At the first sign of a swollen arm you should definitely head for help if you have had your lymph nodes removed. I did this just before chemo number one.
I phoned the breast nurse. On balance, she thought it best to avoid the hospital while I was on chemo. I said I’d like to come to see her immediately after chemo happened and that’s what I did. I dragged my dizzy, wobbly, walk like a drunk and feel like a drunk post chemo body round to her, to get my arm inspected.
“lymphedema” she said. Then she checked with a moisture gadget. If I didn’t know better I might have thought she had a second profession as a Quantity Surveyor and was about to knock me down on price because I’m old and damp.
“Not that bad. You caught it early,” she offered in reassurance. I was not reassured. I fear lymphedema. I fear it because I don’t want a waterlogged arm and now I’ve got one. We went through the exercises, and I asked for a physio referral. She told me it wouldn’t be possible because it had to be bad to get a physio appointment. I scratched my head, metaphorically speaking.
There was nothing for it but to face up to the new look me. “I’ll measure you for a sleeve” she said, “and a glove.” The last time I bought gloves was on a mini break to Venice when I came home with a pair of brown leather spotty gloves I didn’t need. That’s unless you count the fingerless woollies bought in a car boot sale. I have not one jot of interest in orange sticking plaster coloured sleeve and glove. All was not lost, there was a navy-blue option and so I went for one of each, in an effort to lean into my worst fears of the waterlogged arm and a fashion car crash all in one go. I came home with what the nurse had in her store and wore it.
Lead in time is about two week but three weeks later the chemist told me they forgot to put the order through. They gave me a temporary fix to get me through chemo two. The GP said she’d re-order using another chemist but two weeks later, when the much awaited sleeves arrived they were the wrong ones. The chemist says it’s the GP’s mistake. The GP says it was the chemist.
The temporary sleeves started rolling down to form a nice little bottle neck around my elbow and with chemo three approaching I took drastic action and decided to see a lymphedema specialist in double quick time. This necessitated a long car journey, a fat old fee, then a good talking to about the deficiencies of my current sleeve and glove arrangement. “No, no, no. This will not do at all,” Said Sylvia as she looked with horror at my crumpled surgical supports. “This is the wrong weave, the wrong size and the wrong compression.” She wrote a prescription and sent it to my GP who sent it to the online pharmacy. And here is where it starts to get tricky.
I accidentally deleted my order because the accessibility features were a bit on the challenging side. The GP hasn’t quite understood my mistake and just keeps confirming the order I deleted was sent and there is nothing more to be done. I’ve ordered through the hospital now, but heard nothing so no idea if it’s in hand. Chemo four is looming and I still don’t have a sleeve. I’m seriously considering publishing my prescription in the hope that anyone who no longer needs their surgical garb could donate it. I might have chemo brain.