I recognise the symptoms now, I know how they feel, I know that I'm feeling them. Sleep is difficult, the extra beer to finish off the night is easy, the thoughts are getting darker, the lethargy is growing and the ability to talk about it is nowhere to be seen. Who do you talk to when you're not sure you should talk? Who's time am I going to waste as all of this should be behind me now according to most people? Where do you turn when you don't want to turn to anyone, I hate it when my brain gets like this. Again I know that I am luckier than most, I'm not still going through it, I haven't been told there is nothing they can do, I'm NED and going for a check up but that age old fear has found its way back in and again I'm struggling to cope with my feelings. I am terrified, absolutely fucking terrified that this is the time my "luck" runs out and if you have read the other chapters you will know I don't even believe in luck. Anniversaries are always difficult, first check up, 1 year, 2 years even 3, moving to 4 monthly check ups, moving to 6 monthly check ups, significant milestones I have passed already but this is a really big one, 5 years, 5 years, the one that I never thought I would get to and now the one I'm convincing myself is going to go wrong and that is destroying me, I was sure I had a handle on this now but again it seems I haven't and I'm embarrassed of once again being a failure. When I look back on my life, the things I did, the places I went as a soldier, from accidentally driving through a minefield to jumping from helicopters, when I changed my travel plans at the last minute and missed the Brussels Airport incident by hours, near misses whilst driving, near misses whilst walking, I never feel fear but when I think that I had cancer the same old fears keep coming back. Still my biggest fear is leaving the ones I love and who love me, not being there with them and missing the important things. With that comes guilt, guilt that some of my best friends don't get another day with their families and I do, guilt that others are facing that pain and fear right now and I'm not so I shouldn't be worried, guilt that others face this without moaning and I let myself down by moaning and then guilt that my loved ones will be heartbroken if I wasn't here and I'm the one who makes things right when they are down so who would make it right if I caused that pain? Then the last guilt, the one where I can't talk to them because I'm scared of looking weak or upsetting them, that's the one tearing me up right now more than anything. I'll get through this I know I will, I'll deal with it as I always do by working it out in my mind and going through my coping strategies, in other words being so busy I can't think and maybe a glass of wine to sleep. Then little by little I'll get to Monday 11th at 2pm and I'll go through my routine as I always do. I never used to wish time away but today I'd happily lose next week just to get to a point where the worrying goes away. I've written a lot about music and the songs that stick with points in time and how I use music to highlight the good and the bad times and this one is where I am right now, it sort of sums up my mood. I want to get to that bit of my mind and heart where the fear and guilt leaves for a while and I'm me again.
1 Comment
I’ve not blogged in a long time. I decided to see where life and Sarcoma was taking me, I started to look forward more, I still had bad days but they were just that bad days not bad weeks. I was learning to control my fears, my emotions, my thoughts and I was feeling stronger.
Then a couple of weeks ago it all come crashing down and whilst it thankfully wasn’t because of Sarcoma it put my mind into all sorts of places, places I didn’t want to be again. My son had been the subject of bullying for a while and unfortunately he reacted and reacted badly. He had lost his “friends” during the process and still tried to put a brave face on, he didn’t know where to turn because he was scared that telling me meant confronting the problem and he wasn’t ready to and having no friends to turn to he was lost. His reaction had got him into trouble and finally it all came out. I was hurt and disappointed by his reaction and behaviour but I was devastated because in his head he had no friends. This was heartbreaking because this kind, funny, considerate kid was alone because he had stood up to people who were once his friends and now made his life a misery and he didn’t know where to turn. It got me thinking about how we rely on friends, our real friends, and it got me back to thinking about my friends when I hit rock bottom, when Sarcoma took me to my lowest ebb. I learnt a lot about the people in my life and my “friends” when I was there. I had always thought I had a lot of friends, I thought I could rely on them all, I have learnt that I couldn’t. Now before you think this is a rant or I’m blaming them I’m not, I absolutely am not. I was as much to blame as anyone and I’ve said it before in this blog, when I got ill I pushed people away, I didn’t want to speak to anyone especially about cancer or how I was feeling because I couldn’t accept I was scared and had lost control. I couldn’t be “positive” like people, my family and friends expected me to be, I wasn’t one of those brave people who were ready to fight and never said they were scared. I was embarrassed because I couldn’t cope and I got angry when people would awkwardly tell me that “it’ll be ok, you just need to stay