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sleeveThey 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.

 

7 thoughts on “Summer in a sleeve

  1. I say style it out! Get a few sleeves and get some of your more arty friends to decorate them (and you too) so you have something really cool and individual! If you can’t rid yourself of it, embrace it and make it a really cool part of you! I would suggest embroidering it but I think that would hinder the effectiveness of the sleeve?! Fabric pens could do it?!

  2. i second that. beige is the colour of shame – trying to hide something and failing. same problem as with hearing aids and old style prosthetic limbs. but there is no shame (though there might be discomfort). you could decorate it as tattoos – a ‘sleeve’ indeed 😉 i wonder if there are other versions out there in different colours – somewhere in the sport world.

  3. Hi Jenny. Don’t know if you’ll see this as it’s now October. I came across your blog on Twitter. I’m a professional gardener and got scratched by a rose thorn, arm swelled up so went to walk in centre and got given antibiotics. It’s still swollen 3 days later so pretty sure it’s the dreaded lymphodoema. I’m 4 years past dx and only had 3 nodes out so thought I was low risk! I’m wondering if I’ll have to give up gardening and my body pump classes, I love cycling too! Any advice? Thank you. Kate x

    • Sorry to hear about your swollen arm. Maybe the antibiotics need longer to work? I’ve decided that I’m not going to let my lymphodema stop me doing things. I think some exercise is good and one nurse advised me to do some weight training so I would think your body pump classes would be ok. I wear a sleeve all the time and I have got compression gloves that I wear for cycling and chopping wood as that made my hand swell up! I have got a couple of patterned sleeves from Lymphedivas, available in the U.K. from Pebble UK. They are expensive but worth it for when I want to look my best. I’m sure a lymphodema nurse could give some advice. I got my Macmillan nurse to refer me to the local lymphodema clinic even though it’s mild because I wanted to get the right advice. Hope this is helpful x

      • Wow Jenny thanks for the quick reply! I know I’ll have to get a proper dx, of course i hope it is just an infection but trying to arm myself (forgive the pun!) with facts just in case. After bc in 2014 I got back to running but unfortunately injury put paid to it in 2016 so now i cycle – recently conpleted my first century ride! After redundancy in 2015 I retrained in horticulture and set up as self employed 2 years ago. I love what I do and am probably the fittest I’ve ever been, so I’m praying I don’t have to give it up. (Hormone treatment has affected my bone density so weight bearing exercise helps – bc, the gift that keeps on giving haha) Knowing you can still do the activities has helped a lot. If I have to have a sleeve so be it. I’ll have to get a badass patterned one for sure though! I didnt know they did gloves too. Thanks again for your reply and all the best. X

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