It's my youngest son Charlie's 3rd Birthday this week and he is super excited, he thinks Santa comes on his birthday, you can try telling him different if you want he is having none of it. It's a big day, his 3rd birthday, he's now officially a big boy and not a baby but last week there was also another significant anniversary in my life and the lives of those who love me. It was 3 years last week that I went to the see my doctor with a funny lump in my leg. 3 years since I joined the club.
I can still remember it, I walked into the surgery in shorts and flip flops without a care. I didn't think I had anything to worry about so why would I have been worrying. The only brief moment of concern was when she said "OK, take your shorts off please" because I normally didn't wear anything under those shorts and that may have been awkward! Luckily I had but I can also remember feeling very conscious of the doctor knelt down in front of me rubbing my legs and saying "yes, that's different, it feels like it's in the muscle not under the skin". We talked about my weight, had I put some on or lost some? I sat there wishing I had never had that last bag if chips! She believed it to be a fatty lump, nothing to be worried about, if it was we would probably leave it alone unless it was causing me discomfort and then it would be a quick surgical procedure but I wasn't to worry and the ultrasound was to stop me worrying. I've talked about being laid on the ultrasound table and my thought's going to Graham and his eye test because of his headaches and what had happened from there. I really did have a sick feeling in the pit of my stomach, I did feel real fear, it was fleeting and I controlled it, I was 38 a bit chubby yes but generally healthy and anyway that wouldn't happen to me I was invincible. Even when he said I need to refer you as I can't see the centre of the lump the fear was only fleeting, I didn't understand what that meant I mean why would I? Christmas 2012 was a strange one, life was so busy, a newborn and two over excited kids, I was waiting for the referral but not quite sure what it meant, missed calls from an unknown number on Christmas eve but telling myself if it was important they would leave a message. Then the call on the 27th telling me I was being referred to a Sarcoma clinic but not to worry when I got the letter or to google it, just go and see what they said. That was the first time in my life I had ever heard the word sarcoma, I hate the word but now it is just a word nothing more than that, I can read it, write and say it without feeling sick, without my heart racing. I'm not going to rehash old chapters or go through it again but I guess what I'm saying is that 3 years is a long time it really is. Life goes on, time stops for nothing. My life and who I am have changed, at times beyond recognition but I still remember every point of how I joined the club with perfect detail. There is no artistic licence in these words, they are exactly what happened, what was said and how I felt. I can't remember where I was 2 weeks ago, I travel a lot, but I can remember December 2012. I guess that shows just what this sarcoma thing, this sarcoma journey does to us. It changes our lives beyond all recognition, it changes our hopes and dreams, it changes how we feel about ourselves and those around us. I think it makes love more intense, desire stronger, a sense of mortality that pushes us to truly accept we are only here for a limited amount of time and that time should be full of love, wonder, excitement, happiness. It also makes us scared, I can say that because I have spoken to enough people now that even the bravest, most optimistic among us get scared sometimes. For too long I thought that was just me, that I was weak for feeling that way, that I should be stronger, more of a man, people were depending on me, people were a lot worse off than me so why couldn't I shake that fear. That fear controlled my first two years, it changed my life not in a good way, it made me hide, something else I had never done. I had to learn to accept it, to realise that whilst our journeys will be similar they will never be the same because your journey is yours and mine is mine. there is no right or wrong way to feel or to act, we do what we feel and that is all we can do. The last year has been different, I accept my future. I accept a future that will always have sarcoma in it, it will always be a weight on my shoulder and some times it will get too heavy for me to bear. I will need help to carry it but now I know that people will bear it with me and it doesn't make me weak or a failure to ask for help. That is the difference now and I refuse to let any more time go by, not one day, one week, one month or definitely one more year where the fear of this journey stops me making the trip. Everyone says that you only live once, I believed that until it was put a different way to me. You don't only live once you only die once, everyday you get to start again, to start your life how you want it to be. I don't know what the next 3 years will bring but they are 3 years that I intend to live, to enjoy. Even if there are days that I fail, that the load gets too great, that I let sarcoma and cancer get the better of me, I will always get a chance to start again the next day, to take another step, to look to my future and make that journey.
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When I first came back to work I was asked if I would be doing my normal job of hosting a table at the Construction Industry Procurement Society dinner dance. I had been going for a few years as part of my duties at work and had always enjoyed it so was more than happy to do it. The charity that it supported didn't even enter my mind, I booked the table, invited the guests and got my dinner suit ready. This was first and foremost a corporate hospitality networking event, there would be competitors, customers and some friends there and as such behaviour and how you carry yourself is really important. The public face of your career so to speak which is why I was pleased with who accepted the invitations as I had always got on well with them and a couple had attended the year before with me.
