Wednesday, 7 March 2018

Lymphoedema Awareness Week 2018 Day 4 ~ Rhian

"My right arm was 35% bigger than my left one."


I was first diagnosed in 1995 and had a lumpectomy on my right breast. I'd had loads of warnings about lymphoedema but managed to avoid it.

A routine mammogram in April 2011 resulted in the cancer returning on the original scar. This time I had a mastectomy and no further treatment was needed. I was fine until the September. We came home from a cruise and were travelling to Berlin a week later. I was gardening (taking down the runner beans support). My hand ached a bit but I carried on and ignored it, packed and came to Berlin. I was proud of my nails as I’d had them done on the cruise. I was showing them off to my son and his then girlfriend and he said, "Why is your hand so fat mum?"’

I knew straight away what it was.

It became painful that night and slowly my right arm became more and more swollen. As soon as I got home I rang my Breast Care Nurse only to be told I needed a referral from my GP to a Lymphoedema Clinic. My GP referred me but didn’t have a clue what treatment to give me apart from a light support sleeve. I rang the Lymphoedema Support Network and was told to take it off immediately.
It then took until December to see the nurses in the Lymphoedema Clinic. I rang them at least twice a week and made a right nuisance of myself. They finally fitted me in. By this time my right arm was 35% bigger than my left one.

They taught me Self-Manual Drainage and measured me for a sleeve. That was it, they’d see me in 6 months.

When I went back to Berlin my son had discovered that every physiotherapist there was trained to do lymphatic massage so every time I visited, he booked me 2 or 3 sessions.

I read about the Haven in London and had 6 sessions there. After a year, my arm had reduced to 9% difference. I was told by my nurses that I didn’t need my sleeve any more. Happy Days!!!!! However, six months later it was back to 19%.

So I now wear my sleeve most days as it’s controlled at 7%. If I’m going out I don’t wear it. I know though if I do too much it becomes painful so I do stop now. The clinic have suggested discharging me from the hospital but so far they haven’t done it!! I now see them once a year.

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