So I was flicking through Twitter not really reading it but scanning and I saw a tweet talking about Xmas number 1 and at first thought it was another campaign to stop The X Factor claiming it again but then I saw the name and I watched it. It is this song, the one below... I can't lie, there were a couple of tears watching it and I hope the following words explain why. This is a kind of difficult time of year for me, it has been since 2013 and I don't think it will ever change and although the reason for that may seem daft it is for me unfortunately just there and won't change.
I find this time of year difficult because there always seems to be a lot of reflection for me, I look to my past, my present and my future. Armistice day and Remembrance Sunday takes me back to my life in the Army and to my friends who are no longer here, I go back to the laughter and jokes, the good times and the bad ones, the memories are still as vivid as the day we made them. It was also this time in 2013 that I broke, when I couldn't take my thoughts anymore, when I lost myself and had to admit that, not just to myself but to others, and going back there can turn my thoughts dark again. It is also my birthday, and I think we all look at ourselves and our lives on that day, I turned 42 yesterday and the same thought I had last year and the year before and the year before that was back as I looked at my cards over a coffee. "What if this is my last birthday?" I don't know why and I know that I shouldn't have that worry, I'm "lucky", I'm NED, I'm heading to 6 month checks and there is no reason other than statistics to make me worry but I do. Its there and that leads me on to those tears because I have recently spoken with and heard the stories of others not in the same place as me. I have heard and read the words of them and the people who love them and as always their strength, dignity and love is inspirational. I am not in there situation and can never expect to understand how they feel I can only imagine, I hope I never know, I hope that those who love me never know it either but if they do the chances are a Hospice will be involved. I have only been in an Hospice once, to visit someone just before their fight ended, the part of this journey I can't allow myself to think or dwell on, that is embarrassing to admit because again I see the strength of the people who have to and I don't think I could be the same, not knowing what I know now about how I've coped so far. There is a moment in this video, a nurse sprays perfume onto a lady, she has I guess asked for it and I guess it makes her feel herself, normal, just for a second and I think that is such a touching moment but also a reminder that this is real and happening to real people, mothers, fathers, brothers, sisters, husbands, wives, real people, real families and it reminds me how much I hate this fucking disease. From the moment Sarcoma, cancer, entered our lives our normal changed, it will never be the same again, our thoughts our hopes our dreams changed. Yes some of our hopes and dreams remain the same but I'm sure like mine some have changed beyond all recognition. I had to learn to accept that new normal, I wasn't exactly the same, I never would be but some things didn't change. I still love music, I still want more tattoos, I still want to visit Hawaii, I am still me. That is what I see in the lady with the perfume, I guess that is part of her from before, the person she was and still is, maybe that is the thing her loved ones think of when they think of her or what they will remember in the future. I may be wrong of course but I hope that no matter what happens in my future there are little things about me that bring a smile to the faces of those closest to me. I wish none of us had to see this new normal, that nobody ever had to support a loved one as they face it, I especially wish that those conversations I haven't had to have would never have to be had again. I wish we could beat this disease once and for all, for all of us, but unfortunately at the minute we can't so all I can do is wish as much love, happiness and peace as you can have no matter where you are right now on your journey. I am lucky, my worry has come and gone ( well not completely yet...) this weekend, others are not that lucky so if you can I guess maybe we should try and get this to the Christmas number one spot, let's raise some money so people can continue to be who they are, let's raise some awareness and get people talking about the part of cancer that doesn't make the adverts, their twitter page @ChoirLondon tells you how.
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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. |
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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