Anyway, it was in October just before my first 3 month check up and in the back of my head I was building up to that but I hoped a good night out would be a bit of a distraction. We got to the hotel, got ready and headed on down to the bar. I don't know if you have ever hosted one of these things but it's bad manners to arrive after your guests in the bar! I ordered some drinks and started looking around, nodding to people I recognised, handshakes and promises of chats later on that night to others, but all the time on edge waiting for someone to ask me about my illness. The industry I work in is fairly small and people knew why I was off, some offered encouragement others were just shocked but they all knew and I could see that some wanted to ask but weren't sure how and others thought I looked too healthy to have just come back from cancer. My guests arrived and as is normal the wives, partners and girlfriends all stand and chat and the man generally have a beer and talk a bit of business before everyone just concentrates on enjoying the night. This was when I was first asked and it should of been a sign, as I've said earlier in the blog, I had my stock answers, I used them and moved the conversation on quickly, as quickly as I could. They could see I was uncomfortable and thankfully let me move it on without dwelling on it, but it had hit me, it had effected me and I had lost my train of thought for a while. I actually took myself away to the toilet, I went and locked the door and lent up against the wall feeling sick, I knew I couldn't hide all night but I was conscious that everyone had gotten uncomfortable, it was going to have to be a night of avoiding this conversation at all costs, this was public, this was work, this is what my work face was made for. We had dinner, everything was going well, cancer had been forgotten again and in general there was a lot of laughter. Then the representatives from the charity got up to make their after dinner speech and to remind people why we were there. They were from Rainbows Hospice and then it hit me. I had always supported this event because I supported the cause, I am a parent of course I would. I just hadn't thought about it and as the lady started speaking it was then that I started to lose it. She spoke about the work they do, the money they need to stay open and then about the children there. She had asked them what they wanted to tell us about Rainbows and their response "tell them we had fish fingers for our tea". I broke at this point, my heart was racing and the tears came. I quickly jumped up and excused myself, back to the toilet, back to the locked door. In there I let it come and I let the tears flow, in my mind I was thinking of those kids, they had not even lived a life yet, they were in so much worse a situation than me but could still say "we had fish fingers for me". I felt so embarrassed of the feelings and thoughts I was having, had experienced. I felt a coward, I felt that I was pathetic for feeling the way I did. I wanted to be as strong as them, I felt sorry for them and yet they were the ones with the strength. I couldn't rationalise it in my head, I still can't now, all I could do was ride it out. I stood against the wall of the toilet until I could control myself and force all the feelings back down inside me, it was what I was good at then, I did it, I washed my face and then composed myself and headed back to the table. My wife asked if I was OK? I just nodded, the guest next to me who knew me well asked me the same thing and I nodded again, no words just nodded but it was too late at this point, the whole table had obviously noticed how upset I had been and were all looking at me with inquisitive eyes. I just decided to get it over with quickly, the old pull the plaster off fast trick, less pain that way! I explained about just coming back, of having had cancer, of now being in remission and that it had just upset me a bit to think about the hospice and what they did there. The men who all knew just nodded, sipped their drinks and went back to their meals, normality. The wives all gave me the head tilt look but as soon as I lied and said that I was happy and feeling better, the mood lifted again quickly, everyone accepted that I was over it, I had "beaten" it and everything was back to normal..... When I think about it now I wasn't ready to be in that environment then, as a parent that was an upsetting thought about the hospice but as someone who was struggling with fear it was worse. I write it here because of the contrast with the next part of this chapter, the two events were 15 months apart in time and as far away from each other as it is possible to be emotionally. The following October I was at a committee meeting of the Devon and Cornwall Concrete Society and we were discussing our annual lunch. The discussions led on to which charity to support for the event and I stated I wanted it to be Sarcoma UK. The comittee wanted a local charity but as is my way I dug my heels in, said I would arrange it and that was that, discussion closed. I eventually won the vote, more by attrition than anything else and was pleased we would be raising some money, it wouldn't be much the last couple of years raised about five hundred pound per year but every penny helps and it would also start to raise awareness of Sarcoma. As you can see from this I was starting to get a lot better at this point, I was still having panic attacks at times and the dark thoughts could come back but I was now strong enough to talk about sarcoma, well a bit anyway. As the event drew closer it became apparent that we would be struggling for a speaker, unfortunately Sarcoma UK is still a small charity compared to some of the cancer ones and they were unable to get someone to attend. The idea was then proposed to me that I gave a short talk on my experience and journey so far. I didn't know what to say, if I'm honest I really didn't want to. I had never really talked about my journey in private let alone in a room full of people some of whom I did business with, others were complete strangers. They said I could think about it but if I felt I couldn't do it then we would have to consider another charity and ask them to provide a speaker. It was when they said that I agreed, I would do it, I would say something about my journey, about what I had been, where I was and then where I was going. They arranged for the CNS from Derriford hospital to support me and give some general information on Sarcoma but I