I've really started to become involved in the Sarcoma community, I have plans to attend a support group and meet some people who have been very supportive of the blog. I've applied to be a Sarcoma voice, which for someone who could never even look at the Sarcoma UK website before is a huge step. I've now worn out 2 Sarcoma UK wristbands because I wear it all the time, I have talked to people who are where I was 2 and 1/2 years ago and hope that I helped in someway. Please don't get me wrong I am still petrified of a recurrence and the thought of dying and leaving behind the people I love when I have so much more love to give them and a future to enjoy can cripple me, it can truly still stop me dead in my tracks but I can also bring myself back from that brink. Time has also been a big help, I was told by Nicola once that it would get easier in time, I laughed because I didn't think it ever could. Again it's not easy, no where near but it definitely is better than it was and I can only guess it will get better as more time passes. I guess I'm saying that if you are reading this and you are in a bad place then please don't give up there will be a better time, really there will and if you are further along the journey than me and you can tell me that it does get better or even if you have to tell me that it doesn't then please drop me an email or a tweet I'd love to talk about it. Whilst I'm writing this I'm watching the England match from last night from my planner and the commentator has just said "England's next world cup participation will now be in 2019". I can remember thinking I would never get to see this world cup, I honestly didn't think I would get to see it at one time and that one sentence has got me thinking on whether I will see the next one? That's 4 years, I will be on annual check ups then if all goes to plan and I would be 6 years in remission. I wonder what else will be different them? What dreams and ambitions would I have fulfilled? What disappointments would life had given me? All I can truly hope for is that when it comes I am healthy, still cancer free, happy with where my life is and still dreaming of what I have to come. My single step was phoning my GP. That's how I started to return from where I was. I made that first step and I have been walking ever since.
I've not made it anywhere near a thousand miles yet, I've probably not even made it to a hundred, but I am walking and I won't stop, no way, I will stop when I get to where I need to be, where sarcoma and cancer are no longer scary words but just words. I will get to where my future no longer scares me but excites me, I will get to where I will plan for the next year and not worry if I will be there to see it. My GP listened to me and said she had been expecting it, she had thought I would break at some point. She spoke to me about how I was feeling, looked at my notes and saw that I had seen not only her about phantom lumps but two of the other doctors as well. She asked if I wanted medication which I didn't, I have no problems with it but I did know my friend who was terminal was taking anti-depressants and I thought to myself "If I accept them now what will I take when I'm terminal" seriously I was holding back on medication because I wanted to have it available and working for when I had a terminal recurrence. It's only now I see how bad I was, that just isn't a normal thought process but hindsight is a wonderful thing and I write this now not then when I was at my lowest. I was told to refer myself to Derby PTS who were the first contact for people self referring with mental health issues within Derby and I filled my form in online and just waited for them to contact me. They came back within a couple of days and offered me an assessment appointment to see if they could help me. I told hardly anyone I was going, only those who were closest to me, I didn't want pity but I also didn't want people to question why I needed help now I was in remission, people just wouldn't understand. I took the appointment booked it on one of my rest days from work and wondered what they would do for me. I got to what looked like a very nice house in a very nice garden on the outskirts of Derby city centre, I buzzed the bell they let me in and I found myself in a large bright room that was obviously part of a health establishment but one trying not to be. There wasn't many people in the room just me, the receptionist and a lady at the far end of the room filling a form in. I told the receptionist who I was and she handed me some forms and a pen. I was asked to sit an fill it in before I was seen. I filled in the top and then started to read the questions... Do you feel sad and lonely? Do you have no or too much energy? Do you struggle to concentrate? Are you irritable and distant? Do you worry about the future? The answers were based on how often you felt this way and I answered at least once a day to all of them. This was a moment in my journey, a real moment, up there with other key points like diagnosis, start of treatment, first clear scans and so on because at this moment I realised where I was and where I had fallen to. A light came on and then I read the next questions.. Do you have the urge to cause yourself harm? Do you have suicidal thoughts? No I didn't, none at all. My worries were actually that I was petrified of harm to me, I was terrified of dying so no way did or had I considered that. This was another moment for me because it made me realise some people did, they had fears and feelings that caused them to feel low enough to consider that. I realised right then that there were people a lot worse of than me, I had to find a way now because below me was only those feelings and they were not feelings I ever wanted to feel. I wrote in big letters "NO, NOT AT ALL" and then sat and waited for my therapist. He came in and spoke my name, I looked up from my phone, the universal waiting room distraction tool, and saw a young lad who reminded me of Sheldon from The Big Bang Theory. I was taken aback a bit, I expected someone older but I've complained about stereotypes earlier in the blog, so once again maybe I should of listened to my own advice. After shaking his hand it was through a maze of corridors to his office and I thought "Christ I couldn't run out of here if I wanted to, I wouldn't know where to go" and then I was sat down and after he looked at my forms he asked me the question I had been dreading and at the same time desperate to hear for a while. "So then Darren, how you feeling?" Deep breath, then another, then I started. I told him everything, I told him how I was feeling right then, I told him of the panic attacks when I was alone, I told him of the fear that made me feel physically sick when I thought of the cancer coming back, my feelings of guilt as I worried about dying and leaving people behind, I told him I wished I could go 10 years into the future so I knew that I had beaten it, I told him of the constant self checking to the point of being in pain from the constant rubbing and prodding. I opened up and just talked, it was horrible I didn't want to talk but it kept coming out and all the time he just sat there and looked at me. "Darren, firstly stop apologising, you are not wasting anyone's time" Had I been apologising? I must have been? Yeah I was, I was sorry for taking up his time, I knew how ridiculous I sounded, well to me it was ridiculous. "You are not the only person I treat who suffers from these feelings after going into remission from cancer, I have people who are worse than you. I have seen this before and I'll see it again I'm sure, we just need to get you to understand and deal with your feelings. I won't lie this is going to be tough and you won't like it at times but I know what we need to do, do you think you can try it?" I told him about being a squaddie, about being an obstinate awkward so and so and never backing down from a fight until now. I told him I wanted my life back. I wanted to dream again, to dream of places and travel to them, to be impulsive again, to be relaxed again, to be me again. We talked about the "check up cycle" that I thought was unique to me. The build up, the anxiety as it approached, the relief on the day, the period of calm afterwards and then the start of the cycle and the build up again. We talked about the checking and he asked me if I could check my lungs or see into my stomach and brain? I said no and he asked "well why constantly check your leg then?" I had no answer of course I had no answer there wasn't one. "Do you think a tumour can grow in 5 minutes or even 10 so that you can feel it?" No of course it couldn't, that's impossible. "So why check your leg every 5 minutes?" Again, I couldn't answer because there wasn't an answer. It all made sense to the logical me, the engineer me, I deal in logic every day, I work on big construction projects, I offer solutions to problems associated with building large civil engineering projects. Logic is my method of work. Yet when it came to my illness I couldn't apply my own rules and personality to it. That was my homework for the first week, I wasn't allowed to check myself more than once a day, if I did I had to stop and concentrate on how I felt not doing it. I had to write down what I did and how I felt at that minute and see how long the feelings lasted. That next week was a nightmare, I tried to stop every time I felt myself doing it, I wasn't always successful and sometimes I just did it anyway. I tried though, I did try and when I did stop myself I felt awful, I was struck with worry that by not checking I was missing something, it was there and I was letting it grow. Sitting and thinking about how I felt was horrible too and this is the first time I wrote anything about my illness down. There were words like Panic, Fear, Urge, Panic, Feeling Sick etc.. I would love to say by the end of the week I had stopped checking, I won't lie I hadn't but I had started to realise when I was doing it and I was also trying to stop myself when I could. I had started to fight again and that felt good. I came back after a week and we talked again about my feelings when I thought of dying, we talked about would I really give up the next 10 years, not see my kids grow, not see what my life would be, where it would take me and what I would do? I said that I still would, my fear of death was not a fear of dying but a feeling of guilt. This was now added to my "homework". I had to start to explore those feelings when they appeared, to explore until I was uncomfortable and to continue to stop checking myself. That was a difficult week, I kept going on my stopping my check but starting to explore my feelings of fear was horrific. My coping strategy was normally to distract myself, to find something to do instead so to have to start to feel it and see what it was like was really difficult. I admit I struggled that first week, in fact I can still struggle with it even now, but that first week was tough. I tried to do as he asked but I couldn't, it was just too uncomfortable, I didn't want to do it but at the same time I knew I had to. It was a battle because the old me wanted to take it on, to fight it and show it I was in control, but the new me was too scared of what those feelings were because I knew what a real fear of death was now and that was not an easy fear to beat. This was Cognitive Behavioural Therapy and it was hard, I had heard of it before but never really understood it and now I did I didn't like it, it was exploring and facing a lack of control to regain