Lymphoedema. How I’m preventing it from getting worse.

I have a very mild case of lymphoedema. I’d like to keep it that way!

If, like me, you’ve had lymph nodes removed - I’ve had a full clearance - it means you’re at high risk of lymphoedema. What is it and what am I doing to dodge the bullet?

Let’s start with “What is Lymphoedema?”

Simply put, it’s swelling.

It’s when lymph fluid builds up between the cells, normally in the arms or legs. It can’t drain or be reabsorbed properly because the lymph nodes either aren’t there or they’re not working properly to flush the lymph around the body.

So the fluid gets stuck in the extremities and can’t be reabsorbed and flushed through. At its worst, lymphoedema is painful, unsightly, causes reduced mobility and may lead to increased risk of infection. In severe cases, the lymph fluid can become hard and immovable, making it permanent.

Statistics say it affects around 20% of cancer, gynaecological and prostate patients.

But my guess is that figure is more as most people suffering a mild case won’t seek treatment for it.

I hadn’t heard about lymphoedema before having cancer. Now, lymphoedema prevention is a huge consideration in my lifestyle. I have a very mild case. I’d like to keep it that way. My fingers and hand are very slightly swollen - I can’t wear my old rings. Occasionally my hand, bicep and shoulder feel puffy and stiff.

So what am I doing to keep it under control?

Firstly, I exercise my upper body differently. I currently lift heavier weights than ever before. If you’ve read you shouldn’t lift weight if you have lymphoedema, that’s not true! But I’ve built up slowly to that.

My first set of reps is always with a very light weight, just to get things moving. Then I add more weight, finishing with the heaviest set. Getting your muscles moving physically pumps the lymph fluid around the body. And the stronger the muscles are the more effective they are.

My second favourite swimming pool in the world! (Playitas)

I swim at least once a week. Usually twice. It’s not my natural habitat. I swim like a brick. But the compression of the water and the gentle, repetitive overhead movement is amazing for lymphoedema prevention and control. I get out of the water and my hand and arm feel completely normal again. If I miss a swim, my left arm and shoulder feel a bit grumbly.

I don’t let anyone take my blood or do blood pressure tests on my left arm.

I keep an eye on it. I haven’t measured it but maybe I should.

I sleep with my hand and lower arm slightly elevate on a cushion. I’m not talking about raising it loads but just enough to allow gravity to work its magic during the night. I’m lucky that I’m a back sleeper and find this comfortable.

I stretch gently and move my arm around. A lot. It’s now become such a habit, I don’t notice I’m doing it. Nothing mega, just little circles, hand pumps, stretching my arm above my head, shoulder rolls. It’s enough to wake the muscles up and keep the fluid moving in the right direction throughout the day.

I no longer wear a running rucksack as I feel it inhibits my shoulder mobility. I would sometimes get home from a run with sausage fingers. So, I’ve swapped my old rucksack for a running vest, which fastens more evenly across my chest. It helps.

If I’m spending a long time in front of the computer, I avoid typing for long stretches without a break. A few little stretches at the desk is all it takes to keep the fluid moving.

And if it gets worse? I’m off to get a lymphoedema sleeve and start self massage.

Let me know if you have any other tips and tricks to help manage lymphoedema. Cancer really is the gift that keeps on giving, isn’t it? The things we now need to know about!