would give the personal side. For the next 2 months I tried to write down something, I tried to write anything but every time I did I screwed it up and threw it away. I was starting to worry that if I spoke about it, if I took it on I would tempt fate and bring it back. I also didn't know where to start, I didn't want to start really. These were my innermost thoughts and I had shared them with only a couple of people, the people closest to me, the thought of sharing them in a public forum terrified me. Actually that's not 100% true, I had at this point been thinking about writing it all down, my therapist had suggested it and it had lingered around my mind but that was going to be for me. Yes it would be a record for the people who loved me or cared to look back at and maybe understand me a little and what I felt as I went through this but that is all it was never going to be public, no way. I ended up putting it off and putting it off, a couple of times I though about saying I couldn't do it, I wouldn't be available now, I had other meetings to attend but then I knew that the charity would change and I wouldn't be able to get the sarcoma message out there either. The night before the event I found myself in a hotel room in Bristol with a large glass of Malbec and a blank word document. I had started the day at 3am and had flown to Germany and back on business but I had officially ran out of time. In 12 hours I would be stood in front of a room of people and there was no way I could just wing it! I wondered where to start, I wondered what to tell them, what should be the first thing that I say and then I decided. It should be the first thing that was said to me on my sarcoma journey..... "I'm sorry young man, it's malignant" 6 words that changed my life.... If you recognise the words you have either been with this blog from the start or you have read my story back to the start, it's how this blog started, it was the first words I wrote and there is a reason for that too which I'll say in a minute. I looked up from the screen about 2 hours later and realised I had barely touched my wine, I was exhausted after being awake for 23 hours and my speech was written. I had wrote and wrote and when I had begun I had lost myself, the words had taken over and my thoughts and feelings were on the page. I started to read it back but couldn't concentrate, I just thought get some sleep, you're are getting up in 5 hours, you need some rest, read it when you are in the car with Micky tomorrow. My brain didn't need much convincing, I saved it, emailed it to the account on my iPad and fell asleep. As we travelled the next day I sat and read my speech, it was all there, feelings, facts, emotions and some jokes. Yes, jokes. They were some of the things me and Steve had laughed about in my kitchen and I worried that putting them in there would lessen it, would cheapen what I was trying to do. Then I thought, there is humour in this journey, dark humour yes but still humour. As an ex squaddie I "do" dark humour so it stayed, jokes about "saving some" just before radiotherapy, of wet beds and epidurals. We got to the venue and I watched it fill, I sat and tried to relax enough to eat some lunch but couldn't, I drank water not wine and then all of a sudden speech time came around, all too quickly! Liz the CNS went first and "warmed them up" with some facts and figures about Sarcoma and then I found myself looking out into a full room with all eyes on me. As I stood there I wanted to run, I wanted to bolt for the door and not look back. I give presentations all the time for work, it's probably the thing I do most but at this moment in time I felt like I was freezing up. I had a sip of water and then fought my brain, these people didn't want to see me fail, they were not here to judge me and they knew I was just a normal bloke not a professional after dinner speaker. They were just waiting for me to start, to tell them how it feels to have sarcoma, I was the only person in the room who had had it and probably not many had even heard the word Sarcoma before. More water, deep breath, OK let's start... "I'm sorry young man, it's malignant...." As I was talking I felt a weight leaving me, with every word something was leaving me, with every laugh I got and by understanding the silence, that it was silent because they were listening, they wanted to hear me speak, they wanted to understand something left me. That something was some of the control cancer had on me, I was talking about it, really talking about it and it was making it better, so much better. After I finished we asked for donations in sealed envelopes and then people started to mingle. For the next hour people came to me to speak, to thank me for the speech, to say that they were moved by it. I was embarrassed, really embarrassed but it also felt great, it felt great because they were now talking about Sarcoma, I was talking about Sarcoma and people wanted to listen. Some suggested that sharing it may help others who were in my situation, make them see they are not alone and their thoughts were not unusual or different. The more I thought about this, the more I wanted to help others, those who were experiencing what I had, what I was. Maybe someone would see it and help me to deal with things better, give me the help I needed. As I sat on the train home I thought about it more and more, I wanted to do it but the nerves were still there about actually writing the whole thing down. 6 times between April and July I started this blog but deleted it, I just couldn't find the nerve to publish, maybe I wasn't happy with the words I don't know. Over and over though my thoughts returned to one comment that was made over and over again that day, it was how I felt when I heard those 6 words and how people couldn't imagine how it would feel to hear them. I knew that only those that had heard them could truly appreciate their affect and that's why I decided to use them in the end, they would be my beginning.... "I'm sorry young man, it's malignant" and from there came this blog. This blog has continued to help me, tonight as I write this I realise how far I have come and how much strength I have, how much I can do, that I can face things alone if I have to or be there for others if they need me. I am stronger than I sometimes remember, this blog and people's responses to it have helped me understand that, I shouldn't forget that. Thanks again for reading and as I've said before this journey isn't over, my thoughts aren't final, there