Supporting women whose lives have been touched by breast cancer

Living with Lymphoedema 4

By see

I hope my account will give some hope to people who have developed lymphoedema for the first time. I have had it on and off over a few years, but with care can stop it coming back. I realise I am lucky in this.

About 18 months after left mastectomy I first developed puffiness in my forearm, in the back of my hand, and in my fingers, with aching in the arm, when I had been moving house. The breast cancer nurse referred my to a physiotherapist in the local hospital who specialised in treating lymphoedema. She measured my arm and hand and showed me some simple light stroking movements to do on my hand, arm and upper chest. I carried these out several times a day. She also recommended keeping my hand up - rather than hanging down - when walking. I did this by holding onto the strap of a shoulder bag. She recommended the gloves that runners use to reduce swelling in the hand and told me to stop carrying bags in my left hand. If sitting for any length of time - as in a car, or at a meeting, - I rest my arm on a chair arm, or on a bag on my lap. Doing these things has become second nature.

The swelling gradually went down. It has recurred on a few occasions - usually if I have been overusing the arm - such as doing DIY, carrying heavy bags, gardening, or leaning on the hand. The second time it occurred I was helping my elderly mother up a long hospital corridor when she had hurt her leg. I used my arm in the way that carers do - allowing her to lean on it - and it swelled badly the next day.

I am lucky to have few limitations which are:

No DIY - very frustrating and expensive (or live with ramshackle house)

Can hardly do any decorating (live with tatty house!)

Limited amount of carrying shopping (I use a bike with big baskets)

Can't do much gardening (live with wild garden)

Unable to help with moving furniture, lifting boxes etc at work. I find this very difficult especially when others have disabilities as well and - if under control - mine is invisible.

I have also found that sometimes people do not believe me when I say I cannot do something, as public knowledge about lymphoedema is pretty limited, and explanations also mean I have to tell people I maybe don't know very well about having had breast cancer. 5 years on - I don't care - I just tell them if I have to - but certainly found this hard at first.

I find it frustrating to be unable to help my mother and aunt, who both live alone, as much as I would like to.