Today was my 41st birthday. How did that happen? How did I get to 41 years old? I can't be, What's the story morning glory by Oasis was released just before I was 21 and that can't be 20 years ago... Oh wait, it was. I'm messing around I know how old I am but when someone said to me this morning "41 eh? you're getting old" I smiled and I smiled because I am truly happy to be turning 41.
It wasn't long ago I honestly could not see me reaching today, in fact I couldn't see me getting to 40 at one point, but now I pass another birthday and I pass another milestone as I move further away from my diagnosis and treatment. The further away I move the less chance I have of it coming back, I know that's not completely true but it's the way my mind still works. I did have a wobble today, at lunchtime the thought of this being my last birthday popped into my head. I was thinking about what to spend some of the money I was given on and I just thought "what if this is your last birthday, what would you want to do with it?" As soon as that thought came in, I decided to take it on. Not today would I allow myself to give in to that, no way. I have no idea if this will be my last one, why would I even think it? I have been making plans for my future, I will not let myself break them. Yeah, I could get a recurrence but I could also get hit by a car. Both are possibilities, if I'm honest I don't know what one is more likely statistically, I don't want to know, but both have consequences and both could kill me. Again I don't know what one is more likely statistically to kill me and again I don't want to know. It does raise a question in me though, a question which does have some logic and reason behind it I suppose. Why do I worry every day that my cancer may come back, yet with the amount of travelling I do and the amount of times I cross a road in a day why do I not worry about car crashes or getting knocked over every day? I know why, it's because I understand that I have so much less control over whether my cancer can come back compared to the others. If I use the green cross code, I use a zebra crossing, I drive carefully and am aware of my surroundings I have some influence over whether I have an accident and the subsequent consequences. It's because of that I don't worry about them every day, I don't even think about them most days. I do though have no influence over whether my cancer comes back so I worry about it, I worry about it every day, that's just me. I know there are lots of poems and inspirational messages that say we shouldn't worry about the things we can't control, we should accept them. If we can learn to do that our lives will be so much better. I can't do that, I really can't. I've always had problems with dealing with things outside of my control but the thing that I can't control and could take me away from the people I love...I am always going to worry about, it's just about learning to manage that worry. That is the fear management I talked about in the last chapter. Today it was easy, today was a day of positivity, it has to be it's my birthday, so I had a strong base to build on as I dealt with the fear. It's not always that easy but today has helped me by giving me another marker, another step completed and another small victory like the ones I talked about at the start of the blog. So that's it for today, a short one, I know I can't believe it either! You won't need a cup of tea and preparation for this one! I just wanted to write down how I felt, how today I managed to control my fear quickly. It gives me something to read when I have one of the days it becomes a bit more difficult to control it. There will be more of those days, I know there will but now I have a chapter to read where I still looked to the future even when I started to panic. A chapter where I managed the fear and managed to think about the future even when the worries built. Oh and yes I forgot, I decided to spend it on some new tattoos and a special birthday tea of pizza.
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So my second year started with a thumb that ached and was in a comedy size bandage along with a body and mind that ached after what was my first full night of sleep in weeks. I woke that morning as I always do the morning after a check up, happy, relaxed and ready to take on the world. My body always aches the day after check up day, I think it's because my muscles are tense all day when I have my scan, I can feel it, I know I'm doing it, I try and relax, use mindfulness but I'm still a coiled spring. Then the next day I'm so relaxed I ache, my mind is the same though. I feel almost foggy, confused, hungover even. It's like my mind is relaxing after being tensed up the previous day, it's a strange feeling that I really can't explain, I can't concentrate or think straight, I'm exhausted.
That morning, after a full clear year, I tried to make a promise with myself, the promise was that I would try and improve in the next year. I would try and deal with sarcoma and life differently. I would use this as a second chance at my life, I would start to push sarcoma out of the centre point of my life. It would no longer be the part of my life that every thing else rotated around, it wouldn't control the other parts of my life, cancer would be a part of my life but it wouldn't consume it as it had for the last 12 months. 1 year down, a whole year NED, there was a time I never thought I would get this far but now I was and I saw I was wasting my life. I would discover my life again over the next year. It started by letting people in, I made some contact with old friends, people I had not spoken to since before my illness. I had cut so many of them out it was hard to reconnect, I found it difficult to make that first contact. I was embarrassed and didn't know what say, I was also still a little angry that some people hadn't tried harder to stay in touch, then again was I receptive when they did? Probably not, did that help them want to keep trying? Probably not. They were pleased to here from me, they wanted to know I was ok, that I was on the mend and I found myself starting to enjoy being around people again, being able to do the "normal" things and not just thinking about cancer all the time. I also let new people in, I had never really done this before and it was a difficult experience for me. I have always been guarded and I found it difficult to make new friends, not because I was shy, not because I couldn't but because I had always forged friendships over long periods of time and needed to know I could trust people before being open with them. There was one friend though who had not been especially close to me before my illness, we talked occasionally and that was about it but when I was ill and immediately afterwards they talked to me about how I was feeling, explaining that they had been through some similar struggles of their own and I found myself talking more and allowing them to become a friend, a close friend. It helped me learn I could speak about my illness, about what I had gone through and what I wanted for my future. I owe a lot and I appreciate what people did, family and close friends are what dragged me back during the second year, the people I love and the ones who