Tag Archives: medically trained people

I Give It A Year

Have you ever been to a wedding and attached an expiry date to the happy nuptials? If I had done this in my past, I would have almost always been wrong. Being wrong takes the guilt away from having the thoughts in the first place. Just over 11 months ago, I attached a multiple timescales to something that was not a wedding. The successful relationship between myeloma and my stem cell transplant, had me predicting the length of the union many times over. At my most positive, it would last so long that divorce was a fuzzy dot somewhere in my future. My worst nightmare was that it would not work, closely followed by it failing within a year of my transplant. My transplant was on 17 July 2013, and I have relapsed. There is no happy anniversary for me, just a fuzzy dot somewhere in my future where I may once again be as happy as I was a fortnight ago.

I am not ready for this yet. Last Thursday, when I was told that my paraprotein may have gone up, my overriding thought and one that I shared, was that I was not ready for it to come back yet. On Monday, when I received a phone call telling me that not only was my previous test correct in it’s finding of a measurable paraprotein, it had risen again to 20, I knew then that I still was not ready.

I feel like I put my life on hold. From August 2012 to November 2013, my life was on hold. I had a hold on my existence, to ensure that I did not burst. After November, when the wondrous ‘remission’ word was spoken , things did not return to my new normal overnight. It was hard, much harder than I thought or dreamed it to be. I had to teach myself how to exist in the real world all over again, with myeloma as my sidekick. I still had not perfected it, but from March, I would say that I finally started to enjoy trying to. I was in my infancy. I am not ready to let go of that yet. I have more to do and I have more to give. I cannot do these things when I am chowing down dexamethasone and having to treat shitting like an event again. One cannot seize the day when they are so heavily constipated that they vomit and soak their t-shirt in sweat that smells like oranges and onions.

I was two Velcade injections away from relative freedom, and even though I feared jinxing things, I was planning things. I was not just looking a month ahead. Hell, I have plans for October. October you gasp, positively crazy talk. Clearly. Closer than that, I had booked myself onto a weekly film course because I was able to retain more information than I have for a long time, I had more energy and most importantly, I thought it would be good for me to do something just for me. There are more things in between, but even if there was not a specific date in my diary, I looked forward to it, just because I could. Hell, I might have even had time to meet a gentleman fellow. I might have had time to grow somebody else’s egg in my belly. That all goes out the window now. Relapse means that at 30 years old, my life is on hold.

It’s just not long enough. I deserve more. I want more.

Of course, a relapse was an inevitability with myeloma and the treatment I had. I knew this, we all did. That does not take away my sadness at no longer being able to say to taxi drivers in an attempt to get a discount/free ride, ‘I have myeloma, a cancer, but I am currently in remission’. If they were lucky, or if I was talking to an acquaintance and delivering the Road Show, I might have added ‘I feel the best I could feel.’ It’s going to be a while before I can say that again. If I can say that again.

I had things to do. I have not even had time to write my blog about how I manage to hold down a full time job, how that makes me feel and the sacrifices I have had to make to do that. Nor have I blogged about how I was told off by the Medically Trained People for doing too much resulting in me reaching for the Oramorph. Apparently the increased and continuing pain was muscular, because My Myeloma was not active and thus there was not evidence to suggest something more sinister. That might not be the thinking now. The back and shoulder pain is funny, because the thinking was that I injured my shoulder because I forgot that I had myeloma and lifted a suitcase one too many times, when we all know that I should not lift anything. Maybe that is why this hurts so much, because I started to believe that I was more than my illness again. Well, for that sort of folly, myeloma has punched me in the face and stood on my nipple whilst wearing a stiletto heel.

I will find out tomorrow what my treatment is going to be. I’m pretty sure I have been here before. A friend yesterday said that given my previous experience with crappy myeloma, knowing what to expect is a benefit. She may be right of course, but right now I see fatigue, financial woes, steroid crashes, tin mouth, bruises, loneliness, frustration, constipation, insomnia and my bed. Lots and lots of time in my bed. I have previously crowed over escaping from my Bermuda Triangle; that was shortsighted.

The Support Network tell me that I am strong enough to do this again, even though I have not had enough time to replenish my good cylinder (yes that is making a comeback side by side with my paraprotein). I know that I will have to find the strength from somewhere, but finding the strength to exist and not live, when everybody else around you is living, is exhausting. It’s so, so exhausting. I do not want to lose myself in it. I do not know how to preserve me. I am not as strong as I was two years ago. Myeloma has already taken that away.

