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By Lucy Booth. Lucy was diagnosed with breast cancer in October 2011 at the age of 32. In May 2014, she found out it had spread to her bones, liver and lung. This blog post is based on a speech Lucy made at the launch of a Macmillan information centre at Whittington Hospital in north London. She writes her own blog at http://www.lucifersboob.blogspot.co.uk/
The media often like to speak of cancer as a battle. As a fight that we must win.
All too often, we hear of someone losing that battle – almost as if it was their battle and theirs alone. As if they have failed in that mission. As if somehow they personally just haven’t given a good enough show of beating it. It is a solitary, isolating description. And ultimately, I feel, a negative one. To me, the battle analogy conjures up an image of hatred and of war, and frankly, cancer brings enough of its own negativity without us adding to it.
It is also rather a tired cliché – thanks to years of research and the work of the oncologists in our lives, it no longer has to be the battle it once was. There has been a dramatic increase in the number of people living with cancer for longer. It is no longer necessarily you or it. Sometimes, the two of you must just learn to live together.
Finally, the battle analogy is shamelessly anthropomorphic. Cancer doesn’t have a brain, a mind, a well-planned strategy. Let’s not honour it with that status.
Personally, I see having cancer as a job. It’s a rubbish job – one of the worst you’ll ever have, and the pay is terrible, but it’s a job nevertheless. You won’t want to get up and go to work every day, but you do and you must. There are days when you can’t be bothered – the days when you’re throwing up and your whole body aches. And there are the days when it is a little bit easier – when you feel like your normal self (if a little light on hair) and your cancer is nothing but an occasional thought through the day.
But, as we all know, the thing that helps you through the working day, when your project is particularly tricky, or your boss is giving you a hard time, is the group of people you work with. And the same goes for cancer. The people around you, the support network you have at hand, they are the things that help you through the day. And, at times, the night.
I’m lucky. I have an amazing group of family and friends who are there for me and with me every step of the way. Who let me cry when I need to, and help me forget it all when I don’t.
And to that group I can now add the nurses in the chemo suite the staff at Macmillan, and the volunteers who come in while we’re having treatment to bring tea and biscuits and a bit of a gossip. They’re constantly run off their feet, and yet they have all the time in the world to get to know us, make us feel welcome and make what could be a horrible process altogether more bearable. And they’re not just there for us, the patients, but they have time for our relatives, and our friends. Because it’s not just me who’s affected by cancer, it’s everyone around me.
But, as I say, I’m one of the lucky ones. I have a strong support network. But some people sadly don’t, and that’s where these nurses and Macmillan staff really come into their own. Because as well as the financial and practical support they offer, they are a shoulder to cry on and a sympathetic ear.
Cancer treatment isn’t just the drugs that pump through your veins, it’s finding the means and the strength to get up and get the job done. And without this lot, that job would be nigh on impossible.
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How wonderfully different people are. A rubbish job has never crossed my mind yet you make it seem so obvious and simple. But I? I am one of those thinking in the terms of a cliché, well two clichés actually. When I am thinking of the sweep of my experience and the possible futures I think in terms of a journey When I think of a course of treatments I think in terms of warfare. When I think of a single therapy I think in terms of a battle.
I hope I am not too big a disappointment, with these clichés. They help me explain what I am doing. They help keep up my moral.
I can really relate to what you have written Lucy! I cant win this "battle" and its not because I cant fight hard enough. All I can do is live with it and try and keep going, ,just as you say, get up when I don't want to, put my makeup on and most days get out of the door for a while! I hate it when people tell me to be positive....of course I try! But as you know sometimes we just cant because we feel so awful.And there isn't any escape. Some holidays occasionally, but mostly the day to day slog. Sometimes I forget about it for almost a whole day, but my dreams will remind me, full of anxiety. I cant control them. I have just finished five sessions of radiotherapy....palliative of course..so days of constant travelling and being at the hospital. No escape there. And no matter how many times I say palliative, some people just don't get it. Of course I wish it was curative, but its not and I even feel I let people down if I don't act as if everything is fine. Act. I am not a miserable person although from reading this you might think I am.I have an amazing medical team, cant fault them at all. A lovely family and a man who does his best to support me. I am one of the lucky ones too. Very best wishes to you. Julie
I too never thought of it like that, maybe because I am not the one that's ill, my big sister is. People never sees to amaze me with a new point of view x
I so agree with you ! I was made redundant on the day of my diagnosis in February 2013. The two weren't related but the thing is I didn't feel "unemployed" until somewhere around the end of that year.