love me, are the ones who brought me to a place of strength. It was as I moved into my second year that I first saw Graham since my diagnosis, and that was probably the hardest thing I had faced since my diagnosis. I had called into the barracks to arrange some training for them and to speak about a project I had planned and one of the lads said "Graham is in, you going to pop down and see him?" I walked down the corridor feeling sick with nerves, how could I speak to him about being all clear whilst he was dealing with a terminal diagnosis. I had heard he was struggling and I just didn't know what to say to him. Yes I knew what having cancer felt like but I had no idea what it felt to be terminal. Selfishly I worried "Would he be angry towards me? Would he even speak to me? What can I talk to him about? What do I even say to him?" It felt like a very long walk and then I was there at the office door and he looked up. A big smile "Daz! Bloody hell, sit down, sit down are you ok?" And right there I relaxed, we sat and talked. We discussed what had happened to us both, we discussed what we had and he congratulated me on being clear. We didn't discuss his diagnosis though, not the real one, he told me that the chemo had stopped it growing and he was being checked but that was it. We both knew what the future held and it didn't need talking about, we started talking about music as we always did and about Janice and her deep fried breakfasts! Seeing Graham and talking to him did affect me but not just in a bad way something about speaking to him made me realise that I could be around someone who was terminal, something I had always struggled with before, the fear of seeing "my future" made it impossible for me to deal with before. This was the point I started to think about groups and wanting to talk to people who had been through what I had, who knew what the fear felt like, who knew what it felt like to be told that "it's malignant", to wonder what their future held or even of they would have one. My problem was that I was still so private, would still only talk to a very few people. I knew I wanted to but also didn't know how to go about it. That's when twitter became important, I started to connect with other sarcoma patients, to tentatively talk, to make connections, to read and listen to others stories. I looked on the Sarcoma UK website and read some of the stories, I wanted to add mine but couldn't bring myself to do it, not just yet. There were still too many brave people out there who when I looked at what they went through I felt stupid for my worries over what appeared so trivial in comparison. It was a start though and as I realised that my story was my story, that my feelings were my feelings, that how I dealt with everything was not unusual it was quite normal actually it allowed that start to build, to build into where I am now. Christmas was another strange time, it was when I had another of my "will this be my last" turns. I was watching the kids play on Christmas day and how care free they were and as we were going into the restaurant for lunch I was walking behind everyone and as I watched the kids walk in I wondered how many more Christmases I would see, how many birthdays, how many other occasions would I be at? It rocked me and left me a little quiet over lunch and if I'm honest it carried on all the way through to New Years Eve. It was daft things that kept the feeling going, for example was this the last time I would see Sherlock, I would never know what the answer to the cliffhanger it ended on would be! Stupid I know but it was there it was in my head and it wouldn't shake out. On New Years Eve I found myself sat alone in the early hours, as always I was watching Hootenany and the Glastonbury highlights with too much red wine in my system and a half full bottle to go when my mind traveled back over the previous year. I had suffered these thoughts a few times but in my first year NED they were all consuming, almost debilitating at times. I fell back into despair and couldn't see a way back when I was suffering but now I was actually starting to. I was starting to see that thinking about the future wasn't necessarily a way of tempting fate into taking that future away. I could see the progress I was making, I could see that I was starting to deal with my fears as best that I could. I can't say that I beat them because even to this day I haven't, they are still there but I call it fear management now. They can still incapacitate me but not for as long, they can still enter and run around my head for a while, the last couple of weeks have shown that, but I can bring them under control again if I really work at it. That was huge progress from the first year, still not where I wanted to end up but definitely far enough away from where I was for it to be considered real progress. I went into 2015 full of real hope, I was determined that this year I would make an effort to make sure that I wrestled back more control from sarcoma of my body and also my mind. That began with the charity lunch and the first talk I ever gave which I mentioned earlier in the blog, that was a real watershed moment for me. As I've said before it was when the idea of writing everything down first entered my head, I never expected to get to this point and to be talking to so many new people who I met through writing my thoughts down. I never expected to be part of the sarcoma community, I had thought I would always be on the outside just dipping my toe in from time to time but not really taking part. My second year NED is twhen I finally felt ready to join that community properly and I'm very glad I did. I'm not going to lie, Christmas to July and getting to that 2 years NED confirmation wasn't all easy. I did have wobbles, I had health scares where I was convinced it was back, my best mate ended up in a coma, another friend moved into the final months of his life, it all reminded me of my illness, my mortality and at times the tears flowed, really flowed. I had one small goal and that was 2 years, I had to make 2 years, it was all I could think of as I got past 18 and then 21 months clear. My mortality has never really left me since my diagnosis, actually my awareness of it is a more accurate statement. In some instances I take less chances now, I'm a lot more cautious but every now and then that threat of not being here forever makes me take a chance, take a risk and some of the things done under that spell...well they have brought smiles like nothing else can! I got to 2 years, I wrote a chapter about it which I hope you have found and read earlier in the blog. What I didn't write at the time was that I went to that appointment alone. When I told people who go through scanxiety that they looked at me like I was stupid! Not in a bad way but they couldn't understand why I would choose to do that, scanxiety is a nasty horrible beast and I hate it but I had my reasons. I want to talk about those reasons but it will have to be in another chapter! If you have made it this far in this one, thank you, maybe a whole year in one chapter is a bit too much but you have probably realised that once I start typing..... No not that one, the other one, the bad one, ..........................Cancer.
