Something I’ve been reflecting on quite a lot of late, for reasons partly related to me and partly related to others. The latter not mine to share; the former is.
A couple of years ago, while walking the London Capital Ring, for no apparent reason one of my lower legs became very swollen and itchy. I carried on with the walk, just cutting it down slightly each day hoping not to exacerbate things. On my return home I went to our GP who prescribed some antibiotics in case there was an infection causing it, and sent me off speedily for tests to check whether I had a DVT – I didn’t, and it was very reassuring to have this confirmed so swiftly.
Fast forward just over two years, and the leg swelling has got considerably worse and has now been diagnosed as a life-long condition. It affects the whole of my right leg, including the foot and up into the buttock, plus my abdomen and groin on the same side. With the diagnosis of lymphoedema and tests having ruled out any problems with my vascular system, my heart and my kidneys, the seat of it seems almost certainly to be a failing in my lymphatic system.
When I reviewed my GP medical notes, what first appeared as a minor groin swelling back in 2011 now seems likely to have been at the root of all the subsequent problems. My current hypothesis (based on no medical training or background whatsoever) is to wonder whether the abdominal hysterectomy I had several years before that could have caused damage to the lymph nodes in that area.
So I have gradually found myself in an unfamiliar world, where GPs and practice nurses are unfamiliar with the condition and thus propose inappropriate treatments; or aren’t familiar with referral routes (which for this condition are fiendishly diverse and complicated, depending largely on whether or not your lymphoedema is related to cancer treatment (quite extensive NHS services) or not (very patchy and inconsistent services – what people mean when they talk about the NHS ‘postcode lottery’).
Now, a year after I should have been referred to a specialist community clinic (for non-cancer related lymphoedema patients), I finally got the referral I needed and had my appointment last week.
I was (and am) so pleased to have been referred there. But I’m also very upset that this didn’t happen at least a year ago. Because in the meantime my condition has deteriorated considerably, and I’ve now been told that leg will never get back to normal (though there is hope that it may reduce from the 60% increase in size I currently have).
Of course I know very well that all our lives can change in an instant – a heart attack, a crash, a fall, an illness. All manner of things can befall us. If we’re fortunate, we have the chance to carry on. To adjust and make accommodations. And I am fortunate, and that is what I’m doing right now.
I am fortunate because, for all its faults, I have access to the NHS. I am fortunate because I am supported by loving and lovely family and friends. I am fortunate because, if I need to buy a treatment not available from the NHS, I can probably choose to do so . I am fortunate because my condition does not prevent me from doing many things (I hope), it just means I need to do things differently (or perhaps in some cases, different things). I am fortunate because I’ve discovered some really useful resources out there (especially the Lymphoedema Support Network, a UK charity of course run by volunteers).
It’s nowhere near the end of the world.
So, here I am, in this heatwave, figuring out what I can and what I can’t manage. What I can and can’t wear (bye bye all my shoes and beloved boots). How far I can walk, and how far is too far. How long I can garden and how long is too long. Waiting for the now-ordered made-to-measure full length pressure stocking I will need to wear all the time.
And that leads on to – what adjustments must I make to keep myself as well as I can, while carrying on doing the things I love to do?
That’s a challenge, and one I readily accept. Of course, in that I have no choice: it is what it is. There will be some losses along the way, but I’m optimistic that, all in all, lots of small adjustments will enable me to continue to live my active and very happy life.
I’ve set myself a 100 day challenge to make some of those changes become habits. I’ll tell you how it goes.