So the waiting game started......I sat and waited for the phone calls, one to arrange my pre-op assessment and one from Nicola with my chest x-ray results. I had never heard of metastasis before, mets I call them now, that's the in the know name, and I know exactly what they are. They are what I was waiting for news on and I knew if the cancer had spread the mets would probably be on my chest. The chest x-ray would show them and then this was serious, really serious.
I dropped the kids at school, I avoided everyone, all the parents I considered friends, they knew I was waiting for results and they knew I was in on Monday to get them. I didn't want to be playground gossip and I didn't want everyone knowing in case it got back to the kids, I would have to tell some people yes, but I would choose who and I had to tell my family first. My mum would be first, then I would tell my extended family. I discussed telling my Dad with Emma, we hadn't spoken in a couple of years and I didn't want to tell him. I didn't suddenly want him in my life because I was ill, he was the most negative person I knew and that mixed with guilt, if he had any, was not going to help me now. That call was never made. I called my mum, I knew that her dad had his leg amputated fairly young and he had died before I was born, hence my middle name. I recently found out my granddad lost his leg because he had a tumour in his right thigh, he then fought for 20 years before cancer finally won, it was those bloody mets again! I apparently look and act just like him, maybe we are more alike than anyone would know! My mum bless her was no use at all, the tears started and wouldn't stop. I told her I would talk to her later I had to call other people If I'm honest I didn't want any negativity near me, I didn't want to hear it. She still to this day does not say I had cancer, she won't say the word and my name in the same sentence. She winces if I mention it and yet has all my appointments and check ups on her calendar. Just so she knows she says. Next it was work, my boss was already aware of what I was being tested for. It was another call to make, another time to say "I've got cancer", I didn't want to keep saying it, if I didn't say it again maybe it wouldn't be true. Who was I kidding, it was true. I phoned Andy and told him, "I won't be in for a bit, it's cancer and I need to get my head right, I'll clear the important emails but I'm not speaking to anyone. After that I'll call you when I can." He was great, "no worries, leave it all, I'll deal with it. Take as much time as you need, phone me when you want, do you want me to tell everyone?". "You may as well, but please ask them not to call at the minute, I'm not up to people and sympathy just yet" and with that I was off work. That had gotten me to lunchtime, but there had been no call from the hospital. Why the delay? Someone was going to call me today, why hadn't they called me? What was wrong? It must be bad news, why hadn't they called? Can they tell me the results over the phone, why hadn't they called? Yes, you can see the pattern, why hadn't they called became the mantra of the day. I asked my wife that question about 100 times, 1000 times even, the longer the wait went on the further into panic I descended, further and further down. This was a path I was to learn well over the next couple of weeks, panic became a problem, a real problem. My problem was control, I liked control and now I had none. I had never really been in this situation before and that's where the panic came from, I know this now, but at the time the panic clouded my thoughts, my actions, everything. I had been given some leaflets and letters when I left the hospital the day before, I remembered Nicola's telephone number was in there, "I'll phone her, see what she says." This was my first introduction to dedicated Sarcoma services within the NHS. I didn't know that Nicola also covered another hospital and was not just the sarcoma nurse specialist, she also had another type to look after. She must have wondered what was on her answer phone when she picked it up. Calls, lots and lots of calls, each more desperate than the last, each more breathless, each with more panic than the previous. The last one was left at 4.55pm, I was pleading, begging for my results. I had worked myself into a frenzy, they had told me they would call me today, why won't they call me, they have to call me, they told me they would call me, I'm going up there, they have finished for the day, they told me they would call me! I don't know how I got threw the night, at times I was physically sick with panic and at times I was shaking with the adrenalin I was producing as my heart raced. The physical symptoms were nothing compared to the mental pain I was in. I needed to know, I thought I could deal with it if I knew, I knew I could deal with it if I knew. From conversations since with other patients and survivors I'm not alone with how I dealt with this, we have all had the initial shock of being diagnosed and we have all had "the waiting game." The waiting game is what I call it, it's the wait to see if it's treatable or it's not, the critical part of the diagnosis, the business end, and the bit where you know what you have to do. There are some who can't do anything but fight and hope for a miracle, I have a friend like that. He has taken it, dealt with it the best he could and as I write this has a matter of days left. He has continued to fight for every minute of life he could, 6 - 8 weeks has become nearly 3 years. I said my goodbye weeks ago and will always remember the last boys night out, a dodgy 2 piece rock band singing covers in a village pub. Laughter, beer, hugs, beer, memories, beer, well you get the gist. What I'm saying really is that night sat alone in a dark front room with shit TV on, I was desperate to know where I was going to start from, if I could fight I would, with every ounce of my being, but I needed to know. After another night of bad TV and no sleep, I was out of bed at 5 and I started on the phone at 8.30, the last time I saw Nicola she always uses these 2 days as my bench mark, she remembers the panicked begging voice on her answerphone and says "look how far you have come". But that morning I was still at the start and I was a mess. I hid away from the kids until they left for school that morning, I just couldn't do it, they would know something was wrong they only had to look at me to see that. By 1130 I had left more messages and heard nothing, then the home phone rang. For someone who had desperately wanted it to ring for two days I couldn't pick it up. I let it ring again, and again and then it was in my hand "hello?" "Hi Darren, it's the pre op assessment team office, we need to book you in for an assessment, I see your surgery is next Wednesday, can you come in tomorrow?" I lost myself, "it wasn't the results, f**k, why isn't it the results?" I agreed to come in at the time and then said "Do you have my file, do you know my results of my chest x-ray?" They couldn't tell me, it wasn't them that would tell me that it was my nurse or consultant. I begged and as I begged I walked up and down the hallway, my wife and mother in law were watching me from the kitchen, eyes and ears on stalks, trying to pick up the conversation form my words and actions. I begged again and they relented, now I don't know if they were allowed to and if I knew their name I wouldn't use it in case they got in trouble but that person was truly wonderful to me, "Ok Darren let me look, right this will need to come from your doctor or nurse but let me read your file, ..........no sign of secondary metastasis", "no, really, no" I had collapsed, I can still feel my knees hit the floor and the tears on my cheeks. I'm not embarrassed I'm crying again now as I write this, "no, you're sure, no?" My wife ran up the hall screaming "what is it? what is it?". Through sobs "no secondary mets, no secondary mets...", it may have started the fight but I had now thrown my first punch.
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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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