is more to say and I will keep saying it. Also if you have some time to fundraise or a bit of spare cash, yes give all you can to Sarcoma UK but if you still have a bit spare then please help Rainbows a little too.... http://www.rainbows.co.uk/the-hospice Well Monday was a good day. It was a very good day. Monday I got to 27 months, that's 2 years and 3 months or 116 weeks since I went into remission, and I'm still in it. I've been moved out to 4 monthly checks for the next year and then it will be assessed again after that. That means it will be February before I have to walk into oncology outpatients again, February before I have to sit watching the people around me, February before the scanxiety will build again. February when I have the chance of someone telling me I have cancer. It may sound like I'm celebrating, I'm not, not really anyway, I'm relieved more than anything, relief that for the next couple of months I will be able to control my fears a bit easier, that I will hopefully not think of a recurrence as much as I did over the last 3 months, that I won't see a date in my diary that makes my heart beat faster for a month longer. As time goes on the start of my scanxiety is later and closer to my appointment. There are still days I think about me having this illness, in fact everyday I think about cancer in one way or another, but the fear isn't there everyday. Well not full blown fear but some, the thoughts are always when I see or read something, I see someone has died or someone has been diagnosed and I feel for them to the bottom of my heart and then I'm thankful, I'm here, I have another day to live and another dream to chase. I still feel love in my heart, I still see a future, I still see happiness and that makes me grateful, that makes me thankful I got another chance. Monday was also a good day for me in that I managed to control my scanxiety to some extent, I wasn't crippled with fear from the moment I woke up. I managed to keep it under enough control to do a little work before I went to hospital. I started to build in the hospital car park though but my mind was able to go elsewhere, to think on happy times, my brain went to holidays to come, of memories yet to create, my loved ones, my friends, the people who mean a lot to me. On another side I have read and seen some stories and posts of people who haven't had a good week like me. I see some are worried about possible recurrences and some have lost their fight. My thoughts have been with those people as well this week, them and the people who love them. I really do wish all the positivity I can to those suffering and I wish love and peace to all that are grieving. People sometimes forget that the people who love us, the members of the cancer club, have worries too. They worry about our futures, about whether we will be here or how they can help us if we get ill again. That's a tough thing, a really tough thing for them and all we can do is tell them that by just being there for us they are doing all we need. They give us love and that gives us strength, that strength gives us fight, and that fight will always give us hope. I've also seen a story this week of strength and hope doing a wonderful thing in the face of sarcoma, it was the story of Carey Lander of the band Camera Obscura. Through what she faced and by doing what she and her friends and loved ones could they have made great leaps in awareness of sarcoma this week. She raised so much money for research as well but just to see social media, newspapers and even the BBC website discussing sarcoma it gives me hope that we can start to raise awareness. Raise it to a level that people do know what sarcoma is, and of course help those who can to donate to further research into a cure. That brings a better future for us all. It was the future that had been my problem, the fact that I had lost control meant I couldn't face thinking about it but now my brain will go there and enjoys it. I can try to look to my future and the fear of not being there for it is not as strong as it was. If I'm honest it all comes down to the realization that "It may not be cancer that kills me!" My best friend is currently in a coma, he's been in it since May after a motorbike accident. He had been in remission from Hodgkins Lymphoma for a few months and was chasing life like he always had and then....that! It helped me see that I can worry about cancer and a recurrence, I've had sarcoma it is a real possibility, but I could also be in a car crash or some other random event. By fixating my worries on one I have forgotten the others, I've also forgotten that there is a life to live. You can see how big a difference that is to my early thoughts, my story chapters have started to tell you how I started to climb out of that hole but there is still more to come, still chapters to tell about the people and experiences that helped me get to this place. So that's it really for this chapter, a short and sweet one, it's back to the story for the next one but for now I'll dream, I'll dream of a future, a future of a cancer free life, a life of love and good times, because if we forget to live and experience the good times well why did we fight at all? If you want to give to Carey's justgiving page here it is https://www.justgiving.com/Carey-Lander and here's a link to some of her music because it's the memories and legacies we leave that are our footprints in the sand of time....... When I decided to write this blog, the exact when comes later in my story, I decided that I would have to be completely honest in what I wrote and most importantly with how I felt at all stages of my journey. Now I knew that it would be difficult to write and also at times difficult to read for some people, but if it could help just one person by helping them realize that they are not alone in their thoughts or feelings and that someone else has felt or thought that way then I had a duty to put it up here. I guessed that at times I would make people laugh, possibly at times cry and probably at times angry, I've always had that effect on people....! In all honesty those and a big dollop of embarrassment are probably what I have felt and feel now as I write all this down. All I ask is that you don't judge me, not until I have completed my story on my journey to where I am now, I have a very different outlook now, massively different, I can face my future now, I see a future now, no matter how long that future may be, and that future will be full of love and happiness.
