lymph odema has got worse

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1

I am soooo gutted. After my thread last week about flying with LO, I only have it mild at 7%, I woke up a few days ago with a swollen hand. Never had it so noticably bad. I was stunned.

I think it may have been the heat and it was very humid. Had to wear my sleeve and gauntlet for work. I teach, and every kid I saw that day asked me what was wrong with my arm (and staff).

I’m affraid I lied to the kids, telling them it was a flare up of an old injury. I was very plausable and they believed me. I told staff truth. Thing is, do I want all and sundry to know this and am I always to be seen as that cancer victim?

Someone needs to do a much better job on the sleeves too. My sleeve and gauntlet are dif colours so really stand out.

Also wondering if I now need a bigger sleeve if the hand appears so much bigger, and will it just keep getting progressively worse? This is a real issue for me as I am an artist and right handed which is my bad side. I am so frightened that this thing may disable me further, lifes pretty hard as it is with all the emotional baggage we carry regarding a reoccurance or secondary diagnosis, not to mention feeling ugly, unsexy, fat and having no sex drive. I’m moaning too much now so will go! Any tips or advice most welcome.

Irene

2

Hi Irene

SO sorry to hear about this. And in your dominant arm, too.

Can you think of anything (other than the heatwave) that might have triggered this? Overuse? Burn? Bite? Sleeping awkwardly?

I think you did the right thing by putting the sleeve and gauntlet on, but then, as you say, there’s all those poxy explanations…and in my experience, people’s eyes just glaze over when words like ‘lymphatic system’ are mentioned. It seems to be incomprehensible to people who haven’t got it or at risk of getting in. 'Fraid I chickened out years ago and took to long or three-quarter (with matching colour compression) sleeves full-time. That way I don’t have to explain my appearance to nosey parkers every 5 minutes…

I did start a thread here about clothes and lymphoedema. I’ll try to find it and bump it for you in a minute.

I think lymphoedema is such a quixotic condition that it’s hard to predict exactly what would happen on an individual basis. But it does tend to get worse if untreated. I think you need to get your hand and arm checked out by your local lymphoedema service asap, as your sleeve and gauntlet might no longer be a good fit. Hopefully they will have their previous set of measurements to refer to and will also be able to give you some more advice. They also need to exclude the (rare) possibility of it being an indication of a more serious problem.

Yes, it’s just one more blow to self confidence and self esteem, isn’t it? Fat arms are hard to hide and are even more noticeable clad in a doo-doo coloured sleeve than they are without one.

Fizbix’s lymphoedema exercises are good. Will bump these too in a minute.

I also think you need to be extra ‘nice’ to your arm, altho’ you probably are doing that anyway. Lots of rest with elbow supported, don’t sleep on that side in bed, no repetitive tasks. Swimming would help tho’, if you’re into that, but gently.

Hope cooler temepratures improve things for you…

X

S

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Hi Bahons 2

Just want to check that about repetitive tasks. My lymphoedema nurse said its ok to do jobs like ironing, cleaning which are repetitive as long as i am wearing my sleeve. She said it helps with the drainage if the arm is active. I think i told you before, its my left arm which is also my dominant arm that is affected. Apparently it was measured at 20pct. I am seeing mld specialist this week.

I have been wearing the sleeve for about a week now and put it to the back of my mind that it is there. No one has seemed to notice, i think it looks like a surgical sleeve and people just dont take any notice of it. I think with my bald (bit of fluff now) head and lopsided body, i can get used to anything…

All the best

Linda

4

The recent hot weather here seems to have made mine worse. I have to admit I havent worn sleeve much as dont want to advertise the fact i have had cancer. The thing is the affected arm my right just drips with perspiration in the heat. I did wear it at night on a recent holiday to Greece (to avoid mosquito bites!!!) and was fine. As the sleeve is nylon what happens if the arm sweats where does it go? I also had a rash on my arm at the top under the sleeve and was worried I would get cellulitis. Are others suffering with these side effects I guess of lymphoedema. The sweating was never mentioned by my nurse.

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Hi all

Elljaydee, I’ve always been told that it’s best to keep ironing to a minimum. And the reason for that is that you are effectively carrying something, for much of the time (and pushing it for the rest). And altho’ what your lymphoedema nurse is true, that it’s good for your arm to be active, when you carry something the skeletal muscles are in a state of contraction, which can affect the entry of lymph fluid into the lymph vessels. Plus, to be effective, irons tend to weigh a bit, too, and you don’t weight dangling off the end of your arm for long periods.

So…in an ideal world we wouldn’t do any ironing. But as we live in the real world and it’s probably a case of having to, here’s my suggestions:

DON’T iron anything you don’t have to. EG, I never iron bedding (except for guests).

