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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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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