Tag Archives: perception

The Reluctant Complainer

In my mind, I like to think that I am not a complainer. I imagine that I am a picture of English manners and/or passivity. I worry that when it comes to my hospital, I am not seen through my own rose tinted glasses. Sure, on the rare occasion, I may have been vocal about the delays in Daycare, but only on one occasion was I shamefully rude about said delay and I did apologise for my reaction a few days later. Telling people how much they bruised you after they have put a cannula in, isn’t exactly complaining is it? By the same token, telling a few people that a Senior Medically Trained Person has poor people skills, is merely an observation.

I am worried that I am perceived to be a complainer, because whenever my life is interrupted by delays on the 2s now, at least three people apologise to me and more often than not, one of those people is the Medically Trained Person in the fancy Blue and Red outfit. It is of course polite for them to apologise, but there were no apologies to that extent when I was on PADIMAC and my treatment could take four or five hours. And so, I fear I have an unfounded reputation for speaking my mind.

Okay, I did write three letters of complaint to my GP when I was diagnosed, but that was to my GP. I am not one to complain to the lovely people who have taken care of me and continue to take care of me so well over on Huntley Street.

I mean, there was the time I demanded to see the head nurse regarding the quality of the nursing care at the National Hospital of Neurology and Neurosurgery, but that complaint was warranted, because the care they could be bothered to provide really was dire. I followed up my concerns in the ‘other comments’ section of the UCLH survey to boot. Twice.

I really do not complaint. I try to remember the manners passed down from Mamma Jones and, let us face it, I’m very passive.

I suppose my comments to multiple Medically Trained People when I was admitted to hospital during my transplant, could be interpreted as complaints. I was pooing a river and hallucinating green giant lemmings attempting to escape from my stomach by drilling holes with wooden spoons at the time.

The care I receive truly is tremendous. Everybody is super duper nice to me. I like to think this is because I am nice and not because people have secretly badged me as the opinionated fat one with myeloma.

So, as you can see, I really do not complain. I am ever thankful for the care I receive in that wonderful building on Huntley Street. It pains me to think that others would assume anything else when it comes to my being.

That said, a month ago there was an actually an incident that did require complaint. I actually complained. To this day, I feel most guilty about it and I have not stepped foot in the section where the incident occurred since. In short, My Second Favourite Blood Taking Person, whose demeanour is usually so calm and collected, shouted and swore at me whilst directing a needle at my arm. There is more to my tale, but all I will say is that it was unprovoked. I have a witness.

I was not going to complain, not because I am not a complainer, but because I feared it would make me feel uncomfortable when I make my fortnightly journeys downstairs to the Lower Ground floor. I am inherently selfish, so I did not consider the impact had he shouted at somebody else and not me, who as you all know, is as hard as nails. I eventually realised that I already felt extremely uncomfortable about visiting the Blood Test Room because of the incident itself, and when I realised that, I wanted to tell somebody simply because it should not have happened and I should not feel this way about having to have my blood taken. It definitely should not have happened in a cancer centre. The centre is not the place to feel awkward. Just ask their decorator.

I went to a magical window called PAPs in the hospital’ Tower, where I was told that because of what I was alleging, it had to be a formal complaint. And here in lies my guilt. I feel guilty for having to complain and now I am afraid to show my face, not because I fear everybody in the Blood Test Room are now going to be intent on bruising me as much as they can, which I do, but because I am embarrassed. I am very embarrassed about it all.

I am told that I will receive an apology when I next go in, that creates more embarrassment. The thought of it makes me want to convulse in an overdramatic and unnecessary way. I do not want an apology, I want it to have never happened. My Favourite Receptionist has offered to come down with me, which is nice. Clearly, I do not know if this would make me feel more awkward.

Tomorrow, I am going to go and have my bloods done and I will have to keep reminding myself that I did not want to complain. I am not a complainer. I am a reluctant complainer who occasionally does not think before she speaks. Maybe I’ll get that on a t-shirt.

EJB x

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Armour

From the point I was diagnosed I entered a strange sort of twilight zone in which, whilst my body could not be protected, my mental state was, or at least defended. Personally, I put up several barriers to protect me from harm, and others, well, they were very kind. It was journey, and in remission, I find that I am running on fumes. It’s a new twilight zone.

