LYMPHOEDEMA AVOIDANCE

If you have all or many of your lymph nodes removed you are subject to Lymphoedema.

Following surgery and/or Radiotherapy try to keep your arm a little raised when sitting or in bed.

Never ever lie on the side from where your lymph nodes have been removed.

Moisturise every day.

Get a Stress ball from Lymphoedema Support Network mechandise and use it a couple of times a day.
lymphoedema.org

When you are out walking tuck your thumb in your waistband so that your arm is not hanging down.

E

Thank you E I only had 6 removed but it still concerning and I do tend to lay on that side in bed or on my back so Ill take this on board

xxx

Hi Emmbee,I’m getting quite worried about the risk of lymphoedema. I’ve had node sampling 3 weeks ago but because they found it in 2 out of 4 nodes i have to go in next week to have complete node clearance. I will also be having radiotherapy so i guess that makes it even more of a risk. I am trying to be sensible with my arm such as carrying my handbag on the other shoulder & not lifting heavy things but hadn’t thought of not sleeping on that side. I tend to sleep with my arm above my head on that side. Is that a no-no?
Also i use the computer all day at work, is there any specific things i should be doing to avoid the risk?
Thanks Heather x

thanks for this - I’m trying to retrain myself to use my treatment side as gently as possible and all advice is gratefully received.

Nymeria x

Hi Heather,

If I were you I would not sleep on that side at all. I did exactly as you are doing and I got Lymphoedema. What annoyed me was the fact that when I went to see the Consultant, along with my BCN, they nodded their heads knowingly when I said I slept on my bad side with my arm up. I felt like screaming at them saying ‘why the heck did you not tell me about that before’.

I have no idea about your computer. Maybe someone who does will come on this thread and give you advice. I have noticed that I rest my arm on the front of my computer desk but, it does have a raised area which makes it easy to do that.

You may be lucky and not have any problems, at least you are doing your best to avoid them.

Good luck,

E

Thanks Emmbee, to be honest i wouldn’t have had a clue about how serious the risk of lymphoedema was without these threads. I had a leaflet from the BCN but u get so many to look through. That’s why this site is so valuable. Im going to definately try & not sleep on that side & use a mouse mat at the computer, trouble is it’s my dominant right arm that’s affected so it’s even more of a pain, i think someone wrote about changing the mouse to the other side,think i’ll try that. I went to collect my elderly mother just now & found her on the floor so had to pick her up, i tried hard to lift more on the left but my arm aches now. At least she didn’t hurt herself but i just hope i haven’t done any damage! x

wow i didnt no any of this i had 6lymph nodes removed nearly 8wks wen i had lumpectomy done, iv got to av them all removed after masectomy iv been layin on my bad side since then & i didnt kno any of this how t lay or hold myself or anything,think i will think twice before i do it again tho dont want lymphoedema

thanks emmbee
Have been laying on side where I had op, will now train myself to layon other side or on back. I had lumpectomy and 14 nodes removed, 11 were cancerous. Amstarting chemo this Friday. re moisturising can we still use a perfumed moisturiser (will make me feel a bit more “normal”)? Is the stress ball you mentioned available in any shops or is this something special?
Once again many thanks for this info. hadn’t reaslised any of this.

Thank you emmbee,
I had a little advice about LD but not this specific advice about not sleeping on the affected side. Retraining begins!

Sugarsugar, (love your picture) I don’t think you have to be worried about what you have done so far, as you only had a few nodes removed, but now you know before having the other nodes removed when it will matter more.

I didn’t know about not sleeping on the affected side either! Now I think about it though, it might explain why during my stay in ICU I was always made to sleep on my left side, as the staff seemed very clued up about LD generally.

I’ve just bought myself a cross-body handbag so that I am no longer using one on my treatment side. I can’t believe how many things you end up having to think about where this is concerned. It is definitely harder when it’s your dominant side and I’m very grateful for all the advice on BCC about it.

Nymeria x

Thanks EmmBee some useful tips there.

I’m merely an ‘at risk’ girl but can I add a few tips I was given?

Carry a small anti-bacteria gel with you all the time, then if you should get even a paper cut or a nick you can quickly clean it and avoid any risk of infection. Cover any cuts with a clean plaster.

If you burn/scald yourself on the affetced side then immediately run it under cold (not freezing) water for ten minutes to reduce the risk of blistering.

Use sunscreen - I was told factor 50 - and now make it part of my daily routine… moisturise then sun screen. As well or alternatively, wear long sleeves.

Use Avon Skin So Soft as a gnat/midge/mozzy repellent! If you do get bitten keep the bites clean and protected, especially if the skin breaks.

Remove rings and watches if your hand or wrist swell in the heat; don’t force rings off - use soap or gel to ease them off if necessary.

I am now 6 months post surgery and just over 2 post rads and so far so good - but this a lifetime commitment of prevention

Note to Poodlepatch re: scented moisturiser and chemo - moisturising (head to toe) is important during chemo and I don’t think anyone will stop you, but you may find that your senses are heightened in strange ways and that strong scents become intolerable. It is importnat to find the little things that helpmake it more bearable - so if your skin and your nose can tolerate a gentle scented moisturiser, I’d go with it. If all else fails there’s E45…

Hi Ladies,

More to add to help you. I forgot to put this on at first, blame it on chemo brain.

Exercises, you must keep the lymph moving so if you can spare the time do some exercises every day. The following is a good read and the exercises are at the bottom of the PDF.

thehaven.org.uk/sites/default/files/EJ%20Lymph%20at%20Risk1.pdf

Heather,

I don’t think you need to worry too much about using your mouse. Remember, the best way to keep Lymphoedema away is to keep the lymph moving. It might help if you got a soft pad to rest your wrist on, clench your fist a few times every so often and pul your wrist up to your shoulder a few times. The lymph pathways are very close to the surface so any pressure stops them working.

Poodlepatch,

I don’t know where else you would get the stress ball but I suppose a small childs squishy ball would do just as well.

Moisturiser is fine during chemo but stay away from anything like aromatherapy oils, for instance, lavender mimics oestrogen.

Hi Rev,

Thanks for your input. Can I just add to the burns scenario, once you have thoroughly cooled the burn use some Aloe Vera gel, it works a treat. Also brilliant for when you are having Radiotherapy and the best thing for sunburn.

We are not all the same so what works for one does not always work for the other. I could not get on with factor 50 and having to keep renewing. I ended up using Calypso once a day. Factor 20 only but I was in the Canaries, am very pale and did not burn.

You are right about not wearing anything tight on your bad side. I no longer wear a watch as I cannot cope with it on the other wrist.

E

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Now we need a downloadable app (Im bluffing here, I have no idea what an app actually is, I think they replaced the old-fashioned good fairy, potter-ites think “house-elf”) that will set the kettle to be boiling and ready when the alarm goes off… I think I’ll call it a Teasemaid…

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