Managing swelling without MLD

Two weeks since the cast came off, and all things considered, I think I should be fairly pleased with progress dealing with the lymphoedema swelling.

There was, and still is, some pain from time to time, exactly as Mr Marston in the fracture clinic warned. Nothing to worry about though, having been forewarned. - actually oddly reassuring. But its late, and I am tired, so let me get to the two points I really want to write about before I give up and go to bed.

My visit to Barts was productive. Sonia seems to be in charge of all the nursing services in the West Wing and knows her stuff when it comes to Lymphoedema. We had a good talk, and she completely understood that I'd just been really scared the day before when the cast came off. She was pleased with the state of the skin - the showers and the moisturising the last 24 hours had transformed its condition, it had recovered remarkably well.

But it was still a lot more swollen... after measuring, I needed a size III Mediven sleeve, rather than my usual size I, and I needed one with an integrated hand: partly because the hand was swollen but also because the remaining haematoma around the wrist where the break was proved awkward for straight sleeves (without hands). She also ordered me a separate glove with fingers, which proved useful, even though by the time it arrived my fingers had gone down.

Of course, what everyone except we patients forgets is that any glove appliance, whether it's an integrated one or separate, causes pain in that sensitive little area at the base of the thumb, and I have to be honest, it is driving me mad. I have - or had - a coping routine that meant I wore my sleeves in bed most nights, but with this level of swelling I needed to wear a glove as well or be damned by even more swelling than I went to bed with (in my hand, not my arm, obviously). However, by rotating my old sleeves and the new finger glove with the new integrated sleeve and several nights "off", I have managed to cope to the extent that I went back to see Sonia yesterday and persuaded her to let me have a size II sleeve (its' still integrated though).

Excercising has been a much more positive affair, and that brings me to my second point about the Physiotherapy appointment on Tuesday... Tim (my personal trainer) would be very pleased to know we are on the right track, and the physio was very impressed with the degree of strength and mobility I have already regained - a real positive for having kept up the training while the cast was on. However, there are three very important learnings at this point:

1. The use of a hand piece during exercise and other flashpoint times is crucial:
2. The muscles need to be gradually brought back to strength so they can once again be the proper drivers (actually I call them my "engines" or "pumps") for pushing the lymph out;
3. Proper exercise - including but not limited to compliance exercise - is what has helped me accelerate the healing process, without doubt. I just have work on following through with that so I can bring the weights back into my compliance exercises as soon as possible.

I shall keep you posted.

One piece of advice though... keep pushing the boundaries. There is a very strong school of thought that advocates avoiding physical stress. I understand the point, but its not the whole point, and if that's all you stick to, believe me you will be more prone to problems not less.

More on that some other time. Very tired now, time for Bedfordshire.

Cast away!

I have to tell you, the removal of that delightful green piece of fibreglass that has been so utterly attached to me for the last six weeks was a terrifying surprise. But I am clearly a wimp with no stoicism or bravery whatesover.

No sooner had I put my nose into Beyond Bullet Points (my current tube read - I'm a bit unimpressed actually) than I was called into the fracture "action" area where the practicalities of applying and removing casts goes on. Giant man in blue overalls approaches with the kind of machine that looks like a cross between a hoover and a rotary chain saw. I quaked!

It's a simple process. The saw (a small round wheel driven by the "hoover" which also whisks the debris away) cuts a line along the top then bottom of the cast. Frankly it was terrifying, but I think Blue Overalls thought I was bonkers and ever-so-slightly over sensitive. The vibrations are nerve-wracking enough, however I could feel the heat of the whirring saw blade and honestly could trace it's journey - it felt a millionth of a millimetre from my skin. I kept squealing I had Lymphoedema so my arm was swollen right into the cast... in the end I couldn't look, I shut my eyes and went all girly-wimpy - completely pathetic! Blue Overalls did his stuff, split the broken cast off and sent me on my way with, I sense, a sigh of very unsympathetic sympathy!

I looked, expecting to find a fine red line etched on my skin top and bottom. None, of course.

But the pain took me utterly by surprise. I expected it all to be perfect, but my wrist really hurt. I expect the lymphoedema has something to do with it but not all by a long chalk. As soon as the cast was off, my wrist was limp as a kitten and painful as hell.