So then, here we are… Welcome to My Volume II. It’s going to be something, I just do not know what yet.

I suspect I am going to need more help this time around. And lipstick, lots and lots of lipstick.

💄💄💄

EJB x

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Doctors…

A few doctor’s appointments ago, I started to over think the exercise. Over thinking, is apparently, a favourite pastime of mine.

It will not shock the hiccups out of you when I declare that I loathe my doctor’s appointments. In preparation of them, I dwell and I worry. The aftermath, usually is not that bad, and I wonder why I wasted the mental effort beforehand. The reason I do become awash with anxiety, before I hit the 4th floor, is simple, those Medically Trained People can, and have been, the barer of bad news. It’s that simple. They hold all the power of me. Well, my body may play a small part in this game, but, they are the ones who tell me about it.

In the reality of my daily life, this transplants to a period of heightened emotion every three/four weeks, which is usually followed by a pleasurable nap.

I never took my apointments for granted until the day I did, and that day was the Bad News Day. Now, as much as I try, I dread that 20 minutes in that tiny room, even more than I dread the hour prior, when I wait patiently with the other patients, keeping my fingers crossed for a certain doctor. These days, I feel like I need to prepare for the worst news. Maybe not the worst news, but never good news, that would just cause mass disappointment and I need to be pragmatic. Let’s face it, for anybody, a trip to the doctor is never equal to a trip to the cured meat counter. Normally I can predict when my appointment will be nothing, an affair where I indulge in my second favourite pastime and talk about me, but there is always that possibility that they will tell me something about me that I do not know. Bad news. They hold that power, and I cannot really predict when it will come.

It’s never going to be easy, but I realised recently why I find it so difficult. I cannot read those Super Trained Medically Trained People. I pride myself on my ability to read people. I readily admit that I get this wrong most of the time, but with them, in the very limited time I get to see them, there is no scope for me to understand them as people. Nor even imagine what they are like as people. I have more than five doctors, and I have never seen one for more than two hours in total and never for more than half an hour at a time, at a push. In my appointments, all we talk about in that time is me, apart from the one time I had a discussion with my least favourite doctor* about the benefits of a particular phone contract. These Medically Trained People give me no opportunity to know what they are about and this makes me uncomfortable. I know why this is the case, I watch American TV dramas, but it does not make my treatment any easier. They all wear a standard Haematologist uniform too, so I cannot extract anything from their outfits, apart from the fact that as a group, bar one, they avoid the general doctor uniform of brogues, chinos and a crisp white shirt without a tie. Why is this? Why do my doctors favour grey?

My Doctors are enigmas. They are strangers to me. I see them, they talk to me about me and I have no input in the discussions or thinking. Well my body does, but my body doesn’t make me Me. I cannot win them over with self deprecating humour, nor can I make them hate with with back stabbing bitchiness. I don’t let them, no, they don’t let me show either part of my personality. It is all about my blood. My contaminated blood. I have no control over that. The loss of control is disconcerting. They know about me, and to me, they are a collective group with no discernible personality.

I am sure they do things behind my back to my benefit, in fact, I am sure of it, but with the exception of two of My Myeloma doctors, three at a push, I cannot see behind their fake office on the 4th floor and poker face. I do not think my feelings are a reflection against any of the individuals, I am confident I am receiving the best care possible, but my problem, is with the role of the ‘doctor’ I guess. I want to feel pampered.

I struggle to discuss anything with anyone if I know nothing about them. My contact with these Medically Trained People is so slight, I can hardly imagine something about them, and this makes the control all theirs. They hold the power in my appointments. They can dash hopes and make them, and I have no say, no interpretation of it. Every appointment I know this, and I know it before every appointment, and that is why I struggle with it.

So, with that in mind. I have a doctor’s appointment tomorrow. I am
SO excited about it.

EJB x

* I feel somewhat guilty now for describing the secret smoking doctor as my least favourite doctor… I am convinced he senses it, for every time I see him now wandering the floors of the Macmillan Cancer Centre he is nothing but super duper nice to me. Every time, the guilt mounts. He smiles and I sweat. I take it all back. Maybe in the autumn he was just troubled. At least with him, I do not eagerly stare at my phone to avoid eye contact if our paths happen to cross on the street. Hypothetically, this may have happened with a senior of senior Medically Trained Person. Twice.

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