thanks Tigerlilly and Elinda thanks for the pre warning about the portacath as mine is on the side that im going to have the lymph nodes removed so perhaps i will now mention that and ask them to remove the portacath at the same time. I only have to have Herceptin now but my veins are rubbish.
I have sourced a private specialist should i get lymphodeama and she has trained here seems its the best in the world. Thought it may be of interest to others. The Dr. Vodders school.
Hatty - you’re treatment really is more important than lymphodema. Personally if I was still using the portacath I wouldn’t have it removed.
Thanks for the link, I’ll take a look at that.
Some may already have this but thought I would put it on here.It shows some simple lymph drainage.
If you scroll down to manual lymphatic drainage (green writing),click on that and then scroll down to simple lymphatic drainage,click on that and it takes you to some diagrams of what to do.
Other link didn’t work.What a palaver lol.
Melxx
Hiya
Thanks everyone for all the advice
Just wanted to add that I find taking anti inflammitories (diclophenic) on a regular basis ( not just when i have a flare up) has helped my swelling. It doesn’t go away but does help it, especially if i know I am going to have to be using my arm. Another thing don’t accept just being given two sleeves, insist on more, when i got my perscription for my last two, a week later I gave in my perscription slip again to the GP surgery for two more.
like norberte I use lots of the thin lattex gloves. I now buy boxes of the latex gloves from the pound shop or B&M and have them everywhere. i put gloves on to go to the loo and then throw the glove.
rhi x
r xx
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hi norberte
it is the pain it eases and not the swelling you are right thank you xxx
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xwelcomex - can I ask where you learned the Vodder massage? Would love to improve the SLD. Thanks, Elinda x
Thank you all so much for taking the time to reply. I am feeling a bit better about it all now, I know it’s going to be a bit of trial and error to get the right fit etc. I’m not wearing my glove and sleeve religiously, and am only wearing it to work at the moment, tbh any swelling I get while doing anything doesn’t seem to be any better with or without the glove and sleeve and whether I wear it or not the swelling seems to go down quite quickly.
I don’t get any pain with the LD, my hand just feels tight, infact my arm aches more when I wear the sleeve.
Work have been a bit better with me and the union rep has said I can only do what I can do and they have to accomodate, me end of! I am seeing OH this week and have been to the Fit For Work Team and they have been really helpful. So we will have to see how things pan out.
Once again thank you all for your advice.
Tigs xxx
I havent got any helpful tips I can add I am afraid. I was dx with lymphoedema over three years ago towards the end of taxotere but before I started the rads. My arm has got bigger in the meantime. Could have been because I did not wear sleeve. I too have been told to wear a separate glove and sleeve and that I can only remove the glove briefly to wash hands after using toilet. I asked how can I eat an apple for instance wearing a glove. I was told eat it with the opposite hand! They are just so unhygienic. The other day I visited a friend in hospital. How was I supposed to use the hand gel wearing a glove? I wore a gauntlet but was told I must absolutely not fold back the glove bit.
It is very depressing and does not seem to get any better to come to terms with. I find people also ask why my arm is swollen which doesnt help. I have been seeing a lymph nurse every week nearly since January with no improvement. Last week my arm was put in a sort of airbed type sleeve which was plugged in and inflated and deflated for 15 minutes. The arm came down half an inch but quickly went up again. And I became light headed. It seems they do not really know what to do for the best. Although everyone is agreed that losing weight could have a dramatic effect.
Hi Tiger lily,
I haven’t read all of the thread so forgive me if I repeat what anyone else as said. I am also a nurse and need to do ANTT as part of my job, I was diagnosed during chemo with lymphodema.
I am back at work, and am probably sailing close to the wind, but I just wear a sleeve and roll back the cuff when doing ANTT. At other times I am very particular about wearing the stocking + glove correctly, doing the exercises and SLD at least twice a day. I have also paid for MLD.,the lymphoedema society provides a list of practitioners. I too was taught the Vodder technique and insist on having a meal break, never got one before, so that I can do it and the massage.
My first sleeve was also too tight at the elbow, went back to my G.P. and got prescript. for bespoke sleeve making sure they included the measurment for the widest part of my elbow.
I’am sorry this horrible side affect is affecting your life so much and hope you get the support you need from OCCI Health. My colleagues and client group have also been very supportive- I now tend to do non sterile procedures, teaching etc.
wishing you all the best
Barb.
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Starfish, losing weight really does help and it’s about the only thing we can have much influence on. Also if you look better and you know it, the sleeve has less impact because what people see is your confidence. Plus, they can’t be staring at my sleeve and my lack-of-cleavage both at once…
About the hygiene issue, my wonderful LE nurse suggests a box of those disposable vinyl gloves you can get in large DIY stores to have in the bathroom. Costs about £6 for a box of 100. I’m getting into a routine now whereby I can do any veg-chopping, meat-slicing etc (what you could call direct food-contact cooking) in the first halfhour of the day (yes, even before breakfast, urgh) without my sleeve, then go get dressed. Or last thing before bed, but I did accidentally cut myself through tiredness that time, so maybe the early morning is better for me.
For those struggling to wear a sleeve to work, you have a right to comply with your treatment plan as much as any patient has. Conditions arising from cancer and its treatment come under the disability act and the employer has to make reasonable adjustments to your duties and working conditions, including the option to redeploy you. The long term risk if we don’t look after ourself is deterioration of the LE to a time in the future when the swelling won’t go down, or you can get cellulitis after an insect bite (hello summer) which is potentially very serious. Life isn’t over after cancer, so if we are going to be here a while longer we need to get used to looking after ourselves a bit more!
Hi Tigerlilly
I haven’t been on this website for a while but you can see I have posted a topic today 30 April - basically saying that I refuse to wear the sleeve/glove thing except for gardening, housework and driving - and have still managed to get the swelling down from 28% to 18% in 2 months - so speak to your L nurse and come to a compromise - even if you try to do what I have for a couple of months as an experiment.
As far as your work goes - can occupational health advise you - an exployer has to make some reasonable adjustments if you have a health issue - hope it works out for you.
Rainforest xx