Yesterday I had a chat with Steve on Twitter, he has been great supporting me and this blog and has kindly invited me down to meet him and the support group he is connected with. He was worried after the last couple of chapters about me meeting the group. I'm guessing that he was not sure how I would react to people. We talked a little and I tried to explain the basic essence of what tonight's blog is all about and how I have changed during my journey and how I really am looking forward to meeting him and the group. After that chat I thought a lot today about the recent chapters and wanted to write this one as I felt that this part of my journey and how I got here needed a separate chapter. There are some very dark places that my blog goes to, they're there because I went to some very dark places, It's really difficult putting them here because some of the old feelings come back when I write them. I have fought hard to clear those thoughts as much as I can, yes they still come back from time to time and I can manage them now, but writing them and reading them gives them some power and I go back to how I was and how I felt. If I don't put them in though someone might be having those thoughts, might be feeling that way, they may be laid in an MRI scan thinking of their funeral or sitting up all night looking at their kids wondering if they will make it out of this. They may not want to talk to someone or feel that they aren't brave because they can't just deal with it like some do, and it's for them that I write those parts. Them and for me, to remind me that no matter how bad it looks there is a better time coming, it may not be perfect but it will be better than it was. I needed to go that low before I could come back but I hope that by me talking about it maybe one person won't have to. The problem was that I was always a very private person, I struggle to talk about things that bother me and I'm also a person that doesn't like to show any weakness. It's not an arrogance thing it's really not, I have always been in very "alpha male" types of institutions and jobs. I went to an all boys school, then the army and finally into construction and those places didn't really allow for any show of weakness so I had learnt to never show it. I had also been very much in control of my life, I had always decided what was best and then I lived with those decisions be them good or bad. They were my decisions and they meant I controlled my life and where it was going. After my diagnosis all of a sudden I was helpless, I had no control over my life and if there would be a future or not. That lack of control was the real problem for me, the lack of control on whether I would live or die. That lack of control meant that I was weak but with my personality the way it was then I had no way to show my weaknesses, I couldn't show any weakness or fear and that's why it consumed me. I know that none of us actually have that control, that life is short and I could be involved in a car accident or get hit by a bus, but we do all have that illusion of control until that illusion is shattered. If you have never been told you will die in an amount of time or that you have an illness or injury that gives a real possibility of death you still have that illusion, you can eat healthy, go to the gym, not smoke etc.. and all that gives you the illusion of control that you won't die soon, that you are controlling it. I can only assume for others but that first time they told me I had cancer that illusion and my control got smashed into a thousand pieces and can not be fixed and put back together now. It can be altered and fixed to work in a different way but it can't be returned to it's original state. If you add the lack of control to the resistance to show any weakness and admit to wanting help you can see where my troubles began. Right there in that instant but built from years of developing who I was in many different places and times. That was the first battle for me, acceptance that I actually needed help. Support groups were offered to me, right at the start my CNS Nicola knew they weren't for me. I instantly said that I didn't want to know any statistics or "what my chances were", I wanted to ignore them and just focus on what I needed to get through the next bit of the journey that I had. I didn't fear death as such, I was scared of the mess me dying would leave behind and the guilt of leaving behind people I love. I still have those feelings, the fear and guilt of who would be there to pick up the pieces for the people who love me when I could no longer be there to pick up the pieces!! This is going to be another embarrassing and maybe horrible admission, I didn't want to be around incurable and terminal people back then and I avoided any situation where I may have been because I did not want to look at my future. I could only see that in my future