Craig's Lymphoedema Story

“The service and the staff are absolutely wonderful. I'd be absolutely lost without them.”

Craig has been a long-standing patient of our Lymphoedema Clinic, ever since his symptoms came through in 2013-2014. Now he comes to us for intensive treatment – and despite the toll this can take on him, it’s something he always looks forward to thanks to the kindness, compassion and humour of our team:

“I first developed lymphoedema 11 years ago, when I was bitten by my kitten on my foot. I thought absolutely nothing of it whatsoever, then I was in bed that night I noticed my leg had just completely ballooned up, so I went straight to hospital. They thought it was just an infection, so I got antibiotics and I basically expected that my leg would go down.

Years later, obviously, it hasn’t gone down!

I was fortunate that the GP that I saw was a younger doctor because a lot of the older doctors don't actually know about it [lymphoedema] whatsoever, and that's one of the strangest things I've found on this journey – the lack of experience on it. Push came to shove, and she referred me to lymphoedema, and I came for the first time in 2014.

I was given a treatment plan, and I was given loads of booklets to read, to take home, with advice and stuff. I was fitted with garments first of all – compression garments – and then I was told I would come for treatment once every six weeks, which at that point in time actually was the best practice.

Subsequently, that's actually changed, and they now do, for certain people, intensive treatment where I come for basically like a three-week block, once a year and I've been having that now for about the last six years.

In a three-week block, I'll come Monday, Wednesday and Friday. I'll start off with getting a specialist massage done, where they'll massage all of my front, all of the back and they will basically try to open up every single lymph node that they possibly can.

Then I get put in a compression machine, which goes over both legs and it kind of squeezes the leg. Following that I get a multi-layered bandage, where I'll basically get about four lots of bandaging on my leg, so it’s as tight as it can possibly be. That stays on for two days and then we start again on the Wednesday and start again on the Friday.

That's normally followed up three months later by a check-up. And then I'll have another check-up in normally about autumn time. I thought it was standard, just the same treatment for everyone. But that's one of the things to say about the hospice – the fact it's very much tailored treatment. Every single person that has lymphoedema has almost a different kind of condition to it, or it's in the arm, it's in the leg. So it's not possible just to treat every person carte blanche.

I wear the tightest possible compression stockings, but an old lady who's in their 80s, there’s no way! So that's that is one of the main points about here, they do actually tailor it for everyone.

The service and the staff are absolutely wonderful. I'd be absolutely lost without them.

And it goes beyond the actual treatments I get; they’re always a phone call away. I've had loads of help with my medical pension, they wrote letters for me, they filled in forms they’ve made phone calls, contacted my GP about medication – they fight the battles for you. They give you a lifestyle advice. They’re just wonderful.

I come for my three-week treatment, which is very, very hard, and I actually look forward to coming. And that's probably the best testament I can give, really. They’re wonderful.”