"I don't like having lymphoedema - but I see it as just part of being extremely lucky to be here."
LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018 ~ LORNA
I had chemotherapy, lumpectomy and lymph node clearance, and then radiotherapy which finished in December 2015. My lymphoedema developed immediately after surgery in August 2015 and affects my left hand, arm, upper back and my neck. My surgeon didn't believe that it was lymphoedema and it took my oncologist to diagnose - the radiotherapy had to be delayed because of the 25% volume swelling. Once radiotherapy began, it was swelling up during the blasts of treatment and I had to be taped to the machine. It was how I imagine a torture chamber would be!
Anyway, two years on and I am managing my lymphoedema. The volume difference in my arm and hand is less than 4% now and my neck is much better. I have to wear compression garments all the time, on my hand and arm, and I have kinesio taping on my neck. I haven't got any on now as it gets itchy in the central heating.
I don't like having lymphoedema - but I see it as just part of being extremely lucky to be here. My breast cancer was diagnosed after I was called for a trial mammogram for women under 50. I was 48 at the time and if I hadn't gone along it would have been a whole different story. For the first year it was really isolating. I didn't meet a single person with lymphoedema. I couldn't exercise because my neck was so swollen. I started off by swimming and then found a wonderful pilates instructor who is also a physiotherapist and I see privately once a week. I have lost all the weight (41/2 stone) that I put on during treatment and that has really helped.
I went to a local support group and met some other people like me, and now I am the chair of that group - North Essex Lymphoedema Support Group (NELSG). We are at Colchester Hospital next Tuesday promoting Lymphoedema Awareness Week. Anyone who lives in Essex/Suffolk is most welcome to come along to our meetings. Details are on www.nelsg.org.ukand on twitter @northessexlymph and facebook North Essex Lymphoedema Support Group (NELSG).
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