Way back when, when I decided to write this blog I had two reasons. The first and the main one was to keep my loved ones informed of my progress as I went through my treatment, thus reducing the number of personal appearances of the Cancer Roadshow. The second, was to give me an opportunity to organise my thoughts and process what was happening to me. Overtime, a third reason came along, and that was to tell others who I do not know about my experience of having myeloma and how, as a single 28 year old with her life ahead of her, I cope with this life changing disease. I am all about cancer awareness. The latter point became my soul focus for a while. Professional Cancer Patient. That’s me. I blame the never ending vat of wit.
The act of writing a blog and publicising your feelings is strange. I have opened up my world and my brain to a host of people who do not know me and I have opened up to those that do, more than I would have ever done before I had myeloma. People offer me advice and I find it difficult to take it because just as I have said My Myeloma is my own, so too is my life. I want to give something with my blog, but rarely do I want to take anything back. I am fiercely dogmatic and there is not much that can be done about that. I truly mean no offence when I say this, it is just the way I am.
These days, the first and third reasons why I do this are still relevant, but the main reason I write my blog is to maintain my mental health. I am ever the pragmatist and writing this protects me. Unwittingly, it has become part of my treatment. My blog, EJ Bones, is cathartic. It allows me to acknowledge the bad thoughts and then throw them away into cyberspace. I cannot function with this, My Myeloma, if I hold onto every single negative thought. I need to release them, and as somebody who is emotionally retarded, this is the easiest way.
Well, it was the easiest way when the things that were tormenting me were directly related to my treatment. I am so aware now of what myeloma is and what to expect, that there is nothing new there for me to dwell on. Sure, I still dwell on the fact that this is happening and the fact that I may not have babies, but this is not new and I have my own tools to deal with this. What is new, and what is pressing, as I have discovered during my limbo, is the things about me that have changed because of My Myeloma. My personality and my relationships. These thoughts are difficult to vocalise to anybody, in person or on a blog, because ultimately, they do not just effect me. They relate to the people who are in my life and over the last month I have found myself in a quandary. Do I continue to write about my problems as openly as I have done, knowing that the negative thoughts in my mind may upset those I love, or do I hold it in? Some would say that this is what my counselling is for, but it is not frequent enough. I am also, surprisingly, independent. I find this blog to be a way for me to cling onto to parts of my independence, when I now need assistance with so many other things to get by. When I am upset, I want to deal with it in a day, two days tops. If I do not manage it quickly, it will manifest and grow, much like, I imagine, a tumour would. My thoughts can be toxic and the sooner they are discarded the better it is for me and consequently, better it is for those around me.
I am conscious of those in my Support Network. I have mentioned individuals in my support network on here before, I frequently do, but rarely do I use their names, because it is my decision to write this blog and it is not fair for me to offer them up for critique, like I do myself.
This is a dilemma. I have tried not writing it down and holding on to it, but this does not work. It pushes me to breaking point. I have tried to share it with other people in my network and this does not work either, for those select few have to deal with copious amounts of tears and snot, accompanied by a pinch of hysteria. It doesn’t work. In order for me to stay my stoic best, I need to process and mange my thoughts on here regardless of the consequences. My blog is my mental rubbish bin. I am too far into my journey to find a new way.
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So then, getting ready for my release. And I do not mean farting…
I am afraid. I am afraid that I will resent the reaction to My Myeloma by some of my friends and family far longer than I will experience this incarnation of My Myeloma. I am afraid that for the minority who I feel have neglected me or not fully grasped the reality of what has happened to me, that our friendships will forever be tainted. We will still be friends, but I will always remember that they were not there for me when I needed them. I fear that I will remember this, for much longer than I will remember those from the expected and unexpected quarters who have shown me such overwhelming support that I feel sick with pride that those people are my friends. I am afraid that I will not be able to forgive my friends who have made flippant comments in my presence, that have hurt me, regardless of whether they were directed at me. I am afraid that I will always be jealous of my friends for living a life that I cannot live. I am afraid that I will alway resent those whose problems in life, that are no where near the realm of thinking about the high probability of premature death, of those whose problems are cosmetic. I am afraid that I will always think that a person asking repeated questions about my treatment, or forgetting about my treatment, is a sign that they do not care. I am afraid that I will never be the same, that I am losing my empathy towards others. I am afraid that because My Myeloma is the leading man in my life that I am becoming dull and irrelevant. I fear that my want for normality and need for compassion do not marry and that this will drive people away. I am afraid that at times, I feel both suffocated and lonely and again, my reaction to this will push those I am clinging onto further away.
Most of all, I am afraid that things will never be the same. I know that they won’t be. I am dealing with that, but the reality of it means that I may leave people behind or they will leave me behind. I can feel one or two friendship slowly ebb away already and this scares me.
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And now, I can breathe.
EJB x
P.S. Before some of you in The Network panic. I really do feel fine; this is cathartic remember?