I couldn't say that word for 2 years, I wouldn't say that word for 2 years. It was a word I hated, it made me feel sick when it came into my head, it sent my head in a spin and made my heart beat faster. I still hate it and if I'm honest I use sarcoma more than I use cancer to describe what I had. That's not just because I want to spread the "sarcoma" word but it's because it still makes me feel sick when I think hard about the fact that I had cancer. I would say it's just a word but it's not is it? It's more than that, so much more than that, it's a feeling, it's an image in your head, it's a memory of people lost, it's an expectation and not a nice one. I am of the age, that when I was a child and people around me talked of cancer they said, no they whispered, "it's the c word" as if by saying it something bad would happen. The word had so much power that people couldn't or wouldn't use it, I don't know if you know anything about the Harry Potter books but it was the equivalent of "Voldemort" it was the word that could never be said! Yes a few people would and everyone would stop in their tracks to stare at the person who used it, they would glare at them as if to say that by using it you were bringing cancer into the people who could hear it. So why is it that word has so much power? Is it the images we have in our head when we hear it? Is it like me you grew up in a time when if someone got cancer it normally meant they would die? Is it because it doesn't discriminate and can attack anyone? Or is it that we know that having it is such a life changing event that we wish and hope and pray it never gets us? I admit it, before I was diagnosed a cancer patient looked a certain way in my mind, the very thing I hate now because it happened to me, but it's an assumption we all make, yes I bet even you have! Cancer is synonymous with illness and serious illness at that, it's the word that destroys people and leaves them a shell of what they are, it destroys families and even affects children. It's a horrible word. It has it's own charities, it's own TV adverts that show the horror of being diagnosed and the effects of treatment. It has appeals, it has events dedicated to it and last year when a local celebrity died of it my children's school ran a series of events on skin cancer funded by his foundation. Now don't get me wrong it is an invaluable thing and I want my kids to be aware of the damage the sun can do but they heard skin cancer, they saw he had died and they added 2 + 2. This made life very difficult, as you are aware I had always said my kids would never know I had cancer until they needed to. That would come if I was terminal and until then they never needed to put that word and their dad in the same sentence. It was also difficult because I was still at a time in my journey where I couldn't speak about cancer so having my kids ask questions to me about it was destroying me, pushing me further down. They asked "so if you get cancer that means you die? why does cancer kill you? if I stay in the sun too long I will get cancer, does that mean I'll die?" Spot the pattern? I did. I spoke to them as much as I could along with other members of the family and I tried to explain to them that just because you get cancer it doesn't mean you have to die. People who have had cancer can beat it and be cured, doctors can make the cancer go away and people live normal lives. I believed all that I told them I just still didn't believe it about myself which is why I still avoided telling them that I had been through it. I didn't want them to hear "that word" in relation to me. I still don't and even after conversations I've had over the last 2 weeks I still won't tell them, the word is not needed in their everyday vocabulary so I won't remind them of it. I'll continue to think as I do that I'm protecting them. Maybe one day that will change but not just yet. They grow up too quickly now as it is. It may not be the right thing to do, it may be different to what you think and I'm always happy to debate it but for them it's still not right, ,not in my mind anyway! So what can I do? I can keep trying to use the word until it stops being scary. I was speaking with my Mum the other day and every time I said it she winced, she shook her head and winced, but I said to her "Mum, it is just a word, I hate it, it makes me feel sick but it's true I had it, I had it but I'm still here", I just tried to take some of that fear away. In fact my friends and loved ones all seem a bit nervous when I say the word, but I'm going to keep going and hopefully break down their barriers around the word too. I guess what I'm trying to say is that even though it makes me feel sick when I concentrate on the fact that I had cancer, it's the illness I should be afraid of, and I always will be that's just me now, but I definitely should try not to be afraid the word. The word can't hurt me, the adverts can't hurt me, the television stories can't hurt me, other people with the disease can't hurt me, so I have to stop being afraid of saying it or being around it. I have to look at my past as something that has happened, and it yes may happen again but it won't be because I say the word, or write it in a blog, or support charities, or read a little more into mine to understand where I am. I'm not going to get to where I'm completely comfortable with it tomorrow, next week or maybe even next month but hopefully soon I will be comfortable enough to turn around and say the phrase I really like to hear but just can't say......not quite yet. F**K Cancer. So why is probably a fair question and it's a decision I still don't know if I have got right. This blog was initially just going to be for me, but I decided that if it was on the internet that my kids would always have a way to look back at their Dad and see what he thought and how he felt even if I wasn't there. I showed it to a close friend and they told me it was something I should share, they had been moved by what I had written and they felt I needed to share it. They told me that others would have felt the same way, would have thought the same things, had the same fears and if they knew someone else did, imagine how that might help them!
