It’s not something I really talk about, but a recent conversation with a colleague convinced me that I should. Three years ago, I woke up from what was supposed to be the routine removal of a benign tumour in my left cheek to find out that in fact it was not benign but malignant. In the process of removing the tumour my left facial nerve had been severed leaving the entire side of my face paralysed, and I was missing a large chunk of tissue where my left cheek should be.
What followed was an incredibly long and painful process of rehabilitation which included intense radiotherapy and a huge amount of regenerative plastic surgery. I’m pleased to say that due to the work by my outstanding team of surgeons, doctors and nurses at Beth Israel Medical Centre in New York I am now not only cancer-free but have also regained most of my movement and my face is pretty much back to normal.
But it took a long time to get there, and it was hard. Something that reasonated with me during that period of my life was the number of times I’ve sat in biopharmaceutical conferences and listened to well-meaning scientists and business managers talk about ‘what the patients want.’ With the best intentions in the world the suggestions put forward were so dramatically different from what I experienced.
Now, I’m certainly not speaking on behalf of all cancer patients here, I can only speak from my own experience. But let me put forward my top five suggestions of things that drug companies and healthcare providers should know about ‘what the patients want.’
When I found out what was happening, I wanted to know everything about it I could. I wanted to know exactly where the tumour had been found, which parts of the nerve had been severred, exactly where the replacement nerves from my leg would be attached and why, how the radiotherapy would work and which parts of my face it would target, what the side-effects were, what potential medication could be used to support it. To be fair to my doctors, they accomodated me in every way, and I was sent home daily with a new chart or diagram showing exactly what the progress was and where they’d be going next. But mentally, I juxtaposed that with the pharmacuetical advertisments shown on TV (at twice the normal volume and running for an absurdly long time while actually saying nothing). The information was vague, the benefits unexplained and absolutely no scientific information given. I appreciate these are advertisments and I’d hope that those patients given the drugs are given all of the information they require, not just about the drug but real information about the mechanisms of action and other options and versions available. Unfortunately I suspect this is not always the case, that very often drugs are prescribed with very little information about modes of action or explaination of all of the available options.
2. How could I help myself?
One of the mantras at my company is to work in your ‘Circle of Influence.’ That is, focus on what you can control and don’t let yourself become overwhelmed by things you can’t control. In a working environment it’s things like a global financial crisis or a client company going under. In my case it was, well, having cancer and no movement in half my face. The thing that got me through each and every day was always working towards whatever I could do to get better. Things like staying positive, like eating well, like keeping my sleep under control (I’m a bad sleeper at the best of times and I’m afraid in this case I had to revert to sleeping pills). Biopharma: the more information you can give your clinicians and patients about how to help themselves in addition to taking your treatment, the more empowered and appreciative your patient will be. And a small part of me really believes that this empowerment can have significant impact on recovery.
3. What supporting therapies were out there?
My lowest point, excluding that first moment of waking from the initial failed surgery, was about two weeks into my radiotherapy programme. I was so tired – a bone-aching tiredness that I have never experienced before or after. I was stressed out. I was close to tears at the drop of a hat. On one particularly bad morning my roomate suggested that I try accupunture. I knew a few people who’d used it successfully for a number of ailments, and some quick Googling bought up at least one paper suggesting that it reduced some of the symptoms of radiation. So after checking with my doctors, I gave it a go. Now it might have been a placebo effect, but after just one session my mood lifted considerably. Over the next ten weeks it dramatically reduced problems associated with radiation to the face, such as loss of hearing, and I firmly believe that it played a big part in the restoration of my facial movement (obviously along with the new nerve that I’d had stitched in to my face a few weeks earlier).
It ties in with the Circle of Influence thing, as I felt like the accupuncture allowed me to take more control of my own treatment in a manner which was positive and supportive to the medical treatment. Most pharmaceutical companies are exploring the idea of companion mobile apps to go alongside treatments. I would hope that these will include recommendations on diet, nutritents and other supporting therapies by way of educating patients about how to take control of their own recovery or disease management.
4. Other young people
I was twenty-six. Almost every other patient I met during that time was fifty or above. It was odd, and it was hard to explain to people what the problem was. I felt so very isolated. It wasn’t helped that my friends, while very supportive, didn’t really understand what my new day-to-day life was like. When I came back to the UK one of the charities that quickly caught my eye was Teenage Cancer Trust. This fantastic charity is dedicated to providing hospital zones for teenagers with cancer, that allow them identify with and befriend others in a similar situation. I think this is a fantastic initiative which makes a huge difference to these kids experience. Drug companies need to think the same way about their products. Paediatric drugs are certainly not as lucrative as most adult products. But they are important, and drug companies should be taking imore responsibility to developing adult products for young people, for ethical reasons as well as tangible benefits such as patent extensions.
5. Life to go on
My sanity was retained during my illness by my work. Every morning I left the hospital following treatment, picked up a Starbucks and walked the eight or nine blocks to the office. At work I was a manager, I was good at my job and respected by my colleagues and clients. At work I was in control. This sense of purpose was absolutely imperative to my peace of mind and the positive outlook that helped my recovery.
I was lucky in that radiotherapy is not a particularly invasive form of cancer treatment. However most forms of treatment out there do not allow their patients the luxary of working. Most forms of treatment render their patient too sick to do very much at all. Now I realise that this is a big ask, but I’m going to say it regardless. If you’re asking what your patients really want, it’s to get on with their lives and not let themselves be defined by their illness. The less invasive the treatment, the more they will be able to do this. So there’s your challenge Biopharma: how to make cancer drugs which are efficacious but allow people to continue to live their lives. Great progress has been made in the field of targeted cancer therapies, but there is still a very long way to go.
I hope some of what I’ve written here has reasonated with you. I’m a little wary about putting my personal experiences out like this for all to see, but I hope that it went a little way with helping you, Total Biopharma, to think about the patient in a different light. And I hope that you’ll continue to do your great work with this in mind. Please leave your thoughts or comments below, I’d love to hear from you.