It hurts too much to watch…

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Every time I hear of a death of someone dying from secondary (metastatic) breast cancer I think of a particular film.

“The Deer Hunter – an in-depth examination of the ways in which the U.S. Vietnam war impacts and disrupts the lives of people in a small industrial town in Pennsylvania”

Cancer is certainly like that. It impacts and disrupts everyone’s life in your own circle. Family and friends reel and this is true for thousands of lives. Over 55,000 newly diagnosed breast cancer patients every year. 11,500 secondary breast cancer patients dying every year. That’s one death every 10 minutes. The figures are shocking.

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I can’t watch the film. I’ve seen it a couple of times and I find it a real hard emotional watch, to the point where I can cry just thinking of it and what happened. The horrendous stark reality of war and what happens with people, unthinkable things that go on that is completely out of our control.

So I see another death on social media of someone dying from secondary breast cancer and they post a lovely vibrant picture of what his person looked like. They don’t show the reality. I have only seen two people actually brave enough to do this and it is shocking. They look like someone who is from a death camp. Maybe people do need to see this, I think of HIV and Ebola and even the crisis in Sudan where people were starving to death – ‘feed the world’ – and how visual the impact was and used to help this campaign. I think of the metaphors of breast cancer and how it’s completely out of our control. Whether the drugs work or not, whether we live or die from this shitty disease who knows, we don’t know.

With secondary breast cancer we struggle along, scans every 3 months, treatment every 3 weeks and on a daily basis we move, we live. Move to try to find some sense and purpose whilst still living with a terminal diagnosis. No matter how you flower it up and whatever you call it, it is the same terminal disease. Statistics say that only 15% survive beyond 5 years. That’s a pretty stark statistic. So this is where the scene in The Deer Hunter where they play Russian roulette enters my head and every time I hear another death, I think of a gun to my head and a ‘who is next?’ A sick game with my friends who are dying. I am dying. How long have we got? Who knows. And yes “I can be run over by a bus tomorrow” but you know what at least I would have been happy and blissfully unaware. This is painful. Painful knowing and understanding the fate of most of us with this disease. I wonder if any of us are mentally sane at all with this bleak outlook? But we keep living and breathing.

So in the midst of this ongoing treatment, deaths and heartache I have to do something, I have had a meeting with my MP Debbie Abrahams – she is a Breast Cancer Ambassador and I needed to bring the attention to this disease home to her.

This is a link to one of the letters in reply to Debbie

She has people like me, in her constituency, who are dealing with this disease and we are being failed by not having any meaningful data collection since 2012. The facts are there, we simply are not counted within the data. They have written us off, already before we take our last breath. Sometimes the treatments work and sometimes they don’t. We have good treatments and good Oncologists, but many ineffective ones that when resistance to the drugs hit we have to change to another, sometimes less effective drug down the line. There aren’t 100s to choose from, they talk about 4th line chemo. I know a friend who has had 5th line chemo, I guess they try until your body says no that’s enough. So the ‘you’ll beat it’ ‘be positive’ brigade can just stop that bullshit now.

So Debbie has promised that she will continue to push the issues that I and many others are raising to our MPs and parliament and has said she will highlight the many points I’ve raised with Jeremy Hunt the Secretary of State for Health. I am not going away (at the moment) and I hope I can live many more years with effective drugs. Only death can stop me in this “fight” (que the battle terminology) but I know even if this happened there will be others to pick up the torch and run, walk or crawl with it like I’m trying to.

It’s nearly Christmas, a time synonymous with deer and I guess there may be a rerun of The Deer Hunter and I will nervously turn it on and then switch over to something else because it hurts too much to watch.