The Good Fight

A wise person once said to me that it would take time to recover after my transplant, both physically and emotionally. The person who said this is far more pragmatic and sensible than I, and added that I may feel different after my stem cells had returned to my body. Clearly, this was a conversation that was had before my transplant. Clearly, she was correct. I do feel different and I am not talking about my back.

A transplant is a transplant is a transplant. Most of the physical side effects can be predicted and there is a desired outcome. The Medically Trained People expect certain things to happen, I know that because they told me roughly what was going to happen at various stages along the way. Repeatedly. In addition to that, I read literature from various charities and collected anecdotes from people whether I wanted them or not. The emotional toll of what was going to happen was rarely discussed.

I was excited about my transplant because it signalled a possible end, but now, in limbo land, I feel empty. I’ve been running so fast for a year, working towards something, and now, I have done everything I need to do, all I have is waiting. It is an ever so subtle difference, that at times, I feel only I get. I remember many months ago, somebody who had a transplant telling me about their post-transplant depression, and I did not understand why they would be depressed. Everybody’s cancer is their own and I understand it now.

I have spent seven weeks beating myself up about this. I am stoic. I have reached this point in my journey with my head mostly held high and my glass half full. I am supposed to be a motivator. I am supposed to smile and let everybody looking at me know I am okay. I should not feel like this. This, by the way, encompasses a lot and with this, I feel like I am stuck on repeat. So, do yourself a favour and stop reading now or grab a tissue. It is uncouth to blow your nose on your top; I am learning that daily.

In the first few days in hospital, when I was still excreting fluids from my bum hole on the hour, I felt like I had lost my ability to reason and to problem solve. Now, with the weeks gone by, I know I have. Simple things feel difficult and by simple, I mean simple. Deciding what to have for dinner is no walk in the park, it is a headache. So imagine how I feel when it came to organising getting a new bed and wardrobe (I haven’t done it) and deciding what day I was going to return to London. Do not even get me started on my financial issues. I feel like Podd.

I have also discovered that my lack of reason, almost always means that I cannot stop myself from blurting out my thoughts and feelings. I do not need to paint a picture of this, for I sound like a whining arse wipe (which makes me feel worse by the way), but I am going to ram it down your throats anyway… If I feel sad, upset or angry, I am going to let it out. All my sense tells me not to, but I cannot stop myself, especially if we are close. As Mamma Jones explained to me yesterday, not everybody is her or Big Sister, and are programmed to take it. Last Sunday, in the middle of my worst breakdown yet, I believe I said that my life might nothing, none of my friends cared about me and I wanted to die, which led Big Sister to tell me to ‘get a grip’. I thought that was mean. That is how I felt in that moment. My response was something along the lines of saying that people do not understand what is going on inside my head. If I were reading this about somebody else, I would tell me to get a grip too. It does not feel up to me. Let us not forget that I am also going through the menopause, albeit real or fake.

Don’t get me wrong, sometimes, I am still a hoot, but my wit seems to be fighting an uphill battle for attention.

My excitement pre transplant, evidently, has diminished, it is not completely gone, I am a fighter after all, but it has gone right down there with my bank balance. Others are excited about the future and I get pep talks about how things will improve. The truth is with the transplant is that sort of talk and expectation, that talk about the improvements to come, anger me now and make me feel frustrated. Especially when the pom-poms are coming from secondary experience. Personally, I can barely think, let alone talk about what is going to happen to me in October, November, December, or how much I want to get back to normal, or what getting back to normal means to me, without crying. I cannot finish those sentences. That is no exaggeration.

On a number of occasions since I came out of hospital, people have asked me those very questions (what happens next, what are you planning, do you know when you will return to work, blah, blah, spew) and told me what I have to look forward to and every time, unless it is me instigating it, I feel like somebody has stabbed me in the stomach and then stuck their thumb in the wound they created. The thumb makes me cry. My voice breaks, and I have to use all my might to suck the tears back up again. In the last year, I have become very good at this, sucking the tears back up again, but in my world post transplant, it is much, much harder to do. The tears just come or I sound like a man. On one particular occasion, I was on the phone to a senior work person, but fortunately, the senior work person was oblivious to what was going on on the other end of the phone. Sometimes, there are reasons to be thankful for the temperamental mobile phone coverage in the fens. It was my favourite instance, because I would never, ever allow somebody of their kind, to witness that type of weakness.

The future everybody talks about so eagerly, scares me. I do not want to upset them. On the few times I have felt strong enough to let that excitement in, I plan in my head. I plan meals, cinema, theatre and holidays and I come across other hurdles and disappointment. I am not clear if they are actual hurdles, but my lack of reason makes mountains out of molehills. It is a prison. When my post transplant world comes, when I am in it because right now is not the world I envisaged, I want trumpets, bunting and kept promises. Right now, I just want support, understanding and reassurance.

