Alan's story

Alan was diagnosed with lymphoedema in 2009 after a cardiac bypass operation. Lymphoedema is an incurable condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.  The consultant who carried out Alan's operation noticed that he had Lymphoedema and up until then Alan was unaware on the condition. The type of lymphoedema that Alan has isn’t cancerous, but is instead associated with trauma. 

Alan’s lymphoedema affects both his legs below his knees and he’s been coming the Hospice for treatment since 2014. Alan explains that his lymphoedema can affect his mobility due to the swelling on his legs, but he tries to keep as mobile as possible, still doing the things he would normally do.

Alan attends the lymphoedema clinic at the Hospice once a fortnight When he was first referred, he came to the Hospice more frequently for bandages to be put on, but he raised the issue that coming back and forth for this to be done was inconvenient. He now wears compression bandages everyday, which he can do himself at home.

Alan’s appointments are with our Lymphoedema Team Leader, Rachel, she also helps him with an exercise plan for his Arthritis as Rachel is a qualified physiotherapist. Alan said he was able to speak with Rachel and discuss treatment patterns that were suitable for him rather, than just being given a plan.   

Alan told us; “Having someone that you can talk to like Rachel, helps because there’s not many people you can talk to about Lymphoedema because it’s not a thing that people are very knowledgeable about.”  

Alan said a typical appointment starts with Rachel asking him how he’s been getting since his last appointment and how he’s been feeling. She will then check his legs and measure them to keep a record of any changes.  

When speaking about other people’s perceptions of a Hospice Alan said; “If I was to say to a friend or family member, I’ve got an appointment at the Hospice tomorrow, the first thing that would probably come to their mind is Cancer, but it’s not the only thing that happens here.”   

Alan told us he’s now used to coming to the Hospice and he finds it no different than going to the doctors.  He said; “Before I had the compression bandages on, my leg used to swell out further than what it does now.”

When we asked Alan about how the Hospice has helped him with his condition, he said; “If this service wasn’t available there wouldn’t be anyone to talk to about it, so that’s the main benefit. Initially when someone mentions you have to go to the Hospice you think well, I must be getting to a pretty bad state because you’re connected with end of life care, but I’ve been coming here for four or five years now and you do realise that there is other things going off.” 


 

Back in June Alan met MP Yvette Cooper after his lymphoedema appointment. Visiting the Hospice was an opportunity for Yvette to hear more about developments in Hospice care.​

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