Blogging

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.

*******

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.

*******

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?

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5 thoughts on “Blogging

  1. Terri J says:

    As the mother of a 32 year old single young woman who was diagnosed with Myeloma in 2912 you have brought up many questions that I have thought . I have seen some people edge themselves away from her. I have seen people worry about minor things . I have seen people ask stupid questions. My angel of a daughter says”Mom they don’t know how to deal with it.” I want to shout at them that she is the one dealing not them. As her mother I shout at God & how could he let this happen to someone so sweet , kind & always thinking of others. I want to take this burden on myself & let her go back to what was normal. I don’t want a “new Normal” for her.

    • ejbones says:

      Terri, I am sorry to hear about your daughter. I too was diagnosed in 2012. Personally, my Mum might have a different view, but I know I have to accept my new normal. I cannot erase what is happening to me, I could waste too much of my energy willing it to go away or for this to have not happened to me, but it has. It is happening. My new normal, I imagine will be the same as before, with extra rest and an awareness, or a better awareness that life is precious. As awful as the situation is, it could be a whole lot worse, I could be in the situation where I do not have the opportunity to have a new normal or to move on. This could be it. This is the only way for me to see it. I acknowledge and move on. If I dwelled too much on what once was, before myeloma, I’d get nowhere. I would not have got to here.

  2. Deborah says:

    Dear Emma

    It was your blog that inspired me to write my own and your tips that have helped me on my PADIMAC journey. Like you I feared a change in identity but it has happened I cannot turn the clocks back. So I see it as an opportunity to re- invent myself. We really don’t live so far away from each other and although I am much older than you in my head, I still at least think I am 30 and that they must have been some terrible mistake on my birth certificate. I would honour your friendship not just because you are a fellow MM sufferer but because I admire your witt, writing style, honesty and humour. I am organising a big fundraising party for the Summer ( which of course you are invited to) that is turning in to a bit of a music festival but I could do with some tips and ideas if your up for it. We have a little home in the countryside surrounded by barns and fields only a short hop (30 mins) from Kings Cross. If you fancy a change of scene perhaps we could meet up at UCLH for a chat sometime or you are most welcome to pop over or stay anytime. I’ve said it now and no offence will be taken of you choose to completely ignore any of this. I don’t want MM, I suppose that’s obvious, I am not happy my hair is falling out even though the wig I tried on today was quite over the top and funky. The novelty is wearing off but I carry on in my Pollyanerish way for who, sometimes I wonder?

    Wow thanks Emma that was cathartic for me too.

    Take care

    Deborah

    Mymyelomajourney.wordpress.com

    deborah.bone@mac.com

  3. Sharpy Sharpster says:

    Emma, I really do admire anyone who commits to blogging in the way that you do and I have very much enjoyed all your posts, some of which have had me really chuckling and some that have had me nodding in full recognition. Personally, I couldn’t do it. I thought about it in the early days of my diagnosis. In my head, my blog would be full of witty repartee about the minutiae in the life of a cancer sufferer, as well as the big, bad shit. The reality however, would be writers block and the mindset of Miss Hawkins from Bernice Rubens’ ‘A five year sentence’. I struggle even to keep a diary to remind me of hospital appointments and boring stuff and end up turning out my pockets and tipping out bags for various appointment cards around the time I think they’re due. For example, I know my second year ‘cancerversary’ is coming up, but I can’t find my old diary from 2011 to locate the exact page, where I had written matter of factly ’11am – Renal – Clinic B’ and subsequently, after copious amounts of wine (having been urged by my nephrologist to go home and ‘have a stiff drink’) simply added ‘bad news’. Doh! If only I’d kept a blog! Still, if I can’t remember then I can avoid the question of how to celebrate a cancerversary (likely answer – ‘with copious amounts of wine’).

    Your thoughts on how friends have reacted to your myeloma are interesting. I know my husband was upset and disappointed in what he saw was a distinct lack of support from a number of his close friends after the initial messages of commiserations. However, the reality is that most of them have young families and have their own lives to lead. I have often thought to myself ‘how would I have reacted if so-and-so had told me they had myeloma?’ In moments of complete honesty, I am uncomfortable with the answer I am forced to give in respect of some of those friends and acquaintances who, quite unexpectedly, went above and beyond. These days, most of my friends barely mention my illness and I enjoy the feelings of normality this gives me. However, I think that many of them also believe everything is okay now. Unfortunately, they will find out otherwise and probably sooner, rather than later. Until then, I’m happy to play along with it all.

    Best wishes x

  4. Emma, if you think about your blog as a place where people can come and realize that their situation is similar, or where friends who are too scared to ask the questions can find out what’s happening, or where your supporters can find out what they can do to help, then I think you are achieving your objectives… and a place to rant, of course. Necessary. You have given me courage to be bolder on my blog. Thanks.

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