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.
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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. |
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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