Lymphoedema Week gives our charity a valuable opportunity to talk about the specialist care we provide to those in Cornwall who suffer from the condition. In this blog, 36-year-old Becca from West Cornwall talks about her experiences.
As I think back to the beginning of 2020, Cornwall, Cancer and Covid were not amongst my plans. The last couple of years have seen many twists and turns for us all. During the very first lockdown I was living and working upcountry. Then a diagnosis of breast cancer turned everything upside down. I packed up and moved to Cornwall to be near my family while I had treatment. Surgery, chemotherapy and radiotherapy followed and I’ve been so grateful for the care I’ve received.
A few months after finishing radiotherapy I was experiencing almost constant, dull yet heavy pain, particularly where I’d had surgery. I didn’t realise it but I was facing two challenges; firstly, I didn’t even know Lymphoedema could develop in the breast. I thought, if anywhere, it would be my arm. Silly as it may sound, I’d avoided reading much about the symptoms because Lymphoedema had been bundled into a bigger list of scary things that might happen after surgery. I was afraid of it.
The second problem was that my pain was dismissed by a couple of health professionals and I didn’t have the knowledge to ask ‘could it be Lymphoedema?’ particularly during phone appointments. Thankfully it was later picked up in a review with the surgical consultant.
Time to understand, teach and treat
I was surprised when I was referred to Chris Jones, one of Cornwall Hospice Care’s Lymphoedema Specialists (pictured below), because I didn’t know St Julia’s Hospice worked with outpatients. It was a relief to be saved another trek to the Royal Cornwall Hospital Treliske and to come to a clinic with a calm and friendly atmosphere.
Chris took the time to understand the different sorts of pain I was experiencing and we talked about wider health issues; sleep, exercise and ongoing medication. Using diagrams, Chris introduced me to my lymphatic system, helped me to understand Lymphoedema and the options for treatment. He explained the ways we could help to minimise it and keep it under control using massage and tape. It was such a relief when I realised that I could learn simple massage techniques and realised that this was one part of my cancer treatment that didn’t involve more medication or painful procedures.
It’s about six months since that first appointment and treatment with Chris at St Julia’s has made a big difference. The pain has now decreased in the daytime and is less disruptive to sleep. The reduction in pain has definitely helped my overall wellbeing and positivity. Understanding that I can help my lymphatic system keeps me motivated to continue with the massage and exercise. I have regular appointments to keep the Lymphoedema under control and I really appreciate Chris’ long-term and holistic approach to treatment.
I’ve still got plenty to learn but if I could humbly offer some advice from my experience, it would be;
- Don’t be afraid.
- Know the symptoms – read more HERE
- Keep asking ‘could it be Lymphoedema?’ until you get some help.