and because when I did I went into a full panic attack and lost all ability to cope with my situation I didn't want to have to deal with that so I ran away from it. I could not understand how they coped, they made me feel a failure for not being able to cope with a diagnosis when they were in such a worse place with so much more to deal with, and they handled it with strength and dignity. I feel sick writing the last couple of lines but I have to say that was how I was because back then I was like that. I was so scared of my future and so selfish and so determined that I didn't want to die that I couldn't be around those facing it. I knew that at groups there would be people who were in that situation and I didn't want to have to look at myself after meeting them and knowing that they were better people than me. All I wanted to be was strong, brave and positive but I just couldn't, on the outside I put my work face on and dealt with it whilst inside I was in turmoil. That's where my blog is up to so far on the story of my journey, it's nearly at the point I broke, the point where I really hit the bottom so to speak. I knew I was heading there after I left mindfulness, it was almost an inevitability after I gave up on the mindfulness group. Mindfulness had given me a tool to block out the feelings at that point but I was missing the point completely, I shouldn't have been blocking them out I should of been processing and dealing with those feelings and using the mindfulness to support that, I was missing the very core of the mindfulness message. After I went to the bottom I went into therapy and worked with a psychiatrist on cognitive behavioural therapy, that's going to be a chapter in itself and I don't want to talk about it too much here because it is a massive part in me starting to bring myself back. In the end the only one who could bring me back was me, only me. By forcing me to face those fears, by making me think about dying and what that meant, it made me stronger, I still feel sick and my heart races if I think too much about it but I can bring it back quicker, I can talk myself down with the techniques they taught me and that brings some control back to me. With me I have learnt that it's control, I have to believe I'm in control and then I can cope. I also have to say I know myself both physically and mentally so much more now, I understand myself, I know my fears, my hopes, my strengths and my weaknesses. I feel things more strongly as well, I feel love stronger than before, I feel hope stronger than before, I want my future more than before, I want to live my life to the very fullest and I will. This is what led me to join the sarcoma community, to reach out to people who knew what I had gone through, who understood my feelings and could relate to the pain, fear and yes sometimes the humour of a cancer journey. I want to support that community now and when I gave my first public talk on my journey it empowered me to take the next steps such as this blog and registering to be a sarcoma voice. I want to be involved now, I want to hear people's stories and help those I can. I want to raise awareness and money, I want to make people know what sarcoma is, so that you don't get a quizzical look when you say the word and I will continue to try until we win that fight. I guess that what this chapter really says is that my journey was made harder by not talking, by not admitting I was afraid, by shutting myself off. Now for you that may be the best thing, that may be the way you are going to deal with it but for me that idea was an illusion in itself. All the time I thought I was winning I wasn't, cancer was. I found in the end that having people who wanted to talk to me and in return me wanting to talk to them was what brought me back and gave me my future again. Yes mindfulness and CBT gave me some extra tools and I value them greatly and use them daily but it was love that made me find my strength. It was love and the finding of hope that made me believe that there was a future and it is a future that will be lived. I've been writing some more on my story but it deals a lot with my descent into my darkest days and my battle with anxiety and if I'm honest, well I am here it's my blog I have to be, I'm struggling to write it at the minute as I'm in such a good place these days, well most days anyway! I recorded the film Invictus the other night, ITV were showing it because of the rugby world cup I guess and I started watching it again tonight. I love the film, I love sport, I love rugby so it sort of ticks all the boxes with me. The one thing I really love though is the poem the film gets it title from , it's apparently the one Mandela read whilst on Robbin Island and the first time I read it something about it struck a chord with me and I had the last two lines tattooed on my foot. If you don't know it here it is..
