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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Conversation with Rhian James

Author: Gaynor Leech Founder of L-W-O

 

Rhian loves to travel and while her lymphoedema doesn’t stop her travelling, planning is very much a part of her trips.

 

Rhian James was first diagnosed with Lymphoedema in 2011, five months after a mastectomy (having had a lumpectomy in 1995) she and her husband had come back from a cruise and had a quick turn round to go and visit their son who lives in Berlin.  Before travelling to Berlin, they decided to take down the runner bean sticks in their garden.  Her hand started aching, but she wanted to help finish the job before they travelled again. In her own words Rhian said, “this was a big mistake”.  

 

Rhian - river cruise on the Danube 2019


When they got to Berlin her son commentated on her ‘fat’ hand and she realised quickly that this was lymphoedema.  Rhian was angry with herself and rang her Breast Care nurse as soon as she returned home to the UK only to realise that she needed her GP to refer her to the Lymphoedema clinic.  This was when Rhian realised that her lymphoedema future was ‘ALL ABOUT FUNDING’ she was already a patient but to get into the Lymphoedema clinic she needed a referral.

 
It took over 3 months for the appointment to come through.  Well, “that’s not true”, the fact is that Rhian rang/asked questions/ and made a nuisance of herself for several weeks until they squeezed her in at the end of a clinic. By now her arm was 30% larger than the other one. 

 

Treatment with Lymphatic Drainage


The clinic taught her simple lymphatic drainage (SLD) and gave her two compression sleeves and told her they’d see her in 3 months.  Rhian then searched for and paid for her own manual lymphatic drainage (MLD) and wore her sleeve every day. She couldn’t get a referral to her local hospice where they offer MLD because “I was doing so well managing my own treatment”. 


On their next visit to Berlin her son had booked her four appointments with his local physio as they are all trained to do MLD. They were great but this is expensive. It became her Birthday/Christmas presents.  Her arm reduced over time and is now down to 4% larger than the left arm.   You can find a list of trained therapists in the UK at: MLD UK.

 

Cellulitis

 

She has been discharged from the clinic and the only support Rhian receives is two compression sleeves every 3 months and emergency antibiotics in case she gets cellulitis, which she has been diagnosed with three times.  It’s a continuous struggle and Rhian has recently had another bout of cellulitis. She has seen a new GP at her surgery who assured her that she only needed a week of antibiotics yet the joint British Lymphology Society (BLS) and Lymphoedema Support Network (LSN)  Consensus Document on the Management of Cellulitis in Lymphoedema clearly states ‘no less than 14 days’ of antibiotics.  As this was Rhian’s third bout of cellulitis, she knew that she needed a fortnights course. The GP gave her a prescription eventually on condition she wouldn’t use them unless it was necessary.  Sadly, this is very much the experience of members from our L-W-O support group who not only have had to become ‘expert patients’ but constantly have to battle HCP’s who think they no better.  At the recent MLDUK19 Conference Paul Thiruchelvam Consultant Breast Care Surgeon at Imperial College Healthcare NHS Trust stated that doctors receive one hours training over 4 years in the Lymphatic System.


Rhian wishes that GP’s knew more about Lymphoedema and Cellulitis. She knows exactly what to do when cellulitis is about to strike, and this always impresses HCP’s but this is of little help when you are feeling poorly and you are having to explain about lymphoedema and cellulitis. 


Family & Friends

 

Family and friends are very supportive and sympathetic, when the weather is hot/cold and wearing her sleeve is difficult. “I wear it every day as if I don’t my arm aches.” Her husband is also supportive as living with lymphoedema has changed their lives in many ways. Rhian can no longer help in the garden she loves, and she does wear gloves to protect her hands, but her hand soon aches after a very short time.  She needs help with housework.

 

Choosing a holiday destination and the time of year is so important as “I can’t tolerate the heat and must be so careful about bites stings etc therefore planning is necessary”. 

 

Rhian - Torquay 2018


Support Group

 

Rhian, who is a retired teacher, joined L-W-O in July 2014 and I am grateful to her for her continued support over the last five years and the support she gives other members.  In her own words: “ I’ve had great support from the L-W-O support group, I feel a valued member of the group, both giving advice and receiving it when needed. We’re all learning from each other’s experience”.


 

 

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