Category Archives: Lymphoedema

Jan21

The Garment

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Tuesday 21st January

Support hose, surgical stocking, compression garment.

None of these titles convey anything but ‘old granny’, ‘saggy baggy’, ‘creased and crumpled’, ladies with fat ankles ~ ‘cankles’

Today is the day I’ve been dreading.

My new ‘American Tan’ stocking was pulled and stretched onto my left leg by the lymphoedema nurse, wearing a pair of blue washing-up gloves! She said these were good to get to grips with the tight fabric, in order to clothe my leg in this ghastly, knitted, tight, mud-coloured tube.

I’m not usually one for negativity, moaning, whining or crying, but the sight of my left leg, covered from toe to crotch in this horrendous material did make me sob.

Yes, I am vain, I admit it. I want to wear skirts and sandals in the spring; I like shorts and flip-flops in the summer; bare legs!

Well. I’ll just have to grin and bare it (ha ha!!). I’ll put up with this compression garment for a few months, and who knows, maybe the lymphatic fluid will be encouraged to drain away, up my leg, and find other lymph nodes and channels in which to disperse. I do hope so.

Jan14

It’s D-Day

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Tuesday 14th January

Another long drive to Exeter. It’s D-Day today: provided I pass the final day of tests, I’ll be given my drugs!

The Pigmented Lesion Clinic is first ~ Dermatology. All clothes, apart from underwear removed, and the consultant checks me all over, very carefully, using a dermatoscope. He is very thorough, and finally announces that all is good, and he wants to see me again in four weeks.

Next stop is the lovely trials nurse for another batch of form filling, blood pressure, temperature, and four vials of blood taken from my arm. All looking good here.

We then move into the main waiting area, which is filling up fast. I’m called into one of the consulting rooms, and introduced to the ob/gynae consultant. He seems quite pleasant and cheerful ~ “I’ve been called down here to perform a technical function”. Well, if that’s what you want to call a pap smear, that’s OK by me! Bottom half clothes removed, smear sample taken, time to get dressed.

I move back into the waiting area, but it isn’t long before I’m called in to see the oncologist. Clothes off again ~ apart from underwear!! He wants to check my scar, the lumpy swelling at the top of my leg, lymph glands, my liver, abdomen.

And, and, and, well? Yes, all seems in order for me to take part in the Combi-Ad drugs trial! This is now getting serious. Down to business ~ I am given two pots of tablets: the big pot ~ Dabrafenib/placebo, two to be taken twice a day, twelve hours apart, one hour before food/two hours after food; the small pot ~ Trametinib/placebo, one taken each morning.

Combi-Ad, for one year! Well actually 12 months x 4 weeks = 48 weeks, or 12 months x 28 days, which is only 336 days in total.

Bring it on! Placebo or not, drugs or not, I’ll be incredibly well monitored with monthly visits to Exeter to see how I’m progressing.

If this helps me to live longer, live healthy, live happy, then GlaxoSmithKline you can look after me for a year. I’ll be on that tropical beach, under a parasol, cocktail in hand, living, loving, laughing for a good few years to come.

Jan10

Lymphoedema and Support Stockings

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Friday 10th January

Well, that was the most un-positive day I’ve had for a long, long time.

I’m normally very upbeat and try not to let things get me down. Even if I’m feeling low, I try my hardest to put on a ‘happy mask’.

Today though it all seems very hopeless and a slide down towards despair and inevitability. Nothing is going to make this right, or better, or normal.

I rarely use the words don’t, can’t, won’t as far as my actions are concerned. But I don’t like this. I feel I can’t do this anymore. I won’t ever get back to being how I was.

My appointment with the lymphoedema nurse lasted an hour and a half. Many measurements were taken of both of my legs. Every four centimetres the circumference was measured and noted down. And yes, there were fairly large differences between the two. It turns out my left leg is carrying 800 mls more fluid than my right. Almost a kilogram in weight! No wonder the skin feels tight and stretched, no wonder my knee and thigh feel heavy and numb, no wonder I have trouble walking properly.

And what is the solution? A support stocking. There you have it. I will have to wear a tight garment on my left leg for the foreseeable future. This thought really does depress me, and the happy mask that I wear everyday, seems to slip away.

I leave the hospital feeling very low and despondent. I didn’t sign up for this!