Living in the real world

Hello. If you are reading this, you are probably either suffering from Lymphoedema, or you know someone who does.

I have secondary Lymphoedema (I shall now shorthand to L) after breast cancer in 1999. I am now 46 years old. More about the background some other time: my reason for starting this blog is the remarkable lack of resources and information around this subject - and that absolutely does not take away from the enormous work of those working in the field - in particular my original mentor, Eunice Jeffs, who co-founded the Lymphoedema Support Network which has done so much in terms of education and advocacy, taking up the slack of so much that is missing in the NHS.

And again another aside, which is not to take away from the efforts of the NHS. I know pretty intimately the challenges even the top key hospitals face. I have been a patient of Barts (St Bartholomews Hospital in West Smithfield, London) since my first bout with cancer in 1980. That time it was Hodgkins disease. I have known the oncologists there almost 30 years and I have nothing but utter respect for the miracles they work with so little in the way of the support that we take for granted in the private sector.

Anyway, I'm sure I will cover much more of this in future posts. I wanted to start tonight to address the issues we have living with L (that goes for Primary too) in the real world. And its late, and I'm tired, so enough of the preamble.

I broke my arm 4-and-a-half weeks ago. My L-arm (lucky for me that's my left). And what worried me more than anything else was, how on earth was I to handle the effect on the L? Frankly it terrified me, and no-one seemed to have much advice. I live in St Johns Wood, so my GP, Ed, referred me to St Mary's in Paddington, who have been great, but no L experience. I called the L nurses at Barts. Response: "we have never had someone with L who has broken their arm, so I don't know what to tell you. I will have to phone around", That was 3 weeks ago.

So, I shall chart my own experience and record the learning. Although said charting will have to start tomorrow... said arm still being broken so this amount of typing is already causing a nice thrum.

So one last thing... Eunice Jeffs instilled in me a real sense of personal responsibility for my L, and her teaching has been the cornerstone of my life with L. I remember haveing a bad fall on one of the paths on Primrose Hill several years ago, and calling her to ask her what could be done, what could I do???? Her trademark downbeat and pragmatic response was, hang in there, do your exercises, and wait for your body to heal. It will; and the L will heal with it.

At the time, the lack of a "fix" left me all at sea, but she was right. And with this broken arm this last few weeks, her words have echoed around my head again. Its a bit more serious, but I'm learning. I am exercising; I am trying to be healthy (glasses of wine notwithstanding, but hey); I have wiggled a cut-down piece of sleeve onto my upper (non-cast) arm. I keep it raised when I can. I clench my fist when I walk. And I keep my fingers crossed ;o)