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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Conversation with Helen Hunter

Author: Gaynor Leech Founder of L-W-O


Helen wishes for a holistic approach to treating those living with lymphoedema?


Retired from The Queen Alexandra Hospital Helen Hunter was officially diagnosed with lymphoedema in 2017 although she had an inkling before this and her personal feeling was that she had lymphoedema from about the age of 11, if not from birth.


A Holistic Approach


The most difficult part about living with lymphoedema is the lack of understanding, even by the specialists. Helen has been given differing advice about massage and compression. She like many of us living with lymphoedema had been told that lymphoedema is not painful, which she now knows is not the case.


“I find that many specialists fail to look at the patient in a holistic manner. It was very easy to look at my endometrial cancer in 2017 and attribute my lymphoedema to that. However, I had a perforated appendix and peritonitis age 11 and various other abdominal surgeries plus a car accident affecting my leg. I can remember having a swollen left leg from a very early age.”


According to Cancer Research UK one in two of us are estimated to have cancer within our lifetime, and one in every five breast cancer patients are likely to be diagnosed with  lymphoedema, this is higher in some other cancers.  “I would like there to be much better provision of care. I would like to see care standardised throughout the country. I would like medical practitioners and surgeons to have a better understanding of the condition. I would like for specialists to look at patients in a holistic manner and understand that Lymphoedema is not just swelling.”


The relief Helen felt to finally get a diagnosis was immense because she had been told that she was being over anxious having had cancer.  The Lymphoedema Support Network (LSN) have produced a useful guide that will help those of us living with lymphoedema. as our members on L-W-O tell us getting a practical assessment of lymphoedema is a real struggle.


Talking about feelings


Her Husband understands how her lymphoedema makes her feel, but she does feel that other family and friends don’t. “I find it difficult to tell people how I am really feeling and try to keep cheerful, even when I am in pain. I do sometimes feel I am my own worst enemy because I find it difficult to be honest about how I am feeling.”


The Financial Cost


Helen gets on very well with her GP but was told two weeks after a radical hysterectomy that it was too soon to diagnose lymphoedema, even though her leg was swollen and looked strange. “I have had to trawl the internet and go privately to get a definitive diagnosis as there is no provision for lymphoedema care anywhere near where I live”.  She does get two pairs of compression tights every six months on the NHS but apart from that, must pay privately for everything else.


Online Support Groups


Helen joined our L-W-O support group in October 2018.  “When I joined my first online support group, I became quite emotional when I was welcomed by people from all around the world. I love the fact that someone can post a question and for it to be answered by other people who may be able to help. The support groups make me feel that I have a voice and that it is heard by people who truly understand. I no longer feel alone.”


Lymphoedema does not define me 


“I have learned along the way that, if we do not do all that we can to help ourselves, then we are the only ones who suffer. I am determined that lymphoedema should not stop me from living life to the full. I have learned that I am not lymphoedema patient but rather a patient with lymphoedema. My condition does not and should not define me. I have learned to listen to my body and trust in my instincts as I am the one who knows my body best. I have learned that it is okay to feel down at times and I have learned to be kind to myself and take time for what I need.”


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