As part of our Customer Stories blog series, we talk to Erilan customers about their breast cancer journeys, the hurdles and discoveries they have made.
Recently I had the privilege to speak to a couple who have been together for a long time. It was obvious that they knew each other well as they comfortably started and finished each other’s sentences and seemed to know what each other was thinking. This is their story about Brenda’s cancer journey.
Hello Brenda and Warren, how are you both today?
We’re very well, thank you.
Brenda, 50 years ago you had breast cancer and your right breast was removed. That is an amazingly long time ago, which is wonderful in itself. Can you remember back to those days and what was it like?
Yes, I can remember. I think I just accepted it then because I was younger. After that surgery I had to follow up 6 weeks later with having my ovaries removed. My surgery was in Wollongong, and that was the way they did it in those days. The only problem was that I went straight into the change of life at the age of 26 with two little boys, the youngest just 12 months. That was harder, I think, than the mastectomy.
Was that because you regretted that there would be no more children and felt that your femininity was diminished?
What do you remember of that time Warren?
I remember coming home from work one afternoon and finding Brenda sitting crying on the lounge. I asked her what was wrong and she replied, I don’t know. With that, I rang the doctor and he said go to a chemist, I will ring them now because I have been waiting for this. It was depression about 6 months after the operation.
Brenda, How did you cope with the depression?
Medication was the main way. It got me back on an even keel.
I never spoke about my cancer or surgery or how I was travelling because when I met people they would be just be staring at my chest. They would be looking and asking which one was it? It’s only now, 50 years later that I thought; why not talk about it now? Things are different now but then it was very uncomfortable.
What is something you remember from those days Warren?
One of the hardest things back then was the lack of support. There were no prostheses or mastectomy bras back then.
What did you use as a prosthesis Brenda?
My first prosthesis was a little sack filled with birdseed. I was told at the hospital to make something when I went home. That was difficult to face at the age of 26.
Were there any side effects from your surgery?
Yes, I did get Lymphoedema in my right arm. I had to wear a tight pressure bandage. Anything would set it off if I using that arm too much such as trimming too many trees. My arm would just blow up. I haven’t had it for a long time now. I didn’t do anything special, it just stopped happening. It would be five years at least since I have had any swelling. I never had any massage just wore a pressure bandage that I bought at the chemist.
Was there any option back then to have a re-construction?
No, it was never heard of. It was years later that I heard about it but I wasn’t keen to have something like an implant put into my body as I thought something could go wrong with it. I never had HRT either. I could’ve had it to help me with the change of life but I thought why put hormones back into my body when they have just got rid of them. I thought it might stir the cancer up again. It was hard, really hard going through the change of life at that time but I don’t regret my decision.
How do you perceive treatment has changed since then?
I had a radical mastectomy where they took the away the flesh right down to my breastbone and up very high as well. And that caused another problem. Even now it bugs me – I see a frock and think, that’s nice, but when I look at it closely it has a low neckline, which I can’t wear. It was very difficult to find suitable clothing. I remember I just bought a bra dress in 1968, when they first came out, and then this cancer came up. So I took it back to the shop and came home with a pink chenille dressing gown because I couldn’t wear it or find anything else suitable. I still find it hard to buy clothing. Just now I am looking for a kaftan, but everything is too scooped in the neckline. There is nothing basically that I can wear. My mother used to make clothing for me.
Another difference is that, unlike now, I didn’t have any specialist nursing and was in hospital at Bulli, where the operation took place, for about 10 days.
Was there any support when you went home?
No, nothing. You just had to get on with it. I think my two boys kept me going. Warren wasn’t any help as men usually weren’t in those days because they didn’t understand. I think he understands more now as he’s on hormone treatment for his own cancer and is more appreciative of what I went through. As I had two small children I had no choice but to pick myself up, dust myself off and get on with it. It was as simple as that. I have always been an independent person, pig-headed Warren would say, but it got me through. It’s no use sitting down crying in the corner.
What do you think are some of the major changes between now and 50 years ago?
The main differences are access to breast care nurses and the support from people as well as the discoveries and treatment. Oh my word, the breast care nurses and the support. And to be able to go to places like Erilan and get what you need. Before, I had to go to Sydney and get what I needed.
I remember my first breast form had something like little clear crystals in it and it was just a blob. The bras didn’t have pockets. I used to make my own with something like taffeta.
So what does the future hold? How are you coping now?
Fine, no dramas.
Has it changed your relationship at all?
No. Warren always said that he didn’t like that boob anyway!
Some women feel that they look awful after surgery.
I always thought I was ugly. My word I did.
Do you still think that?
Yes and no. Just the other month I went to a doctor to have my cancer check-up. The first time I went to him he asked me to take my bra off and when he saw me he made a horrible sound and recoiled. I thought, you bastard! And he is a specialist. Now, he says I needn’t take it off but he did that first time.
When I first visited Jill at Erilan I was uncomfortable about being seen and fitted but now I am quite at ease.
It’s often said that people find a new interest after cancer and that pets are therapeutic. Is that why you breed and show dogs Brenda?
It was three years since my cancer treatment and we were in Perth. A lady over the road had a cocker spaniel that had a litter and there was one left. She suggested that we take it and show it. It was the ugliest cocker spaniel you had ever seen but we thought she was beautiful and she did manage to get one blue ribbon during her life. But the bug bit us and it became out interest. I didn’t drive at that time and I had to catch a bus if I wanted to go anywhere. I guess it allowed me to think and care for something else and not focus on myself.
Through our dogs we have met a lot of people and made a lot of friends over the years. And as Warren has always said, with dogs you don’t have to ask for their love, they just give it. So when we moved back to Sydney the dogs came too plus a canary and black Persian cat.
Do you think you have to live each day as it comes?
Yes, we do now because we are getting older, not because of the cancer. It’s been 50 years now so I think it’s gone. We don’t let cancer rule our lives.
You said 50 years so do you think it has taken you this long to be at ease and to feel it won’t come back?
I think I’ve felt like this since my last mammogram. I thought, well that’s it; I’ve just got to get on with it. I won’t get checked again because I’m over 74. The same with pap smears. But I am concerned for my two granddaughters as I have had breast cancer and their other grandmother died from it. And Warren is concerned for his family, aren’t you?
Yes, I am. I have a hereditary gene in my family, which causes a heart condition, and I have prostrate cancer as well but some in my family are burying their heads about the need to be checked and be proactive. But these things have to come forward and be spoken about.
What have you learnt from your journey Brenda?
Don’t let cancer rule your life. It’s not a death sentence today. I was too secretive about my situation. I should’ve talked about it more. I would’ve most probably had more peace of mind if I had discussed it.
Any thoughts Warren?
I agree, don’t let cancer rule your life. We’ve reached the age of 76 and we’ve had a good life. We’ll just enjoy the life that we have left.
Brenda enjoying time with her grandson.