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
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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 was the last time you rubbed a part of your own body? Behave yourself this is a serious blog.... For me it was my leg and it was about 4 minutes ago and that was probably the 10th time I did that today. 10 times? you ask, yes 10 times, at least once an hour and always the same way. I put my hand on the top of my thigh at the edge of "the dip" and slide it towards my knee. Open hand to cover the entire site of the dip, middle finger runs along the scar towards the burst blood vessels from the radiotherapy. Once it goes up the other side of the dip until the heel of my hand is out of the dip then I come back slowly, it's still numb and hard up the scar line apart from when I put it in a certain position and then it get's soft and I can really knead it to see if there are any deep lumps!!
Not as often but at least twice a day I check my groin as well, fingers in deep to check my lymph nodes, both sides, top to bottom. I check my stomach most mornings too, I lay flat in bed before I get up and push my fingers into the places the doctor does when I have a check up. Now you may think I'm not telling the truth, everyday? you may ask and my answer is.....Yes, everyday is the same, everyday I check. If I could check my own lungs everyday I would, if there was a weird and wonderful way for me to do it, even if it caused me intense pain or made me look stupid I would do it. In a heartbeat. And I've been doing this since I first went into remission. In fact I've just checked my leg as I wrote this, I noticed as I finished doing it. This habit started in the build up to my first 3 month check, after I was discharged I think I missed the security blanket of the hospital and treatment, I don't think I'm alone in that feeling either. I have spoken to a few people and when they first get into remission they miss not having that security around them, they see things or feel things wrong with their bodies as they adjust to life after treatment. I have never been to a group meeting of Sarcoma survivors or patients but I imagine it full of people rubbing parts of their bodies. What's strange is that I don't even know I'm doing it anymore, the first I know is when I'm told stop rubbing your leg, I guess it's like a tic now, just a subconscious movement that happens! I've talked previously about scanxiety and how I deal with it, or not as is really the case, so I wont really go into to much detail again but the build up to my first check up was a real mixture of fear and excitement, I switched between one and the other at the drop of a hat, almost minute by minute at times, I was desperate to go but scared of what they would say. As it got closer I also noticed me going further into myself and putting distance between myself and others. I was irritable and my concentration was also really affected. For the week before the appointment I didn't really work, I opened my laptop, I read my emails but I couldn't process them mentally, I answered the phone but didn't really speak to anyone. The office staff had been warned by my boss that I would struggle, I had told him, and they were brilliant they allowed me to work through it, one always asked how I was each day, always the same question "You ok?" and always the same answer "Yeah, muddling through" and then chin up became the motto and the way our conversations always ended "chin up, bye". I didn't really speak to them in too much detail I still couldn't speak to anyone in depth but "chin up" remains even to this day. We went to Centerparcs on the Saturday and Sunday before the check on the Monday, it was my eldest son's birthday and he loves the place, all my kids do, I think it's the swimming pool! That weekend I was not good, I tried to put a version of my work face on as the family didn't want me miserable, they didn't want me moping I needed to be happy to be celebrating my son's birthday and I was on the outside, it was inside I was struggling. I was rubbing my leg almost constantly and I mean constantly, I was doing it 15 - 20 times an hour, it was ridiculous but I couldn't stop. On the Saturday I had been in the pool with the eldest two all day and my asthma flared up, I knew it was asthma but that part of my brain started up again!! It's a met, that's what the problem is, that's why it's bad, that's why the inhaler doesn't work, etc.. etc.. Then the Sunday night I just sat and watched TV, I've said it before that's part of my routine, still is, always will be I'm sure. I'm back again in a couple of weeks and I know already that Sunday night is shit TV night!! I built myself up that night to accept the bad news, I was convinced so I was ready to accept it, to go again, to fight that's what I had to do, I really was ready. The actual check up was as I described before, the start of the routine that I know and have now, the x-ray, the wait, the room, the wait, the results and the relief. What I did do at the end of the check up was speak to Nicola, I told her how I had been, I told her I was struggling to cope and that I was convinced it was coming back, I didn't tell her exactly how bad and how black my thoughts were, I still didn't want anyone to know, she offered me counselling I refused but I did accept when she said she would speak to the people at Maggie's and see what they would suggest. I accepted because I wanted to find a way out of my hole without anyone knowing I was in it, I thought I could get through it and no one would ever know. They say hindsight is a wonderful thing, that's true. If I had known how bad it would get I would of taken any help at all, anything, anywhere, anytime, from anyone. 