A view from the other side of the fence

Last Saturday marked a year since Ellie died, a day I remember like it was yesterday but a year which has undoubtedly been the longest of my life. Despite this I’ve been hugely touched by all the people who have contacted me via the charity and written lovely things about Ellie and how inspiring she was, and still is, and we’re very proud to have established a registered charity in her name and memory.

Our logo, designed in collaboration with our friends at B&B.

Our logo, designed in collaboration with our friends at B&B.

We received our charity number last week and, as you may already have seen, we have a logo for Ellie’s Friends, so our main focus now is to develop the website of that name. It will enable people living with cancer to search by location and category for the services and support available to them and we will also continue to build a national network of service providers who wish to offer their skills or products for free or at a discounted rate.

As well as the many kind offers of help, many people have also enquired about donating to the charity and we have finally set up a donation page, which you can visit at https://mydonate.bt.com/charities/theeleanorrosefoundation.

We are hoping that we can find web developers who are willing to help us build Ellie’s Friends free of charge or at a significantly reduced rate and there will obviously be running costs of the site as we keep it up to date and approach service providers to grow the network. Whatever we do, we aim to make any donations stretch as far as possible and anyone who knows me will know that this is a particular skill of mine! Thank you to anyone and everyone who takes the time to donate.

In the meantime I would like to post a short piece that ‘Professor Hope’, Justin Stebbing, kindly wrote about Ellie and how she touched his life. Ellie wrote a lot about him and how his positivity motivated her, so it was interesting to me to get his perspective on a patient whose situation clearly affected him just as much.

Tom

Ellie and Me

I still read writtenoff.net. There’s just something about it. I shouldn’t but I do. It’s hard not to use glib words that sound clichéd, but it simply transcends any descriptions of who we are and what we may, or may not be. Making the big C smaller is my own life’s dream, but Ellie captured being on the receiving end of the big C better than anyone I have ever encountered with overwhelming power, energy, simplicity, humility and beauty. Everyone is special, and the more one knows someone the more special they are and can be, but as a hardened oncologist Ellie’s story, her love for life, and what ultimately happened, is enough to make one cry, laugh and for me anyway feel unbelievably privileged and blessed to have looked after Ellie, and know her in the way I did. Whenever I think we are getting somewhere and we’re getting good at oncology, reducing the death rate, I think of Ellie and that for all our successes, she died 3 weeks before she was due to marry Tom. If that’s not failure, I don’t know what is.

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Ellie’s oncologist and our charity patron, Professor Justin Stebbing

I remember first meeting Ellie and Tom. It’s worth mentioning that no two patients are ever the same which is a problem for trials of the latest therapy or diagnostic test, in which patients are grouped by necessity. We first met on Harley Street but then straight away I started caring for her on the NHS. She had an aggressive cancer – anyone’s cancer can be rapidly proliferative and divide quickly, but younger people’s tumours often are. One shouldn’t get involved, and one should remain detached – by whatever mechanism (my favourite one being busy, running a large research team and burying my head in the sand). It’s important to provide choices, not to judge people and do one’s utmost to prolong both quantity and quality of life and that’s all I wanted to do. I didn’t realise until a few months into Ellie’s treatment that she was describing our consultations on her blog.

On reading it one was immediately struck by the intense quality of the writing, and an ability to bring humour into a very dark area. It was accurate and precise but more than this for the first time in my experience and career described the quiet unwritten communication that occurs between a doctor and a patient, their friends or relatives. That’s not easy – it can’t be by definition – because I have never seen or read it before. I don’t know if it’s a good thing or not that I found out because once a doctor knows about it, it introduces a different dynamic into a consultation. Here though, it worked beautifully, and even though Ellie was a journalist, it wasn’t trained and she was clearly an amazing writer and chronicler of human dynamics. I don’t think one can teach communications skills and Ellie had those with overflowing abundance.

From an oncologist’s perspective her illness was doubly cruel. Not only was she very young, but the second whammy was that it was a very difficult type of cancer to treat, with a lack of targeted therapies available. We tried hard to enable Ellie to receive a targeted new experimental drug, called a fibroblast growth factor receptor antibody and the great news here was that we biopsied her tumour and it had high expression of the receptor on the cancer cells, which one needed to be included in the trial (high expression or high levels of the receptor was uncommon). But, Ellie was excluded from it due to a problem with the back of one of her eyes – damn small print, there to protect patients but sometimes a little anti-inclusive.

The blog describes in pragmatic detail Ellie’s journey from her ‘current oncologist’ to me. One of the problems with British medicine is doctors can feel like they own patients in their own parochial manner. Surely when one has a young patient or anyone for that matter with a difficult cancer there’s no harm asking for help. Ellie’s previous consultant who I don’t know from Adam, was wrong to say I’d charge her a fortune for an expensive cancer drug if she came to see me. It’s extraordinary to say such a thing to a patient. I hadn’t charged Ellie and Tom when I saw them privately let alone even think for one second about charging them for medicines which could cost a fortune but I am embarrassed as a medical professional that some of my erstwhile colleagues can treat people this way – to destroy hope.  This is one aspect of patient care the blog describes with a reality that’s almost too present, and it is present on many occasions throughout the blog. I am not sure how Ellie wrote with such clarity, often describing little minutiae while keeping it big picture.

As Ellie’s illness progressed and we tried different treatments with varying degrees of success, I felt so proud that at least Ellie was likely to make her long planned wedding to Tom. How wrong I was. I felt so lucky that Ellie was raising money for my charity (a sponsored shave headed day!), Action Against Cancer, to help fund PhD students and laboratory work aiming for a cure for this dreadful illness – with the biggest risk that we don’t take enough risks. My heroes are people like Ellie, and those students working their guts out to make a difference. The work of these scientists is distilled into manuscripts frozen in place and time, presenting data devoid of feeling and emotion. This missive and the blog are different. The blog just makes you stop and think, about what’s important in life, where we are and where we should go, from how to treat people when we meet them to how do we start to cure this disease.

The Eleanor Rose Foundation which has now been established aims to simply help people with cancer have a better life – a fitting testament to Ellie. I am hugely honoured to be a patron of this. We can’t just focus on new drugs and clever molecules without realising the very human cost and humanity behind an illness that affects 1 in 3 people with 1 in 4 people dying from cancer.

Nice people and not nice people, young and old, good and not good, men and women, right, left, gay, straight, tall, short, fat, thin…anyone…can develop cancer. I was recently told that as oncologists we only have a certain number of patients in us and once we’ve exceeded that we have to give up. Ellie was truly amazing, a light in the world, and The Eleanor Rose Foundation is ensuring her legacy will outlast all of our lives, which is the most fitting tribute to a most beautiful young woman, who I will never forget. The world is a much better place for having had Ellie in it, and a worse one for losing her but maybe one day we can cure this illness, and Ellie will have helped with this.

Justin Stebbing

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