control and it was so alien to me that I really hated it. I hated it but I could see the logic in it, our bodies can't remain frightened forever, there comes a point when it has to beat the symptoms of fear, your heart has to slow down, the adrenalin can't last forever, you have to crash, you have to push through because your body has no choice. The next 6 weeks we continued down this road, every time we went we talked about how I felt, my past, who I was, what had made me. Ben told me some more about him, he liked to run half marathons and liked Scandanavian fashion. He told me how his family had a history of the men dying from heart disease in their early 50's, and it was all of them, not just some all of them so in his head he would only live until then, anything more was a bonus and as such he lived a full life now. We talked about superstitions and luck, about was it bad luck I got cancer or good luck I survived? Did it really matter what clothes I wore to an appointment? He didn't believe in luck, it just happened, life just happened. We based everything in logic, that was our baseline, logic was my thought process when I was well so we had to find it again. You know from earlier chapters that I still have my superstitions about my check ups so you can see that not everything we did in therapy stuck, I still don't wear that watch or clothes, it didn't all become a new way of doing things because I do believe in luck still, well to an extent anyway. What I did keep trying was the stopping of physical checks and exploring my fears and forcing my body to calm itself as a natural reaction. It got easier but never easy, I still have to go through it now when it comes, I still have to use the techniques especially as I get closer to scans and checks. I also try to apply it to other things that scare me, feelings that sometimes overwhelm me I treat the same way. After 6 weeks I felt more comfortable when thinking of a recurrence and what that could mean, in fact comfortable is the wrong word, it's bearable. I still get the sick feeling in the pit of my stomach and my heart races even now, even as I write this and I consider a recurrence it starts but I sit and I think about it, I almost stare it down, I don't back down I ride it like a roller coaster. That's where the mindfulness comes in as well, it still takes it out of me when I do this so I use mindfulness to take me back to the sea and the horizon, to bobbing in the waves as I look out, out to a future, a future of happy times. As the picture at the start of this chapter says, a journey of a thousand miles must begin with a single step, therapy wasn't a miracle cure for my fears just like mindfulness wasn't, it was my first step. It was the step I made to start to regain control, there were and are many other steps that I took and that happened and every single one has helped in a different way. I'll talk more about them in the next chapters but accepting my problem and starting to talk were where it began. I am going to end this chapter with another picture, yes it's a motivational one and you may love them or hate them but for me this one makes sense. People in general but especially people with serious illness are strong, and we are brave. It's in us because we need it to be, we have no choice. How we display that bravery is an individual thing and we shouldn't get caught up in comparing ourselves to others and how they travel their journey. That was one of the things that caused my problems, I felt a lesser person because I knew I wasn't coping, that I couldn't or wouldn't talk about my journey like some could and I saw them as brave and strong because that's what people expect of those of us who fight cancer, it's just some of us can't or don't always feel that way, sorry but we don't. By November I was officially back at work on a phased return and I was only working 3 days a week, unofficially I was working as hard as I ever had. I was officially still an area sales manager, unofficially I was now the national specification manager and had started to have european travel as a standard part of my job. The job titles are meaningless really but it's realy just to highlight that I was back at it and my work face was firmly in place. I was using being busy as another coping strategy, but I was using it wrong. I was staying busy to hide from my thoughts, to hide from myself, to hide from my future well the future I thought I had anyway. I had now completely convinced myself that I had no future, I would not make any plans more than 3 months in advance because I thought that at my next 3 month check I would be told it was back and it was terminal. I was living day to day, week to week and at most month to month. Now you might say that most people do, but do most people refuse to book a holiday because they won't be alive to see it? Do most people look at their kids and say that they won't be there to take them to school when they start? Do most people think that they HAVE to make this Christmas a good one because it will be their last one? That was the place I was in inside my head. Outside of my head I thought I was behaving normal but I wasn't, I was starting to show the signs of cracking and a couple of people could see it. They asked if I was OK? Did I want to talk? No I didn't I was fine. Everyone else though couldn't see it, I had been back a while, the cancer was gone, my work face was up so they didn't need to ask anymore how I was getting on. They didn't need to ask if I was coping or if I was worried about anything. I don't blame them for it, like I've said before we all have busy lives and our own problems and needs always take priority, they have to, they're our problems. I came across the picture below today and for me it sums up that very point. The