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 fell asleep on Friday afternoon and woke up at Saturday lunchtime, my leg was throbbing and that was what woke me up. I hadn't taken any painkillers in nearly 24 hours and my drain was nearly full, I ached from being laid still for so long and my head was still quite fuzzy. My first thoughts were of the dull ache in my leg and then happiness, the tumour was gone and now I was going to recover. I had an appointment in 4 weeks where I would be told the results of the pathology of the tumour and also if the margins were clean after testing was completed on them, I pushed that out of my head for the next couple of days I just had to rest and then get ready for rebuilding the strength in my leg. I knew there would be some things I would struggle to do but I had decided that I would treat this like every injury I had ever had over the years and the harder I tried the easier it would be to deal with and improve. But first Saturday was going to be a rest day, I got out of bed, bed was for ill people, and used the toilet. I know that's not the most interesting or even nicest thing to write here but after the "trials" of the hospital pots it was a wonderful thing!! I went and sat with a cup of tea and watched the British and Irish Lions match I had recorded on Sky earlier and just switched my brain off. Charlie came and sat with me and I tried to explain the intricacies of the game of rugby to him but at 6 months old I don't think he got a lot of it! I had some messages on Facebook with some people just wishing me well and others saying they wanted to come and see me, I did actually respond to some that day so I must of been feeling very confident of what was to come, I looked through the list and saw the people who had persevered with me through the dark times, they were there again, wishing me well and I thanked them, I truly meant it. I have to say that this really was one of the good days during the whole journey up to the present, I think the high level of painkillers running through my system may have helped though as well! I crashed out early again that night, it felt like a lot of pressure was slowly releasing, it wasn't all going but a lot of it was and my body was shutting down. The whole 5 months of pressure, panic, fear, worry was lessening and my body was saying "rest Darren, sleep mate, come on let's sleep". So I did. When I woke on the Sunday it was father's day, Harry was coming back from Spain and I was with my kids on father's day, the walk up the hospital corridor and the pain that went with it was all forgotten, now in the cuddles from Madison and Charlie and the thought of seeing Harry later all of it was gone. Mid afternoon I put my drain into the leg pocket of my shorts and managed to squeeze myself into the car and we went to the academy to meet Harry from the bus. It was lovely to see his smile, he had had a great time in Spain and couldn't wait to tell me all about it, I think he was also secretly a bit worried after he had left me in hospital on Thursday and was pleased that I was out now. I got home was given my cards and presents and I just enjoyed the rest of the day, it was my day after all. It was about this time I started to take my first steps into the Sarcoma community, I started to follow Sarcoma UK on twitter (@Sarcoma_UK) although I didn't click onto any links, no, no, no, not yet I still wasn't ready for that and I tweeted a couple of times about #sarcoma, then a couple of people started to follow me and talk to me. I was still really scared about learning about my cancer or seeing any statistics so I didn't say much but it was contact with other cancer patients which was something later on I really struggled to do. That is something I will talk about later as it will highlight some of the other issues that cancer patients encounter, very serious issues, mental health issues but that's for another day as I think they deserve a chapter of their own as they had a very traumatic and lasting affect on me. A tweet I received was from another Sarcoma patient living in America, she sent me a link to the song below, she said that when surgery and everything else got too much she would turn this up and sing as loud as she could. The thought that a complete stranger would send me a small thing like this just to support me was touching, we talked on and off over the next couple of months and I saw that she was going into remission as well. She stopped tweeting in June 2014, I really hope it's because her life is back to normal and she never gives cancer a second thought! She deserves that for the random act of kindness she showed me that day. I actually heard this song on the radio this morning, it was just such a coincidence as my brain has been telling me the negative thoughts again for a couple of days, I'm fighting it back though and listening to this song took me right back to 2013, I could feel tears in my eyes and the hairs on the back of my neck stand up, so I turned it up full and sang "Can we go back, this our moment, tonight is the night, WE'LL FIGHT 'TIL IT'S OVER, so we put our hands up like the ceiling can't hold us!" The first week after surgery I made a real effort to be up and about as much as possible, I wanted to keep moving and develop a new routine, once again life had changed so a new routine was needed, a new direction and focus needed to be found. I was yearning the security of the routine again. I would be waiting 4 weeks for the results of the surgery, I know that might not sound much but 4 weeks waiting for results of any kind is a lifetime to a cancer patient, so what could I do? If I'm honest my obsession with my drain consumed a lot of that first week. I was desperate to get the bloody thing out of me, it got in the way when I slept, when I tried to shower, when I wanted to go anywhere. I wear shorts a lot, in fact most of the year I wear shorts, it's just me, so in a way that's a good thing. No one thought it unusual to see me knocking around in shorts, only the really eagle eyed ones could see the small pipe that ran from the bottom of the leg into my pocket, and not all of those asked.