I thought back to the beginning, the fear, the confusion, the panic attacks and the tears. I didn't want to speak to anyone about how I felt and what was going on, but if I could of read what I was feeling was being felt by someone else, if I had seen that someone else had cried non stop for 2 hours, had been physically sick every time they thought about having cancer or watched their kids sleep wondering if they will see them grow, well then maybe I wouldn't have felt so alone. If I had heard of Sarcoma, knew the symptoms and what they meant, maybe I would have gone to the doctors sooner, who knows, but what if by reading this someone else realises that a lump needs checking, could it mean treatment before mets? Who knows but if we get this message out by any means necessary, then maybe just maybe someone does go to the doctors early. So I published it, I shared it and to my surprise people started reading it. They sent me messages telling me that they had felt and were feeling that way, they thought that way and were pleased to see someone else was thinking and feeling the same. This didn't just help them it helped me, it has helped me find a place in the Sarcoma community, it has given me new friends, it has helped me attend a support group, it has helped me make the decision to live my life without fear as much as I can. I am so grateful for the support this blog has received so far because that support has felt like support for me and I thank you all from the bottom of my heart, I really do. The other reason for this blog was to raise awareness of Sarcoma. I had never heard of it before I was diagnosed, people around me had never heard of it until I was diagnosed and I would bet it was the same for you too. I'm guessing at present the majority of people who read this blog have been touched by sarcoma and that's great, that you are reading not that you had sarcoma..., but I want to get to those who haven't. The ones who look at me like I'm mad when I say I had "muscle cancer" and there are other sarcomas like bone and GIST. They look at me when I say the average tumour size at diagnosis is that of a tin of beans in horror. They always ask just before I leave them "What was it called again, Sarcoma, right?" By entering these awards I have a chance to put the word sarcoma into another forum. The people who are looking for their blogs or looking for a blog to vote for will see the word sarcoma and hopefully if they don't know what it means they will open the blog, read it and learn the word. They may talk about it at work, at home, at the pub, who knows where but every time it's said it's a chance for someone to get those strange feelings, lumps and symptoms checked. It points someone who has it in the direction of someone else to talk to, someone else to listen to them, that's what I want this blog to do. So that's why, it really isn't for me, I'm happy with me and where I am at present in my sarcoma journey , well as happy as I can be anyway. What I hope is that when voting opens in January we can mobilise a sarcoma army. I hope we can get as much support and as many votes as possible to get sarcoma out into this years blog awards circle, let's get it talked about, let's get some more support for those going through it. And if you do like this blog, if it has helped you or someone you love realise that your or their thoughts and feelings aren't strange or different then you need to thank my friend as well. I don't think they would want to be named but it was them telling me how it had moved them that made me turn it public, that made me share my story with you all. I know I will always be grateful for them making me do it. I want to thank all of you who have read and supported it since as well and I really hope you will continue to support this blog in the awards. Thank you. I've just read this post before I put it up and I just want to say please understand that it is not meant to be self indulgent, it's not. I write this blog primarily as a way of recording my thoughts and feelings along my journey with sarcoma so that one day I can look back and see the places it took me, both physically and mentally. I have had a couple of weeks that have been a trial, I have had some really bad times and some really good times in this period and it's put my head in a real spin. I wanted to write it down because I have had some real thinking time this weekend and that has brought me to a place tonight that I wanted to write about. It's not an epiphany but it is a watershed moment, well for me anyway, so I wanted to get it on here. Please read and hopefully you may see something of yourself here too... In my last chapter I wrote about what sarcoma had taken from me and what it had given me, I also previously wrote about my collecting of memories and how learning to accept and give support has improved me as a person and also helped me deal with the changes in me. Yesterday and today I have done a lot of thinking, not bad thinking but thinking about me. I went back to the start and read this blog from the beginning, from the first chapter back in July and thought about these last 5 months and the changes in me and my life since then. I can say that the storm of Sarcoma changed me, the last 2 years changed me and writing this blog has changed me some more. I am definitely not the same person who walked into the storm and I am now starting to accept that, but that doesn't mean that I have to be less of a person, or a weaker version than before. I can be a new version of the old me, a better version, a stronger version, I just have to get to that place. The saying in that picture is so true, it resonated with me yesterday when I read it. It was like a light going off in my head, I am broken, I know that but I am not useless. I have seen this week that I can "still colour", I just have to figure out what I want to do, the pictures I want to make, the life I want to lead. Once I have decided on that I can start to move forward again. I've got scars, and yes I was stronger than what tried to hurt me. I have realised over these last couple of days of thinking that I have beaten everything in my life that has tried to hurt me. I have had all sorts, like everyone has, and I have survived them all. Sarcoma was and is the scariest of them but I have shown it I am stronger than it, I never gave up before so why am I giving up now? This is just another life experience and I need to take from it, learn from it, realise what I have gained from it and make a decision to move forward with it. I can't leave it behind because it will always be sat on my shoulder, I just need to remember I have big shoulders! We used to have a saying in the Army, "If you don't like it, hand your bedding in" meaning if you are going to moan about things because you don't like the way they are, hand your bedding in and quit. I guess that's the same for life, Don't like your job? get a new one, don't like your relationship? end it, don't like your house? move, don't like a certain person? don't speak to them, don't like yourself? change. Like I said I have had some big ups and downs over the last week or so and now it's time for me to decide how I am going to live, it's time for me to change. I can't hand my bedding in, this is life and you don't just quit on that, my biggest fear is losing it so why would I want to quit it? I have had some discussions over this last week on survival and recurrence rates for liposarcoma. I now agree it is important for me to know, understand and accept them as part of my healing process. It's true the earlier we are diagnosed the better our chances of survival and non-recurrence, advances in methods of treatment are also improving things. I have to take some responsibility as well and start to eat better, drink less and exercise more as well. The other thing I really have to do is not fixate on them, not let those rates control my life. It was the thing I was always scared of, knowing them would reinforce them in my mind, make them certainties instead of guidelines. Well if I'm convinced that it's going to come back and get me anyway I may as well have an idea on my chances! This is what I am trying to do. I am trying to look beyond the imperfections in my life and be happy with where I am right now, to enjoy where I am right now, to like myself right now and to stop worrying about what might happen. My life isn't perfect at the minute, my mind isn't perfect at the minute. I spoke about losing a lot of myself in the last chapter and it's true, all of it, I have lost a lot of myself and I think to find that man, the one I used to be, I just need to get back to being happy. To do that I have to make some decisions and act on them, I may have to make decisions that I don't like, I do have to make the decisions that will suit me best. My first decision is to accept that I can't control if the sarcoma will come back. That really is a big one and it has been helped by people this week telling me their stories and me seeing that even if it does that doesn't necessarily mean the end, and that the end will be quick. I have taken great inspiration from their stories, great hope from them as people and the quiet strength and dignity they are fighting their fights with. I have learnt that even if it comes back and even if the worst happens and it is in my lungs, there are still chances for treatment and being NERD again, the clock just starts again. My next decision is to try and be positive everyday, and if I can't be positive then I can be thankful and I can try and find one thing to be grateful for each day. It might be a cuddle from my loved ones, a beautiful view, a nice meal, just the simple things. I always found delight in the little things before, it's the little victories and pleasures that add up to a positive future. Every day I have someone else didn't so that's a promise to my self to live for that reason. Mac, Steve and many others never get another day, I do, it's time to live. Now I need to decide to look after myself, to get to the gym with no excuses, to try and eat a little better, again just the little things. They will help me like me a little better, to be more confident in my skin, I may even be able to get that game of rugby, well no I won't but I will have a better chance of fighting anything that may come back if my body is working better. So that's the plan, I have also decided that it's time to do something to raise money, I intend to do London to Brighton cycle ride next year. I've put this here so there can be no backing out, I have to commit to it now, oh dear time to start preparing..... This is my last decision for now, it's a decision to try every day and if I fail that day I won't beat myself up and try and punish myself. I won't do things to make me feel even more miserable because I thing I've failed. I won't push people out of my life or hide myself away, I won't allow myself to feel a failure because I know that some days I will fall on my arse but as long as I get back up then tomorrow gives me another chance. I was a soldier, I never gave up then I need to remember that now. Life does throw some bad things at you, in my opinion cancer is one of the worst, I just need to decide to fight again.
