A few weeks ago, I found myself leaving my flat around 12:30hrs for a hospital appointment. Such is my norm, my chosen mode of transport to achieve this was a taxi. Unlike other people, I rather enjoy the occasional natter with a taxi driver. I should be clear that this is not because I am starved of stimulating conversation, it is just because I like to talk. So, I go in the taxi and said something like “oh, it’s a nice day isn’t it?”. I did this for two reasons, the first is because I am British, and the second was because it was a nice day and it was the first time that day I had seen the shining sun. It turns out, that making these comments was a mistake.
It was a mistake because the driver then spent the next 20 minutes or so telling me that I needed to be more active. Not only did I need to be more active, but I needed to ensure that I was leaving my flat before 12:30hrs everyday and that it was crucial that I continued to keep my mind stimulated just as much as I keep body active. I know, I know, I am missing some key parts of the conversation in which I told him I had cancer. However, I think asking to go to the Macmillan Cancer Centre in the middle of a week day, let the cat out of the bag.
I can take a fair amount of criticism. I an pretty sure that in my early twenties, I was the alway lovely human being you see before you today, so I endured the odd bit of unsolicited insight into my negative personality traits. A lifetime of being overweight, also prepares one for having a thick skin against people who feel like they would know better than me on how I best live my life. These days, in the days of the head tilt and sympathy, criticism levied at me, at least to my face, is surprisingly rare. If I do receive any, I usually let it float over my head like I do with the majority of negative thoughts.
That said, there is one subject, a rather broad subject, that I think nobody has a right to comment on, and that is how I manage My Myeloma. I guess, given the percentage of my life this takes up, I also do not appreciate any critiques on how I currently chose to live my life in order to make it through my treatment.
The taxi driver did not know all of this, it was the first time we had met after all, but what he believed to be a throwaway conversation with a cancer sufferer, I found to be deeply insulting and naive. Above anything though, his comments just really, really pissed me off. I know they pissed me off because I am still thinking about them today and they made me think of other similar comments that have pissed me off since I was diagnosed. It has also made any similar comments made to me since, fist clenchingly annoying. It has all led me to believe that there is one golden rule of people dealing with me and My Myeloma; unless you have something positive like ‘wow, I just do not know how you do it’, or something with concern like ‘how are you doing?’; do not say anything about how you think I should manage my myeloma. You are not me, and as much as I recognise the care the comments stem from, nobody but me lives with it 24 hours a day. Everyday.
Although I sound particularly dogmatic on the subject, it is not because I am ungrateful that people are concerned about me enough to say things that they think will benefit me in my quest to survive. I am not ungrateful. I like to know that people care. The truth is, there is nothing people can constructively say to me about myeloma, or say that is just a blatant criticism of my behaviour, that I have not thought myself at least ten times over and tortured myself at least ten times over in the process. You can be damned sure that the arguments I have in my head about how I should behave, are far worse then anything anybody can say to my face. After more than two years, I have learnt that managing my own criticisms is hard enough and I do not need others dredging them up out of their own altruism, care or in the odd case, meanness.
On one side of the coin, I give myself a pretty rough time about how long I stay in bed, how little I spend in bed, how long I stay in the flat and whether it is sensible to leave the flat. On the other side of the coin, I pride myself on how, despite my many misgivings about the length of time I spend in bed and in my flat, I still manage to get out of bed everyday. In getting out of bed everyday, I also pride myself on how I still manage to hold my head high when I need to stay in bed.
The pride I have in my own behaviour means that any comment or criticism does not just feel like a mere comment or criticism. I feel like it is somebody attacking my core being, something they may have an understanding of, but they will never truly understand because they are not me. In this, I include fellow myeloma sufferers who overtime, have told me how I should feel when I do not feel that way. Once, somebody told me the side effects I was experiencing post multiple Velcade injections could not be happening because they did not experience them. We are not the same. I also include friends, one of whom, I discovered put me through a rather difficult time during my remission because they felt that I had not expressed my gratitude enough for their kindness in my blog. Trust me, for a few minutes on most days I worry that I will never be able to show enough gratitude for the way the majority of my Support Network have been there for me. I did not need the silent treatment when I was trying to move on and up in the real world, to realise this. It set me back.
The most irritating comment is being told to get out of bed or off the sofa and that doing so will make me feel better. It’s not a malicious comment of course, but it is one that seems to negate the work I have done to allow myself to stay in bed. The work I have done to know when I need to stay in bed. I would not have been able to say this a year ago, but I know now that when I stay in bed, it is because I physically need to stay in bed. It is not because I am depressed and it is not because I am lazy. I am talking a lot of drugs and I endure daily back pain.
I am strong, but I am not infallible.
Everybody is always going to have an opinion on me and my illness. Selfishly, when these opinions go against my own, I take offence. I bruise from it and I have been battered enough by My Myeloma to sit at home worrying that others think that they could manage this better than I do. The comments make me doubt myself and they make me doubt how far I have come from the naive 28 year old in the hospital bed on that fateful Friday afternoon.
And do you want to know how far I have come? Right now, I am able to watch a medical television melodrama. I am able to think about my future good and bad and I am able to detach from it when I need to. My next sentence makes no sense, but I did this by myself. I did this all by myself, just with a teeny bit of help and love from those around me.
It’s My Myeloma after all.
If you must criticise something, tell me I need a hair cut or do what Mamma Jones did the other day and tell me that I need to trim my nasal hair. I can take that. Just.
EJB x
