“Slice of Life Stories”

Living With Lymphoedema

Sometimes living with lymphoedema can feel daunting and isolating. So we asked our members to share their raw and real stories with you. We also asked them to give you their best tip.

We hope these inspire you and help you to know you’re not alone, so you can live your best life with lymphoedema.

Alicia’s Story:
I’ve had primary lymphoedema in my right arm and right leg. I’ve had it since I was 8 Years Old. When I was diagnosed, I had a lot of pain and swelling. The diagnosis has affected everyday living.

What I like about the Lymphoedema Association of Queensland is hearing other people’s stories.

Patricia’s Story:
I’ve had lymphoedema in both of my legs for 25 years now. When I was diagnosed, I was recovering from a cancer operation. I still lead an active life, but I have to do massage and bandaging each day. I play guitar and sing in a country music band, and I have a stool to sit on when my legs get tired and heavy.

The Lymphoedema Association of Queensland has helped me with new massage methods and “wraps”, which take the place of time-consuming bandaging.

Patricia’s tip:
If it’s in the legs and you’re working, take time to sit and elevate your legs for 5 minutes.

Gill’s Story: 
I’ve had lymphoedema in my left arm for around 12 months. It was caused by breast cancer treatment. At first, I was angry, but now I’ve accepted it. I exercise every day, wear my garments most of the time, massage daily and use a pump daily.

I am going to the lymphatic clinic at Macquarie Uni in August to make my massaging more effective.

Gill’s Tip:
Keep moving – plenty of exercise, good healthy food

Helen’s Story:
I have had lymphoedema since 1991 in my right leg. I was an active golfer when I was diagnosed, and I still play golf. I have managed my problem with support stockings. And 5 years ago, I purchased a pump system for my legs, which helps me keep the swelling down.

My current GP is very much aware of lymphoedema.  Most doctors & nurses have no idea what this is. I keep in touch with the publications of the LAQ, and I have looked into any new avenues or treatments that may help me.

Helen’s Tip:
I think we have to research the problem ourselves.  It is very difficult to get help with massaging as most physio people do not understand or have little knowledge of the problem or do not have the qualifications. My best advice is to keep active with lots of exercise and self-massaging.

Mary’s Story:
I was diagnosed with lymphoedema in my right leg 45 years ago when I was a flight attendant. I’ve had to teach my doctor all about my condition. I wanted to help other people who had this condition, so I was one of the Lymphoedema Association of Queensland founders.

Mary’s Tip:
Exercise, wear a compression garment, wrap every night and keep healthy.

Marie’s Story: 
My lymphoedema happened because of breast cancer surgery and treatment. I’ve had it for a couple of years now.

When I was diagnosed, I worked part-time as a teacher and studying towards my Masters in Autism Studies and building my disability therapy horse riding business. My diagnosis has made me cut back my working hours at my regular job.

My doctor couldn’t help me, and I found out that all therapists are not created equal. Initially, I didn’t get the care I needed, and by the time I gained enough knowledge, it was too late to do anything. Unfortunately, my arm became too large to return to normal.

Fortunately, now I have a good therapist, and I am taking a lot more time for myself. I now have more confidence than I used to.

Marie’s Tip:
Take time for yourself. It is OK not to be OK! You know your body best, so be your own advocate. Gain as much knowledge as you can get from a reliable source like the Lymphoedema Association of Queensland. Some regional therapists are not fully up to date with best practices and are often too time-poor. Take the time to find the right therapist for you. I now have found a therapist who is committed to pursuing best practice and is helping me manage things much more effectively!

Annie’s Story: 
I’ve had lymphoedema in both of my legs for around 10 months now. I was diagnosed as I was retiring. Wearing compression stockings over summer was very difficult. I’ve found the Lymphoedema Association of Queensland very helpful in knowing that I have support if I need it.

Alison’s Story:
For the last 23 years, I’ve had lymphoedema in my left arm. My arm blew up when I was on holidays in New Zealand. The main way lymphoedema has affected me is by having to wear clothes that fit my arm and sleeve. 

Lymphoedema Association of Queensland has helped me with guidelines to follow. Also, just knowing you are not on your own is very important.

Alison’s Tip:
Try to forget you have it and live your life as normally as possible.

Marilyn’s Story: 
I was involved in a car accident when I was living in the USA, and suddenly, my leg began to swell. Apparently, I already had primary lymphoedema, but it was not obvious until the accident. That was 46 years ago.

I have never allowed lymphoedema to affect my life.  I just made adjustments – for example, I rode horses and used to go eventing, so I had to get special jodhpurs and boots made to accommodate my “fat” leg, but I kept competing.  I would always have to hire 2 sets of boots (one a larger size to get the clips around my leg) if I went skiing, but I never allowed lymphoedema to limit my lifestyle. I adapted to accommodate it.

I suppose lymphoedema has made me stronger because I refused to allow this insidious condition to define me.

I decided to raise awareness of lymphoedema, which is why I became involved in establishing the LAQ (along with Mary Stewart and Dr Bunce and June Allison and others at that time all those years ago) to try to raise awareness about a little known condition. I have met many positive, wonderful people, and I have learnt a lot about the condition.

Marilyn’s tip: 
Make a conscious decision to always wear the containment garment, keep fit and do not dwell on what you cannot change but adapt and move forward. Make time to look after yourself.

Nola’s Story: 
I’ve had lymphoedema in my arm since May 2018. It was the result of a mastectomy and axilla removal. My diagnosis added another challenge for me to deal with both physically and mentally.

Living with lymphoedema is an incredible inconvenience, and many people have no idea why it exists or why you may have it. But life is a roller coaster with wonderful experiences (ups) and a few hold on by the seat of your pants moments (downs). And I find it better for me to embrace the ride and my friends and family along the way.