So there we go, I'm moving forward again. I'm sure there will be setbacks, there will be times, places and people that knock me back but I will keep moving forward. I will not allow my fears to control me again, I will not worry about what may happen, I will deal with it when it does. I will make myself happy, I will make the decisions that will allow me to be happy, no matter how difficult. I will not just find the man I used to be I will find the man I need to be to live my life, sarcoma or no sarcoma. I hope you will all come with me on this ride. "Life is about give and take" I have heard that a lot of times over the years, I don't know if you have but it's a saying that I heard again today. I was also having a conversation about the recent rugby world cup and I said to the person "I would love to play just one more game of rugby", I've been thinking of that a lot recently, I really would love to play just one more game but I don't think I could, physically, I just don't think I could. Yes I'm the other side of 40 and I weigh a bit more and run a bit less than I used to but mainly because my leg couldn't take it. You noticed I didn't say legs, just leg, because my left one definitely could take it. I know that because I was this size a couple of years ago when I entered and was winning the Dad's race at my son's school sports day until a very untimely and embarrassing slip which ended with me crossing the line head first and tumbling with a big graze on my leg! I don't know who was more embarrassed, me or Harry?
Anyway, my right leg wouldn't take it, the removal of the rectus femoris muscle along with the tumour has left me with a "shark bite" and a "manky" leg. I can't physically run anymore, my gait has changed so much I feel so different in motion that it feels wrong. I also have the problem of my knee giving out as the muscle above it is gone so I frequently stumble, even on flat stable ground! People look and laugh, they can't see under my trousers so just think I'm clumsy or drunk. What has this got to do with give and take you're asking, I know I'm rambling again sorry. Well my tumour, sarcoma, has taken away that chance to ever play a full game of rugby again. Not just physically but mentally, I would be too scared that a good whack or hit on it would cause the cancer to come back, yes I know it doesn't work like that but as I have no reason or understanding why it grew in the first place I'm not taking any chances. This led me to think about what else it had taken from me, but then also I wondered if it had given me anything too? Maybe I'm letting my mind wander too much at the minute, maybe I'm overthinking but some things did come to mind for both, give and take. So it has taken my ability to play rugby again, some might say I never had any but I think I did, it has also taken away my ability to play football. I used to love to play sport, yes I haven't played as much recently but now I know I can't, well we all want the things we can't have don't we? More seriously it has taken a large chunk of my personality and what used to make me what I am. I have recently been asked "Were you always a worrier? Did you always look on the down side or have depression before cancer?" The answer "No", not in the slightest, I was an optimist, a glass is always half full and ready for some more kind of person. I wasn't scared of the future, I wasn't scared that I wouldn't have a future. I was impetuous, I had a lust for life and fun that was pretty much unquenchable. If something was happening I was normally slap bang in the middle of it, I had normally instigated it. I lived the life I wanted, not selfishly, but I wanted to laugh and have fun and I did. I had climbed mountains, swam in more than one ocean, been drunk in many places and seen many more. I once chased a giraffe across the Masai Mara to try and get a photo of it, believe me those things are fast at full tilt!! I lived to spend time with people I love, I loved being with people, I enjoyed being in the company of others but was also comfortable when I was alone. Nearly all of this has left me since my illness. It has taken a lot of that away from me. I still want to live, of course I do, maybe more so than I did before, but it's how I live and how I think that has changed. I'm not an optimist anymore, I wait for bad news, I expect the worst to happen, the glass is half empty and the bar has closed. I am scared of what the future will hold for me, I'm scared how long that future will be. I want to take my kids to university, to walk Madison down the aisle, to see my grand kids, but in my head I won't. I still want to laugh, to spend time with the people I love but at times I am unbearable and can see why they get fed up with me. That's maybe the wrong word, more why they get frustrated with me. They think about the man I was and can't understand why I'm not him anymore. He is still there, every now and then he surfaces and I laugh out loud, I smile and do something stupid to make others laugh, I dance or I walk with my super confident swagger. I just wish he could be here more, that cancer hadn't pushed him down. I now struggle to be in my own company for too long. If I'm alone and quiet my mind wanders very quickly and always to the same thing, my illness and my future. Sleep can elude me for days sometimes and that makes things worse, it darkens my mood. Nights alone in hotel rooms can be awful, I can be finding sleep difficult and then loneliness makes my mind wander and that makes my mood worse so sleep eludes me more. It is a vicious circle, but travelling is part of my job so I have to learn to deal with this and that is one of the things I am working on. It has taken a lot, but has it given me anything? Yes it has. It has given me a stronger desire to live, to live a long time, an appreciation of the time we have, a need to fill that time with people I love. It has given me friends. It has given me new friends, a new look at old friends, new best friends, new friends I would do anything for because they have been there for me when I was at my low point. It has given me back faith in people. During my time in the Army I saw some of the darkest side of human beings and what they were capable of. We all became numb to some extent I guess, I lost some of my compassion because I lost some of my faith in people. My illness has restored my faith, not in everyone, I am still fairly guarded but I have met some wonderful and kind people. I have met people with so much strength that they have inspired me to keep trying, to keep aiming for a return to who I was. I have met strangers who by showing me such compassion and sincerity I now consider them friends, something I couldn't do before. I always needed time to allow people into my world but some people have come into it quickly and I have allowed that to happen and I am glad I did. They make my life better. I appreciate every day now, even the bad days are still days that I could of missed, they are extra days, days that some wouldn't have so I should appreciate them. Even if I'm feeling bad at least I am feeling something and I will always have the next day to try and start again, to start my life again. So tomorrow I will, I will try and be positive for the day, I can't promise I will but I can promise I will try. I'm sat on a train heading north and my mind is spinning, it's spinning all over the place about the above word. Support. I can't stop thinking about it, really I can't. All about needing it, wanting it, yes they are two different things, giving it and accepting it. I can honestly say that I now have been in all four categories and it's true it really is essential. I have struggled with the idea of support groups, I discussed that before in the blog, being in a room full of people who have had or still have cancer scared me, it scared me so much I couldn't face it, no way. I have also always been a private person, I talked about that before as well, I struggle to talk about my emotions to people unless I really trust them. Fear controls me with regards to my emotions and also if I tell someone something I can't take it back, they know it, so I have always been careful with who I told things to and what I told them.
