Navigating Lymphoedema: A Personal Journey of Health and Resilience by Gaynor Leech of LWO Community

"As we embrace the new year, it’s a perfect time to prioritise our health and well-being. Reflecting on 2024, I am reminded of the importance of self-care and the lessons learned along the way. In my previous article for PhysioPod, I delved into the topic of blood pressure—a subject that became personal when I experienced swelling in my wrist, preventing me from using a watch blood pressure monitor... 

My experience set off a series of unforeseen events. Concerned about the swelling in my wrist, especially since it wasn’t on the side affected by my lymphoedema, I visited my GP. The GP decided to check the upper part of my body for any additional swelling, including a breast examination due to my history with breast cancer. Unsatisfied with the findings, it was agreed that I should be urgently referred to breast care.

Our local breast care unit is exceptional. During my visit, the consultant performed a thorough examination and noted that, although it was unusual, the oedema in my right breast appeared to be moving into my left breast. Additionally, I was showing signs of peau d’orange skin, aptly named because it resembles orange peel. Despite my apprehension due to the discomfort associated with breast oedema, the consultant recommended a mammogram. I proceeded with it, and within four days, I received the results via a telephone consultation. Thankfully, the mammography revealed nothing abnormal. The consultant then advised that an ultrasound should be done within four weeks for both axillae and also referred me to the lymphoedema clinic for further evaluation. My emotions were all over the place as Christmas approached, and it reminded me of when I was initially diagnosed with breast cancer fourteen years earlier, in 2010.

The ultrasound also showed nothing suspicious that would suggest cancer; however, it did show significant oedema.

Just two days before Christmas, I had my appointment at our local lymphoedema clinic. Initially, the referral was due to my swollen wrist, but upon examination, the lymphoedema nurse suspected it might be a fat lump. She also felt that there was a pool of fluid above it on my left arm. Measurements revealed that my left arm was now larger than my right arm. We decided that in addition to wearing compression on my right arm at night, I should now start wearing a compression sleeve on my left arm as well.

I also expressed my concern about the swelling in my right leg. After measuring both legs, it was determined that I needed bilateral leg compression to wear at night.

Managing the L-W-O Community, I'm always amazed at how often support group members ask if lymphoedema is a progressive condition. Members simply put it as, "Does lymphoedema spread?" The answer is an unequivocal yes. However, I never expected it to happen to me. I've always maintained a good skincare routine, stayed hydrated, eaten healthily, and followed a solid #GetMovement regime. With my current understanding of lymphoedema and the lymphatic system, I suspect that I may have had lymphoedema long before my official diagnosis. While I understood this and had long accepted it was the case, I was caught off guard, and I was unprepared for the way my lymphoedema progressed. My emotions were all over the place, and there were plenty of tears.

Lymphoedema is Progressive

Lymphoedema is a chronic and progressive condition caused by the dysfunction of the lymphatic system. This leads to the accumulation of lymph fluid in tissues, which results in swelling, often in the arms or legs. If left untreated, lymphoedema can worsen over time. As we learn more about lymphoedema, the lymphatic system, and lymphatic health, I want to point out that it is not always limb-specific.

The progression of lymphoedema is marked by stages, starting with mild swelling that may be temporarily reduced by elevating the limb to more severe, permanent swelling with fibrotic changes in the tissue. Patients may experience skin changes, increased risk of infections, and significant discomfort or mobility issues as the condition advances. Early intervention and consistent management are crucial in slowing the progression, improving quality of life, and preventing complications associated with this condition.

Thankfully, my incredibly supportive family and friends rallied around me, and we managed to have a wonderful Christmas and New Year despite the challenges. This recent experience has highlighted the importance of monitoring and managing my health—there's no room for "what ifs" or doubts about whether I could have done things differently. I do my best to manage my health. Lymphoedema is a persistent challenge, but it has also given me a sense of purpose. I have gained valuable knowledge that allows me to share not only my experiences but also the experiences of L-W-O community members. In doing so, we educate and inform others using our voices.

I hope to continue sharing valuable insights and tips to help others on their journey to better lymphatic health and well-being.

Cheers to a healthier and happier 2025!"

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