Rebecca A Withey: A conversation with breast cancer survivor Sarah-Jane O’Regan (BSL)

English transcript: 

Rebecca: So, today I’m happy to be chatting to Sarah-Jane O’Regan who is from Ireland. Sarah will be using ISL (Irish Sign Language)  and we have an English transcript too for people to follow along. So welcome Sarah-Jane from the Limping Chicken!

Today we will be sharing your personal journey as you’ve recovered from a form of breast cancer. Would you like to tell us more about the very start of it all?

Sarah-Jane: Yes, it’s lovely to be here Rebecca. I’m so happy to finally meet you, I’ve seen you a lot on social media! So yes I was diagnosed with breast cancer in 2022 in the very, very early stages. Most of us are aware of breast cancer symptoms such as lumps, changes in the breast and so on.

But the type I had, it began when I was breastfeeding my baby she was about 3/4 months old at the time. I noticed a lump in my left breast. With breastfeeding it’s common for breasts to change size and texture but I wasn’t sure what it was so I decided to go to the doctors.

Strange story though as just before that I had a tarot card reading – just for a laugh really. It was during covid times so I wanted to try something different and it was over video call. The reader told me how the cards said I was worried about something and that I needed to see a professional about it. I was taken aback as I was worrying about the lump so I decided that was it, I’d get it checked out.

My GP told me I had to wait until after I had finished breastfeeding for me to have a mammogram but they said they weren’t worried. I found this reassuring coming from the doctor.

At around 19 months my baby had stopped breastfeeding so I went for the mammogram for the left breast where the lump was. After they checked that they called me back in and asked to check my right breast. I thought they’d made a mistake here and I told them it was the left one that had the lump.

They told me that they weren’t worried about the left breast but they were worried about the right. I couldn’t believe it – there were no symptoms, no lumps, nothing in that breast! It turned out that the lump in my left breast wasn’t even cancerous! It was linked to breastfeeding.

They found from my right breast that I had DCIS so basically the cancer cells were in my milk ducts but hadn’t developed – it was just a matter of time before they did. Maybe the following year who knows!

I had never heard of DCIS. They explained that it was basically stage zero and that I would be guaranteed to recover 100% as it was caught early. I asked about the treatment and they said it was – a radical method in their words – a mastectomy. I wasn’t expecting that at all! I felt like it was such a huge jump to imagine myself having a mastectomy.

I thought I could have radiotherapy or partial removal but they found the cancer cells all over the breast so the only option was a mastectomy. I was shocked by this and it really hit me how life changing it was.

I asked them about my other breast – would this eventually be the same? Was it just a waiting game, a case of “when” it would happen and not “if?”

I was told it was my choice so I decided to go for both breasts with the mastectomy. That was two years ago on September 1st when my little girls started school.

Rebecca: My goodness. I can’t even imagine that. How did you access information through all of this? Did you have an interpreter with you?

Sarah-Jane: I didn’t have an interpreter for it all. I knew my GP quite well already and could lipread them fine and I can use my voice. With the hospital – remember it started around covid times so a lot of the staff wore masks / face coverings so that’s when I used an interpreter.

I didn’t want the burden of having to lipread I wanted to just be the patient. I only had 90 minutes there to ask questions – so afterwards I felt like I still wanted support and to ask things. The Irish Cancer Support service is mostly held via telephone or through email – there was nothing face to face or in my language – ISL.

We do have one small group called the Deaf Daffodils – but it’s very quiet. I reached out to one of them and one lady invited me to her home. She told me about her journey which was a different journey to mine but she had a mastectomy too.

I did struggle with the thought of what my body would look like afterwards and I also had to make a choice about reconstructive surgery. It all happened so quickly like I had to make a decision for next week as everything had to happen at the same time.

That time I wasn’t sure whether to remove just one or two breasts. The deaf lady from Deaf Daffodils that I met – was so lovely. She made me tea, gave me flowers, gave me such compassion and support. She understood how deaf people rely on things visually – to imagine and to feel what something would look like – so she proceeded to show me what her body looked like now.

I thought, wow. It wasn’t as scary as I imagined. From seeing her I felt a sense of relief and knew that I would be okay as it looked fine. Leaving her home I knew I definitely wanted both breasts removed and which method to reconstruct with – using implants.

That support was invaluable and made me realise a lot. In the UK you have MacMillan services, signing services too. MacMillan in the UK has 90 staff members. In Ireland there’s just 3!

So it’s been a struggle and that’s why I reached out to IDS – Irish Deaf Society. It’s similar to an organisation you have…

Rebecca: The BDA?

Sarah-Jane: Yes, the BDA. So here in Ireland I’ve been working with the support of the IDS to encourage the ICS  (Irish Cancer Society) to improve their service and specifically make their services more accessible to deaf people. The IDS and ICS are now in communication with each other so I hope to see a positive outcome.

Rebecca: So it’s your mission now to raise awareness, raise support after you only really had the support of one deaf person who had a similar experience. Did you have the support from family, friends, especially after covid were you able to meet etc?

Sarah-Jane: oh yes at that stage we could meet, hug, didn’t have to distance ourselves. The support was incredible. The Irish deaf community is very small and in a typical Irish way the word got out during mass!

My mother went to mass at the Deaf Village and asked the priest to say a prayer for me and my upcoming operation. Everyone was immediately concerned and I was inundated with messages and mass cards.

I’m not really religious but that act of support really meant a lot to me. I still have this huge pile of mass cards now! My family and friends would drop everything to support me – they were really amazing.

I felt like I had my own army going into battle with me! My girls would buy me small thoughtful things like a coffee cup, new pyjamas, lovely books. It meant a lot to me.

Rebecca: It seems the journey you’ve been on with the diagnosis was hard, I’m wondering for anyone watching this who may be going through the same or a similar diagnosis, or have recently had a mastectomy and may be struggling – what advice would you give?

You seem to still have a lot of hope and joy inside of you. I assume it hasn’t damaged your perspective but what advice would you give to someone watching this?

Sarah-Jane: It is very hard and it can be very overwhelming. I may seem cheerful and positive now but at the time I had a lot of bad days or dark days. The one thing that really helped me through it was remembering to take it one day at a time.

Sometimes you may need to go one hour at a time. My fear was “do I look ahead? Do I have a future?” Or I had questions about what my future would look like. Trying to answer them doesn’t put you in a good place. So I just took it one day at a time.

If you’re going through this, please reach out don’t keep it all to yourself. It’s okay to be a private person but there’s a difference between being private and squashing your feelings.

Look to the people around you who love you and want to support you. Tell them what you need or if you need to chat. You don’t have to always talk about breast cancer, do something else, go for a walk, do something that brings you joy!

Rebecca: Thank you so much for sharing something that is so personal to you. I’m hoping this will benefit anyone else who may be going through the same. They can look to you as a role model! Thank you for sharing your joy with us.