I'm sat on a train heading north and my mind is spinning, it's spinning all over the place about the above word. Support. I can't stop thinking about it, really I can't. All about needing it, wanting it, yes they are two different things, giving it and accepting it. I can honestly say that I now have been in all four categories and it's true it really is essential. I have struggled with the idea of support groups, I discussed that before in the blog, being in a room full of people who have had or still have cancer scared me, it scared me so much I couldn't face it, no way. I have also always been a private person, I talked about that before as well, I struggle to talk about my emotions to people unless I really trust them. Fear controls me with regards to my emotions and also if I tell someone something I can't take it back, they know it, so I have always been careful with who I told things to and what I told them.
That made it difficult for me with regards to support through my journey and I guess through my life. I am difficult to support because I am hard work, I know that I am, I would change it if I could but I can't. I find it difficult to trust and especially trust enough to open up fully, about anything really but definitely my emotions and feelings around cancer. I can clam up really quickly to, if I feel threatened or insecure I can revert back to type and hide away within myself and then it is even more difficult to open me up again. God, how messed up am I ??!! I have though now attended a support group and I have talked about sarcoma, life with cancer, my mental health issues surrounding cancer and the future. I never thought I would say that last sentence but I'm very pleased that I now can. For so long I struggled to open up, out of fear and nothing else, fear that people wouldn't understand or see why I felt that way and fear that I was the only one who felt like I did. I know now that I'm not the only one and that there are people who understand exactly how I feel because they have been in those places and have felt and thought exactly the same things, I most definitely am not alone. Don't get me wrong, I have had support through my journey I really have but I still felt alone, I felt that people couldn't understand why being NERD (I've learnt that is a much more positive way of describing myself than remission, remission suggests it will at some point come back, NERD or No Evidence of Recurring Disease means it's gone, just gone) is still difficult to accept at times. It is because there is and always will be a fear of a recurrence, I know what a feeling that something is wrong and if it needs Doctors and scans to check it's not a recurrence, well it feels horrible, absolutely horrible. You feel like you are losing all control again, that it is back and this time it's the big one, the one that's going to get you. I also know now that feeling angry at people who say "You just have to be positive" is also OK and I'm not the only one that it annoys! We can't just think it away with positive thoughts and sometimes it's OK to just be down about it, to just feel sad. This disease changes us for always, not just during treatment but for always and we do change as a person whether we want to or not. For me I lost some of my traits and gained new ones I didn't want, like anxiety, like a feeling of giving up, I'm still learning how to deal with them. I also now know that other people also think about cancer everyday, it's their first thought when they wake up, just like it is mine most mornings, and they know it will be that way for a long time to come. I guess that what I'm saying is that everyone who has cancer needs support, it is a fundamental need, you can't and definitely shouldn't go through it alone but there are times that you may not want it or may not accept it. I didn't wan tor accept it because I thought it better that I hid from it, that I should keep it all buried deep and if I asked for someone to support and talk to me I would not be able to suppress it and would have to face it and I didn't want to do that. I did need someone to be there but it had to be on my terms and at a level I could cope with. That is my difference between wanting and needing and I still don't want it all the time but yeah I do need it still! I talked today about giving support, in this chapter I mean just for cancer, I have given support to people all my adult life, that's just me, like I said I'm a loyal friend (and a proper pain in the arse if I don't like you!) but by giving support to Steve through his cancer journey and more recently a little support through messages to a couple of people who have had the same as I had, I have learnt that giving support is also a way of helping yourself. By being forced to face cancer and by telling them that things would be OK I learnt I had the strength to talk about it, I learnt that it could be worse, I learnt that being open and supporting others really can lighten the load by letting them know they are not alone either in their thoughts and feelings. Accepting support is the difficult one for me, it's the one I've struggled with the most because like I said I always needed it but I wanted it on my terms, it's that control thing I talked about a long way back in this blog, I only accepted support when I was ready to, when I felt that it was honest and sincere. See that's sometimes the problem with me, I wonder if people are sincere or even honest with me. I have met enough people who aren't that I tar everyone with the same brush so to speak and don't let people in enough even if they are being true. I imagine that it's just words, or just to make them feel better, or it's just the accepted norm to offer support and hope that it's not accepted. Those closest to me know this about me and accept it, that's why they are closest to me I guess, they know my foibles and faults and still love me but I do struggle with letting people in. Today, I met some people who I have accepted support from without hesitation and I am thankful I did and for meeting them. They have been down the rabbit hole of Sarcoma, as patients, as carers, as professionals and they know exactly how I feel. I am incredibly moved by their stories, their kindness and their strength and I feel like I have known them for a long time already. To be welcomed in such a way was something I had not felt in a long time and whilst it was difficult for me to talk, the way they listened, didn't judge me and allowed me to rattle on and on has shown me that I can accept support without it being on my terms and that it doesn't have to be on my terms if I am truly open. I learnt things from them all and have gained some strength from them at a time when I am struggling again. I am not great at the minute I accept that and I was pushing my support structure further and further away from me, it's what I do when I struggle, but maybe I can change that, I need to work at it but maybe I can. I do need support at the minute, I do want it too, maybe I should just accept it. That way I can move another step forward and see where this ride is going to take me next.
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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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