Forum Discussion

Cosette's avatar
Cosette
Member
10 years ago

Hello, there, lumpy lady

I came across this humorous article about a very unfunny subject: lymphoedema.

Dr Emma Jane  is Senior Lecturer and Australian Research Council DECRA Fellow. She's written a Q&A on lymphoedema that can be shared with family and friends to help them understand this little talked about condition.

Fact: Since January, everyone in the entire universe has been pointing and jeering at the humungous lump in my groinal region.

"What a freak!" they scream at me from across the street. "She must have elephantiasis of the lady parts! Chuck her in a mid-16th century circus cage at once!"

OK, so maybe that's not a fact so much as a complete fabrication. But it is an accurate portrayal of how I feel right now, which is abjectly miserable, self-conscious, and socially dysmorphic.

Read the whole story: I have lymphoedema, but here's why most people won't know what I'm talking about.

For those of you affected by lymphoedema, how do you talk to family and friends about it?

lymphoedema

4 Replies

  • lrb_03's avatar
    lrb_03
    Member
    10 years ago

    Thanks Cosette. I think part of the issue is that most of my friends are in the health profession, like me, & are also struggling with it all, and trying to find a way for me to continue to do what I love. I've been dipping in & out of the ALA website, but hadn't seen your factsheet, so I might share that around. 

    Take care, hope you're having a great weekend, Lyn

  • Cosette's avatar
    Cosette
    Member
    10 years ago

    Hi Lyn. I hope your friends learn more about lymphoedema. It's not something most people have ever heard of so it can take time for them to learn more. Maybe you can share the above article with them. We also have a fact sheet on lymphoedema that might be useful. You might also want to check out the resources at Australasian Lymphology Association. Best of luck!

  • lrb_03's avatar
    lrb_03
    Member
    10 years ago

    Hi

    My lymphoedema started/ was diagnosed the day I started radiotherapy, 6&1/2 weeks post lumpectomy & axillary clearance. My physio was reluctant to call it at the time, but I'm hoping we've caught it early. Still early days for me, as I only finished treatment eight weeks ago. 

    I do get quite down about it, mainly as it has such an effect on my work life, and I'm struggling to get friends to understand that at this stage I can't just leave my sleeve off for the time I'm at work. 

    Lyn

  • Afraser's avatar
    Afraser
    Member
    10 years ago

    Many thanks for sharing the article!

    I have had lymphoedema for over two years - as the article says, it's not going anywhere but it's manageable.

    It's in my arm, as many mastectomy patients have it, because of the lymph nodes removed as part of my surgery. I have a regular therapist, do manual clearing myself at home, regular exercise specifically for my arm, regular exercise generally and wear a compression sleeve.

    My arm does not look weird - I recognized the problem relatively early, and my therapist got the excess fluid down very quickly. Now we are on maintenance. So I don't really have to explain anything very often apart from my "arm and hand" as I call my compression sleeve and gauntlet! If I don't wear them, nothing looks amiss - my skin is soft as normal, it isn't grossly swollen. If you hold both arms out close together, you can see that one is a little fatter than the other sometimes (and very susceptible to pressure marks!) but not otherwise noticeable. Of course if I don't wear them for any length of time, we undo all the good work so not advisable. When wearing them, I just tell friends that it's to help my fluid movement and emphasise that it's nothing at all to do with blood! People worry that the fluid is actually your blood flow and that sounds scary.

    Strangers are more likely to ask - taxi drivers, drunks on trams! My answers depend on my mood - bionic arm is always a good one.

    I have got very used to wearing it, and haven't had too many problems. I have never had an infection ( I work,  garden and have a cat). Ask your therapist about the Lymphoedema Register. The more the Government knows about how many people have this problem, the more we may get some assistance (therapy costs money and my current compression garments - not the first I have had - cost about $400).

    Good luck - when it all gets a bit much, remember that the alternative to treatment is worse!