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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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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