positive” and at that point I thought I had no friends either because they couldn’t accept me as I was now, this new me. This is the tough bit, some of them couldn’t, I was too much like hard work, they were uncomfortable around me, I wasn’t Daz anymore so they didn’t want to and still don’t want to be around me. The phone calls and text messages stopped, there were no offers of a pint or a brew. But there were some, just a few, who stood shoulder to shoulder with me, when I couldn’t tell my family how I felt they listened without judging me, they sat and had a brew whilst I pretended I was alright, they never said “be positive” they just asked if I needed anything. They were there for me and they showed me what real friends are. They are the ones who are still in my life now. I also made new friends, when I was brave enough to join the sarcoma community I met some wonderful people who I accepted into my life immediately, who offered me kindness and friendship and who knew how I felt because they had felt the same too. They are the ones who are still in my life. And that true friendship is why when it went wrong with my son they were the ones who offered me support straight away, they didn’t ignore me, offer me false sympathy to make them feel better as that would be what’s expected in their minds. They listened to me when I talked about my fear of failure again, of how my fear of a recurrence and therefore leaving my loved ones without me to care for them when they needed me came rushing back. That fear has been front and centre in my thoughts again, the fear and guilt of me not being here, that sarcoma would take me away, that I wouldn’t be here when they needed me. I needed people to listen and once again they returned my messages, called me, sat with a brew and listened whilst I talked again and once again they proved they were real friends. Our loved ones, our wives, husbands, families help us through when we experience those petrifying words at diagnosis and so do our friends, the ones who know you, who get that you’ve changed but want desperately to be the person you were before. They can be the one we tell the most too because we don’t want our families to see us afraid or to give them more worry. I want to thank those of you who stood by me and still stand by me now, those who still put up with me when I disappear for a few weeks or months because I’m struggling, those who put up with my mood when the scans come round, those who never gave up on me. Thank you. And thank you for giving me people to tell my son about as he starts to rebuild, examples of real friends so my son can look out for these people coming into his life, so that he can understand what being a true friend is and he can learn to accept and give this friendship a lot earlier than his Dad ever knew how to. Thank you all. Yesterday I had one of those moments, you know those perfect moments where you make a point of turning it into a memory, a point in your life that you hold on to, a snapshot of that point in time.
Harry had a match at Fulham yesterday and Emma and the 2 other kids travelled down and I went to meet them there after work to watch the game. When it was finished and the journey back to Derby started the 2 boys jumped in with me, I think the promise of junk food for tea helped, and we headed out onto the M25 to head home. I've posted before about my love of music and I think I'm handing that over to my kids, they all love music, different kinds of music, and they also moan at me until I put on the radio station they want or something on Spotify whenever we travel anywhere. The track at the top of this post I can't stop listening to at the minute, the words are something that strike a chord with me. For him it's about one person but for me there are a 4 people who helped me when I was at my lowest and stayed with me, right next to me right up to now, those who never left my side when I became unbearable at times and pushed them away, they are the ones who kept me and still keep me strong and I will always take them as they are because they took me as I am and still do every day. I thank them for that, I always will. Anyway the boys both love this song too and as I put it on they stopped talking and messing about and started singing along to it, I turned it up louder and joined in, not one of us has got a voice and Charlie knows about 3 lines in every 4 of the song but he's not 5 yet! The singing was awful but there was love and laughter and as I looked ahead at the traffic and the dimming day I smiled and sang louder. I was at that minute enjoying a special moment in time with my boys, we were all enjoying the same thing, smiling together,laughing and singing together in a moment of joy and it was a perfect moment and one I had to keep, to remember, to cherish. There was a time I wondered if I would see these days or even enjoy life again because I was afraid of not living so much that I didn't live. I felt distant from the very ones who loved me the most because I felt I had let them down because I might leave them. I'm one of the lucky ones I haven't left and now I can be thankful and enjoy those perfect moments whenever and wherever they come along. Today the car started playing up and I needed to find a garage. I'm away on holiday and if I'm honest today I've felt under a weight, I'm not but my brain ran away from me and I slipped into that mood, that need to be alone. The car just added to it and as my mood blackened I went to find a garage.
