David’s Lymphoedema Story

Shortly after having surgery for prostate cancer in 2018, David began to notice swelling in his leg – unbeknown to him, he had developed lymphoedema. David was eventually referred to our Lymphoedema Clinic and as he describes below, he immediately saw a light at the end of the tunnel.

We sat down with David and his wife Belinda to find out more about their journey and experience with our Lymphoedema Clinic:

“Back in 2018, I had surgery for aggressive prostate cancer. In the following year or so, my leg started filling up with fluid, getting bigger and bigger until I was having to buy trousers multiple sizes too big, and shoes in two different sizes just to fit the affected limb.

The GP who was treating me believed it was a water infection and gave me tablets but they didn’t work. I then developed an infection in my leg – which we later found out was cellulitis, due to the lymphoedema – and was taken to James Cook. My leg was really hot, I was feverish, and I was shaking so badly I couldn’t even put my shoes on.

Eventually, I was referred to the Teesside Hospice Lymphoedema Clinic.

Once the referral had been made, the clinic got us in quickly and as soon as we were here, all the concerns about what was going on all went. I was told everyone here knows what they’re talking about and they could do something about it, which was a massive relief.

And now 6 years on, 8 years after the surgery, my condition is managed.

Until we came to the clinic, we didn’t know a great deal about lymphoedema and that side effect of my cancer hadn’t really been explained, but as soon as I came here, I knew someone was going to help me.

I had an initial assessment with measurements for limb volumes, then I got measured up for compression garments for through the day and nightwear. We also tried the compression machine on my legs. By this point I’d already been wearing the garments and they had already reduced the swelling substantially, so the team said that the machine might not show that much difference, but it did.

Now, I just keep using the garments and doing my skincare massage techniques with the creams prescribed. The skincare has made a huge, huge difference. It’s absolutely fantastic if you use it. The team at the Lymphoedema Clinic told me what I can do to help myself and that makes a big difference. You need to be consistent, but they really do help you manage the condition yourself.

Originally, I was just given one garment. I started wearing this almost immediately after my treatment started and it does work, but through the night when I took it off and was laid in bed, the fluid was filling back up in my leg. I spoke with the team and they gave me a night garment, which isn’t as restrictive and that helps so much.

I’ve been coming to the clinic for a regular review every 6 months, and now that the lymphoedema is now at a point where it’s well controlled, I may be discharged with my garments to be monitored by my GP. I’m glad about that – it means the time here can be given to someone who was in the same position I was in 6 years ago.

I’m comfortable and know how to manage my lymphoedema now, but I know that if I ever need to, I’m able to come back for support.

The condition isn’t curable, but it’s controllable. And I’ve now got the understanding that it’s not going to go away, but there’s something I can do about it and I’m still here, I’m still alive.

If anyone’s in the same situation as us, I would recommend the clinic to anyone.

It’s been outstanding – nothing scary at all. We couldn’t thank you enough, we really couldn’t.”

To find out more about our Lymphoedema Clinic, the work we do and referrals, please visit the clinic’s web page.