Get other people to do their own clothes, etc, if possible

Use the ‘easy iron’ setting on the washing machine, if there is one.

Don’t use the water reservoir on the iron - use a separate spray instead; this will reduce the weight of the iron.

Try to share the ironing between both arms a bit, if you can.

Don’t iron for more than 10 mins without a break which gives your arm a different activity - or a rest, ie don’t tackle ironing mountains in one go.

I’ve also heard good things about those irons with a a separate steam thingy.

As for cleaning, I would say similar rules apply. Don’t do any one thing for too long, don’t blitz the house in a day. If you’re keen on housework, do a room a day at a sensible pace (personally, I’m happy to leave it indefinitely!!!). Be careful stretching up for things. You might find hoovering can make your arm tired. Again, if you can learn to do it with either arm, it helps.

These are my suggestions and also the way I do things, which seems to work for me. If you are seeing an MLD specialist this week, do try to pick her brains, as she may well have lots of other useful tips (that you could share with us!)

Goodness, what a lot…Starfish, I’m going to reply to you separately later - having computer troubles at the mo’

X

S

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Hi bahons2 and others, thanks for advice, what a lot you know! Regarding the sudden worsening, I did spend the day before trying on bras for 4 hours in sweaty changing rooms, maybe it was that.

Interesting what you said about ironing and carrying things, of course I do both! Hand swelling seems to improve at times then return to puffy and my arm is aching now as I type this (my arm is not supported).

I will be phoning my Lymphodema nurse asap, but she is only part time and may have to wait a few weeks to see her. In the mean time, is it ok to wear a sleeve that may not fit properly?

Thanks for the email with advice.

Irene

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Hi

Thanks bahons2, i hate housework but living with a hubby and two sons, tends to be a lot to do. They just dont care about the way things look like i do. I wish i could have a man’s perspective on it, life would be so much easier.

I paid a cleaning firm to tackle some of the jobs that havent been done for ages, skirting boards, dado/picture rails, windows inside etc… i am such a fusspot about ironing and need to get a grip on myself. However, gave up ironing bed linen when i had children. I am trying to train myself to do some things right handed but its quite difficult.

I realised this weekend that i will probably never be able to play tennis again. I am useless at it but used to like a knockabout in summer with my kids. There is no way i would be able to train my right hand so its another pleasure killed by this awful disease.

My iron has a seperate steam thing, but i wouldnt say its any lighter than others.

Thanks again for your advice.

Linda

8

Hi

I have a husband and two sons, too. You’re right, they don’t view the state of the house in quite the same way as we do! Having said that, I too can can tolerate a high degree of domestic squalour as I’ve always thought that housework is just something you do when there’s nothing more interesting around - or when expecting visitors…!

I did actually speak to my sons about this a few years ago. I asked them if they’d like the house a bit more like the way XYZ’s mum kept hers. The response was a resounding ‘no’ and ‘we don’t feel comfortable when we go round there’. They are pretty well grown up now, but they’ve never said to me that they wished I’d spent more time scrubbing the kitchen floor…in fact, no-one ever walked in and said 'hey, fantastic housework!. It’s a thankless task!

And you know what they say about houses…‘Clean enough to be healthy, dirty enough to be happy’.

I think it was money well spent to use a cleaning firm, as this must have given you some peace of mind and a sense of control. I’ve used a professional oven cleaning service before - they were great - worth every single penny.

What a bummer about the tennis - I do feel for you - badminton was my game…

X

S

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Irene,

If you think your sleeve is too tight, I would say don’t wear it and try to get an emergency/cancellation appt with your lymphoedema nurse asap.

The American website ‘stepup-speakout’ has a good section on what a well fitting sleeve should look like, with pictures, which might help.

I can’t post the exact link, but if you translate…

w x 3 dot stepup-speakout dot org

you should end up on the (excellent) home page and it’s easy to find the links/info’ from there.

Is your arm improving in the cooler weather?

X

S

10

Hi Linda,

If you persevere you should be able to do many things with the wrong hand. I have been ironing left handed for over two years now. It was very strange at first, but now it is automatic. I swap the iron to my right hand for the occasional fiddly bit, but otherwise always use my left. I also pick up kettles full of water left handed, and strain heavy pots (eg potatoes for five) with my left hand.

I agree with you over tennis though. I tried to have a knockabout with the family on holiday last year, but was useless left handed. However, it’s not an issue with me as I only ever play on holiday with the kids. I am a church bellringer, and have trained myself to take the strain with my left hand - I ring two-handed, but only use my right for guiding the rope not taking any weight. I also swim regularly. Before dx I always did front crawl, now I do 3 crawl to 1 breaststroke, so I am varying it a bit.