If you've read this before you will know how much I believe in mindfulness for what it has done for me. You will also know that the place I go in my head is the sea, facing the horizon and bobbing with the waves. As I drove, I came across this place and it made me stop, it made me sit still on the bonnet just for a few minutes and just long enough to centre myself and find a little peace. The photo doesn't do it justice and I think I may have found a new place I can go in my mind when it gets too much. My last post was New Year's eve and at that point I think I had found some peace and I thought finally some acceptance of what had happened and that it would allow my mind to move forward.
2016 was a big year for me, I went past 3 years NED, I felt part of a community, the wonderful sarcoma community, I had people who really cared for me in my life, it had started with a feeling that I was getting stronger and finished with a trip to Downing St that left me proud and humbled. As the year ended and I looked back on it as always and I saw that I was someone different, I've talked before about the new normal but this seemed different to that, I couldn't quite put my finger on it exactly but something just wasn't me, I just wasn't me. I looked at myself, looked at my life and just thought about where I was from where I had been. I was stronger, mentally I knew I was stronger than I had been for a long time, I was attending my check ups alone, my scanxiety was bad but still controllable, I was part of the sarcoma community, I could think about Sarcoma every day I still do but the fear wasn't crippling anymore. All this had come from the strength of those closest to me, the ones that loved me, the patience of those that supported me when I was at my lowest and could see no future, the friendship of people who have been through the same fight as me, the messages I had received through this blog. I also discovered that there were parts of my life that brought nothing into it, my job, some so called friends, just things that made me see that I was at best just accepting anything I was just muddling along, I wasn't doing my very best to live the life I promised myself when I won my battle. The war continues, the threat of recurrence is always there, but I was NED and as I was getting stronger these last 2 years I had made plans and I wasn't chasing them I wasn't going after my dreams. So first a new job, a fresh start, a new set of goals, a new set of plans and a new effort to live, a time to fully determine and accept the new normal and to embrace it. I've returned to this blog because I guess there is still some thinking to do, some things I need to process, there are definitely check ups to come and maybe even more battles and I guess that's why this story isn't over...... 2016 has been a big year for me and this holiday period has been a time of reflection and also future planning. I am so happy to write that, a period of future planning, I have actually thought about more than the next 6 and even 12 months and that just confirmed to me that I have gotten stronger again this year.
In those reflectiosn I also remember those we no longer have with us, we have lost more people this year along this journey and not just celebrities but "normal" people, people who will be missed by those who love them and always will, people who made an impact in their own way and maybe never knew it but they did, they touched lives too. I will think about them tonight as I will my family and friends who are not here to hear the chime, raise a cheer or a glass with us in person but will do in our hearts and minds. I have started putting these reflections and thoughts in more detail but I also want to celebrate, I want to celebrate and I want to look forward because I know that it has taken me a long time to get to this place and that others won't have that opportunity tonight or to live those plans tomorrow so I will do it for them as best as I can. I remain grateful for my second chance. Thank you all for reading my thoughts again this year, and if you have seen a little of yourself in there then thanks again because you have made me feel like I'm not alone in this crazy Sarcoma world. Happy New Year and may it be as healthy and happy as it can possibly be, for all of us. And I'm done, I'm clear, x-ray unchanged, pain and numbness from scar tissue, swelling from fluid retained in my "manky" leg.
I made it through my first 6 months, I can breathe, I almost physically feel the wait lifting as I wait for my food, I'm starving, I'm shaking and I'm exhausted. I'm going to eat and take a minute before I head off and then I know what happens next. The crash. My body and emotions will crash. I will sleep tonight, I will sleep without worry, without a nagging doubt, I will reaffirm that this is my chance to live better, I have an opportunity that others don't. So here I am, right now, at this moment, the x-ray department City Hospital Nottingham, sat waiting for my pre-clinic chest x-ray. I have been ok until I walked in and now I'm not. I haven't eaten today and I think that is why I feel sick to my stomach but I know my heart isn't racing because of the 3 cups of coffee I have forced down. I'm knackered because I haven't slept but my brain is doing all the permutations....
