Since 2019 Peter has been diagnosed with three cancers – non-Hodgkin lymphoma and different types of melanoma. After an operation to remove lymph nodes from his abdomen in 2024, Peter developed lymphoedema in his leg.
Together with the support of his wife, Una, at home and the expert guidance of our specialist lymphoedema nurse, Kate, he’s now got the swelling under control.
I noticed my leg was getting a bit bigger when I was in hospital, still recovering from my operation. I found out later that this was due to a build up of lymphatic fluid, because the lymph nodes were no longer there to help it drain away.
I kept on mentioning it. We thought perhaps they’d taken a drain out too early after my operation, which was making the leg swell. Eventually I got referred to Willen Hospice’s Lymphoedema service and the specialist nurse there, Kate, said, ‘You’ve got lymphoedema.’
“I thought, ‘What’s lymphoedema?’”
Understanding treatment
I thought, ‘What’s lymphoedema?’ Kate explained what it was and then we talked about using compression garments and self-massage. We tried a single compression stocking on the left leg from the toe right up to the groin – very fetching! I wore this whilst a made-to-measure garment for both legs was being created by a specialist company in Germany.
With the massage, Kate described it as gentle stroking – ‘Imagine you’re stroking a cat.’ It was a big area that was full of fluid, so doing a gentle massage or stroke like that didn’t seem to be what was required.
A definite improvement
It didn’t seem very logical to me – just squash it and sort of massage it regularly. But it seems to have done the job, and gradually the measurements of the circumference of my left thigh have started to go down. I know the swelling is never going to be gone forever. But just maintaining it in the condition it is at the moment is good.
The thing is, you don’t actually see the results day to day. Because the changes are imperceptible. But when Kate measures it, she says there is a definite improvement, which is great.
“The lymphoedema team are incredible. You feel that they’re there for you.”
Feeling lucky
The lymphoedema team are incredible. The amount of time that’s spent on me – taking the measurements for the compression garment, talking about how it all works, explaining what exercises and massages to do. You don’t feel rushed. You feel that they’re there for you.
I know I need to wear the compression garment and I force myself to do it. It is a chore, but I’m getting quicker at putting the stockings on and taking them off. They are worn pretty much 24 hours a day. It’s just becoming the norm now. But it’s better than not doing that and suffering the consequences, so I’m feeling lucky.
Una: “I think Kate saved Peter’s life … it could have easily turned into sepsis.”
Life-saving care
Una: Peter got cellulitis, which is a particular risk when you have lymphoedema, not long after he was referred to the Hospice. He’d got inflammation at the top of the leg and he started to shiver uncontrollably. He phoned Kate and she said to him, ‘Get yourself to A&E now.’
I think she saved his life. Because if we hadn’t got him on antibiotics almost immediately, it could have easily turned into sepsis. It was amazing just to have somebody to go to for advice who could point us in the right direction, because I have a horrible feeling that Peter and I would have sat in the house thinking, ‘Oh, take some paracetamol and see how you feel tomorrow.’
Peter: There’s a marker in the blood called a CRP (C-reactive protein) marker, which increases when there’s infection or inflammation in the body. The CRP marker for a normal person is between 0 and five. Mine was 258. In my condition as a cancer patient, they said it might possibly go up to 50, but 258 is in the realms of sepsis. So if I’d not gone to hospital there and then, and spent 10 days having antibiotic treatment, I don’t think I’d still be here.
“I know I’ve got lymphoedema for life, but my symptoms are stabilising.”
Green lights
I haven’t considered what my life might be like without the support of the Lymphoedema team, but I wouldn’t like to be there. My swelling isn’t in my view significant. Without Kate’s help, I feel that it would take over. I feel that my leg would just get bigger and bigger and bigger. And that would be very depressing. So I’m very, very happy with where I’m at.
We’re hoping to go to Spain in the near future, which we haven’t done for a while due to various appointments and not knowing what was normal for me, in terms of symptoms from the immunotherapy, and what was lymphoedema and what was cellulitis.
I know I’ve got lymphoedema for life, but my treatment cycle is now stabilising. My symptoms are stabilising. So I now feel that I can start going on holiday again. Kate’s told me that I can safely go on a plane. The compression garment will just be used as normal and if I see any signs of cellulitis, Kate’s given me antibiotics I can take immediately. So as far as I’m concerned, it’s all green lights now.