Any personality flaw, any indiscretion no longer exists when you have cancer, at least, nobody makes you aware of it. You become angelic. Any previous flaw, any previous negative in your personality is erased. One may be petty, one may be needy, but when you have cancer, it’s forgotten, because having cancer, and being treated for it is difficult. Such a tragedy creates amnesia and we, cancer patients that is, become the most perfect people to have ever walked the planet. Mos def, mofos. We are definitely not human. We are special. We are special because nobody deserves this, especially the nice ones.

Our bravery, thus needs kid gloves. We need special treatment and we need protection. It’s a thought and feeling that is steadfast. We’re brave and we’re special and we are respected. Cancer patients cannot and do not have flaws. Just look at a high profile deceased cancer sufferer, may she rest in peace. Our sins are forgotten and we are enshrined in kindness and support.

It took a long time for me to get used to people treating me differently to the way they treated me before 17 August 2012, but acclimatise I did (apart from the head tilt and when speak talk to me like I am seven). With the beauty of hindsight, I see that I needed it. It became my armour and offered some respite from the negative thoughts in my head. I needed people to be considerate to my situation, I didn’t need them to be consumed by it, but I needed, and appreciated the understanding I got. I see now that it empowered me. The lengths people went to, to make me feel like me, were, in fact priceless. I see that now.

To the untrained or uneducated eye depending on how you look at it, I do not have cancer anymore. I am in remission. I have gone back to normal. I am not EJB, I am EJJ again and only that. Such people are wrong of course, I still have cancer. I may be in remission, but my cancer will come back. There is no may about this, it will come back and that is something I am still trying to understand and struggle with.

Since the news spread amongst my adoring public that I am in remission, I have seen a shift in attitude towards me. The lovely, permanently frilly and overly kind demeanour I experienced for 15 months has been replaced by something else, perhaps something more honest. I have discovered in remission, that one does not get the same level of comfort and support, associated with full blown cancer. You are no longer the brave old soul, fighting for the greater good. The respect is no longer universal. The protective bubble of niceness shrinks. Whilst the majority of people will understand that you are not a benefit cheat, tricking the public out of their well earned tax Sterling, some, will treat you like you have robbed them of something, but you will not know what.

On a harmless level, I have noticed people thinking that I will automatically have the energy levels I had once before, that there has been a flick of a switch and now everything can go back to the way it was before My Myeloma. It is an approach that does not help me. I understand the logic in terms of ‘ moving on’, but it does not help my recovery to be treated like that 15 months did not happen. Those 15 months left a mark, and not a very confident one.

Sadly, I have also discovered that some shifts in attitude are not as easy to get over. It seems that for some, the word, ‘remission’ has been a chance to lift whatever facade has been in place since I was diagnosed. Remission means the public does not have to be nice to me every minute of everyday, and that I can be treated like everybody else. I have seen a negativity appear that I am no longer acquainted with.

I like to think that most people who lived to the ‘R’ word, get there quicker than I did. For those lucky types, they have less time to become accustomed to the level of treatment of which I first spoke, from those around them. They only felt like princesses, or princes if I am catering for all, for a period of months, whilst their lives were irreplaceably shaken to the core . I, on the other hand, had 15 months of such treatment and 15 months to get used to it. That 15 months removed my amour, but had grown pretty thick during my 20s.

My Remission returned me to the real world, but without the protection I had when I was last in it. It’s a scary and uncertain place.

The truth is, I am not always a nice person. I can be moody, I can say the wrong thing, like the sound of my own voice and I hold dear my own opinions. At least that is what I recall from my pre myeloma life. My remission has forced me to look at this because other people have deemed it an acceptable time to remind me. Yet another thing for the paranoid treasure box. This reminder, can also be viewed as payback, and it comes in many forms. It could come in the form of a pack like attempt of silent treatment also known as middle aged bullying, or it could come in the forming of shouting, or in passive aggressive text messages. All these things, have made me reflect and made me wonder whether, I deserve to be kicked when I am down, whether I deserved to be in remission. Trust me, this is a black hole.

With or without cancer, I am human. I have good and I have bad. I would like one of these more than the other, but I am sure, on this subject, beauty is in the eye of the beholder. Personally, I have spent the weeks post transplant, reviewing my good and my bad, because that is what I need to do and am expected to do by all those who supported me during my dark times.

It’s a path full of dead ends. I am never going to be satisfied.

I do not understand it what has happened. I do not understand that remission was some sort of truth serum. All the anger or nastiness that has come my way post remission confuses me. It makes me doubt myself and how I managed being diagnosed and being in treatment. In my fairytale head they could be taking their anger at myeloma out on me, but that would be delusional. The truth is, as much of a leap as this sounds, I feel like this negativity changes the journey I have been on. I feel like I was lied to and I feel like I lied to myself when I thought everybody cared and supported me. I feel like it takes away the success of my remission, and it diminishes the hard work it took to get me to this point and the reasons why I fought so hard to get here.

