As part of our Customer Stories blog series, we talk to Erilan customers about their breast cancer journeys, including how prostheses and mastectomy bras have helped them embrace their new bodies and reclaim their femininity post-surgery.
Today we speak to Karen O’Shea from Estella, NSW, about her experience with post-surgery Lymphoedema.
Karen, tell us a little bit about yourself.
Karen: Well, I’m nearly 65 and was diagnosed in June 2010 through screening. I jumped on the treadmill that went round and round and round. It was a bit daunting but I had great support from my husband, my three children and lots of good friends. First of all I had a lumpectomy. The results of a sentinel node biopsy came back after that surgery and the doctor decided I needed to have further surgery to remove my lymph nodes. Hence, I have Lymphoedema.
What do you do to manage your Lymphoedema?
Karen: I have a brilliant therapist at the moment, Sue Butcher, who massages me regularly. I try to do what I can at home but it’s a bit hard to massage yourself when you know what the therapists do.
I notice that you wear a sleeve.
Karen: Yes, I wear a compression sleeve which helps keep the swelling down.
Do people ask about the sleeve? What do you say to them?
Karen: I say, I have Lymphoedema after my breast cancer surgery. Most times they will say, “What’s Lymphoedema?” So then I give them a brief description of what it is.
So Lymphoedema is not a well-known subject?
Karen: No, it isn’t. It’s a shame but a lot of doctors don’t recognise it as a condition after surgery either.
It is something that won’t go away but it is manageable in most cases isn’t it?
Karen: If you are massaging your arm etc you can keep it at bay but if you let it go your arm just gets bigger and bigger and it sets like jelly.
So what would you say to someone who suspects they may have Lymphoedema?
Karen: Go as soon as they can to a massage therapist. Make sure they are trained in Lymphoedema massage, as the massage is quite different. It is a special drainage massage that helps to drain the lymph fluid from the affected area. Some therapists advertise Lymphatic massage but that is different to Lymphoedema massage, which is what is needed.
How could you ensure you have a Lymphoedema massage therapist?
Karen: There is a National Lymphoedema Practitioners Register and you can go online and see who the therapists are. There are not a lot of therapists but the numbers are increasing. A lot of research is now being done into Lymphoedema so therapists need to keep their knowledge and training up to date.
Are the sleeves expensive Karen?
Karen: They are very expensive and it’s difficult to claim. You can claim through your private health fund on a massage therapist consultation but you don’t get anything for the sleeve itself.
How much did the one you’re wearing cost?
Karen: $270.00 and it’s supposed to last 12 months. I wear it every day and wash it every second night. The Lymphoedema association is lobbying the government to change the rules and allow people to get a rebate.
It’s now a little while since you were diagnosed and had treatment. How has it changed what you do now? Has it changed anything?
Karen: Yes, drastically. Your priorities change. What you thought was important before isn’t really important at all. I live for today and I don’t handle negative people. I like positive talk, positive attitudes.
Do you think that confidence is important and a good way of looking at the situation? Being happy with yourself and being confident?
Karen: Yes, I think it is very important. Before my diagnosis I was very confident. I worked in a school office and was the community liaison officer so had a lot to do with the parents. I felt really good about myself because I was working and was contributing to society. Then when I got the diagnosis, I sort of wound right down into myself.
My depression came back. I wish now that I had done more exercise and got into things earlier and got out there after all my treatment had finished. I used to travel to Queensland to my daughter’s home and have holidays up there and look after the little one but after treatment I couldn’t even get on the plane to go. I had to get one of my daughters, Rachel, to come with me the first time. I still suffer with anxiety but I’m on medication to help with that. I’ve gone onto committees and things like that and I wish I hadn’t – so it’s not good for me to get into situations like that. I just please myself with what I do and if I don’t feel like doing it, I don’t do it.
Is that one of your strategies for coping now?
Karen: Yes, it is.
What has helped you to improve your state of mind so to speak, because I get the feeling you’re in a better position now then you were say 4 or 5 years ago. You obviously do self-help but what other help has there been?
Karen: There’s Encore. It’s great and I did it 3 times. The breast cancer group helped. We don’t talk about our cancer but it’s a group of women who have a shared experience.
And I guess my daughter’s diagnosis helped. My middle daughter, Fiona, was diagnosed with breast cancer and she was undergoing surgery when I started radiotherapy. I wasn’t able to help her a lot then even though I was there for her. Then in 2015 my eldest daughter, Sonia who lives in Queensland, was diagnosed with breast cancer. She was down visiting and told me she had a lump and would get it looked at when she went back home. I said no, you won’t, we’ll get it sorted right now! So a local surgeon diagnosed her and put her onto a brilliant surgeon in Brisbane. I think my experience of being able to help them through their experiences has helped me grow.
I guess you can’t worry about yourself quite so much as you have others you’re worrying about.
Karen: Yes, that’s right.
How do you think treatment compares between a rural area and a city area? You would imagine that the city would have a lot more facilities, surgeons, help and so on.
Karen: I can compare my daughter, Sonia’s, journey in Brisbane to mine in Wagga. I had lots of help here. Everything that was done was professional from the surgeon to the McGrath Breast Care Nurses. Then Sonia went to Brisbane and was referred to a brilliant surgeon who referred her to an oncologist as she was having chemotherapy first. The oncologist was doing a trial with 100 women diagnosed with breast cancer and she was asked to go on it. He wrote a thesis on it and used Sonia as his subject. When she went to have surgery there were no breast care nurses and she felt as though she was on her own.
What about a support group?
Karen: No, we tried those. I asked my local McGrath BCN to check out if there was anywhere to go and she put us on to one place that didn’t really want to know us.
I felt like a person going through my surgery and treatment but I think Sonia felt she was just a number. I was told by a research doctor, who had also been a breast care nurse, that Wagga had state of the art treatment facilities and there was no need to go the city.
We also have the specialist mastectomy clothing store in Wagga, Erilan, which stocks everything from prostheses to headwear. Jill is professionally trained and is very willing to be flexible. Nothing is too much trouble for her.
How is life today Karen?
Karen: My attitude now is that I’ve got Lymphoedema but I’m living with it and life is what you make it. Every day is a good day. You see so many people who are much worse off than yourself.
You can get help searching for a Lymphoedema practitioner here.
The Erilan Team would like to say a big thank you to Karen for sharing her experience with us. Want to share your breast cancer story? Send us an email at email@example.com and you could be featured on our blog.