How Androulla Pieri navigated her breast cancer journey – and found mindfulness and gratitude in the process.
Androulla Pieri says that being diagnosed with breast cancer was a “bolt out of the blue.” At 46, and on the cusp of starting a new job, Androulla’s Stage 3 diagnosis came as a complete shock.
Since that diagnosis nine years ago, we’re happy to report that Androulla has become healthier and more contented in many ways!
We love her reflective, self-informed approach to managing her diagnosis. In this interview, Androulla gives us her best tips for coping with side effects and the “whirlwind” of cancer appointments.
Could you begin by telling us about yourself?
I live in West London with my partner, George. I used to work full-time as a PA in various educational, medical and cancer organisations. I was diagnosed in April 2008. I was 46 and I was about to start a new job. I had no idea I had breast cancer.
And how did you discover you had breast cancer?
I’d had a lumpy left breast for many years. And it had become lumpier and painful. Because it wasn’t pea shaped or grape shaped, I really didn’t think that it could become anything sinister. So I really never worried.
Unfortunately, it got to the point that it was very painful. I couldn’t sleep on my chest at all. To me, I could tell that the left breast was a bit bigger than the right breast. And in the end, I decided that I needed to get it checked out.
So I went to my GP, and fortunately for me, she very, very quickly fast-tracked me into the system. On that same day, I had a mammogram, I had a biopsy and a needle aspiration. I saw a consultant surgeon, and he told me after the biopsy that I needed to go back at the end of the same day.
When I went back at the end of the day, with my partner, George, I already guessed that things didn’t look good. And the consultant surgeon told me right away: “you have breast cancer.” He said I’d need a lot of tests and he told me they needed to be done quickly to find out whether or not the cancer had already spread.
Gosh – that must have been a lot to take in all in one day.
Yes, the shock of being diagnosed with cancer was one thing, but the shock of potentially already being stage 4 was very much a double whammy. It really was unbelievable.
The consultant was brilliant. He said to me, “We have to sort out a date from now for a mastectomy.” The 11 days of just waiting, and just thinking “What if it isn’t just cancer on its own – maybe it’s a potential death sentence.” There are no words. It was too much – just too overwhelming.
When we went back, George and I, to see the consultant surgeon and he told us that it hadn’t spread, and that we’d go ahead with the operation and other treatment, that relief that I hadn’t reached stage 4 was so overwhelming. For me, I was determined to see the cancer as a turning point for the rest of my life.
And as far as I was concerned, with George by my side, I was ready to face it. It might sound like a cliche, but I was so grateful that I wasn’t going to consider dying.
Of course! And so what was your treatment regime like?
So for breast cancer, it’s 3 customary treatments: surgery normally, chemotherapy and then radiotherapy.
My surgery was absolutely fine. And then the chemotherapy started very quickly – four weeks after surgery.
In terms of chemotherapy, I have no polite words. It was awful, it was so gruelling. I had six sessions over an 18-week period; every three weeks. And halfway through, the chemo nurses changed the drugs to something stronger to give me a maximum chance of being well afterwards. It was awful.
Did you have lots of side effects?
Although I had read and I knew about the physical side effects like the hair loss, nausea, loss of appetite – all those things. I genuinely had no idea about the mental side effects; both during the treatment, and afterwards with post-chemo brain. That was horrendous.
I wish I had known there was such a thing as post-chemo brain. I asked the questions, I found out over time, but I needed to have that validated, and it took a long time.
George and my close friends and family could see that I was different mentally. I was much slower. I was just not the same person.
And how are the side effects now?
So from the point of diagnosis to the end of treatment, it was eight months. And then I had to start on 10 years of hormone therapy because of the oestrogen link to my cancer. That was five years of Tamoxifen, and five years on an aromatase-inhibitor.
Tamoxifen affected me very badly. I had lots of side effects and I spent nearly one and a half years trying to find answers to them. The dripping night sweats, the insomnia, the hot and cold flushes, the bruises, the increased appetite. You name it – I had virtually everything, although I didn’t get mouth ulcers so that was one good thing.
Were there any strategies you developed to help yourself cope throughout your treatment?
I’m one of those people who has to read and research and ask questions. Everybody’s different, but for me, I needed a sense of control and almost to make myself believe that it was happening. So I did a lot of research but I found that a lot of things were contradictory.
And so I used to sit down, and I bought a huge scrapbook, and I would cut and paste information in, and colour things and put pictures; just to get my head around all the different information and how it impacted on me. And that helped me a lot.
I learned what foods would help me and what wouldn’t help me. I learned little practical things. For example, when I had the surgery, the nerve end pain was huge. I couldn’t sleep until I realised that if I put a small pillow under my armpit, I could lean my arm very gently onto it, and I wasn’t in agony (read more about the innovative mastectomy pillow made by a breast cancer ‘previvor’). So there were little things like that – for clothing, I had to have things altered if the neckline was too low or if it was too open at the sides.
Things like a Chillow pillow really did help with the night sweats. Also, having quiet time – I hardly went anywhere, I just rested. But most of the time, I read to find out what the treatment was and what to expect.
And what’s changed for you in your life since being diagnosed?
I would say the most important thing that’s changed is me: me and my identity. I’m not the person I was before or during my treatment. I am a different person, and that has taken time to learn and accept and actually value. I am different.
I used to worry about everything – everything! And I realise now that it didn’t help anybody. It actually weakened my immune system. It served no purpose. But I was a massive worrier. I used to comfort eat, and my thing was bread and cheese. And I have sensitivities to wheat and milk. So again, with hindsight, I realised that I weakened my immune system.
So, in a sense, I have changed, and my attitude has changed tremendously.
I am so grateful to be alive and well nine years later. I do voluntary work. I go to Breast Cancer Haven in Fulham – it’s a Breast Cancer Centre – where they offer free complementary therapies. I’ve been doing voluntary work there a couple of times a month for several years now. It’s my way of paying back because I’m grateful that the support was there for me. I’m on a committee/subgroup with Imperial and MacMillan looking at living with and beyond cancer.
I’m very mindful of things now – not just of life, but the practicalities. I have to be careful about lymphoedema risk. I mustn’t carry anything heavy, I mustn’t get scratched or have my blood pressure or blood test taken from the left arm.
So I’ve developed a more mindful approach to my wellbeing, as well as a more aware and grateful approach to life.
What would be your advice to someone who has just been diagnosed with cancer? What would you tell them if you could?
If someone was going through it this minute, I would say to them – from the bottom of my heart, please focus on thinking calmly and slowing down the pace of things. Even if your mind is racing with worries and “What if?” thoughts.
Yes, you need to perhaps control and cope, but if you’re worrying yourself sick because that’s your way of coping, don’t do it. Just focus on one day at a time, or even one minute at a time. And ask for support and help, because those closest to you, they want to help you, and they may not know how to.
And please know that the amount of support for cancer is massive – the organisations, the websites, the books, the people, the help – I mean, it’s massive. It’s overwhelming. So please allow other people to help you even if in the past you would never have considered it.
If I had to say one tip – only one tip – I would say: be kind and patient with yourself. No one has your thoughts, your feelings, your memories, your hopes and your fears. So don’t compare how you are coping with how somebody else has coped, or with somebody else’s cancer story.
This is your cancer experience, and please realise that it’s up to you how you choose to cope with it. And be kind to yourself.
This interview has been condensed and lightly edited for length.