Out of the night that covers me, Black as the Pit from pole to pole, I thank whatever gods may be For my unconquerable soul. In the fell clutch of circumstance I have not winced nor cried aloud. Under the bludgeonings of chance My head is bloody, but unbowed. Beyond this place of wrath and tears Looms but the Horror of the shade, And yet the menace of the years Finds, and shall find, me unafraid. It matters not how strait the gate, How charged with punishments the scroll. I am the master of my fate: I am the captain of my soul. by William Ernest Henley I have never studied the poem or what it is supposed to mean to me, I read it and looked for my own meaning as that is what I have always done with poetry, so if I have misunderstood it or got it completely different from the accepted meaning I'm sorry but this is what it means to me. I had always lived like that, no matter what life or fate dealt or indeed had in store for me I had stood chin up chest out and faced it, it never broke me, it never made my hide. This isn't the time or place for my back story, maybe one day but not today, I will say life has not been easy but my troubles may pale into insignificance next to yours or you may hear mine and say "f**king hell" and that belittles neither of them because they are ours. What I am saying is that no matter what life had thrown at me before I had taken it, taken it and dealt with it, dealt with it without so much as flinching, I never let it consume me or affect me to a point I couldn't deal with it. Yes I had suffered grief and sadness, anger and frustration but I controlled them and used them to deal with what had happened. I had never really had a fear of death either, I knew I would die one day of course but it was never something I considered. Even as a soldier death wasn't a fear, it was something that could happen but by not thinking about it you can cope with it, well at that time I could. I lived a life that was there to be lived, experienced and loved. Death was not a part of that life, yes I had buried friends but that fear of death just wasn't there, why would it be, I had never had to face it on a personal level and by that I mean I never had to face my own death so why would I know that fear. For a long time Sarcoma took that part of me away, it made those things control me and the more it did the more helpless I felt. The more helpless I felt the less I wanted to talk about it and as such the more it controlled me. When I finally spoke it started to lose it's control over me, then I realized the more I talked the more it lost it's control. I really believe that if I had talked about it sooner, if I had discussed my fears and feelings that maybe I wouldn't have had to go so low before I started my journey back. Without sounding patronizing if you are suffering in the same way please speak to someone, there is always someone to talk to, and if you really haven't then I'll talk to you, no matter how small the fear, talk about it, that will help, really, talking helps. I read the poem again tonight and now I see cancer in the lines and words. I see the fear, the despair, the bad luck of getting cancer. The fear is that of the eternal darkness, that fear I'm sorry can only be felt if you have had to seriously consider your death, to think of your mortality in the context that it may soon be ending. It talks to me of that fear pushing you, weighing on you, squeezing you and knowing that it's there. Getting cancer is circumstance, yes there are things that will increase your chances but getting it is just luck, yes bad luck but just luck. You can only control how you react and how you deal with it. We, and by we I mean cancer patients have all at times in our fight probably felt that fear, we have probably all felt that we cant go on, we have probably all wept in fear and frustration but we have definitely all faced those feelings and gotten through them in the end. Again I can't speak for people who are terminally ill because I haven't been there but the people I have met who are dealing that have been the most determined people I have met to face it square on, to fight their fear and it's those who have been the most inspirational to me as I fought back. In these lines I also see the strength and determination that cancer patients have, that inner strength, that refusal to give up and an ability to just keep going. I may have struggled at times but even I had that desire to win during treatment. I have spoken with and read the stories of people who faced with unconquerable odds, stood up, looked cancer in the eye and told it to f**k off. They would not and will not be beaten by this disease and I admired them and they helped me to find my way back to how I was before my diagnosis, to where I am now. If you haven't before please go to http://sarcomastories.org.uk/ the stories and the courage in those stories are a true inspiration, a demonstration of that ability to remain strong in spirit in the face of Sarcoma. The last two lines of the poem before my diagnosis to me meant that I would be the one to determine my future, I would chose how I would live my life and the decisions made would be mine and mine alone. They mean something quite different to me now. I know now that I no longer control my fate, Sarcoma does, in fact myxoid liposarcoma does, it controls the rest of my life. It will decided if, when or where it will return in my body. I can't do anything about that now. I can try and live a healthy balanced life, I can make sure I attend my check ups but if it is coming back it's not me that will decide it so I can't control my fate. I can though still be the captain of my soul. Sarcoma can't change my soul and it can't change me, it can't change the love I feel, the dreams I have or the thoughts in my mind. These are the things that make up my soul and I am still in charge of them and I always will be. Yes I still have days when the fear and the feeling of helplessness return but remembering that I am the captain of my soul and I can choose how I feel and how I face my life means that it will never beat me no matter what the future holds. I may not be the master of my fate but I will always be the captain of my soul. I'm sorry young man it's malignant...... they were the 6 words that changed my life forever, completely and totally, in an instant. I felt scared, sick, confused and didn't really believe that they were talking to me. I can remember them talking, my wife crying and me having a conversation in my own head.