Although now at the school gates people saw the crutches and those that didn't know started to ask what was wrong? What had I done? This was another set back on my journey, I still didn't really want to talk about it and I hadn't had the "aren't you brave look" for a while now and I didn't want it, no way, not after it had been cut out, not a f**king chance. If anything I avoided answering the question "what's happened Darren?" "Just some surgery on my leg, nothing important", it was easier than the look and the positive thinking comment, I really didn't want to have another outburst at someone either. Don't get me wrong I was in a good place, I was happy with how it was going, it's just deep down there was a gnawing thought that what if they missed it? What if it had spread after all the tests and now it was growing in my chest again and no one knew? That's what happened my to Grandad Taylor. I fought against that thought by ignoring it, by every time it popped into my head finding something else to concentrate on, something to do. It was a bit similar to when I gave up smoking in 2008, every time I wanted to smoke I stayed occupied and that's what I did now. If I'm honest this was another step down the mental health rabbit hole that I was digging without realizing it. Whilst I continued to ignore it I didn't learn how to deal with those thoughts that were building up inside, it was inevitable that it would come out at some point and it did just that, later on yes but it did and it was not a good thing. After 9 days I woke up and the drain had very little fluid in it, I looked, smiled, checked the measurement, smiled again, checked again, below 50mm, yep, lets get it out! Then I noticed there was no pressure in it, the bulb at the top which I used to keep it pressurized was not working, I tried and tried to get the pressure in, nothing, yeah now I was making a call but it wasn't the one I wanted to make. I had decided to get out of hospital early, I had said I could look after it, I didn't want to stay in there until the fluid had stopped draining so now I had to deal with that choice, time to put my chin up, my chest out and get it sorted. You said you could do this Darren so now if you have to have it stuffed back in, well that's your fault! I had been passed back to Derby for my surgical follow on care and physiotherapy so I didn't really know who I should contact on a Saturday morning. So after a call to the 111 number or NHS Direct or whatever it was back then it was recommended I headed down to the local Accident and Emergency to see what they could do. After brief wait, brief by A & E standards anyway, I was told that they couldn't really do anything. The drain I had was used by the Nottingham hospitals and not Derby ones, therefore they couldn't replace it as it needed to be the same one. They passed me on to a department up in the hospital so I wandered up there to be told the same thing and that really I should try and phone Nottingham to help. Now please don't think this is in anyway a criticism of the NHS staff, it's not, it's a reflection on how the system works or in this case didn't. I was sat on a Saturday morning with a broken drain and couldn't be looked after at my local hospital, I called the burns ward over at City Hospital and they said to come in. They would have a look and see of they could do anything but as I had been transferred back to Derby they weren't sure exactly what could be done. I made the trip to the burns ward and they looked at it for about 5 seconds and told me the pipe had come out of the wound and couldn't go back in. There was only one option and that was to remove it. The removal itself was fine, not a problem at all but then they told me they would have to monitor my leg because the fluid was still in there and they weren't sure if my body would absorb it or not? Now I'm no doctor but fluid being stuck didn't sound good, in fact it sounded as far from good as I wanted to be at that minute, but unless I wanted extra surgery to put it back in this is where I was and there was no other choice. Like I said the stubborn Darren had got me to this point, the demanding of control of the situation and now I started to realize I couldn't do that and now maybe I should listen more, it would of saved all this! I was back two days later, the painkillers were not working and my leg had started to swell and looked "angry". I was so fed up, after everything I had been through a bloody faulty drain was the thing that created a complication. A bloody stupid plastic pipe was going to cause a problem. That pissed me off. Still when I was laid on the table and they said they