25th November 2016

Katie Cohen: Telling it like it really is

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In the normal course of life, a fit, healthy young woman should have much to look forward to: a burgeoning career, marriage, perhaps a family to raise. Sometimes, however, life does not go as we might expect – or would hope.

Katie Cohen can vouch for that. She never expected to find herself in the august surroundings of the Palace of Westminster, addressing MPs and senior figures from the world of medicine and health policy. But then, she never expected to have lung cancer either.

What follows are Katie’s own words:

“Hi, my name is Katie and I am 34 years old. I may look like your average healthy 34-year-old but, if you were to look a little closer, all is not as it seems. The hair that you see is not mine – that fell out twice as a result of chemo and stress. I now have extensions to mask my thin short baby hair. I may just look like I have a slim frame but I am over a stone underweight, and, at my smallest, I was yet another stone lighter.

“Where I was once able to run a half marathon, I can no longer walk up a flight of stairs without getting breathless. Underneath my shirt, my body is scarred. I have twice had lung surgery, leaving two large scars down my sides. I have a port in my chest that sticks out visibly, and, as a result, I have a two-inch scar across my chest. I have another scar under my breast where I had further surgery to stop fluid building up around my heart.

“All of this – and more – has happened in under two years.

“If you were to look further, under my clothes, under my skin and into my lungs, you would see disease. Lung cancer. Inoperable and incurable. Stage IV. I was diagnosed on the16th of January 2015 at the age of 32.

“The fact that I am standing here today means that I am defying statistics/ as 50% of people are dead within six months of diagnosis – and in the young, the disease is even more aggressive.

“As I stand here talking to you, the disease may be active, growing inside my lungs, as I am yet to find out whether the immunotherapy drug I am on is working. I might also add that this drug, which has already saved my life once, is a drug for which I am only eligible because I have private healthcare, as it is not available in the NHS. That raises the question as to whether or not I would be standing here if I didn’t have this luxury – and where I may end up if it doesn’t work.

“My diagnosis came at a time in my life when everything was going really well and I had so much to look forward to. A really bright, successful, happy and love-filled future. My career was beginning to flourish and I had just got engaged to my best friend, my soul mate. Somewhere in a parallel universe that life still exists.

“I often think about this parallel universe and how it may look, what might have been, what could have been. When I should have been running around visiting wedding venues, caterers, dress shops, florists etc, I chose the first option available as I did not have the energy, and instead, planned my wedding from my bed.

“Instead of looking at gorgeous hairstyles and having hair trials I was watching my hair wash down the sink and visiting wig shops.

“What did all this mean? For my mum, instead of soaking in the joys of her youngest child getting married, she was giving me baths and caring for me again as if I was a child. For my husband, instead of planning our future, he became my carer, picking me up off the floor when I was too weak to move or breathe.

“For my siblings, instead of visiting me in hospital after the birth of my first child, we were all stood at my mum’s hospital bed as she took her last breaths. And instead of doting over my baby and sharing this joy with my mum, I was standing over her grave, watching her coffin being lowered into the ground. She died on 26th April this year. Age 66. From lung cancer.

“My story is very sad and very tragic, but there are thousands of stories like mine that fill our screens, newspapers and magazines on a daily basis. However, I urge you to look at mine differently. You see, because it is lung cancer, everything becomes more difficult, more hopeless, more depressing, more lonely.

“Lung cancer is the biggest cancer killer worldwide and has overtaken breast cancer as the biggest cancer killer of women. But yet no one is running 5ks, holding bake sales or selling ribbons in the name of lung cancer. In fact, I bet none of you even know the colour of the ribbon for lung cancer… it is white.

“My medical team do not talk about prognosis and have not given me an expiry date but, as you have already heard, the statistics do not provide much hope. I believe that this is partly due to the lack of funding that has been put into researching treatments and early diagnostic methods. It took almost five months for me to get a diagnosis. That was five months from when I first went to see my GP with a persistent cough that hadn’t cleared up after four weeks. I was sent away with no antibiotics. It was only because I pushed for it that, two weeks later, I was given antibiotics and sent for an x-ray.

“After the antibiotics didn’t work I asked for a referral to a consultant. I was told that I did not meet the requirements so I sought one using my private healthcare. From here I was given two more rounds of antibiotics and subjected to a variety of tests including x-rays, CT scans, ECGS, blood tests and saliva tests. I was tested from everything from TB to HIV.

“Just before Christmas I was told that it could be cancer, and I had a procedure to drain the fluid that had accumulated around my lungs. I was then told I definitely did NOT have cancer.

“It was now January and I was very unwell. I had lost a considerable amount of weight, had back pain, no energy and was extremely breathless. I went for a second opinion and was sent for a PET scan which was inconclusive. I then had surgery to drain my lungs again, and a biopsy was taken. It was from here that we were delivered the earth-shattering news that I DID have lung cancer.