From the moment one is diagnosed, a treatment plan put in place and chemo sessions began my life was taken over by the clinical team and radiotherapy was Monday to Friday, week in week out. I felt more like a commuter. And when treatment is over you need all your strength to overcome the side effects so your mind and body are still working extremely hard for months, maybe years.
Ho yes it's a rubbish job, but we have to do it!
I can relate I tell people its a full time occupation, one that you don't apply for. I also tell people you don't have a choice not to fight, you have too get by anyway you can. I have just been diagnosed with recurrent Vulval Cancer and know this job is about to get tricky again
I can agree in parts with things everyone of you has said, but the thing that is so obvious is how individual we all are in how we view our cancer.
When I was diagnosed I felt like a person who has returned home to find that squatters had moved in, via a door or window that I had inadvertantly forgotten to lock. I was furious that this thing had grown and was living in my body, without my consent. I was determined to get the bailiff in to give it its marching orders.
I think it was this way of thinking that gave me the strength to go to battle and fight this demon. I always knew that there was a good chance that I would lose the war, but each battle I faced filled me with new energy.
I forced myself to be positive, telling everyone that I knew that I was younger than a lot of people with Oesophageal Cancer, and that I was fitter than most, because I was not taking any long term medication other than Lansoprazole. I know now that this is no guarantee, and that my confidence was built on shaky ground. It is one of the cancers that has poor outcome figures.
I agree with the point that people can feel that they have failed if someone says they are losing the battle, but I felt that having this spirit in me, I was giving it my all, and that I had nothing to regret if cancer got the better of me. I had given it a good run for its money.
I felt my positivity was my suit of armour, and I refused to allow cancer to find a chink of negativity to find a way through. I viewed negativity as a weakness I had to control.
I look back and know that it worked for me at the time because I have been fortunate, up to now. I have come through the chemotherapy and sugery, although it has been a gruelling process with severe side effects and complications to contend with. The treatment was curative, but no promises or guarantees. I have a 50/50 chance it could return.
I do know that if it does return, I couldn't have done more to stay alive. I try not to think about it, but it is difficult, and always lurking in the shadows. I would be classed as palliative, and hope to retain my fighting spirit, but am very willing to regroup if that time comes, and change my strategy, because that is all it is really. A strategy to deal with things that might be beyond my control, but I am not going to give up easily.
I don't want to spend the time I have in worrying about something that might never happen. I try hard every day to spend some time doing things I enjoy, and having fun with my family. I am fortunate to be surrounded by people who love me, and who I love in return.
I also like to think that cancer has changed me, and that I have emerged a better person. I try to be kinder, see the other person's perspective, and gain pleasure from things that went over my head previously.
I can say all of this because I have been fortunate, and I am only too well aware that if things had turned out differently, I might not feel this way, ir view my life in the same way at all. I hope that I am flexible enough to change my view and retain my positive approach to life.
I send you all my love and hugs, pray that you have lots of quality time to enrich the tapestry that is your life story.
Thanks so much for all your comments - I will make sure Lucy sees them.
It's so interesting to hear so many different perspectives on this. Everyone's different, and that's why we try to invite guest bloggers like Lucy to write for us - we think it's really valuable to hear from a range of different voices and experiences.
If anyone else has a topic that they'd like to write a guest blog about, please contact me on firstname.lastname@example.org with your idea.
Hi all, my first time reading a post, discussion and comments, having just joined Macmillan online.. I feel a reluctance to add anything, maybe because it just brings things into a more solid reality. But thank you for all your thoughts here, it helps to hear them. I am just a week into weekly cisplatin and daily radiotherapy for an olfactory neuroblastoma, five more weeks to go. Life long monitoring as it can come back too. The surgical path was uncomfortable, but I hope in the past now. Then the life living after... Side effects already kicking in...from chemo and radiotherapy and I am scared about further damage. The daily mask is becoming more familiar, and the staff are kind...
Lucy's post really struck a helpful chord, I said yesterday that this managing the treatment journey feels like my job now, and she is right, it is a rubbish but deeply challenging job, and one I need to give my attention to with I hope sufficient grace and willingness. That fluctuates. Human I guess. One of the things that I have found more humanising this week is that people waiting for head and neck radiotherapy are so gentle in their interactions, little conversations... I wish you all well wherever you are in your health journeys.
Hi everyone my name is Diana. My husband ,Brian finished his treatment 4weeks ago for cancer of the larynx He is now starting to feel a little more normal! In as much as the side effects are calming down. In April we go back to meet his team to discuss the outcome of his treatment but have to wait a further few weeks until he has a CT scan. I have read with interest your ways of coping with cancer .We too have found the support of family and friends a great help. We take each day as it come
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