That made it difficult for me with regards to support through my journey and I guess through my life. I am difficult to support because I am hard work, I know that I am, I would change it if I could but I can't. I find it difficult to trust and especially trust enough to open up fully, about anything really but definitely my emotions and feelings around cancer. I can clam up really quickly to, if I feel threatened or insecure I can revert back to type and hide away within myself and then it is even more difficult to open me up again. God, how messed up am I ??!! I have though now attended a support group and I have talked about sarcoma, life with cancer, my mental health issues surrounding cancer and the future. I never thought I would say that last sentence but I'm very pleased that I now can. For so long I struggled to open up, out of fear and nothing else, fear that people wouldn't understand or see why I felt that way and fear that I was the only one who felt like I did. I know now that I'm not the only one and that there are people who understand exactly how I feel because they have been in those places and have felt and thought exactly the same things, I most definitely am not alone. Don't get me wrong, I have had support through my journey I really have but I still felt alone, I felt that people couldn't understand why being NERD (I've learnt that is a much more positive way of describing myself than remission, remission suggests it will at some point come back, NERD or No Evidence of Recurring Disease means it's gone, just gone) is still difficult to accept at times. It is because there is and always will be a fear of a recurrence, I know what a feeling that something is wrong and if it needs Doctors and scans to check it's not a recurrence, well it feels horrible, absolutely horrible. You feel like you are losing all control again, that it is back and this time it's the big one, the one that's going to get you. I also know now that feeling angry at people who say "You just have to be positive" is also OK and I'm not the only one that it annoys! We can't just think it away with positive thoughts and sometimes it's OK to just be down about it, to just feel sad. This disease changes us for always, not just during treatment but for always and we do change as a person whether we want to or not. For me I lost some of my traits and gained new ones I didn't want, like anxiety, like a feeling of giving up, I'm still learning how to deal with them. I also now know that other people also think about cancer everyday, it's their first thought when they wake up, just like it is mine most mornings, and they know it will be that way for a long time to come. I guess that what I'm saying is that everyone who has cancer needs support, it is a fundamental need, you can't and definitely shouldn't go through it alone but there are times that you may not want it or may not accept it. I didn't wan tor accept it because I thought it better that I hid from it, that I should keep it all buried deep and if I asked for someone to support and talk to me I would not be able to suppress it and would have to face it and I didn't want to do that. I did need someone to be there but it had to be on my terms and at a level I could cope with. That is my difference between wanting and needing and I still don't want it all the time but yeah I do need it still! I talked today about giving support, in this chapter I mean just for cancer, I have given support to people all my adult life, that's just me, like I said I'm a loyal friend (and a proper pain in the arse if I don't like you!) but by giving support to Steve through his cancer journey and more recently a little support through messages to a couple of people who have had the same as I had, I have learnt that giving support is also a way of helping yourself. By being forced to face cancer and by telling them that things would be OK I learnt I had the strength to talk about it, I learnt that it could be worse, I learnt that being open and supporting others really can lighten the load by letting them know they are not alone either in their thoughts and feelings. Accepting support is the difficult one for me, it's the one I've struggled with the most because like I said I always needed it but I wanted it on my terms, it's that control thing I talked about a long way back in this blog, I only accepted support when I was ready to, when I felt that it was honest and sincere. See that's sometimes the problem with me, I wonder if people are sincere or even honest with me. I have met enough people who aren't that I tar everyone with the same brush so to speak and don't let people in enough even if they are being true. I imagine that it's just words, or just to make them feel better, or it's just the accepted norm to offer support and hope that it's not accepted. Those closest to me know this about me and accept it, that's why they are closest to me I guess, they know my foibles and faults and still love me but I do struggle with letting people in. Today, I met some people who I have accepted support from without hesitation and I am thankful I did and for meeting them. They have been down the rabbit hole of Sarcoma, as patients, as carers, as professionals and they know exactly how I feel. I am incredibly moved by their stories, their kindness and their strength and I feel like I have known them for a long time already. To be welcomed in such a way was something I had not felt in a long time and whilst it was difficult for me to talk, the way they listened, didn't judge me and allowed me to rattle on and on has shown me that I can accept support without it being on my terms and that it doesn't have to be on my terms if I am truly open. I learnt things from them all and have gained some strength from them at a time when I am struggling again. I am not great at the minute I accept that and I was pushing my support structure further and further away from me, it's what I do when I struggle, but maybe I can change that, I need to work at it but maybe I can. I do need support at the minute, I do want it too, maybe I should just accept it. That way I can move another step forward and see where this ride is going to take me next. Today has been a tough start to the week and tonight my head is spinning a little as I try and reign myself back in a bit. I could easily spiral tonight and the bottle of red in the rack is definitely looking at me..... My leg is sore, I'm exhausted but I can't turn my head off and it's telling me things again, it's trying to tell me to give up, to accept my fate, to accept that I won't make old bones. I'm not going to lie I've been thinking that, and just trying to accept it, trying to accept that it's only a matter of time until I have that discussion again. I opened up this page to get some thoughts out and try and process them, to stop me climbing down the rabbit hole. Whilst I was doing that I started thumbing through my phone at the photos and I came across one that actually made me smile. I didn't think I was in the mood but this one worked. My little Dalek! Charlie was playing in the dress up box just before Halloween and I snapped this as he worked through the