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.