I managed to get a parking spot right outside the door, I hope that isn't the only good thing that happens here today. I know I'm better off than most, I know this is to check it hasn't come back, others are fighting a much more difficult battle at this minute, but at this minute, right now, I f**king hate this bit. There is nothing else I can do, nothing I can change so I will breathe, get my cup of tea after my x-ray, go to the room when they call me and just get through. So I was flicking through Twitter not really reading it but scanning and I saw a tweet talking about Xmas number 1 and at first thought it was another campaign to stop The X Factor claiming it again but then I saw the name and I watched it. It is this song, the one below... I can't lie, there were a couple of tears watching it and I hope the following words explain why. This is a kind of difficult time of year for me, it has been since 2013 and I don't think it will ever change and although the reason for that may seem daft it is for me unfortunately just there and won't change.
I find this time of year difficult because there always seems to be a lot of reflection for me, I look to my past, my present and my future. Armistice day and Remembrance Sunday takes me back to my life in the Army and to my friends who are no longer here, I go back to the laughter and jokes, the good times and the bad ones, the memories are still as vivid as the day we made them. It was also this time in 2013 that I broke, when I couldn't take my thoughts anymore, when I lost myself and had to admit that, not just to myself but to others, and going back there can turn my thoughts dark again. It is also my birthday, and I think we all look at ourselves and our lives on that day, I turned 42 yesterday and the same thought I had last year and the year before and the year before that was back as I looked at my cards over a coffee. "What if this is my last birthday?" I don't know why and I know that I shouldn't have that worry, I'm "lucky", I'm NED, I'm heading to 6 month checks and there is no reason other than statistics to make me worry but I do. Its there and that leads me on to those tears because I have recently spoken with and heard the stories of others not in the same place as me. I have heard and read the words of them and the people who love them and as always their strength, dignity and love is inspirational. I am not in there situation and can never expect to understand how they feel I can only imagine, I hope I never know, I hope that those who love me never know it either but if they do the chances are a Hospice will be involved. I have only been in an Hospice once, to visit someone just before their fight ended, the part of this journey I can't allow myself to think or dwell on, that is embarrassing to admit because again I see the strength of the people who have to and I don't think I could be the same, not knowing what I know now about how I've coped so far. There is a moment in this video, a nurse sprays perfume onto a lady, she has I guess asked for it and I guess it makes her feel herself, normal, just for a second and I think that is such a touching moment but also a reminder that this is real and happening to real people, mothers, fathers, brothers, sisters, husbands, wives, real people, real families and it reminds me how much I hate this fucking disease. From the moment Sarcoma, cancer, entered our lives our normal changed, it will never be the same again, our thoughts our hopes our dreams changed. Yes some of our hopes and dreams remain the same but I'm sure like mine some have changed beyond all recognition. I had to learn to accept that new normal, I wasn't exactly the same, I never would be but some things didn't change. I still love music, I still want more tattoos, I still want to visit Hawaii, I am still me. That is what I see in the lady with the perfume, I guess that is part of her from before, the person she was and still is, maybe that is the thing her loved ones think of when they think of her or what they will remember in the future. I may be wrong of course but I hope that no matter what happens in my future there are little things about me that bring a smile to the faces of those closest to me. I wish none of us had to see this new normal, that nobody ever had to support a loved one as they face it, I especially wish that those conversations I haven't had to have would never have to be had again. I wish we could beat this disease once and for all, for all of us, but unfortunately at the minute we can't so all I can do is wish as much love, happiness and peace as you can have no matter where you are right now on your journey. I am lucky, my worry has come and gone ( well not completely yet...) this weekend, others are not that lucky so if you can I guess maybe we should try and get this to the Christmas number one spot, let's raise some money so people can continue to be who they are, let's raise some awareness and get people talking about the part of cancer that doesn't make the adverts, their twitter page @ChoirLondon tells you how. I'm Dad to 3 children, and like any dad they are my life and I really would give my last breath for them. Harry is 12, Madison is 8 and Charlie is excited to nearly be 4. This post deals with just that one up there, Harry, my eldest and too cool to cuddle me in public unless I grab him for a photo just like I did up there. We have spent and do spend hours together because of him playing football and me being the chauffeur, we do clash at times when I'm being his dad and not his mate and we always disagree over who is the FIFA champion of the house (its him I just won't admit it) but there have always been more smiles than anything else and I am immensely proud of him. Anyway before this just becomes a gushing parent post I suppose I should explain why this is about him..
