I remember the moment I was diagnosed like it was yesterday. I remember lying on my bed on the Acute Admissions Unit on the second floor of UCLH, on a Friday afternoon, with Mamma Jones and Big Sister at my side, with the junior doctor sitting by my feet on the righthand side, telling me that I had myeloma. I remember crying. I also remember Big Sister crying, the doctor crying and the two nurses leaving their station. I remember the medical stuff that followed on the days after, my formal diagnosis, the tests, the pain and then the visitors. I do not really remember telling the people I love that I had cancer.
I know I have thought about what it was like for them before, but I have never really thought about it. I have not had the time. In my current limbo, I have a lot of time.
There are many people in my life who are dear to me, and try as I might, I do not remember telling them. Apart from the above, I remember telling A Twin on the phone. I remember telling a Lali as she sat at the bottom left of my bed, for her to repeat over and over again ‘okay’. I remember GB calling me, for me to finish my happy news for him to tell me that he had to perform in five minutes time. And I remember my friend Katy calling me crying, not knowing why I was in hospital for me to pass the phone onto Mamma Jones on the Saturday morning because I could not speak the words again.
I know there were a lot of people that passed the message on for me like a communication tree. I do not remember my conversation with the Barber of Northampton, but I know I tasked him to inform people, and I know that Middlesborough and WM told the work folk about My Myeloma. I could not do it myself.
I do not know what happened when I was not around. I do not know how my family took the news nor what they said to each other. I do not know what my friends did or whether they discussed it with each other. I found myself reminiscing about the happy August of 2012, with some friends and they told me about how they managed the early days. I can smile now about the pain I experienced before I was admitted to hospital, not knowing the cause of my pain and how I joked about it being cancer. I cannot joke about how people managed my diagnosis. I do not know what people did or said out of my view. I do not know if it is wise for me to think about it. I found out yesterday that my best friend managed it by crying under a hand drier in a toilet, she was probably inebriated, but I know her, and she probably would have done that with or without the beer.
I think the shock of finding out that somebody has cancer is something many people would wish to never experience. The shock of finding out that somebody young has a cancer with no cure is something else. It is unexpected and it is a tragedy. I experienced that reaction. I was overwhelmed by it. I experienced it with everybody who came to my bed, sent me a card, wrote to me or were kind enough to send me gifts. My diagnosis pulled the rug from under not only my feet, but the feet of all those people in my life, especially those who love me.
My friend said to me that she thought it is easier for people to understand what has happened to me now, if they had seen me during those earlier days at UCLH and watched how I become accustomed with it. I do not know whether she is right. My sister said people would forget about me once the shock of my diagnosis had passed. I do not know whether she is right either.
Six months on, My Myeloma continues to have a life of its own. Every day it tugs a little bit more wool away from below my feet and everyday is a struggle whether I show it or not. I live it everyday. It is with me everyday. Big Sister, Mamma Jones and My Myeloma are my constants.* My Myeloma really is with me everyday. I cannot see a day when it will not be with me. Now, however, six months on, the daily impact of my buddy, is not felt by the masses who came to my bed, sent me a card, wrote to me or were kind enough to send me gifts. Their lives have moved on and now the shock of my diagnosis is a memory. They do not live it everyday. The fact my life has been put on hold is not news anymore.
My Myeloma was far easier to manage when it was.
* It should be said that I have people who are my weekends and those weekends are like a hot water bottle and EMan’s paw rolled into one.