Patient Story > Lymphoedema – a journey, not an end

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Patient Story > Lymphoedema – a journey, not an end

Having had a mastectomy and axillary node clearance in 2012, I was aware that it was distinctly possible that lymphoedema would develop in my right arm. I was monitored for the first year by Karen Taylor, the lymphoedema therapist at Hospice Isle of Man, and I received advice and education on how to care for my arm. This included exercises, massage and a light compression sleeve to wear whilst exercising. Avoiding cuts, scratches and stings which could lead to infection became second nature to me and my family.

Four years on, I actually began to hope that I might be lucky and avoid lymphoedema, but then it suddenly developed for no obvious reason. To say I was devastated is an understatement; I was more upset by the lymphoedema than I had been when I received my initial cancer diagnosis. Lymphoedema is not curable and can be life changing. I am an enthusiastic golfer, (albeit a late starter), and felt sure that a swollen hand and arm would signal the end of my golf. I like to wear jewellery, and this became impossible. Clothing was difficult too as garments had to cover my arm without being tight.

I knew exactly where help lay. I contacted the Lymphoedema Team at Hospice and they acted swiftly to begin treatment. It was immensely reassuring to be in capable hands, treated with skill and professionalism as well as being offered great sympathy and compassion. My arm was measured and its volume found to be 45% greater than the left, classified as severe.

Intensive treatment began with two weeks of multi-layered lymphoedema bandaging combined with thrice weekly manual lymphatic drainage. The result of this was dramatic and my arm was much reduced in size. I was then measured for a tight compression sleeve and glove which I wore 24/7 for eight weeks. I was treated weekly at Hospice with sessions on a Pulse Press Lymphflow Advance machine and an inflatable sleeve which sequentially, gently squeezes and forces lymph out of the arm. I continued with my own daily hour of exercise and massage at home, wearing my compression sleeve for most of the time.

Following my weeks of treatment, the lymphoedema in my arm reduced by two thirds. It was now just 17% and classed as mild! Time for a tear or two of happiness and hugs all round. Our combined efforts had produced such an improvement. I am so grateful to the team at Hospice for their care, support and friendship.

I will always have lymphoedema but it is so much improved that I doubt many people would notice. I still wear a compression sleeve every day as a precaution against lymphoedema recurring and I also exercise my arm daily. However I can comfortably leave the sleeve off for a few hours if I am going out and my jewellery now fits. Best of all, I recently played in my first golf completion for two years and to my, and everyone’s surprise, managed to win two prizes! Take heart, you can fight back against lymphoedema!


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