Last Friday night he walked in from school and we were getting ready to go straight back out to football when he gave me a smile and said "Dad, can I ask you a question?" Now I have been waiting for this and I expected it to be about well you know what I was expecting, I know they learn it in school but I like to think I'm there for advice on anything... "Becky, the tall girl in my class...." Yep here we go...... "She asked if you and her Dad were mates, was you in the army together?" Yes mate a long time ago we served in Germany together, that was it? surely not, there must be more to come "She said you've got cancer, have you?" and with those words came a smile that wasn't a smile and fear in his eyes, my heart broke in two, the moment had come and it hurt, it really hurt. I have never told my children that I had sarcoma, cancer or any variable of those words. Rightly or wrongly, and I know that some of you will disagree with my decision because it has been said to me before, I chose at the very start of this journey to not let them know. I didn't want them to be scared, I didn't want them to worry and I didn't want them to know and understand the word cancer until they really needed to which I hoped would be never. I am selfish and I am a protective parent and I don't make much apology for that, if I could have them grow up and live a life where nothing bad ever happens then I would take it. I know that won't be the case, I have seen the bad things this world can show you, up close and personal, and I know that one day our illusion of the world created from our innocence will shatter but as a Dad my job is to stop that happening for as long as possible. Since my treatment the eldest two did learn the word, a local celebrity died of melanoma and his foundation set up education and facilities to help fight this type of cancer in Derby including school visits and lessons. I sat with them at the dinner table as they wanted to discuss what they had learnt and it churned me up inside, in their minds you got cancer and died because that is what happened in this instance to this man. I told them emphatically that wasn't always the case, I didn't want them to be scared of the word and yet there I was still hiding them from my story, not telling them that Dad had been there and yet I was still here with them eating spaghetti! Who knows, maybe that would of been my chance to talk to them but I ran from it, I avoided it but now I couldn't, it was an outright question and it needed an answer. The house was too busy, the other two were in the kitchen too so I simply said "come on hurry up we can have a chat in the car" he looked worried and I simply said "come on we've got to be there soon". As he walked off my heart was thumping and I felt sick to my stomach, the look on his face and in his eyes was one of fear and I hated seeing that. He knew there was something and he was scared, I think he was also hurt, he had found out from someone he barely knew instead of the person who has always said "just tell me the truth, I can help with anything if you tell me the truth about it, anything" and yet here he was finding out his dad had hidden something. My mind was racing, how was I going to start this conversation, what could I tell him, what did I want to tell him ? Truthfully I still wanted to tell him nothing but I knew I must. We got in the car and as soon as we got on the road I turned the stereo down and said "Ok mate, lets have a chat, its just me and you, what has been said and what do you want to ask me?" He just said what he had said earlier and then asked me if I had cancer, and as he asked that question he looked terrified at what I would say as an answer... I spent the next 15 minutes talking to him about it all, did he remember when I had lots of time off work because I was poorly, that's why I couldn't go to Spain the first time to watch him play, why my leg was still weak, why I had my "shark bite" but most importantly that I had indeed had cancer, I had been treated and that at the minute and for the last 3 years there had been no more cancer in my body. I explained that the reason I kept going to the hospital every now and then was to check that it hadn't come back and if it did then they would find it really early and make me better again. Yes I admit I never told him the odds of a sarcoma recurrence, I never told him of my battle with my own mind, I never told him of my fears because he still doesn't need to know that. He needed to know that cancer is not a word to be afraid of, that it can be beaten, that not everyone who gets cancer will die from it. I did ask him not to tell his sister and brother though, not just yet, they did not have any idea and wouldn't ask about it and they were still young enough to live with that innocence and yes ignorance of the word for a while yet. He took it better than I thought and had some small questions, I won't lie and say the fear went from his eyes because it didn't and he still keeps looking at me or like he wants to ask a question but he doesn't know how to or if he really wants an answer. Rightly or wrongly I'm not going to force him, he can ask if and when he is ready to, he knows enough for now, he is still only 12 and I can protect him from some things for hopefully a little bit longer because let's be honest its maybe protecting me a little bit too. |
Darren EvansOn Feb 11th 2013 my life changed forever when I was diagnosed with a myxoid liposarcoma of the right thigh. This is my version of my life since then. Archives
June 2018
Categories
All
|