costumes. Just as I thought my mood was crashing, this little man with his smile slowed me down. I started to think about photos and pictures, memories snapped in a moment, a piece of time, a piece of your life, something that mattered so much you wanted to record it. I have never deleted a photo, I save them all, I hoard memories because I cling to them when times are bad. Those good memories are what give me the strength to beat the bad times and photos are my keys to those memories. The one above for example, this was taken in 1994, actually July 1994, on Exercise Medicine Man 4 in Canada. That's me with my back to the camera holding the rifle and helmet, you can tell it's me by the ears! I love it because it was a snapshot of us all, we are all doing nothing in particular but the memories it evokes are still strong 21 years later. Gaz is holding court and probably crucifying someone with his sharp tongue and wit, Simon (HK) is laughing that kind of belly laugh you can't control, probably at Gaz, he had that affect. Myself and Paddy are listening, and hoping it's not our turn in the firing line next, we all had a turn believe me, John is smoking, he always was and Joe is just mooching about probably just trying to look busy so he wasn't given a job like cooking tea. We are all just so relaxed, we always were in each others company, that was created by the bond we had, but we also had so much fun that summer. Exploring Canada and it's bars, meeting the locals, seeing the country and just being young men. We had a song, of course we did, it was "Tell Laura I love her" and I can still hear Gaz starting it over the radio in the vehicle and everyone joining in, we all knew every word. I can remember a drunken karaoke in the gas lamp pub, I can remember a night under the stars freezing cold but laughing uncontrollably because we had cut the lining out of our suits to keep us cool and how stupid were we! That's what I mean, one photo leads to all those memories, good ones that make me smile, even now. Here is another one, it was take at Zizzi, Cardiff Bay. We went outside whilst everyone else waited for the food to come because Charlie was bored and Harry and Madison wanted to look over the water at the boats. I normally take the photos, I don't like having mine taken but as we were messing around and laughing it seemed like a perfect selfie moment! The photo I love, it's on the about me page of this blog, it captures that moment of laughter perfectly and it makes me smile every time I look at it. It also brings back other memories of Cardiff Bay, summer weekends, birthdays, nights out, I have so many good memories connected to there they are hard to list but they are all flooding back now, some of my most special memories are there and they can never be taken away, not by an illness, not by anything and that makes me smile too. I also have a weakness for those motivational pictures you find in the world of the internet and I saved a couple that I thought I could relate to. They are saved on my phone and if I'm honest I look at them as well when I get down and they lift me so I thought I would put them here too. It might give you a further look into my mind and help you understand me and maybe even other cancer patients or even yourself. This is me in a sentence, it really is. I have good intentions, I would do anything for the people I love, absolutely anything, whatever they ask but because of that people think I'm mad. I disagree there is nothing wrong in putting others before yourself, we have a duty to help whoever we can but true love is putting others before you and if that's crazy, well I guess I am f**king insane. I can't change who I am in that way and my heart is pure, when I love someone it is unconditionally. I don't say that I love lots of people because I don't, I like lots of people, I dislike a few too, but I love very few. The love I have and will always have is pure, my heart is pure and whatever and whenever they need they will only have to ask, as long as I breathe they only have to ask. This is also me, although I hate to lose, I absolutely detest it. I want to win in everything I do, I strive to win in everything I do and if I'm honest I go again and again until I win. That's the problem with how I deal with cancer, I know that the chances are that in the end I will lose to it, I can't stand that, I really can't and that is one of the causes of my mental health issues. I have to learn to accept that I can't get everything I want, that I will lose some things but I don't want to. See stubborn till the end that will be me, the most obstinate argumentative person it could of picked a fight with. I love this, it's true and it reflects my thoughts in relation to cancer. There were plenty of times I thought it was over and to just give up. I couldn't though because I thought of those I was fighting for, I still do now. When I just want to let it happen, or to just let my mind go back to how it was, to accept the depression, to accept the anxiety or to just give up all hope I think about why I have fought to get to here, this moment in time, the reasons I have for living and they pull me through, they give me that strength and I think of them until I know the moment has passed and I can go again. This is the last picture, really it is. I think we have all seen or heard it before along with "Whatever doesn't kill you makes you stronger". It's true though, bad things will happen, they always will and I'm learning now that the first two choices are not an option. Not whilst I am remembering why I held on... I will gain strength from this struggle, I think I already have. I've gone from a sobbing mess, to someone who couldn't face his illness, to depression, to finding a bit of me again, to speaking in public, to writing this blog. They are all signs I'm getting stronger I just hope I can continue to keep that strength. I'm going to finish this chapter on a song, no surprise there!! It's a song from Frank Turner, again no surprise, and it's about capturing those memories, those moments, those times we want to hold on to forever. There is a couple of lines I think are right for this chapter.. "In the stillness of the moment it takes for a Polaroid picture To capture our faces forever The world has turned a touch on it's axis And the only thing certain Is everything changes" Let go of the little distractions Hold close to the ones that you love Cause we won't all be here this time next year So while you can, take a picture of us So in the stillness of the moment Make sure you take a Polaroid picture And keep it with you forever To remind yourself that everything changes But there was this one time There was this one time When things were okay... There is nothing more I can add to that, please listen and enjoy. I've digressed a lot recently from the story of how I got from diagnosis to here because I've been having a bit of a bad time. I'm really swinging from high to low and at times I feel like I'm losing it and then other times think that I can take on the world. I've thought that maybe going back to the story, as that is what the reason for this blog was may help me to find some more positivity.
