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...

Cast off!

I have been counting down the days to tomorrow when I finally get this darn cast off.

Getting back to normal won't be a breeze: there is a fair bit of swelling, comparatively, above the cast, and its been noticeably tight and uncomfortable under there for the last week, so I'm expecting it to actually swell a bit more once it's released.

But I can hear Eunice Jeffs in my mind... and it will all be about paying attention to the key basics:

• Compression - I shall wear my "younger" sleeves, and see about getting a few more from Barts


• Exercise (the Compliance part, as some call it) - Lymphoedema routine morning and night, without fail, and build the weights back in very gradually. Fitness training with Tim can get back to normal but we will not do arm exercises for a couple of weeks, just to see how it goes.


• Be healthy generally. It is no surprise that when I go on holiday, and go diving, I drink less, eat healthily, sleep plenty, relax, and spend lots of time outside - and even though I only wear my sleeve evenings and night, and even with long flights - my swelling is always the same or less than when I went away. There's a lesson there!

On which point, it's time I was in bed

Too young for osteoporosis?

I had a dexa (dual energy X-ray absorptiometry) bone scan today to check my bone density. Mr Marston, the consultant of the fracture clinic at St Mary's, referred me in the light of my "history" - steroids at 18 with the Hodgkins chemo, early menopause from the breast cancer 9 years ago.

The phone call to ask me to book an appointment was quite amusing - she said I'd been referred to her department to book a scan, but given my age she was a bit confused as I was - wait for it - too young for osteoporosis. Thats too young - not often you hear that past 40 about much.

I explained and she was happy. Such joy :-)

I did have one through Barts a while ago but we must be talking at least five years ago. That one was fine, so it will be interesting to see if there is any change.

I mentioned it to Tim (Tim Hagon, my personal trainer) and he said weights work is good for fighting osteoporosis. Which I normally do at part of my lymphoedema exercises, and will get back to as soon as this cast comes off.

Simon says...

Simon Irwin is my osteopath. He is about 28 I think, ex-rugby player, great bloke to talk to while he's cracking your spine and pulling you back into shape.

He also does sports physio stuff and, amazingly, has done a course on Lymphoedema. So I was looking forward to a good chat with him on my visit last Wednesday. Here's a rough guide to his advice as I remember it (I was very reassured I am on the right track):

• Keep the arm raised whenever you can
• Being in the cast is good in that you can't swell any more than that
• Cut down a sleeve and keep it on the upper arm down to where it meets the cast. (I did this as soon as I could stand the pain - about a week after the accident, and tend to keep it on day and night)
• Do your lymphoedema exercises and stretch as much as possible (this is a gradual process, but I was back at full stretch I think about the end of week 2)
• Move the fingers as much and as often as possible. Massage them gently with moisturiser
• Jogging is fine. Do what you can, but don't push the limits, just be sensible

And when the cast comes off, he reckons it will take twice as long as normal to get back to where I was. I think that's conservative where I'm concerned, but only because I want to do some diving end of December so will be pushing to get back to fighting fit. Simon's main suggstions were...

• Swim as much as possible, its great all-round exercise and will get the arm working well
• Build the weights back up gradually (I do half my lymphoedema exercises with 2kg weights) - get a lighter set of weights to start with, if necessary. (I think I will just gradually increase the proportion of exercises I do with the weights, which is how I started with them in the first place)
• Accept that, even though the muscles were strong before the accident, they will have lost a lot and will need to be built back up gently and consistently. And it will take longer than for someone without lymphoedema

So there we have it. Obviously Simon is not a specialist, but I have a feeling Eunice would not disagree with much. And it was so great to have the reassurance!

The itching catches up

Finally, its itching. Everyone has been asking, how do I cope with the itching? To which I say, it doesn't itch.

Until today, that is.

I suspect part of the trouble is the fact that I have started jogging again the last few weeks - only two sessions a week, and I don't exactly do much, but obviously I sweat, and I guess it builds up.

The lymphoedema swelling comes and goes, and I imagine is also a key contributing factor - it tends to swell to fit the cast, which means there is no room for the skin to breathe. Heaven knows what state my skin will be in come October 15th when the cast comes off - I keep imagining it all rotting underneath. It certainly smells a bit now - like cheesy feet. Not very pleasant.

I have just taken a couple of paracetemol/codeine capsules in the hope it will ease things: it was also twinging a bit - not sure whether that's down to the tendons or not, but maybe I've pushed it a bit too hard the last few days. It certainly took a lot more than usual when we were babysitting young Alfers on Saturday (as did most of the muscles in my body, I felt like I'd spent ten rounds in the ring not a few hours with a baby nearly ten months old!)

So, doing my normal lymphoedema exercises morning and night is more or less back on track - I have been really shocked how easy it is to lose the habit though, after - what - eight or nine years I would have thought it was pretty ingrained, but in the first week of breaking my arm it hurt to do anything, and after that I found I just kept forgetting - didn't even think about it! I've had to really work at it - if I get to the office and realise I forgot to exercise, I make myself go into the corridor and do it.

Hmm, arm under cast does feel hot and sweaty (and still very itchy around the wrist, maybe it is the bone healing?), though fingers are not too swollen at the moment. Painkillers have kicked in - I guess it just needs a rest. Time for bed then :-)

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)