Lymphoedema Awareness Week - Warrington patient's story

Melanie O’Neill was diagnosed with lymphoedema, a long-term condition that causes swelling in the body's tissues, around six years ago while she was under going treatment for inflammatory breast cancer which had spread to the lymphatic vessels of her skin.

The chemotherapy partly led to Mel developing the condition, which is often a main cause, as well as the type of cancer she had due to it being in the lymphatic vessels.

When Mel, who is known for bravely blogging and vlogging her experience with cancer, was first diagnosed with lymphoedema, her hand and arm were extremely swollen meaning she was unable to perform many tasks.

“I couldn’t do anything, I couldn’t fasten buttons up or anything,” said Mel, who receives treatment from specialist lymphoedema therapist Emma Gwynne at Warrington and Halton Hospitals NHS Teaching Trust, said.

“I did a video before I met Emma when I still had cancer and was having treatment, but I wasn’t having anything done for my lymphoedema.

“My arm and hand were so swollen that they just throbbed all of the time.

“I remember I was doing a vlog and I was just crying.

“I just wanted to them to stop throbbing, I couldn’t bend my fingers because they were that swollen, my hand was just locked.”

Now, Mel, from Penketh, regularly sees Emma for treatment and her lymphoedema is more under control and she isn’t in pain.

We sat down with the pair ahead of Lymphoedema Awareness Week, which takes place from March 4 to March 10, to find out more about the condition, which cannot be cured but can be controlled, and to hear why the week is so important for not only lymphoedema patients but also members of the public.

Emma, who works at Halton Hospital’s Delamere Centre in a team of just her and one assistant, explained how the earlier people access lymphoedema services, the easier the condition is to treat.

If the lymphoedema is at a much later stage, it is harder to reduce the swelling in the long term and a different level of treatment and intervention is required.

“Lymphoedema Awareness Week happens every year,” Emma said.

“It is important for supporting patients that do have lymphoedema so they know that they are not alone.

“For a lot of people, it is difficult going to the shops, especially in summer if you’re wearing a leg or arm compression.

“People will go up to them and ask ‘why are you wearing that?’ or ‘what have you done’?

“By raising awareness then hopefully people are a bit more understanding and feel like they don’t need to ask people in public about what they have done or what has happened, they’ll just think ‘oh, you’ve got lymphoedema’.”

Also speaking about awareness, Mel, who is in remission, added: “It is nice to know that you are not on your own and that there are people to relate to.

“I think when you have it yourself, you think you’re the only person going through what you are going through, and knowing there are other people out there really does help.”

Mel spoke of how she is confident wearing her compression sleeve in public but recognised how this is not the case for everyone.

By not wearing a compression sleeve, the limbs swell up and can cause uncomfortableness for those with the condition.

“I do makeup and facials, so I can’t always wear my sleeve when I’m in work, but when I don’t wear it, my arm swells up more, so it is like a Catch-22,” Mel said.

“I just wear it as often as I can.”

Mel’s treatment consists of regular oscillation therapy and twice a year, she attends the Delamere Centre every day for three weeks for compression and bandage work.

“I will always have lymphoedema unfortunately, but it is what it is and I think because I’ve been through cancer for so long, I’m just grateful I even still have my arm,” Mel said.

“I am grateful for a lot of small things, so yes I have got a fat arm, but I’m just grateful that I have it.

“It isn’t painful, I can live with it, it is me, and I am lucky to be alive.

“Life goes on with lymphoedema, it isn’t the end.”

Mel encouraged anyone who has symptoms of lymphoedema to see Emma.

“There is only one Emma, but there should be 10 Emma’s,” Mel said.

“She is just so passionate and knows her stuff from back to front.

“She just makes me feel so much better about myself and gets everything under control.”

For those with lymphoedema symptoms, specialist nurses can refer in, or their consultants and GPs can refer in also, and patients can access through the self-referral form on here Cancer Rehabilitation • Livewire (livewirewarrington.co.uk)

Symptoms

The main symptom of lymphoedema is swelling in all or part of a limb or another part of the body. It can be difficult to fit into clothes, and jewellery and watches can feel tight.

At first, the swelling may be soft and easy to push in, leaving a dent, and may come and go. It may get worse during the day and go down overnight. Without treatment, it will usually become more severe and persistent.

Other symptoms in an affected body part can include:

• an aching, heavy feeling
• difficulty with movement
• repeated skin infections
• developing hard, tight or thickened skin
• folds developing in the skin
• wart-like growths developing on the skin
• fluid leaking through the skin

Signs of lymphoedema in the head and neck may include swelling or heaviness in the face, mouth or throat, and problems with swallowing and speech.

Diagnosis

People with typical symptoms of lymphoedema, such as swelling in their arms and legs, should see a GP.

They may refer you to a specialist lymphoedema treatment centre for further assessment.

In many cases, lymphoedema can be diagnosed from your symptoms and medical history, and by examining the affected body part and measuring the distance around it to see if it's enlarged.

Occasionally, further tests may be necessary to assess and monitor your condition.

If you're being treated for cancer and are at risk of developing lymphoedema, you'll be monitored for it afterwards.