The information Lymphoedema Association of Queensland supplied is helpful, and their webinar was helpful. I purchased a book by Theresa Lee on their recommendation that helped me. The support meeting I attended was interesting, and it was helpful to meet others.

Nola’s Tip: 
Seek help as soon as you can.  Find a good lymphatic massage therapist and OT.  Do as much as you can do to wear your compression garments.  Find a positive/grateful thing about your life to make you smile daily if you can.

Jean’s Story:
I’ve had lymphoedema for over 10 years, legs, particularly my right leg, following surgery for bladder cancer. The diagnosis added an extra level of chaos to my life as my husband had been diagnosed with Parkinson’s Disease. 

I have not allowed it to interfere with what I want to do. I simply incorporated the necessary treatments into my daily life to become part of my routine- getting up – getting ready for bed etc. I have maintained as far as possible my usual life activities. I simply have to fit in some extra activities.

The first doctor that I saw looked at my swollen leg and said, “Oh yes, it’s lymphoedema. There isn’t anything you can do about it.” 

I couldn’t let it go at that. I researched, found the Association and the recommended course of action. I have continued to wear support stockings and get a massage when I have been able. My principal source of information has been online, from various sources, including the Lymphoedema  Association of Queensland.

Jean’s Tip:
Get on with your ‘normal’ life. Allow extra time to fit in, putting on pressure garments so that you are not rushed. Let family and close friends know that you may need extra time to get ready to go out. Keep it ‘normal’ not a catastrophe to be ‘dealt with.’

Jenny’s Story: 
When I was diagnosed with lymphoedema, I was living a busy life as a retiree. I was using my arm for everyday things, including photography.

I now have to wear a support sleeve every day. I also never have bloods taken in that arm. I don’t allow lymphoedema to rule my life. I just take care of it and live with it.

Jenny Tips:
It can be controlled with massage, sleeve wearing and care of the skin integrity. Beware of bites and infections which can lead to cellulitis, which will require antibiotics.

Daryl’s Story: 
Having lymphoedema has affected my life considerably. I have to have my legs pumped, massaged, and bandaged for a week, every 3 months. I‘ve had lymphoedema for 11 years in my legs (in my thighs because I have below-knee amputations).

LAQ helps me with extra information and support. Everyone has a story, but they are all very similar.

Daryl’s Tip:
Make sure you buy good quality compression gear.

Helen’s Story:
The lymphoedema in my right leg started 5 years after cancer surgery and radiation treatment. That was 22 years ago. 

All the decisions I make need to prioritise my leg. For example, I need to avoid the heat, standing, or sitting for too long. Travel is also an issue, as well as shoes. 

LAQ has helped me to feel supported and helped me to support others. I’ve gained a lot of new information.

Helen’s Tip:
Get expert advice to manage it well. Seek support from LAQ.

Story:
I’ve had lymphoedema in my right leg for 11 years. I’m very much aware of the daily discipline required to keep it controlled. My doctor hasn’t been able to help me understand my condition.

I’m a member of the Lymphoedema Association of Queensland, and I have found their newsletter, Node News and other resources invaluable!

Tip:
It must not control your life!

Christie’s Story:
I have secondary lymphoedema in both legs. A few days post-surgery for cervical cancer, I started to feel heaviness, pain and mild swelling.  My doctor informed me that lymphoedema was a possibility before surgery. But no one thinks it will happen.

When I was diagnosed, I felt deflated at first. I was still dealing with the shock of being diagnosed with cancer, recovering from a Radical hysterectomy, being thrust into menopause at a young age… and then having to learn about lymphoedema.

One of the nurses from the Choices program at the Wesley hospital called me, and we talked about the possibility of the heaviness, pain, and swelling might have been lymphoedema. She gave me the names of some Lymphoedema physiotherapists to book in with, but unfortunately, none were close enough to where I live.

I found a Facebook group for people living with the condition and found a Lymphoedema clinic at the Mater hospital.  LAQ also recommends qualified, knowledgeable practitioners that can help. I now have it managed with compression tights, compression pump and learning what aggravates it and what helps.

I can’t do a lot of the things I used to, which upset me at first. Now I accept what it is and try not to let it hold me back.

Christie’s Tip:
Get it early and learn to manage it from the get-go.

Lyn’s Story:
I’ve had primary lymphoedema of my left leg for 43 years. I finally received some treatment after 13 years of “Live with it! You’re not in pain… go away!”

It can be a struggle to maintain the swelling as it took so long to diagnose my condition was chronic when treatment started. I do replace my garment when required and check-in with a lymphoedema clinic. I do have anxiety and stress, and sometimes depression.

LAQ has given me support and information, as well as invitations to events/consumer days.

This year I plan on travelling around Australia. I’ll spend no longer than 5 hrs on the road each day with a break for lunch and stretch of my legs.

Lyn’s Tip:
Look after your skin, wear your garments and wrap at night.

Fay’s Story: 
I was diagnosed with secondary lymphoedema in my right arm 24 years ago. I had to have radiation after a lumpectomy on my right breast. The following year I had a lumpectomy of my left breast, and eventually, I had a double mastectomy.

My doctor wasn’t able to help me understand my condition when I was diagnosed. But a lymphoedema therapist at the time was extremely helpful. Unfortunately, that clinic in Bundaberg was closed, and we no longer have her expertise, which is sad.

Even so, I feel that every day alive is a blessing. I like to keep active with a positive outlook.

Fay’s Tip: 
Daily self lymphatic massage. Wear made to measure compression garments. Be careful with skincare. And keep active.