the LSN is 21 years old this year - so much achieved but still along way to go
21st birhday: the LSN is 21 years old this year - so... - LSN
I would like to say how grateful I am to the LSN.
My cervical cancer op took place in Jan 1987, and the L began to show in the following July. My leg was so heavy and painful, as all the lymph nodes had been taken from my right groin to look for further cancer, of which, fortunately, there was none. I imagined that this was what it would feel like if one's leg was encased in concrete.The advice given by my consultant was that I should lie down with my leg up the door, but as I was teaching piano and recorder to many pupils at the time, and being a mum, that would have been difficult!
I tried health food shops and complementary meds, and general massage, none of which could really help, though it did help me to know that someone was on my side; and as for my GP , he knew very little about the condition.
A relative sent me a cutting from a health food bulletin, where fasting was mentioned. My cousin thought that that might be helpful to dispel the L. I rang the number given and spoke with a kind-sounding Asian doctor, who said that fasting would not help me, BUT that "This very day, a group has been set up to help people with L. Why don't you give them a ring?" (more or less his words). So I did, and spoke to Sally Harrison, who sadly died a few years ago, and I joined.
About 7 years later I managed to attend a meeting of the LSN, and there met Sally, who had been a ballet choreographer, and was delighted that her leg had reduced after bandaging treatment. She said she was able to dance again.
I also met the Medi Rep there, who, over coffee, told me that treatment was available on my doorstep. It had not been publicised through lack of funding, it seemed.
I applied, and so began my long history of bandaging, and all thanks to the LSN.
For many years I balked at having to don the "garments" but now, 21 years on, it comes as second nature.
For 12 years I have led a small group of women L patients *, making very good friends among them, and have written to our local health authorities and 8 local MPs on behalf of all L patients in our area, urging them to help stabilise our L service, which is hanging on by its teeth, but which does at least, still exist. As we all know, there are still GPs who know little about this debilitating condition, and how serious the situation is, but I'm really pleased to see all the effort being made now, worldwide, to publicise it.
*Members of the LSN at Head Office, and my local therapist helped me to set up this group, making suggestions of running it, and we began with monthly meetings in a room allotted to us free of charge in our treatment centre, and later, in our local hospital. I used to find a speaker for each meeting, who would bring props to support the talk. Over time the attendance diminished, so that now we meet for lunch on a Saturday every 2 months, and some partners come too. They seem to like getting together, and I feel that in addition to supporting the women, it may help them to realise that their own partner is not alone in complaining about her L problems!