words are important too, words are to me as you can probably guess, and as a cancer survivor we are told we are strong, we are told we are brave, does that mean we always have to be or does that make it easier to not have to ask us if we are scared? Anyway back to the story before I digress to far, if I'm honest as I write this I'm looking for an excuse to digress because this was my lowest point, this was when I realised I had to get help before I could go on. I should probably say that I had also been to the doctors twice before this point with what I thought were lumps in my leg. Both times i had been convinced and both times the doctors told me to stop worrying it wasn't. They placated me and said they understood why I was worrying but there was nothing there to worry about and if there was they would tell me and we would get the ball rolling again. It was then that I couldn't tell them that I didn't think I had the fight in me to go again, there was no fight because I knew when it came back it would be over for me. This again I think is not uncommon, I think we look for lumps that aren't there, we assume everything is cancer. My self checking was also completely out of control at this time as well, I was checking myself at least 10 times an hour, seriously at least 10 times an hour, it was almost a constant check. I'm not sure how a tumour could grow in 5 minutes between checks but I checked anyway, God I couldn't help but check, it was becoming ridiculous because i didn't care where I was or who was there. Always the same method as I described before, over and over again. So how did it happen, how did I finally break? Here we go.... I was a soldier for just under 10 years, in that time I lost people I knew and since I had left more friends had died. They had been weighing on my mind a lot, I thought about them, the ones who had already died and wondered if they knew where they were now, how were their families coping. I thought of Mac who had never met his child, at least my kids had known me, well definitely the older two and at least I had held my youngest, he had been there through the long nights at the start of my journey and being off work for 6 months had been a blessing I hadn't had with the eldest two and I really did wish I had after experiencing it with him. Anyway as that was such a huge part of my life as you can imagine my Facebook friends list is full of friends from my army life and around November as you can imagine our thoughts always turn to those who weren't as lucky as us so it's a fairly emotional time anyway. I also volunteer as a collector for the poppy appeal in the run up to armistice day and as such when I saw a link on my timeline about a Poppy appeal flash mob I was always going to watch it. I was in the house alone and working with my laptop connected to the TV so I clicked and watched the following video. I don't know how it happened, I just sat there watching. It's not a very emotional video, it's not upsetting and I've always liked the song but sitting there watching it my head and my thoughts began to wander. I thought back to my army days, my memories of it both good and bad, then I started to think of all of those who never made it back, those I didn't know and those I did. I started to go to the dark places in my mind, my future or lack of one to be more precise. I thought of Mac never meeting his child and then my children losing me, of how could I comfort them if I wasn't there, how I couldn't control if the cancer would come back, no matter what I did I was back into the game of luck, would I be lucky or not. I thought of my battles so far, the possible battles to come, did I have any fight left, I'm sure I did have some but how much, could I cope with another diagnosis? On and on my mind went, deeper and deeper and as it did I felt tears in my eyes and sobs forming in my throat. I had been holding them in for months, I had been keeping the tears with the panic, the sobs with my fears of the future but now I couldn't keep them down, they were rising and I couldn't stop them, I was losing it, higher came the feelings, I was definitely losing it, then they broke, the tears fell and the sobs started, I had lost it, I couldn't stop, I just couldn't stop I had completely lost it.
I was aware of the video stopping, I think I can sort of remember the next one coming on but nothing after that. The next thing I remember is it was half an hour later and everyone was getting home, I had been crying for half an hour, I heard the door go and knew I had to move, I was still crying and the kids were coming in, they couldn't see me like this, they couldn't know something was wrong. I had made sure they had not known I was ill, I would not get through the fight and then they find out now. I moved to the bathroom quickly, tears still streaming and sat on the edge of the bath trying to pull myself together. I looked at myself in the mirror, I had been here before, exactly here, 9 months before and I had looked at myself and vowed to beat sarcoma. I had promised myself I would beat it and now I looked at myself again. I would not be beaten, not now, I knew there and then that I had to get help, I knew I couldn't keep going the way I was going. If I did then no matter how long I had left would be miserable, it wouldn't be a life. I would not beat cancer and then live a life that wasn't happy. I could not keep wishing the next 10 years away, I had to find a way to live again, to beat the fear, I could not go on like this. I washed my face, i scrubbed away the tears, straightened myself out and left the bathroom. I went to the phone and made an appointment with my GP, I needed to talk to her. |
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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