Understanding myself and living with metastatic breast cancer
There have been two programmes on the BBC over the last couple of weeks which have really helped me to put together some of the jigsaw pieces about my self and my father, as well as helping me understand why I feel as though I can live with metastatic breast cancer although it will, in all probability, kill me.
The first is The Best Of Men, (http://www.bbc.co.uk/iplayer/episode/b01m1jqd/The_Best_of_Men/ which may not be available in your part of the world but is being rebroadcast on BBC2 at 10pm today, 2 Sept 2012 BST). The clue to my father here was the attitude to those with spinal injuries before Dr Ludwig Guttman made the British government think again with his approach to dealing with such injuries, and which ultimately led to the foundation of the Paralympics which is taking place in London at the moment. In the First World War my father was in the Royal Flying Corps, which was the forerunner of the Royal Air Force. Whilst at an aerial gunnery school in 1918 his plane cracked up in mid air and he spent six months in a full body cast in military hospitals, only able to move his arms and head as a result of his injuries. Although my father was ‘lucky’ not to have endured the trenches which so characterise the First World War, he would have shared hospitals with those who did. He would have lost comrades and friends. The consequences of war would have been all around him, and it was not glorious or victorious. Although not as severely injured as those who were portrayed in The Best Of Men he still had back problems for the rest of his life, and a War Disability Pension.
I guess that what this showed me was the determination it would have taken my father to recover. The impact of being in a hospital with so many thousands of others, many who would have died because of the limitations of medicine knowledge and technology a hundred years ago, and the despair due to the injuries and experiences of so many which may also have contributed to their death. War is not a John Wayne movie. It is not something that I have experienced in a personal and visceral sense. A ‘good’ war can create a feeling of victory and success; of right winning over might, but on a personal basis there is only loss on every level you can think of. In a ‘bad’ war there must be the most intense anger at the loss of so much with seemingly no reward, rhyme or reason.
Maybe I have inherited a bit of my father’s determination to keep going, and that determination is not glorious or brave, it is personal and often difficult to maintain. It can be hard to understand why this has happened to me, but I would not wish to this on anyone else. I know that my blogs may sound as though I hate the survivors, and one thing you can be sure of is that I don’t want them in my team, in my gang. I don’t want them because I actually do celebrate with them their health and survivorship. I don’t want any one else on this side of the line. I wish they would know how much they should celebrate their health and not fret about a recurrance. Don’t waste your time; don’t give cancer that power over your life but take it with both hands and don’t look back. What I do wish is that they could summon the compassion to acknowledge those who can never label themselves as a survivor. Why is it that someone dying of mets can be told she cannot tell anyone at a support group about her diagnosis even while she is expected to give support to those who may actually be cured? What kind of a culture is it that demands that the dying support the living?
My relationship with my father I have come to understand was not a good one. We all think our childhood is normal, just because it is our childhood and we know nothing else. My father had rages that could last for days, and would hit my mother although he never physically hurt my brother or myself. He was also very controlling. I was watching the most recent episode of the new series of “Who Do You Think You Are” which focused on actor Patrick Stewart’s father (again I have no idea whether you will be able to watch this in your part of the world http://www.bbc.co.uk/iplayer/episode/b01mfw63/Who_Do_You_Think_You_Are_Series_9_Patrick_Stewart/) when I started to recognise that the symptoms that his father had from what would not be called Post Traumatic Stress Disorder were things that my father also had, even though his experience of both World Wars (my father returned to the Royal Air Force in WW2 after a bit of a fight to get accepted because of his injuries in WW1) was not the same front line experience as Sir Patrick’s father. They are also, to a certain extent, symptoms that I realised that I have had as a result of my experiences as a child. As a child I knew no different, but it was an experience which left me feeling rejected, unacceptable, stupid, unloveable and repulsive to everyone. I once asked my mother to do something about the teasing and bullying at school, and she told me I should be happy I made people laugh. Right now I have tears in my eyes and I can still feel the pain of the impact of what she said, although she probably meant it in ‘it doesn’t matter’ kind of a way. For me it was devastating and made me feel totally alone because she was the only person who gave me any support or encouragement.
My diagnosis was not as devastating to me as it may have been to many, simply because I had spent years wishing I was dead. I never had an ambition to live to be very old in fact the loneliness of my life has made me dread the idea. The diagnosis and my determination to keep plodding on have, however, now allowed me to put the past where it belongs. It does not dominate my life any longer because … well what is the point? If I don’t enjoy living right now, in this second then there is no point in being alive. This is all about me now. Not about my childhood, my family, teachers, friends … blah. It is all about me, me, me, me, me, me, me. Although I still feel anger and can really lose it at times when I feel that no one is listening to me or even trying to understand me, there are times when I still feel invisible and go back to my old mantra of “I am nobody, I am nothing, I do not exist” but I can control that more by bringing my attention back to my breathing and to this very moment that I am alive in, and where I am safe and ok.
It is all these things that have made me realise that I have succeeded, and the cancer has failed. I have the determination not to allow it to have more power over my life than it does already. I have the bloody-mindedness to tell it where it can go because it is not going to take any more from my life than it ultimately will. It ain’t over till the fat lady sings, and although this fat lady may not have a great voice and it isn’t as strong as it could be, I sure as hell ain’t going to shut up. So get out of my sight you horrible little thing, get out of my way, I have things to do and a life to live. In short, bugger off!