They tell you about the risk of lymphoedema when they take your lymph nodes out. For two years I faithfully did my exercises, arm swinging and fist pumping to get the lymph flowing, but for some reason last Christmas my arm started to swell up and I succumbed. At the lymphoedema clinic they told me I needed to wear proper mastectomy bras with wide straps and no underwire, and that I needed to wear a compression sleeve all the time.
The sleeve is horrible – thick beige bandage from wrist to armpit which says ‘old and decrepit’ to me whenever I look at it. Mastectomy bras are even worse, so I’ve ignored that bit of advice, but for fear of the swelling getting worse, I have been wearing my sleeve ever since. For the first few months I could hide it under my clothes, and pretend it wasn’t there. I was ashamed of it, to be honest, as if I’d failed somehow. As summer approached I started to worry about what I would wear and booked a style consultation at John Lewis to find summer clothes with long sleeves so that I could keep it covered. (In fact all I bought were trousers and some white jeans.) And then summer hit, and of course it has been so hot; why would anyone want to wear extra layers in this glorious heat, particularly when my body still fiercely flushes with alarmingly regularity? And so my sleeve has been on show, and of course it’s been fine. I described it to someone as ugly and she wisely reminded me that ‘ugly’ was a subjective word. I don’t want to despise anything about this amazing body of mine, and so I’m trying hard not to hate my sleeve and to just get on with it. I have manual lymphatic drainage twice a month from Amanda at Clapham Common Clinic, who is calm and wise and caring. I think it makes a difference to my arm; it definitely makes a difference to my soul.
I did a woodworking course back in May, and really enjoyed the physical work of chopping with an axe. For the first couple of sessions, my arm coped well, but by the end of the third, my hand had swelled up and the dents in my knuckles when I made a fist had practically disappeared. That swelling went down gradually, but I have found that long bike rides and allotment weeding make it swell up again. I’ve now got a compression glove to wear for anything that puts my arm under stress, and it will get its first outing tonight when I do the Dunwich Dynamo.
My one sadness is that I can no longer wear rings on my right hand, partly because they no longer fit my chubby fingers and partly because apparently that would add extra stress. My rings have been quite significant to me. I had some therapy a few years ago about my harsh inner critic. I wrote down all the bile that I had been telling myself for many years. Seeing it in black and white on paper made me realise how much damage I was doing to myself. My therapist encouraged me to write a different view, listing my strengths and aspirations, what I’ve done and who I am. He got me to sit with the criticism under my right hand, and the more balanced view under my left. He said that my default setting was to be harsh on myself, much like I would unconsciously use my right hand for everything because that felt natural. Swapping the papers around, he said that I needed to reset my inner monologue, to challenge the instinctive criticism and to have a more balanced view of myself. For many years after that, as I put my ring on my right hand in the morning, I would make the conscious choice to be kind and compassionate to myself that day. As I looked at my ring during the day, I would remember that choice. I can no longer do that with the symbolism of a ring, but I’ve realised that I no longer need to. I think I’m reset, and that feels good.
I’m determined that this lymphoedema will not stop me doing the things that I love. The unflattering photo above is from my cycle to Paris in May. The sleeve has also cycled from Margate to home with me, resulting in some interesting tan lines. The anticipation of the adventure tonight has given me the courage to be honest, to acknowledge the sleeve and how I feel about it. I don’t think there will be many lymphoedema sleeves cycling to Dunwich tonight, but I’m sure there’ll be lots of weaknesses and challenges being overcome – some visible, most hidden. Chapeau to all of us who ride in spite of our imperfections, who ride to remind ourselves what really matters.