“This experience was almost identical to that of my mum, except that she was sent away by her GP a year prior to being diagnosed after complaining of breathlessness. Unfortunately for us both, we were diagnosed at an advanced stage, an incurable stage. Had we been diagnosed sooner, we may have been cured, my mum may still be here and I would have been living the life that I now only dream of. All my doctors knew that there was a family history of lung cancer but yet it was never considered a serious option until all other possibilities had been excluded.

“Since my diagnosis I have received great medical care. The doctors, nurses and surgeons have been warm, supportive and caring. At the times when I have been seriously unwell, I always felt safe and had confidence that I was in good hands.

“However, I wish I could say the same for some of the support services and cancer centres that I have accessed. The way in which I have been treated by some staff is shocking. Now, I am not necessarily saying that this is because I have lung cancer but I believe it played a part.

“The first cancer centre I went to after diagnosis was simply unable to support me. I was desperate to meet other people in a similar situation, to see that there was hope and to help with the deep loneliness that I was starting to feel. When I enquired about support groups I was told that I was not eligible. Basically I had the wrong cancer. Because the cancer was in my lungs and not my breasts or reproductive organs I was told I was not allowed to go.

“So there I was, desperate for someone to identify with – and I was sent away. I did finally find some groups to go to and I was relieved, excited and hopeful that they would help me. I went along and was hugely disappointed. In a room of 60 women I was the only one that had lung cancer. In addition, I was probably the only one out of the five of us that had and advanced stage disease, and I was the youngest by at least ten years.

“I made it to two groups before I gave up. The other women were shocked that I had lung cancer and expressed that they felt sorry for me as my situation was so much worse than theirs. This just made things worse. Even amongst a group of 60 women with cancer I still felt different.

“I gave some feedback to the people that ran the course, expressing that my experience added to my feeling of helplessness and isolation. The only thing they could suggest was putting me in touch with a girl that has set up a support group for people with breast cancer. This person has over 30 years’ experience of supporting people with cancer – and she still did not see what was wrong with what she said.

“The only support I have received has been from my clinical lung nurse specialist. She was there to offer support to me and my family from the second I was diagnosed. She helped me call my mum to tell her the horrible news and was there on the other end of the phone when I was crying uncontrollably because my hair was falling out two weeks before my wedding.

“She even came to see me in the intensive care unit when my mum was dying. She has provided me with emotional support and answers my endless questions about my disease and treatments. She completely understands the isolation and shame you feel as a lung cancer patient and without her I would be completely and utterly lost.

“I have only recently been in touch with the Roy Castle Foundation, the only lung cancer charity in the UK. They are the only charity that have been able to support me and have given me a platform where I can get my voice heard to challenge the stigma lung cancer patients face.

“I do not know what it is like having another type of cancer. And I am not saying that one is worse than another. But what I want to get across to you is what it is like for someone with lung cancer. I have spoken to others in the lung cancer community – a community that exists mainly online – and our feelings are all the same. Because we have lung cancer we are made to feel like we are at fault – that it’s our fault we have lung cancer and we are to blame.

“When I tell people I have lung cancer the first thing they say is not ‘how terrible’ or ‘I’m sorry, are you ok?’ or ‘can I do anything to help?’ no, the first thing they say is ‘did you smoke?’

“Again, this sends the message that if the answer is ‘yes’, then I deserved this. I really don’t see that whether or not I smoked is relevant. I am a 34-year-old girl living with the biggest cancer killer. On the 16th of January 2015 my life, and that of my family, was blown to pieces – it was just like a bomb had gone off. What I need, and what my family needs, is love, care, support, understanding and hope – NOT judgment and blame.

“The other feeling we experience is that nobody cares. To me, this is reflected in the amount of money that has been put into research for lung cancer. So you have lung cancer as the biggest cancer killer yet it receives less funding than breast, prostate, bowel and leukaemia – and not by just a small percentage.

“This lack of funds explains why 70% of late-stage patients are dead within a year. It explains why it took five months for me to get a diagnosis, why after less than two years I am running out of treatment options and why my medical team do not expect me to make my 40th birthday.

“This feeling of ‘no one cares’ is then compounded by society, support services, charities, government and the media. All these institutions compound the problem as they simply do not have lung cancer on the agenda. I have been approached on more than one occasion by news channels and breakfast shows wanting to have me on for an interview only for them to cancel last minute because something better came up.

“I know that lung cancer is not fashionable and there is a stigma attached, however it IS the biggest cancer killer and it needs addressing. More money needs to be put into research to improve outcomes for people like me and the stigma needs challenging.

“More and more young people are being diagnosed everyday – it is no longer an old male smokers’ disease. In the time since we entered this room, four people have died from lung cancer – one person every 15 minutes. One in 13 men will be diagnosed in their lifetime and one in 17 women. So think how many people are in this room… Unfortunately, I am not the only one that will live this nightmare – it could be you, or your wife, brother, sister or even your child. So please show lung cancer your support so that the generations after me do not have to experience what my family and I have.

Thank you.