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Let’s Talk Lymphoedema: The Essential Guide to Everything You Need to Know

Let’s Talk Lymphoedema: The Essential Guide to Everything You Need to Know

Let's Talk Lymphoedema: The Essential Guide to Everything You Need to Know by Gemma Levine and Peter Mortimer to be published by Elliott & Thompson in May 2017. The authors have shared Gemma Levine's introduction with LE&RN in advance of the book's release.

Let's Talk Lymphoedema: The Essential Guide to Everything You Need to Know, Introduction by Gemma Levine

A few years ago I was diagnosed with breast cancer and had surgery to remove a tumour from my right breast and a mastectomy. Having gone through the trauma of chemotherapy and radiotherapy, shortly afterwards I discovered my arm was grossly swollen, reddish, felt heavy and hurt. I visited my surgeon who sad, ‘You have lymphoedema, that’s very unlucky.’

I did not know what lymphoedema was – I hadn’t even heard of it before. The nurse present thrust a small booklet into my hand and suggested I had a few sessions with Bernie Martin, a remedial massage specialist. Innocently I thought a series of six visits would cover it. It didn’t. I have since learnt it will last my lifetime.

A year ago, I took part in a BBC2 documentary and was filmed in my home. During the interview my local GP Dr Nazeer, came to visit. He asked how my lymphoedema was responding to self-management. I was wearing my compression sleeve as he examined my arm, whilst we had a brief discussion on the subject for no longer than two minutes. Some months later, on the night it was broadcast, I went to check my emails at the end of the programme. To my utter surprise, there were approximately forty. A few were personal, commenting on the programme. But the others were from people around the country asking question about my condition, some asking ‘what was lymphoedema?’, others commenting on the fact it was so rare to see it featured on TV.

Yvette, from the midlands said, ‘Lymphoedema awareness is so not out there… It is a restricted condition with misunderstood information, sadly with a growing audience out there too.’ Shaemus from Ireland wrote that, ‘Lymphoedema is the poor relation to cancer in respect of media attention.’

These remarks and the reaction to the TV documentary were a wake-up call for me. Ah! I thought. There’s a need here for a serious book, I started to do some research and then, armed with my new found facts, I visited my oncologist, Professor Paul Ellis, who called his colleague Peter Mortimer, Professor of Dermatological Medicine t St George’s and the Royal Marsden Hospitals, internationally known for his expertise in lymphoedema. When I eventually met him we discuss the concept of a book and agreed to combine our efforts. With his exceptional knowledge of this condition, there could be nobody better to collaborate with, to move the project forward in the right direction. A few weeks later we had a plan.

Since then, I have learnt and seen so much of the stages of the condition and various types affecting men, women and children. The onset of lymphoedema was gradual for me. My arm became heavy and thick, my skin became soft and pitted and my movements restricted. I cannot use my right arm for cutting or using scissors or handle large bars of soap when showering and can only wash my hair with my strong arm. I cannot carry parcels, nor lift items from high shelves, or place, or remove hot dishes from an oven, nor wear T-shirts or other close-fitting garments. I was advised not to travel on long flights therefore limit myself to a maximum of two or three hours. On flight my arm has to be elevated as the weightiness becomes excessive. But most important is the effect it has on my lifelong profession as a photographer. I can no longer hold heavy cameras. Recently I was fortunate to be able to purchase an Apple iPad which is light and easy to handle and allows me freedom of movement. I was astonished how I was able to achieve the same results with an iPad or even an iPhone as with my complicated professional cameras. Therefore, the quality of my work with Apple’s finest equipment enables me to continue my creativity and still derive the joy and fulfilment of my profession.

To maintain my quality of life I am disciplined with my exercise and new regime. I swim every morning and have devised a routine exercise programme (which is at the end of this book). I visit a regular lymphoedema specialist, Carmel Phelan, once a month to keep a measurement check on my arm, to administer manual lymphatic drainage and to change my compression garments if needed. I also use a machine which was sent to me from the USA, a ‘Bio-Compression’ pump with a gentle machine that moves up and down the arm rhythmically.

When you consider that most people are unaware of lymphoedema, I am frequently surprised by the people I’ve encountered who know of it only too well. Kristina, my friend from Finland told me her mother had lymphoedema in 1963 at the age of forty eight, in the same arm as myself. She had no real physiotherapy regularly but had instructions to massage herself daily. “She wore a bind around her arm, a sort of stretchy bandage from armpit to wrist. It was quite an effort, as she had no strength in the arm”. While in a restaurant in Venice, a waiter eyed my compression sleeve and asked, “What is the matter with your arm”? I replied “You won’t know what this is, it’s called Lymphoedema”, “Oh” he exclaimed. “Yes I do….. it is a reminder of a cancer operation you had, where you have been lucky enough to survive. What a meaningful reminder”. And recently when I was in Waitrose, Oxford Street and asked for ‘home delivery’, which I am reliant on as I cannot carry bags, I was told the driver was away sick. The manager, Annette, took the carrier bags from me and said she would assist me to the street and put me in a cab. On our way up the escalator, she asked what was wrong with my arm. I said, yet again, “You won’t know what this is, it is called Lymphoedema”.”Yes I do “she said and tears filled her eyes. “My best friend has just been told she has it and is in tremendous discomfort and doesn’t know what to do”. I then said I was about to publish a book on the subject and people could learn all the options of treating themselves. Annette said, “With the very little knowledge there is today of the condition, it will be one of the most valuable book and will help thousands of people”. With that she put her arms around me, hugged me and we parted.

The emotional and psychological effects of lymphoedema cannot be underestimated. From my experience it is essential that we have specialist consultants and practitioners to provide sufferers with the knowledge, advice and vital treatment that they need to cope with this condition.

“Let’s Talk Lymphoedema” is exactly what this book is all about. It is our aim to inform sufferers, friends and family of its debilitating and lifelong effects and help them to deal with those effects. We have contributions from the top professionals in the UK, Africa, Australia, India and USA, in a wide-ranging series of chapters. I have also photographed many patients; symbolic photographs that illustrate the workings of the lymphatic system; a micro surgery unit within a hospital; preparing bandaging and lymphatic drainage treatments; a compression garment factory in Germany and many more. But there was one image I couldn’t capture, a thirteenth-century sculpture from the Sun Temple at Konarak in Odisha. I’m afraid I was not alive at the time, nor had Apple invented the iPad!

This book is a powerful tool in the struggle to raise awareness of lymphoedema. It includes the most up-to-date information and advice from around the world and has a powerful message for suffers, that they are not alone or forgotten and that they still can lead rich and vibrant lives. I am profoundly privileged and proud, to collaborate with the experts in this country and worldwide in this publication, but one in particular, Professor Peter Mortimer who has devoted time and expertise to advancing this cause, which has been his lifelong endeavour.

GEMMA LEVINE FRSA