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Hi S

What a lot of useful info about ironing and cleaning. I hadnt thought of the extra weight of water in iron. I guess I am lucky (!) depends which way you see it as only have husband to look after no children! Since op like you say I limit ironing to about 10 mins and do in 2/3 lots instead of all at once. In recent hot weather I did it in the evening.

I have never been that house proud. Like you say when visitors come! A regular cleaner is out the question as we couldnt afford it. But I have thought of using more convenience foods ( I like cooking!) and having heavy groceries delivered. With petrol at over a £1 a litre it may work out cheaper. Just my thoughts anyway.

Regards
x

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PS I wonder if my recent unfortunate experience in John Lewis re bras (on another post) may have contributed to things getting worse. I always understood you shouldn’t wear anything tight; bra straps, watches, rings, elastic sleeves etc.

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Bahons2, hand less puffy, not wearing sleeve today, been in work and soooo busy forgot to ring nurse will do so tomorrow, thanks for link will give it a go.

Irene

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Hi all,

Thanks for your info. I am not really house proud, honest!! And one of the advantages of having boys is that neither are they. My darling late mother was so untidy and i used to cringe when my friends came round when i was a teenager. Thats probably why i worry so much about it now.

What i have noticed is that i use my left arm involuntarily. What you said about pots road runner. When i was making dinner, i noticed i just pick them up without thinking. Obviously last night changed but there are a lot of habits i am going to have to get out of.

I love the way the arm looks and feels almost normal first thing in the morning - doesnt last long. Oh and it doesnt get so big in cooler weather.

Thanks for advice all.

Linda

15

Linda, interesting what you said about the weather. My LO nurse is going to try and fit me in tomorrow, and will even come to my house, as we are both going away soon, me to a hot climate. I looked at the site that had photos of how a sleeve should look if fitted properly. Very useful, mine def does NOT fit properly anymore as arm size has increased.

Irene

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Hi all

Good to hear that now it is less hot, people are more comfortable. We all swell up in the heat ('specially feet and ankles) but our missing lymph nodes mean it’s even worse for us.

And great to hear that the website was of some use and you are going to get a visit from the lympho nurse, Irene.

Just another thought about housework, Linda…a lightweight cylinder cleaner works best for me - anyone else? Ditched the Dyson a long time back - couldn’t get on with it at all.

And yes, I have two nice arms in the morning, too. Hope your trip to the therapist goes well…

Take care, all

X

S

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Hi bahons/Irene,

Hoovering, that really is hubby’s job, he is so much better at it than i am. (tee hee)

MLD was very relaxing and she showed me some simple stuff to do. She said if i keep it up and wear sleeve regularly, i can retrain the body to move the lymph the other way. Intend to have regular appointments (finances permitting).

Arm feels a little less tight now so must have done a bit of good.

All the best
Linda

18

Linda, glad your MLD has helped.

Got to see the LO nurse today. Apparently my arm is same size as last time, but my hand is bigger. She checked the sleeve and assures me it fits, just looks like it does coz I’ve got chunky upper arms! She has agreed to swop to a type with a knitted top which she thinks will feel less uncomfortable.

Got advice about travel to hot climes, and a new booklet to remind me how to do the massage which I admit I wasn’t doing till arm/hand began to bother me again.

Thanks for all advice, will report back after hols!

Irene

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Still waiting for the new sleeve and larger hand glove and gauntlet, apparently my surgery are very slow at getting them so worried I wont have them in time for my hols next week.

Have decided that I will wear garments on flights and in appartment, but not wearing it outside, it is just so hiddeous, and fed up of the stares.

Does anyone know if I could wear the sleeve in bed to keep off mozi’s and not in day?!

Irene

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Hi Irene and all,

Re: your question about wearing the sleeve at night. Well, from a mozzie point of view, it could well make life more difficult for them, but some insects can sting or bite even through compression garments, I’m afraid. So I think repellent would be a good idea, too.

From the lymphoedema angle, wearing a sleeve at night doesn’t do as much good as a sleeve works best when the muscles beneath it are being used. But it’s better than not wearing it at all.

Have you got one or two long-sleeved lightweight tops that you could wear with your sleeve, etc, for part of the day? Would that be an acceptable compromise for you? I know what you mean about the stares. The sleeves are so much more noticeable than a fat arm on its own. Not the way to increase patient compliance! No healthcare professional expects us to go round with bits of prosthesis showing, yet we’re expected to happily exhibit this hideous bc badge to the rest of the world.

X

S