Being under the hospital for five years after cancer treatment means getting advice quicker than going through your GP. Which is how I came to be having an appointment at the Lymphoedema Clinic.
When the oncologist said I would have to have lymph nodes removed she said there was a risk of lymphoedema, but I was unlikely to get it. I replied ‘Oh good, I don’t want to wear one of those awful sleeves.’ No doubt she thought there were worse things that could happen and I assumed I would not get it, especially after two years had gone past… until I noticed that my right forearm seemed a bit puffy…
My appointment letter included a map to find the hospice where the clinic was located, the good news was it was just up the road from the bus station, but the instructions didn’t sound very welcoming.
‘There is no waiting room so please don’t arrive early… or late. If it is sunny there is a bench outside. Press the buzzer below the lymphoedema clinic sign and wait for instructions.’
It was a sunny day luckily, but I was sure nobody would answer the buzzer. I arrived just in time to hear a woman announcing she was Janet. She was let in, that was hopeful, but I guessed they would say go up in the lift, even though it was only a two storey building. I hate lifts.
The greeting was friendly and I was told to come up in the lift and turn left, or was it right and sit on a chair in the corridor. The other Janet was sitting waiting and she said ‘Oh I could have kept the door open for you’. Lucky she didn’t as it later transpired that on no account were we to enter if the door was open without ringing the buzzer to announce our arrival!
I was soon called in, by which time the other Janet and I had exchanged the complete medical histories of our families.
All readers need to know about Lymphoedema is it is difficult to spell and not to be confused with Lymphoma. Our lymphatic system is a wondrous thing we don’t take much notice of unless we have swollen glands, or doctors start talking about ‘spreading to the lymph nodes’ in cancer patients. If you are in normal health it is very clever at fighting off infection and cleansing the body of impurities. It works fine if not interfered with by surgery or radiotherapy. The salient point is that your blood is pumped round by your heart, but your lymphatic system has no pump, it relies on the general movement of your body. For the very immobile and the elderly this is why they can have swollen legs as it drains down but can’t drain up.
My diagnosis was done with a tape measure to compare arms, but also a clever high tech thingy the nurse presses at various points that reads how much fluid is lurking and where. The dreaded pressure sleeve doesn’t squash fluid out, it makes your muscles work harder, the better to keep lymph fluid moving. The condition can’t be cured but can be managed. Like all things medical there are dire warnings of what might happen like cellulitis, an infection of the skin. Any sign and you must get antibiotics straight away, so there is a card to carry on holiday in case a doctor doesn’t believe you!
Chocolate Moose is glad he doesn’t have to wear this.
The Four Big Things we have to do are skin care, exercise, pressure and lymphatic drainage which I am learning on my next appointment. In the meantime the sleeve is quite hard to get on and the awful colour makes it look like I have an artificial arm. But compared with all the multitude of medical problems people have I’m not complaining. If people ask what’s wrong with my arm and they do ask, I am tempted to say it got chopped off or I have third degree burns, which sounds much more exciting.