I know that my up current struggles are not helped by my isolation. Since I was discharged from hospital, prior to Sunday afternoon when I attended a two year old’s birthday party, I had conversations in person or on the phone with just twelve adults, about half of these were not myeloma related. It would be fair to say that whilst I was in hospital, much of my conversations we also myeloma related, nearly all of them in fact. My transplant seems to have defined me more than my other treatment to date. I am more than my transplant and My Myeloma, and I deserve to be spoken to as such, otherwise, I end up having the same conversation again and again, just with different people. In terms of contact, what I mean is text message. Rightly or wrongly, I feel let down.

Based on all this, in terms of the effect on me, all I can say is, do the maths. It’s Key Stage 3 sort of stuff. If you cannot do the maths, see the bite size example below:

Isolation + boredom = insecurity + paranoia = tears + sadness

☔☔☔☔☔☔☔☔☔☔☔

I am not embellishing anything or seeking your pity. I want understanding. The thoughts I mention really have gone around and around my head and I have been taking this trip for weeks. Not every day mind, I do get the occasional rest day. In the last three weeks I have made several attempts to write this blog. I have questioned what has happened to me, what is happening to me and my future. I have played out the various scenarios in my head. I have been up and I have been down. There is however, only one time I have been absolutely certain. Somebody, who was recently diagnosed with the wonder that is myeloma commented on my blog and said they did not think they would take the medication to treat not cure it. The comments saddened me, but they also made me realise something about me, that in spite of everything I have said above and all the other side effects, I would never not fight this. Even if I am have no money, my support network get sick of me, I cannot shift the weight and I remain bald forever, I would continue fighting. The realisation was a relief, because on the dark times, I thought I had lost sight of it.

This period, is just part of the battle after all?

Anyway, I can still laugh at farts and stuff so I am bound to be okay.

EJB x

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3 thoughts on “The Good Fight

  1. Terri J says:

    The emotional part of this Myeloma thing is overwhelming. I think you are still grieving that even though the transplant is over & each day is better than the last your life will never be what it was before diagnoses. Physically , materially & things may return to what it was before but you are not the same person. The sparkle in your eye has been dimmed.
    Someone told my daughter that she is obsessed with the results of bloodwork & bone marrow tests. I would have punched that person in the face if I was there. When it is a matter of life & death you do become obsessed. You both are no longer the young carefree things you use to be. That’s what I grieve for in Sara, you both have learned your not invincible.
    Two very strong women who will keep up the fight.

  2. What Terri J says is indeed part of the journey you and her daughter are on, Emma. And also, having been through menopause (a strange name for the cessation of something that represents being womanly), the emotional mood swings and inability to think were almost a devastation to me. As a creative, pondering person, I felt disconnected from the Me I thought I was. Would “I” ever return, I wondered in frustration. Eventually either “I” emerged from it, or a new “I” was forged for the future. IN any case, it was almost three years of feeling stupid or crazy or both, and my marriage suffered so on the other side I was divorced. You might want to feel grateful, on my behalf (LOL!), that you are not dealing with another person intimately who wants you to be “your old self” again.

    So I cheer your spirit that wants to fight and will be here listening and supporting you as you slowly recover and discover the essential ‘you’. By the way, your writing has not suffered from the ‘chemo’ brain and menopause, and I think you have an amazing talent. That way lies a resource for income, methinks.

  3. Justine says:

    Dear Miss Bones,

    I left my idylic country life as a sole parent & moved back to the city with my two babies & little boy. I share a house with my sister that didn’t talk to me for two years & her high-maintenance older kids.
    I started treatment.
    I was unpleasantly surprised with severe nerve damage in my right arm that has stopped me driving, caring for my babies, writing, drawing & wiping my own bum. I only leave the house to go to chemo.
    My family are in denial, my friends are fabulous & my kids are mighty confused at why mummy can’t hug them anymore. None of this compares to what others are suffering through, I know that.
    I don’t even focus or care about the cancer treatment, I just want to be a mother again, pick them up, rock them to sleep etc. I have had to give legal guardianship over to my family for them. It’s slowly wearing me down seeing my children raised by others in front of me & I have no control over them anymore. And damn it, I know I’m supposed to be grateful & repeatedly thank my family over & over again for accepting my children when they can’t stand me, I’m so lucky right?
    It’s not the fear of cancer that makes me want to bow out early, its ceasing to be the person I was….I’m already turning into one of those depressed, angry people & I hate it. My friends have told me I’ve changed so much in only 7 weeks since diagnosis, they miss the old me.
    Hell, I miss the old me…..because quite frankly, this new me is a bit of a pain!
    But….I have started treatment….I am trying to get myself ready for the transplant.

    And I still think farts are hilarious.

    Best wishes & all that mushy stuff from Miss Low Pain Threshold Australia xx

    P.S….I agree with Sandy Banks about your writing skills, you are quite brilliant.

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