Control

I like being in control of my life. I am finding that when one has cancer, less and less of your life is in your own personal control. Clearly.

I have experienced this week, unfortunately, that I have little control over how my body reacts to my treatment. I can will all I want, but I cannot make my body respond. Clearly, I already knew this, but managing my dashed hopes is proving to be truly, truly painful. Clearly, I know I had no control over my diagnosis either, but that’s old news…

My need for personal autonomy goes further. I want it to be an imperative, but, sadly, I feel like I am losing it.

Since I was released from hospital and started my treatment, I have prided myself on my ability to look after myself and to make sure that My Myeloma does not define me (this is one self fulfilling prophecy I like). Since my discharge on 24 August, I have seen my body slowly improve to a state where, at times, I can trick myself into thinking that I do not have myeloma. I can cook my friends dinner, go to the pub or just be awake for 14 hours of the day. The trickery is more to do with others perceptions actually. Who am I kidding? I am constantly aware of My Myeloma and that is why, at this moment in time on a Saturday night, I am so scared. It feels different.

Not since the first cycle have I been so unable to look after myself as I have been today. As I write this it is 22:30hrs, I have probably been awake for a total of four hours all day. I do not have the energy to cook (though fortunately, I do have the energy to eat, which was not the case yesterday). My waking hours have been consumed by tears and pessimistic thoughts best saved for those who are fans of the movie ‘Love Story’. My cleanliness is questionable and that is all I am going to say on the matter, because at some point, if I get better, I would like to have sex again. I am also back to the situation where my body cannot decide whether it wants to release toxins from the bowel or mouth, and whether the release is going to be a hard or soft one. All I know is that I can feel it in my gut, back, throat and bottom. Again, somethings I should keep to myself, because one day I will get better and I’ll have to forget I have mentioned this.

Enough of the toilet humour… I feel like my body is regressing and I have no control over it. That or my body has decided to give up already. Clearly, I would have no control over that either.

I have no idea whether the emotion and sadness I feel is real or whether it is a result of my drugs. This is the first time since I started my treatment that I have probable cause to question my feelings. I bloody hope it is a chemical imbalance. I would find this more reassuring over the alternative. Either way, hard as I try, I do not have enough fight in me to reason.

The pain I feel at the moment – the nausea, the stomach cramp, the fatigue and the constipation – these are all known side effects of my treatment. I have not before experienced this in its current guise. I thought I had my side effects under control. If what I feel is indeed my side effects, they are controlling me. If it is not my side effects, then what is controlling me? I do not want to feel this way, be this weak or look this ugly.

When did I stop being the boss of my body?

I would absolutely love to give you a conclusion that eloquently and sensitively expresses how I feel like I have diminished control over my emotional and physically being, and this fact scares me more than words can describe, but unfortunately, something is telling me it is time for sleep again.

EJBx

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4 thoughts on “Control

  1. Lorna says:

    We attended the Myeloma UK Infoday in Birmingham yesterday. One of the speakers was a Clinical Nurse Specialist who said, when it comes to managing side effects, talk to your nurse. I suggest if you call your CNS first thing Monday morning.

    I do not know how it feels to have Myeloma, but I do know that the drugs screw your mind up. I had to sit and watch Mike have mood swings to rival the hulk. I remember one day early in his treatment he called his CNS and then sat there sobbing for over an hour while she talked to him.

    It will get better I promise. x

  2. I am so sorry you are going through this. Life doesn’t make any sense sometimes, but once you are through the treatment, things will look brighter.

  3. dear emma,

    what comes through from getting to know you through your blog, is that you have an enourmous capacity for empathy and compasssion, for getting to the core of your emotions, then using your ability to re-frame them from a tendancy to be overwhelmed by them to being able to break them down, to name them, then identify how they are affecting you. these are such essential skills – most people many years older simply do not have that!

    being able to write about what you are going through is such a therapuetic skill. keep doing it! i think much of what you are feeling is grief – grief for all the things that goddamned myeloma has stollen, along with the absence of any garauntee that you’ll get it all back! i once heard the term, “the work of grief”, along with another term (one of advise), “lean into your grief”. i think you have already pretty much mastered the work of grief – all the realizations of the losses you have suffered. perhaps being able to lean into the grieving is in the works as well – you feel it, you acknowlege it, you honor it as a process that is necessary to get yourself to a better place – one of hopefulness, albeit, at times, not always the immediate hopes you had before myeloma. but who knows, as you yoursefl posit – you may someday find you are able to hope and dream bigger than you ever imagined!

    my hope for you is that you are able to keep seeing YOURSELF through the eyes of empathy and compassion – for YOU, for all the pain, disappointment, uncertainty, anger, and fear that has resulted from your body betraying you. you have every reason to own and to write about all of it. and others who are reading your blog will find your words resonating with them, and they will not feel so alone. nor will they pity you. in fact, i imagine that by now you have become quite the herroine to many, being able to say things they were thinking, but could not articulate, and thus, have felt so relieved.

    and i so admire any person who is hurting and in need who raises their hand and asks for what they are wishing for, as you do; happy thoughts, messages of encouragement, and asks the question, “is it just me?” when you are in your darkest hours.

    over the last 3 years, both my husband and myself have been diagnosed with cancer – hugh, with myeloma in 2009, and me with ST IV metastatic breast cancer last december. after 2 stem cell transplants for hugh, and months and months of struggling to recover from them – then 9 months of treatment for me – we are both in remission. when we look back, the thing that helped us most was learning to live in the present as fully as possible. sometimes it was a simple thing, a day passed with no nausea, an evening was more special because the moon was shining so beautifully, or we could both eat and TASTE a bit of dinner together. we practiced the art of appreciation for every little thing, and did our due dilligence in saying good bye to our old life, knowing it would never be the same. it was hard, sad, and at times, had us knocked down into a heap on the floor, crying and gnashing our teeth. but gradually, we tackled what we had to do to get through it, accepted the help we needed, and realized we had a choice about how to feel about what happened to us – both having cancer at the SAME DAMN TIME! we learned to focus on what we CAN do, not what we can’t. control was a huge issue – one you may be grappling with these days. but you are wise beyond your years, emma, and i know you will find your way with that one.

    our lives, hugh’s and mine, are an open book now. if you have any questions, feel free to contact us, either through your blog or via he e-mail address below. meanwhile, please know that i hold you close to my heart, that i BELIEVE in you, and in your abilities to rise above ANY obstacles .

    much love and warm hugs to you,

    karen sutherland, TC

  4. Maureen says:

    Can you contact me on maureenfratini@yahoo.com.au. Just found your blog and have lots of questions! All this is just new to me!

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