"Malignant, what one's that? Is it the bad one? or is that benign? No it must be bad, they look sad and Emma is crying so it must be the bad one. F**k I've got cancer, s**t I'm going to die, no I won't it's in my leg, chest x-ray, why are they talking about a chest x-ray, how is that connected to my leg". The sound of his voice became clearer, less like it was underwater, "So Nicola will be with you now, this is Nicola, ask her any questions you may have". And with that the room emptied a little and my journey into treatment began. Although this isn't the start of the journey really, to understand how I got to that room I need to go back a couple of months and finding the lump. It had been there a couple of weeks, I'm a man, I ignored it, well I rubbed it a lot, poked it and even showed it to my mates but then one night I had my shorts on and as they rode up when I went to put my trainers away my wife saw it and asked me what it was. The conversation went a little like... "What's that?" "lump", "how long has that been there?" "Don't know, couple of weeks", "when you going doctors?" "I'll try and go this week, I'm busy", "No you're going tomorrow, that needs looking at", "ok I'll try and get in". And that was it, no worry, no panic just a funny lump and a trip to the doctors to keep the peace. The doctor didn't seem worried, talked about weight loss, looked at me talked about weight gain, and thought I'd developed a fatty lump as I'd put some weight on over the last couple of months. She arranged an ultrasound and I left fairly happy and ready to wait for my appointment to come through. I had other things in my mind, my third child was due anytime and we were getting ready for that so everything else played second fiddle. Charlie was born a week later, the 11th December 2012, and my main thought at the time was I really wished he had been born on 12/12/12 because that was a cool date. My appointment came through the week after and I got to x-ray, checked in on Facebook and moaned about the queue as you do, then sat waited for my turn on the bed. I talked the normal small talk with the staff and then all of a sudden a thought popped into my head and I couldn't shake it off. In September a friend of mine had been to an optician to check why he was getting headaches and was diagnosed a couple of days later with a terminal brain tumour and I suddenly thought what if this is cancer...? could it be...? no it can't no one has mentioned it. He scanned me and told me he couldn't see into the middle of the lump and that he would need to refer me back to the GP to see where to go from there as it would need to be checked, this raised the fear levels again but my brain kept saying "it's fine, no one has said cancer, stop being an idiot" and by the time I got home it was out my head again and life went back to bottles, nappies and no sleep. Christmas Eve my phone kept ringing from a withheld number, answer that? not a chance, I don't answer withheld numbers if it's important they'll leave a message. The 27th it started again, it was winding me up, and then I answered the home phone. "Hi Darren, it's the doctors, we have written to you and I didn't want you to open the letter and panic, we have referred you to the sarcoma clinic but we didn't want you to google it if you hadn't heard of it and start to worry". Now I've been bitten by that dog before and there was no way I was googling a thing. I went to clinic 2 days later and then it all just sped up, but still no one talked about cancer, and I definitely still avoided mixing google and sarcoma like the plague. My wife did it once, looked at the results and shut the page in less than a second!! I was referred for an MRI, back for results and now for the first time people started looking at me sympathetically. "Well were not sure, nothing to be worried about, it could be a fatty lump, it's just that it doesn't change colour when we do this" were said and then another referral to the regional sarcoma specialists. This is when it got serious, I realized something was wrong deep down, way at the back of my mind, but I could still control it. Another appointment and then I was having a biopsy, I think I knew at this point and when the consultant looked at the sample and said "yes just as we expect" I think I knew I was in trouble, but still as no one had said cancer I still would not even entertain it, not a chance. Results were due in 2 weeks, fine, it was my daughters birthday on Sunday, I left and drove home. My wife and I sat in silence on the way home, I think we looked at each other once, but not once was cancer mentioned. The phone call came on the Tuesday, "can you come in next week, we have clinic on Monday and we have made you an appointment at 2pm". Still nothing to worry me, the optimist in me was saying they are calling you in because it's nothing and they want you out the system. Now the staff are brilliant, and the décor and magazines fairly up to date but oncology outpatients is not a great place. And there I was, the 11th of February 2013, sat with people who had cancer, what the f**k was I doing here? In I went about 2.30, my consultant I've now discovered is always running late, more about his wonderful way with people than anything else, but still we were running late. The door opened in he came "I'm so sorry, we need a report from pathology, can you come back at 3.15?" really, why? can't we just do it now? ok I'll get a coffee. Back we came at 3.15pm and in we went at 3.30pm. Even at this point I still was saying outwardly that I was fine, it was nothing. I didn't realize my wife had heard them talking next door, she had heard that "it's a sarcoma" and then the door opened and into a room that was already claustrophobic and small came my consultant, a nurse, and someone else. Then came the 6 words that started this blog, and my world came crashing in. Nicola was great, she told me she was the sarcoma nurse and that she was there to look after me, gave me her phone number and said that my pre op for my surgery would be that week. I was given a slip for a chest x-ray and a blood test and I walked out the room. My wife was in tears, I was close, and outside the room was a couple, they looked at me, looked at my wife and the looked back at me. I was given my first ever "it will be ok" look, and then it was x-ray and blood test. I know I had them but I don't really remember them, I wanted to be home, to see my kids, to hold them, to plan my next move. I needed to be in control, I've always controlled my life, always, even the army didn't control me and this wouldn't. How wrong I was. AeedNichola is che, , s**e e ee saggne?eown oion in wwwim ta m mm, sick,redrlately hanged hhhterthatttha |
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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