This is a photo of me and two of my oldest friends, I have known them for 30 years and when we were teenagers we were inseparable, we were always around each others houses, or out together and even going on holidays with each others families. Then at 18 I left Plymouth to join the army and whilst we still all saw each other when I came home, in the end I stopped coming home as much as my life was developing away from Plymouth and I didn't feel the pull of returning like I had when I was younger. As a consequence of that we grew apart and lost touch as our lives took us all in different directions.
I had tried to find them on social media over the years but had never been successful and then a chance encounter at a corporate event with another old friend enabled us to make contact again. We linked and started liking each others posts and chatting a bit but at the end of last year we finally managed to all catch up and sit down for a beer and a chat together. The years rolled back and we talked like we always had and laughed, we laughed a lot. After I had started this blog I started to look at where life had taken me, where I was headed and last year I also started to get quite nostalgic. I had started to wonder more about those old friends, I thought back to "the old days" and it generally made me smile! I really did want to meet up with those old friends again, not just Adam and Ian, the others, the ones who had seen me on social media and had sent me requests or had accepted mine but I never seemed able to get to meet or a have a coffee with them, I was always too busy or needed to be somewhere else. That's what I told myself but there was also another reason, just a small one, but it was a reason that was eating at me. The people who were around me now knew about my illness, I had spoken with them about it, it was almost in the past for them so we didn't speak about it anymore really. When I met up with people who hadn't seen me in a long time they would ask me about it, I was sure they would, of course they would, they had known I had been ill with sarcoma but we had never talked about it and if I met them the chances were I would have to talk about it again. I know I was talking about it on here and that I had faced my darkest times in writing and survived them, I had spoken publicly and also at support groups but for some reason having to speak to people who knew me and who would want to know all about it was eating away at me. I wasn't sure I was going to be happy talking about it with them as I was I didn't want to open that can of worms again around those that knew me. I know that sounds strange, stupid even but when I talk on here there is still a sense of distance, a sense of invisibility, and I could delete it if I wanted to. When I speak at a group I can choose not to go back, I won't do that the two I have been to have been full of wonderful people but I could choose to do that if I wanted to. As for speaking publicly, I may never see those people again, in fact most of them I know I won't so that doesn't matter either but talking to those who may not have seen me for a long time, those who do actually know me and that I will definitely see again made me nervous. What if I closed up? What if I broke down? What would they think of me? I was as always running late this night, I phoned Ian said I would be there shortly and he told me Adam was going to be there. I had seen Ian before, Ian had come to my talk on Sarcoma and as such we had talked a bit but not much, he had listened to my story but hadn't really asked me any questions and we hadn't talked about how it had changed me since. I hadn't spoken to Adam in over 20 years so I was chuffed he was coming but at the same time I knew that the cancer thing would come up and I was unsure of what I would be like, a year ago I would of used my stock answers, my escape answers and then moved the conversation on quickly. I was getting better now and I suppose this would be a test for myself, a way to gauge if I really was improving, if I really now could talk about it. We hugged, we smiled, we ordered beers and sat down to talk and talk we did! We talked about the old days, old music, old adventures, old girlfriends and we laughed, we really laughed. It was like we were kids again, enjoying each others company and laughing about stupid things. The elephant in the room arrived as an innocuous comment, as a question, just a throw away one. "So, everything is ok with the leg then?" and there it was, the can was open and I had no way to avoid it. "yeah I'm 29 months NED now, still a bit sore at times and feels numb but it's good. I can't run for shit but I'll take that.." and a smile, I actually smiled. I hadn't used a stock answer I had just answered and even made a small joke. The questions then came thick and fast, the standard where, when, how, what happened next ones, the ones we all get asked and to my shock I found that I could talk about it, I answered all the questions without dwelling on the answers or a feeling of panic building. It actually felt good. I was talking and it felt good to talk, more importantly it felt easy to talk. If you have been back to the start of this blog you will know how big a step that is for me to have taken. I found I can talk about my experience openly. Not just in a therapy room, or to Nicola, or in the safety of a sarcoma group, or with the anonymity of a blog page, or just to the ones at the very centre of my world, I could talk about it openly and easily. It wasn't me who achieved that though, it was all those people above, they made it possible with their kindness, patience and love, that's how they got me to that point. When I felt like I couldn't talk they understood and waited for me, when I started and got upset they calmed me, when I just wanted to cry they comforted me and gave me strength to go again. They helped me talk, they helped me open up, they helped me start this blog and they still listen to me now when I go off the rails. That's important because I know I will fall again, I know because a reminder for my next scan pinged up today and I felt the pangs of scanxiety. I beat them down quickly, I used mindfulness and CBT as I always do and it worked, let's hope it's still working the night before! This has also made me think of those who are on the periphery of our diagnosis, the ones who love us, the ones who care and support us. I don't really know how that feels and I think that is a chapter in itself but I do know they get frustrated with us at times, Christ we get frustrated with us at times! I say this because I've been told how frustrating I am and also because I saw a comment on a social media site the other day and it was upsetting for me. Please if you are a carer this isn't a pop at you I can't imagine how it must feel to watch someone you love deeply go through this disease it's just something I saw. It was a discussion about living life to the full and someone said "I wish my partner would be like this but he just won't" I'm paraphrasing but that was the essence of the comment. I wanted to say, please just have a little more patience and faith in him, he is obviously battling and he will want to be that way more than anything but not everyone gets there straight away, some of us need time. It took me 2 years, after being declared NED, it's not always that easy. I didn't comment because I didn't want it to appear that I was "having a go" or worse make them feel bad for what they said. They are obviously frustrated and probably scared themselves and I get that. I guess what I'm trying to say is that if you are a carer please don't take this as an attack and if the person you love is struggling just give them a little time, don't berate them and don't compare them to such and such who is so positive and doing so well because they are probably doing that to themselves. Doing that to yourself hurts, believe me it hurts a lot. Just be there, just wait and when they start to talk keep them going because that's going to be a massive step for them and it's a step that they must take, it's essential they do. Since I met Adam and Ian I've met a few more old friends and I've loved it, I really have. We have talked about the past and the future and I remembered why each and every one of these people were in my life. We have talked cancer as well, we talked sarcoma and each time I have been able to talk comfortably and honestly. No one has given me the head tilt stay strong, they have just chatted and that's helped even more. What I'm trying to say I guess is that I'm finding every time the can gets opened the easier it is to talk, the less scary the contents of the can are and more and more I feel positive about where I am from where I was.
2 Comments
Darren Evans
23/1/2016 08:39:56 pm
Hi Tom, Thanks I thought your blog was great and have linked it on my page. Thank you for linking mine as well.
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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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