Living with Lymphoedema

Life has been very full this last year. Lots of travel! With this has came some demands on my body and costs. All has been going well in my recovery except for now I have Lymphoedema.

Southern African Desert

Southern African Desert

When I returned from Southern Africa last October my left arm was tight and I had pain in my chest wall. I went to have a check up with Carol, my lymphatic physiotherapist. The lymph fluid was up to 18 points.

After some soul searching and reading, I recalled that at the end of our trip I had a small scratch on my upper arm. This took a long time to heal. I probably had an infection without my knowing it. The result? Lymphoedema. “I’m going to get you a new tailored compression sleeve”, Carol said. This had to come from Germany.

The possibility of Lymphoedema was not spoken about when I got breast cancer. In fact, none of the possible after affects of treatment were discussed with me.

imageI must have gone onto a register after my first surgery. A few days later a package arrived in the mail from the Breast Cancer Network Australia. It included several booklets with details on all aspects of breast cancer and what could happen afterwards. My Journey Kit is a fantastic resource and one worth requesting if it’s not sent to you. Visit

My experience of reading the information was like sifting. There was so much there. What do I need to know now? Later? I concentrated on the information I needed to know right then, not fully understanding the magnitude of the journey I was about to go on and the ramifications of the immediate decisions and action I would take.

I didn’t want to have the axiliar nodes removed and got a second opinion. “No”, I was told, “all the nodes will have to come out”. I have subsequently asked my surgeon, “could you have done a test to check whether there was cancer in these nodes?” He said ‘no’. I understand some surgeons use a dye to test for this and if there is no cancer, don’t remove them.

I couldn’t glean from the booklets what living with Lymphoedema would be like. I think I am reasonably lucky that I have mild Lymphodema.

Summer in Sydney arrived soon after my new garment did. It’s not exactly the fashion accessory I was planning to wear with my beautiful dresses and summer clothes. As the summer heat increased, so did my Lymphoedema. Three months of wearing the sleeve for eight hours a day increased to all waking hours for six months, three episodes of bandaging, the addition of a glove to stem hand swelling and weekly lymphatic massage (only a fraction of which is claimable with a private health fund) ensued. My fluid rose to 23.5 points. Not a laughing matter. All this care and the Lymphoedema was getting worse.

Then GOOD NEWS! Last week I got completely fed up with it. My husband said, when I was getting dressed, “you’ve got a bit of a roll over those jeans”. A completely harmless, true observation. More like ‘a red rag to a bull’ for me. I lost it. I wasn’t really upset with my husband, I was upset with myself.

I’d been fractious for the previous few days and couldn’t work out why. Was it that I was out of my routine after travelling again? Or that I hadn’t made the time to work on my new business idea? As I ‘flew off the handle’ and started to vent about my arm, the fluid being up in my body and my digestive system not working well, having put on weight, I let go of much pent up emotion. My calm self disappeared and I verbally attacked myself.

My husband realised mentioning my roll was not a good idea. His demeanour changed from one of mocking fun, to love and compassion. “I love you. You’re gorgeous. You’re perfect the way you are”, he said. Phew! At least someone was looking at me positively in that moment.

A few days later I noticed there was less fluid in my wrist and less pressure in my arm. When Carol measured me on Tuesday, my fluid had gone down 7 points. The best result since my October visit.

Caresia Sleeve

Caresia Sleeve

What caused this? The cooler autumn weather? My emotional outburst at my body? Washing my sleeve and glove every second day? (I hadn’t realised this would make the sleeve more effective.) Getting back into a care routine with massage. The big change we had made here was concentrating on massaging my breast to release the fluid there. We’ve since added wearing a Caresia (soft quilted) sleeve to bed each night.

Breaking up the lymphoedema

Breaking up the lymphoedema

Whatever it is, I am thrilled the fluid is starting to diminish and I may have the prospect of discarding my sleeve, eventually. I am trusting the way fluid is breaking up at night will make the difference.

Whilst inconvenient, unattractive and sometimes painful, I am fortunate that I am not stopped from doing any of the activities I love – gardening, walking, yoga, Pilates, skiing. In fact I think it is better when I exercise each day. Certainly life is better.