2014 from my 6 month check through to the 12 month one was a period a lot like the one I find myself in now. My mood swings were severe at times, I managed them as best I could with CBT and mindfulness and I found myself opening up to some people and talking bit more on the emotional side of my journey. It wasn't many people who knew that I was struggling when I was because most people just didn't expect me to be. After 6 months people were starting to forget I had been through cancer, it was just something that had happened in the past, I shouldn't worry about it now, I shouldn't even be thinking about it, forget it, move on. That was the problem, there were times I couldn't, there are times now I still can't, but most people just couldn't understand that so how could I tell them that I still had days where I was gripped with fear and had to use all my strength to get through those days? I couldn't so I just kept pretending they were not happening whilst only telling those closest to me they were still happening but I was fighting them. They were getting fewer, most definitely, I didn't have them as much but the level of fear when they came was still incapacitating. I was going weeks at a time without one and then it would hit and it would take me 2 or 3 days to get fully out if it. I did start to find some joy in life again though, I started to feel that I would have a future properly, I was still unsure on how long it would be but I definitely felt like I would be having one. I was helping Steve through his treatment and finding some humour in the darkest times which was a very strange experience, to laugh at cancer felt wrong, it felt like we were tempting fate but we did it anyway, the Chilwell Cancer Survivors Club was trying to tell cancer to f**k off. Love and feeling loved wasn't scaring me either, I didn't want to push away, to make a distance between myself and those that loved me, it was feeling loved that kept me opening up, little by little, feeling secure was making me concentrate on the future more, it was giving me strength to use the CBT and face the fear when it arose. When I was struggling to sleep at night because of thinking about cancer I would think about the faces and smiles of those I loved, of my desire to live a long life with them, a happy life, a full life. 12 months and a whole year in remission soon started to come around and was the point of one of the things I regret the most in this journey, the embarrassment makes me cringe even now! I had built my 12 month check up in my head to huge proportions, I was convinced that it was going to be now that it would give me a kicking, that I would get to 12 months and start to feel secure and then cancer would start to fight back, it would win it's next battle with me. I guess it was because I had started to turn a corner, I was having good days, I did think about the future, did I actually deserve to think that way? By the time I had got to the hospital that day I was worse than a coiled spring, I was ready to explode, I was so convinced it would be bad news I was angry. Angry at myself for believing I could think of the future, angry at cancer for ruining my life, angry at the fact I was helpless about controlling if it did come back. I had booked in and was sat in the waiting area, foot tapping, deep breathing, hands wringing and clapping, swearing and muttering under my breath. "Hello!!" was what I heard, that friendly, familiar voice that had got me through so much, it was Nicola. Now these next thoughts happened in literally the blink of an eye, I mean less than 2 seconds, you have to understand that because then you may understand why. In my head when I saw Nicola my head went "what's Nic here for, she isn't normally here for oncology appointments, she only ever does plastics clinics, it's bad news, it's got to be bad news, she is here because they need her to be here when they tell me it's back, she is here to help me, she is here to support me, yep its bad news, I can't believe it after all this time it's back and it's going to kill me." What came out of my mouth was "What the f**king hell are you doing here?" When I got into the room I couldn't apologise enough, I was horrified at what I had said, I kept apologising over and over. Nicola was Nicola, she told me no to worry, she wasn't upset by it, she understood why I was like it. That didn't help me feel better because I was so embarrassed that I had said that and spoke to someone like that who had always been great with me. They gave me the news that I was still in remission and I was overjoyed, I was overjoyed that I had made 1 year. I was still gutted by what I had said but she gave me a cuddle and sent me home, told me to relax I had got to 12 months, it was a big step, I had made 12 months. I got home that evening and started to cook dinner, I was starting to experience the familiar crashing feeling as my body started to relax for the first time in a week, my mind was wondering, my body was slumping and then I cut the tip of my thumb off!! Not a lot of it but enough blood to make me wobbly after no food and sleep for days. It was off back to hospital and some stitches to put it right. As I was sat telling the nurse what had happened and what my day had been like she looked at me and smiled. She said "you must be so happy, to have got to a year, a whole year in remission is a big thing, I can see why your mind was wandering" and it made me think. I had got to a milestone and I had got through it. I had done 12 months NED, in remission, beating cancer, I should keep looking at that future, planning for it, seeing it in my mind as I went to sleep. I did and I do, it opened me up a little more, it pushed me a little further, it started the road to this blog. It was another step on the journey back, that journey that doesn't end but does get clearer, that does get easier.. Hi all, my posts have got a bit jumbled, but the one titled "Two very public situations" is the latest.
Thanks. Darren. |
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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