Sometimes just being there can ease the pain
So finding your life-saving treatment has left you with an incurable, debilitating condition seems particularly cruel.
That is what happened to Gwen Williams – and although most patients are not affected, she is far from alone.
Removal of underarm lymph nodes as part of her treatment led to Gwen developing lymphoedema.
Fluid builds up in her arm causing it to swell and ache and she now faces a lifelong battle to control it.
There are many different causes of lymphoedema, which usually affects the arms or legs.
Some people are born with the condition, others develop it after surgery or injury.
It is thought to affect almost a quarter of a million people in the UK, with many cases being undiagnosed.
They may struggle to cope and find it isolating, especially if it causes severe swelling.
But sufferers in west Suffolk can turn to a souce of support that many do not have.
Lymphoedema Support Suffolk (LSS) is a group of men and women with the condition, or the similar disorder lipoedema.
They meet regularly in Bury St Edmunds to share concerns, get advice, benefit from the latest information. take part in exercise therapy, and – just as important – build friendships.
And they also raise money to buy equipment for the local Lymphoedema Service, and work to promote better awareness among health
Support also comes from the wider community with Bury Lions and Newmarket Waitrose among those who have helped raise funds.
Gwen is a founder member of the group and, although they like to keep things informal with no official titles, acts as a “by default” secretary.
“You don’t have to sign up and become a member, just come along,” she says.
The group, which is attended by people from all over west Suffolk, is run by a small committee of half a dozen patients.
Nurse consultant and service manager Diana Cheevers takes the lead in meetings.
“I’d never heard of lymphoedema until I was told I had it,” says Gwen, who lives in Bury with her partner of 38 years, Peter Day.
“I had an operation for breast cancer in 2010. They removed lymph nodes under my arm to test the cancer hadn’t spread.
“When I got the symptoms several months later, I thought it was because I was still recovering from surgery and radiotherapy.
“My arm was aching and swelling up, and felt heavy ... like when you have your blood pressure taken, and your arm is squeezed.
“I’ve just celebrated my five year all-clear from cancer, but have to live with, cope and manage my condition every day. It’s meant big changes to my life.”
Lymphoedema happens when the lymph nodes or vessels are damaged or blocked. The lymph fluid, which helps remove waste from the body, cannot pass through and the system becomes overloaded and causes swelling.
“It occurs in men and women, young or old,” said Gwen. “The youngest member of our support group was born with it, and is only 18.
“When I was diagnosed I had to get funding from my GP for treatment. I was prescribed a compression sleeve to reduce the swelling, and I had massage from a nurse specialist to encourage the lymphatic system to start moving again. Now I do 15 minutes of massage every morning.”
With her compression sleeve concealed under the long sleeves of her top, Gwen’s lymphoedema is not always noticable. But she says some people suffer with massively swollen limbs.
Even so, it impacts on every part of her daily life. She had to give up her job as regional organiser for the union Unison because she could no longer cope with the amount of driving involved.
“It took me a long time to get my head around getting the condition because it affected how I do everything.
“One of the things is fatigue. You get tired and feel sluggish because the system isn’t working properly.
“That’s why the support group is so useful. You talk to other patients and find out what’s normal for people with the condition.
“I can’t lift things like I used to, and can’t do yoga any more because I can’t weight-bear on my arms.
“I also have to be careful of getting cuts or scratches and carry a mini first aid kit everywhere because they can easily get infected.”
The sun and heat affects it too so I always have to wear sleeves.
Sometimes it’s more bearable than others but affected limbs feel constantly heavy. If I buy a new coat I get one with a pocket I can put my hand into, so it’s supported.”
Gwen and other members of the group are now benefiting from a little-known exercise that helps get the lymphatic system moving.
The sessions led by Jane Langston are a popular feature of LSS meetings, which take place at Bury’s Moreton Hall Community Centre.
She teaches tripudio, which is specially-designed to be adaptable for people with widely varying levels of strength and mobility.
Jane, from Elmswell, attends the group as therapist and patient. She discovered she had lipoedema when she took her mother Elizabeth Davies along to a clinic.
“The nurse who was treating Mum said, do you realise it runs in families. She looked at my legs and told me I had early stage lipoedema. I thought I just had slightly chunky legs.”
Jane used to work in hospitals as a biomedical scientist before retraining to practice the complimentary therapy amatsu.
So when she found out about tripudio she already had a keen understanding of how the body works.
“I went along to a workshop with my mother, and they talked about this exercise that helps drain lymph. They showed people doing a kind of slow dance, and it looked such fun.
“As part of my own work I have to do two days of professional development every year, so I went and trained in tripudio.
“By this time I was on the committee of LSS and said I would be happy to put on a session for them.”
Jane is one of only a handful of people in East Anglia who are trained to do the therapy.
“The wonderful thing about this exercise is that it can be done lying in bed, sitting or standing, and I tailored it to the needs of the group.
“But if you had a completely able-bodied person it would still be useful because it encourges lymph flow.
“When I was training the scientist in me made me take some measurements. During the course I lost eight centimetres from my waist and three or four from my thighs.
“I get a lot out of attending the support group. And it is profoundly moving to see people on mobility scooters and in chairs all taking part in an exercise class.”
Next month the group will be joining others across the country taking part in national Lymphoedema Awareness Week. They have an awareness day on Friday March 11 at Moreton Hall Community Centre.
The next group meeting is at the centre on February 22 from 7pm to 9pm. For more information call Suffolk GP Federation CIC on 0845 241 3313
(option 3), or go to the website www.suffolkfed.org.uk.