Press The Button and Wait

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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.

27 thoughts on “Press The Button and Wait”

  2. I’m so sorry about your continuing health difficulties! Sometimes it feels like there’s no end in sught, doesn’t it? I’m half way through a series of hospital appointments to deal with UC complications, including surgery, besides having had breast biopsies, so I sympathise!

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  3. Good to see that these health challenges haven’t affected your sense of humor. Until my recent pacemaker (I see the cardiologist next week and I hope she gives me permission to do more strenuous exercises), I’ve been taking a wheelchair-bound friend to her PT appointments. After three years and two spine surgeries, she is slowly making progress to walk again. Her positive attitude is inspiring—so is yours.

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  6. When my mum had treatment for breast cancer, she soon developed a badly swollen left arm. They gave her one of those sleeves, but she was very reluctatnt to wear it, or to do the recommended exercises. Her arm became red and swollen, and she would pull the sleeve off and scratch her arm until it bled. Right up to the time she died aged 87, I struggled to get her to pay attention to the swollen arm, which was twice as big as her other arm.
    Best wishes, Pete.

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    1. Thanks Pete, that is a timely reminder to take seriously the dire threats of what might happen; I was taken aback that one is supposed to wear the sleeve all the time, except in bed and for the rest of one’s life! Your mother would not have had access to videos on the internet or GP referral classes at her sports centre.

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  7. What a Palaver! I’m glad it was dry and sunny when you had your appointment – presumably they don’t arrange for the bus to arrive at the correct time? Good luck with the sleeve and the rest of the treatment. Annoying but not life threatening. I love the way you meet all these challenges with humour.

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    1. Luckily I have one bus that is very frequent and the bus station is at the shopping centre, so I can aim early then hang out till its time to march up the road. A bit of a nuisance, but after reading Beetleypete’s comments about his mother I am determined to adhere to all the medical advice!

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      1. Buses are an endangered species here so you are lucky to have them. Well done for doing as you are told – did I really say that? – a bit of a nuisance now is worth putting up with to avoid worse later.

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      2. Thanks. My buses are the advantage of living in a busy place, but of course we are short on rural tranquillity! There was a bizarre episode earlier this year when the historic Yellow Buses suddenly went into liquidation and the other newer company, More Buses, saved the day and most of the routes by gathering more buses from all over, including Wales, a bit confusing…

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  8. It must take great strength of spirit to be humourous at such times. Your spirit is inspiring! I hope your arm heals quickly. My paternal grandma used to have swollen feet every winter, but she stopped getting them after a few winters and never got them again. I was too young then to now remember if it was lymphoedema; but if it was, then it sure goes away.

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