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Posted on behalf of Professor Frances Rapport, Professor of Qualitative Health Research, College of Medicine, Swansea University.
I am going under the clippers tomorrow (Friday, August 23) to raise money for one of cancer’s best-kept secrets – the devastating effects of lymphoedema.
The award-winning Lara Johnson of Lara Johnson Lifestyle has kindly volunteered to help me ‘do a Jessie J’ starting at 10.30am, at The Hub, Institute of Life Science 2, in an attempt to raise awareness – and around £3,000 – for lymphoedema services in Wales. We will be joined by University colleagues and representatives from the Singleton Hospital Lymphoedema group, including Ena Niedergang, who will say a few words about her experience of living with the condition.
Lymphoedema affects around 7,000 people in Wales (that’s around two and half percent of the population). Cruelly, it frequently strikes after surgery for breast cancer, as if that hadn’t been devastating enough.
I became aware of the condition after observing interviews with women who attend the lymphoedema clinic at Singleton Hospital, Swansea. The interviews are conducted by one of my PhD students, Angela Williams, who is learning more about the tremendous impact of living with lymphoedema after breast cancer treatment.
I was immensely moved by stories of the unrelenting impact of the lymphoedema and how stoic the ladies are in the face of the condition.
One such account was from Kate: “When I was diagnosed with breast cancer 14 years ago and had surgery, chemotherapy, radiotherapy and a further four years of drug treatment, I thought that was it; a successful cure and carry on with life. Twelve years after the original diagnosis I developed lymphoedemain my right arm as a result of the surgery. It was a shock. Lymphoedema affects almost all aspects of daily living and any activity requires careful planning if it’s not to exacerbate the condition. All chores with repetitive movements of the arm such as ironing, hoovering, cleaning windows, mopping floors and digging the garden, are carried out slowly and painfully. “
“I’m lucky to live close to the lymphoedema clinic in Swansea. People with lymphoedema need regular assessment and treatment at a clinic with trained staff and specialist equipment. As well as treatment, expert advice on how to cope with living with lymphoedema is essential. I will always have lymphoedema but have learnt, with the clinic’s help, to manage the condition, to remain independent, function at work, enjoy a social life, to work around it and carry on with that life.”
My campaign is supported by Tenovus, Maggie’s Centre and the Lymphoedema Support Network. I hope to raise sufficient money to buy a much-needed intermittent pneumatic compression (IPC) system and 12 chamber arm and leg garments that can be loaned to patients of the Singleton Hospital lymphoedema clinic as part of their therapy.
In addition, money raised will buy garments and other kit that will contribute to equipping the mobile lymphoedema unit that Tenovus is launching in October to serve all the Welsh Health Boards. The money will be raised via the St David’s Medical Foundation and all of it will go towards the above goals.
We have raised £1,800 so far and I hope the event on Friday will be a big boost in reaching the target of £3,000.
If you would like to follow me and spread the word, you can do so on Twitter at @frapport and using the hashtag #acloseshave, or like my Facebook page “Shaving my head for lymphoedema research”.
Donations can be made via the Just Giving website – http://www.justgiving.com/lymphoedema or by contacting the St David’s Medical Foundation at http://www.stdavidsmedicalfoundation.com and email@example.com.
- Thursday 22 August 2013 01.00 BST
- Thursday 22 August 2013 15.04 BST
- Swansea University, Tel: 01792 295049