However, before I continue, I must add that as I write now 10-12 hours later, it's a million times better - about where I'd have expected it to be when the cast came off, actually. And I've been to work, had a stiff Personal Training session, cooked and been on the computer at home for a couple of hours. Not exactly recuperacting. And no more paracetemol so far.

So anyway, let's cut a long story short. Mr Marston reminded me some stuff about blood solidifying around the bone being the main cause of the pain. Still didn't quite get that, note to self to look it up. I should expect moderate pain at least another two weeks, and then still some on and off after that. He is booking me in for physiotherapy. And that's that as far as he's concerned.

The state of the skin under the cast was quite yukky. Immediately after being 'dismissed', I made for the loo and washed my arm and hand as best I could. I'd brought some moisturiser with me, and a full sleeeve, and I put both on - very gingerly, it was ruddy painful. I then crunched two paracetemol without water. Needs must...

I phoned Barts before getting back on the tube: must have sounded a tad irked, as they called back this afternoon, and I'm seeing them in the morning.

I spent every spare moment today - and a few that weren't - peeling dead skin off my hand. Reminded me so much of post-radiotherapy in 1980 when I used to peel dead skin off the back of my head. Yes, head.

After training this evening I has a good long shower and got rid of some more dead skin - and then had a really good moisturise. The skin looks much better and less at risk from cellulitis but my hand and wrist is very swollen still and the wrist is quite discoloured in places. Still, at least with a full sleeve back on I have consistent compression: what I really need now is a hand garment. Barts have said in the past they don't make separate ones any more: maybe I should try dig out the manufacturer details - I did have them years ago.

Onwards to Barts tomorrow...

Living in the real world

Hello. If you are reading this, you are probably either suffering from Lymphoedema, or you know someone who does.

I have secondary Lymphoedema (I shall now shorthand to L) after breast cancer in 1999. I am now 46 years old. More about the background some other time: my reason for starting this blog is the remarkable lack of resources and information around this subject - and that absolutely does not take away from the enormous work of those working in the field - in particular my original mentor, Eunice Jeffs, who co-founded the Lymphoedema Support Network which has done so much in terms of education and advocacy, taking up the slack of so much that is missing in the NHS.

And again another aside, which is not to take away from the efforts of the NHS. I know pretty intimately the challenges even the top key hospitals face. I have been a patient of Barts (St Bartholomews Hospital in West Smithfield, London) since my first bout with cancer in 1980. That time it was Hodgkins disease. I have known the oncologists there almost 30 years and I have nothing but utter respect for the miracles they work with so little in the way of the support that we take for granted in the private sector.

Anyway, I'm sure I will cover much more of this in future posts. I wanted to start tonight to address the issues we have living with L (that goes for Primary too) in the real world. And its late, and I'm tired, so enough of the preamble.

I broke my arm 4-and-a-half weeks ago. My L-arm (lucky for me that's my left). And what worried me more than anything else was, how on earth was I to handle the effect on the L? Frankly it terrified me, and no-one seemed to have much advice. I live in St Johns Wood, so my GP, Ed, referred me to St Mary's in Paddington, who have been great, but no L experience. I called the L nurses at Barts. Response: "we have never had someone with L who has broken their arm, so I don't know what to tell you. I will have to phone around", That was 3 weeks ago.

So, I shall chart my own experience and record the learning. Although said charting will have to start tomorrow... said arm still being broken so this amount of typing is already causing a nice thrum.

So one last thing... Eunice Jeffs instilled in me a real sense of personal responsibility for my L, and her teaching has been the cornerstone of my life with L. I remember haveing a bad fall on one of the paths on Primrose Hill several years ago, and calling her to ask her what could be done, what could I do???? Her trademark downbeat and pragmatic response was, hang in there, do your exercises, and wait for your body to heal. It will; and the L will heal with it.

At the time, the lack of a "fix" left me all at sea, but she was right. And with this broken arm this last few weeks, her words have echoed around my head again. Its a bit more serious, but I'm learning. I am exercising; I am trying to be healthy (glasses of wine notwithstanding, but hey); I have wiggled a cut-down piece of sleeve onto my upper (non-cast) arm. I keep it raised when I can. I clench my fist when I walk. And I keep my fingers crossed ;o)