It also represents a deep misunderstanding about how difficult that 15 months was. I did not get here intact, and I think that is punishment enough. Not knowing what ‘here’ is, is also a bitter pill to take. I do not not need to be punished again. I want to celebrate, but instead, I feel like I am losing a battle.

I know that my world cannot be sugarcoated forever, but I was unprepared for the change that has come. There isn’t a Macmillan leaflet about it you see.

It has left me feeling weak and I am not sure when I will be able to get back on my feet to metaphorically kick all my haters in the nuts, and what I mean by that, is not let it bother me. Right now, I would not say boo to a goose.

EJB x

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Exaggeration

At times, people can exaggerate. It’s true. Everybody in the whole human race exaggerates. See?

Sometimes the added flare to one’s tale might be ever so slight, other times, it really can border on the Lie. I would like to think that I only exaggerate when it is absolutely needed. Let’s say, when I want to make a good story, awesome, in an attempt to make you think I am interesting, funny and/or brave. It was the bestest film I have ever seen, today was the hottest day known to humankind and I really was that eloquent during the conversation I just told you about, and their delivery was exactly like I depicted it to be.

In terms of My Myeloma and my experience with it, I find it very difficult to tell if I exaggerate or dare I say it, recognise it when I have exaggerated. With My Myeloma, it is very true to say that I live in the moment. By that, what I mean is that if I am having a good day, it feels like the best day I have had since before my diagnosis. That sort of exaggeration is fine. The bad days?

The real exaggeration ultimately comes on the bad days or when I am feeling bad, and that includes the mental and the physical, by the way. Both can be so dreadfully awful, that one feels like they are the living dead, trapped in purgatory and nobody and nothing, I mean, nobody is or has ever, ever felt this way since before the dinosaurs were frozen to death.

Mentally, the exaggeration is just for me and my own personal consumption, unless it is really bad and then it might spill out to others. I am not sure yet how to articulate this, but try and trust me when I say, it can be bad.

When I feel poorly and suffering, I find it very difficult to remember a time when I have felt worse, so in that moment (moment is wishful thinking), I feel like I am in hell and there is no escaping it, although I know eventually that there will be an end. To get this across to others and to get them to understand, I may at times, unwittingly, makes things, the pain, discomfort and general grottiness sound worse than it is. Granted, even if it is not the worst I have ever experienced, to the majority of people, I am sure they would find what I am experiencing pretty horrific. I have seen how people cope with the common cold, social networking makes that possible.

I cannot always remember how I felt before, and when it has been particularly unpleasant, I try to forget it as quickly as possible. I loathe it when people say they have the ‘worst’ so and so, or over use the word ‘ever’, but I am guilty of it, some of the time. Not all the time; I do not want to exaggerate. I just cannot always remember. I really should have maintained and backdated my attempt at a Pain Diary, because then there would be some historic data to judge my throwaway comments and thoughts against. It was just too time consuming and lets face it, though I am the only one to have seen it, it was depressing. Granted, the diary was still my interpretation of events and it was not qualitative proof, but if we understand the limitations of the source, I personally, would feel more confident to quantify my realtime feelings and experience to others. A barometer if you will… It would be lovely to say to somebody, today, Somebody, I am at a 1.5 and have them know exactly what I mean.

And so, the purpose of this, is to tell you, that last week I exaggerated. In this very format! As I lie on my bed with just three pillows typing, curled slightly to my right, I can with some certainty, that my pain and my mobility is not as bad as it was last September. Anybody who saw me last September and saw me now, would be able to tell me that. My friend laughed at me last week, when I realised this fact whilst I was sitting on my sofa, having navigated my way around the pouf, with my legs crossed. She then proceeded to remind me that in September of 2012, I could not lift my arms above my head nor bend down. So I exaggerated. Whoopsie. Apologies.

So how much pain and I in? The answer is, a lot. How is my mobility effected after my transplant? The answer is, a lot. Clearly, I will have to perfect this when I finally send off my claim for disability allowance. I need a Blue Badge, man and I do not know if that is an exaggeration.

Best wishes,
EJBx

P.S. I may overstate, emphasise and distort the truth on the rarest of occasion. I am certainly guilty of blowing the odd thing out of proportion. Hell, I exaggerate. To be clear though, I do not lie.

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