As with any debilitating condition, for many people, finding ways to cope and to continue with life is a challenge. In this article, we hope to provide a basic understanding of Lymphoedema as well as some practical ways that you can cope if you are living with Lymphoedema.
Firstly, what is Lymphoedema?
According to the Mayo Clinics definition “Lymphoedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid build-up leads to swelling.”
This is a common complication of breast surgery and radiation but can also be due to the tumour itself. Scarring from surgery or radiation can block or damage the flow of lymph through lymph vessels. Cancer cells can also migrate to lymph nodes causing blockages.
Ultimately, whenever the lymphatic system is blocked it leads to swelling in the limbs which is painful, debilitating and can cause other health problems.
Very Well Health lists the Symptoms of Lymphoedema in the context of breast cancer as:
*A feeling of heaviness or fullness in your affected arm
*A sense that the skin of your arm feels tight
*An indentation when your skin is pressed
*A tight fit of your clothes or jewellery on one arm
*Weakness and diminished flexibility of your arm
*Aching, itching, or pain in your arm
*Redness of the skin on your arm
If you have Lymphoedema, and it goes untreated then you will face limitations in your everyday mobility and functionality. The usual tasks like brushing your teeth or helping your toddler get dressed for school or driving may be difficult to do or impossible.
What are the treatments for Lymphoedema?
It is important to get professional help from your local clinic or hospital as soon as possible. When Lymphoedema is left untreated, it can cause unnecessary discomfort and have long term repercussions. Treatment options include exercise, massage and the use of pressure or compression garments.
It is vital to speak to your doctor about what the possibility is of having Lymphoedema after treatment for cancer and to engage with professionals who specialise in the prevention and treatment of Lymphoedema as soon as possible.
Specialist Lymphoedema Therapists are trained to know what exercises to recommend, are specialists in massage for lymphatic drainage and they design pressure or compression garments to custom fit each patient. Pressure garments are important in treating Lymphoedema. It is important that you see a doctor who will likely refer to you a lymphoedema therapist.
The prevention of infection is paramount for people who have Lymphoedema. The Lymphoedema Association of South Africa lists the following as principles of skincare for the affected area:
*Wash daily with a pH-neutral soap, natural soap or a soap substitute.
*Dry your skin thoroughly, ensuring that skin folds (if present) or areas between your fingers or toes, are clean and dry. Monitor your skin for cuts, abrasions or insect bites.
*Ensure that you carefully inspect areas where you experience numbness or loss of sensation as you may not feel the cut or bite.
*Treat any cuts or abrasions. If there are any signs of infection, seek medical advice. Apply moisturising cream.
*Emollients or moisturizers help keep the skin dry by reducing water loss from the epidermis – the outer layer of skin. Emollients keep the skin moist and supple by providing a protective film. For people with extremely dry skin, such as those with lymphoedema, emollients are an essential part of their daily skincare.
*Avoidance of scented products, particularly in hot climates.
*Vegetable-based products are preferable to those containing petrolatum or mineral oils.
With any illness that causes limitations on a person’s mobility, or when a person has a physical condition that limits them from participating in activities of daily living, there is likely a level of frustration for the patient and within the family. Having to depend on other people for help or using a mobility aid or wearing a special garment may not be appealing when you are the patient.
However, if it enables you to feel more comfortable in your skin, to enjoy a level of independence and to participate in activities of daily living as well as fun activities with your children, then making the changes in lifestyle will benefit your overall quality of life.
Parenting and managing life with Lymphoedema
Having had to cope with challenges, you may already have ingenious ways to cope with the tasks and activities that parenting requires. If you have older children, they can likely assist in some areas, or they do not require as much physical assistance from you as a parent. However, there may be other areas that you want to be involved in like playing a game of soccer or riding a bicycle.
Whether your children are still young or are older, honesty and open conversations about the challenges you may face with Lymphoedema is paramount to maintaining the integrity and health of the family. It is a good idea to give explanations appropriate to the age level of understanding that your children are at.
In my experience as a mother to a child with a disability and two children who do not have a disability, I know that talking openly with children about challenging issues dissolves any fears or insecurities my younger children had about their elder sister’s health issues. Being intentional about giving them the vocabulary to describe their sister’s challenges and why she needed care that was different to the way I cared for them, helped them to be more patient and understanding as people and with others.
When children feel empowered and are given the tools and opportunity to be helpful and kind, it also helps them to work through their feelings about the changes taking place due to the health issues of their sibling or parents or grandparents.
Lastly, it’s OK to ask for support. As South African, we sometimes tend to go it alone and believe that we are imposing on others. That is against the spirit of Ubuntu. Cancer and then Lymphoedema are tough challenges to deal with while also being employed and raising children. We all need support in different ways. Please enquire about what counselling services are available at your local hospital or clinic.
Desirae Pillay is an inspirational writer and speaker. She is married to Michael and they have three children Savannah (23years), Talisa (16years) and Eli Michael (11years). Savannah is a person with cerebral palsy and is autistic and was born to Desirae when she was eighteen years old. Life has never been easy, yet Desirae believes it is still worth living with great kindness. Desirae is passionate about parenting. Her life’s work is about sharing her truth to promote Faith, Hope and Love as a blogger, speaker and freelance writer. Find her on her blog: http://amillionbeautifulpieces.co.za/