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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Members Stories

Throughout this page I will be featuring member's comments and stories.  Everyone who lives with lymphoedema has a story, some positive but many more tell of the challenges they face every day.

I am lucky that I have always been a prolific writer, although these days because my arm and wrist ache I tend to type more than write. Writing can also be cathartic, you can write a list of pros and cons re your lymphoedema.  You can put your thoughts down without offending other people and it is also lovely to go back 12 months later have a read of your thoughts and see how things have improved.  So give it a try.

Julie's Story

"I find that having lymphoedema is a constant reminder that I 'HAD CANCER'.  There is no getting away from it, as it is always there. 

Those compression garments are a real pain to get on, on your own.  There are days that I can't even get it on.  I have to ask my family or friends to help me put the compression sleeve on.  I have trouble getting it on as the medication makes all my joints ache, which gets me down as well, if I had not had cancer I would not have these problems." 

Thank you to Julie for sharing how you feel and allowing me to put your words on the website.  I think Julie's post is a powerful one.  Her feelings are shared by other lymphoedema patients who face the same daily challenges.

Elaine's Story

"I have had primary lymphoedema in both legs.  Because people in my family had lymphoedema as well I really didn't see it as a big problem. 

We were told there is no cure so we got on with our lives.  There certainly where no lymphoedema clinics to go to.  My father use to bandage his legs every morning before he went to work.  Two of my brothers and I developed it in our teens.  My sister was the only one who did not inherit lymphoedema.  For my older brother and I, it was a nuisance but my younger brother suffered a lot of cellulitis.   

I have now had lymphoedema for over 50 years and it wasn't until I recently joined one of the Facebook sites (L-W-O) that I learned about 'secondary' lymphoedema.  My first visit to a lymphoedema clinic was in April 2014.  I know nothing about MLD until I joined Lymphwhatoedema so this is all new to me and I have yet to master the technique.   

I am looking forward to the day when I look in the mirror to see a normal pair of legs again. 

Forgot to say my son now has Lymphoedema and so have his two daughters.  His sons do not show signs of having lymphoedema." 

So the above was Elaine's story posted in her own words and I thank her for allowing me to add her story to this website.  Elaine's story is poignant because she has lived with her condition for over 50 years.  Lymphoedema has affected four generations of her family.

Heather's Story

"My biggest frustration is that we can't ever put cancer completely to the back of our minds because the lymphoedema is a constant reminder.  Also I get frustrated that I have to think before I do anything with my bad arm, whether its carrying something, lifting, cleaning, even stroking the dog.  When stroking the dog, I have to use my good arm just in case it turns around and bites me.  I also hate the fact that I can't write properly anymore for any length of time as it's in my fingers.  There's probably loads of other things".

Heather's answer is something I can relate to.  I have a very dear friend and long term friend that I love to go and see but she has 2 dogs.  Both dogs are very excitable and tend to jump all over you, many times I have come home with scratches, often breaking the skin and even drawing blood.  Luckily for me its has never caused an infection.  I find now I start to make excuses as to why I can't go and see her.

Like Heather, writing has also become a problem, I used to have fairly decent hand-writing, not any more and my hand gets tired very quickly.  It is a good job I can type, but even this can be quite tiring.  Lots of our members also find working off Tablets and Mobiles for any length of time causes elbow, finger and wrist pain.  We live in a technological age and computer skills are a necessity.  For some the list below might seem insignificant but until you have been in this position you can't understand the stress, anger and frustration this causes.

This is Mary's answer.

"I agree with Heather, it's a constant reminder of having had cancer.  Two years after diagnosis it would have been nice to be able to put it to the back of the mind occasionally.  It's frustrating that friends and colleagues think that I am over the breast cancer now and that I have moved on.  They've no idea what it is like".

Gill's story

Most people see a bit of swelling.  For me it was the final straw post cancer.  I live with it and it is controlled but I hate it, just another way I feel different. 

L-W-O helps as I don't feel so alone.  I hate the 'what have you done to your arm?' questions from total strangers.  I want a card that says 'lymphoedema' - Google it."

My Story

Having had breast cancer, I had an operation, two sentinel nodes removed and radiotherapy.   My lymphoedema was caused by the radiotherapy and I was diagnosed with breast and posterior chest wall lymphoedema, to give it its official title.  Therefore, my lymphoedema cannot be seen which then becomes difficult to explain to people because I don't look as if I have anything wrong with me.

I don't get the same questions thrown at me as other lymphoedema patients whose compression garments can be seen.  So I don't get questions like "what is wrong with your arm"?

My lymphoedema still brings challenges to the way I dress and clothes that I wear.  Clothes are made in standard sizes between 8-24 or larger sizes.  Wearing a bra has been very difficult.  In the morning I could be a 'C' cup, then as the fluid builds up in my breast and under my arm by lunch time I could be a 'D' cup.   By the end of the day I could be a 'DD' cup.  That meant I would be having to change my bras twice or three times a day.  However, if your are doing your best to live a normal life these changes are not always possible so by the end of the day I was very uncomfortable. 

I found a company who measured, fitted and supplied me with bras that move and expand with me.  It took me four years to find a bra that would fit me properly.

Since my breast cancer operation and the radiotherapy, dresses and tops never seem to fit right and for a while I was very self-conscious that clothes didn't sit properly.  Luckily for me, a friend recommended a local seamstress.  Now I have someone who works with me, makes the alterations I need and thoroughly gets my lymphoedema.  While I haven't solved all my problems, I have at least been able to sort some of them.

One members thoughts

"Yup, life doesn't re-run to how you remember yourself.  Other 'diseases' heal, and 'you' return,  whether its chicken-pox or pneumonia or a broken bone.  Not with cancer... your head space might be 'back' but your body keeps changing, and you need to constantly support it like a child.  Quite difficult.  No one gets any guarantees in life, and for sure there are always people with far worse and there are those who've never known any different.  I feel I've lost my best years to just staying well enough to survive and making a living.  I know that's not 100% true, but its hard not to think about the 'would have been' some days.  I gotta just remember that it is only takes a day for things to change for the better again, if I am open to it."