were going to aspirate it, I didn't think that would be a problem, I mean aspirate, that doesn't sound bad, it sounds a nice word. Well it wasn't, it felt like they were sticking a drainpipe in my leg. I have to be honest after two goes they said it didn't seem to be working and that they would give me some tablets to take with my painkillers and these would hopefully control it and help the fluids and if not we could give it another week before we needed to aspirate it again, I jumped off the table, grabbed the prescription and sprinted for the door. Well sprinted as fast as a man on crutches with a bad leg that had just been aspirated could sprint. For the next 7 days I took my pills religiously, every 4 hours, with food and lots of fluids. That bit I didn't get, lots of fluids, but maybe the result of drinking all that helped to drain the fluids in my leg too because after a week it had settled down. I went out everyday walking as well, first on my crutches and then after a week I would put less weight on the crutches as I was waking and more on my leg. Around the house after 2 weeks I wasn't using them, only when I went out and had a bigger distance to walk. After 3 weeks I was only using them for really big journeys and even then I was pushing my leg harder and harder. Mentally I was getting stronger, or so I thought at this point. I was actually starting to talk a little about what had happened, to those close friends who had kept on at me and now they had started to break the barriers down slightly. I was now telling them a little bit about it all, only the physical side though, feelings and thoughts were still off limits, that's changed a lot now, I have a friend I can talk to, someone I can tell when I'm bad, when I'm good, when I'm scared. A cancer patient needs someone like that, a person that sometimes just listens, doesn't even have to comment just listen, because sometime just listening is all it takes. I still couldn't even really say I had cancer to people without feeling sick in the pit of my stomach so the thought of telling people what was going on in my brain when the dark thoughts came still terrified me. They didn't come very often, again I think the routine of walking and trying to get off the crutches was helping me suppress them still. I thought I was winning but still they were there, waiting and building, just because I wouldn't acknowledge them didn't mean they had gone. Those friends kept trying though and every couple of days a message or email would come in and I would be pleased to see it, it meant that people outside my family were there and still cared, were there if I needed to talk even if it was just to say I was out and about walking. I also had my first contact with work about possibly returning, I had been off for 5 months and I knew the wages wouldn't keep coming in forever. I took the call and my boss said that he wanted to come and see me. I arranged to meet him in the café near to my kids school, I would take them up in the morning and then go straight there and we could have a coffee and a chat. He was stood outside as I got there and his face look confused as I approached, his first words were "well you look well, I didn't know what to expect and was scared of what you would look like!" Then and even now this rocks me a little, why do people always expect cancer patients to look a certain way? For the first 30 minutes of our meeting I had to explain to him what I treatments I had and why I didn't look as he expected me too. That felt pretty shit, in fact it felt proper shit. I felt like I was justifying my time off and why I looked well, apart from my crutches, there was no real change to my appearance and yet here I was having to what felt like explain why I had needed the time off. He then asked had I thought about my return and would I be ready soon? I wonder if I had looked as he expected if that question would have been asked? I said I had but I would not even think about it until after my surgery check up appointment, I was not coming back until I knew I was in remission and then I would discuss it. This was also the first time I really thought of my future life after cancer, I was a bit battered, a bit bruised but hopefully in a couple of weeks I would be told I was cancer free. I would then go back to the old routine of work and life. I thought that would be the easy part, I honestly thought that, I thought they would tell me I was cancer free I would celebrate and I would just go back to life and not worry about it again. How wrong I was. |
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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