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While going through treatment for stage three breast cancer, Bal experienced hair loss, fatigue and ongoing brain fog. Thanks to support and research groups, she’s now feeling more empowered.
I was diagnosed with stage three breast cancer in August 2015 following a routine medical check-up. My whole world collapsed that day.
The surgeon explained that the cancer was aggressive, so they had to go in pretty quickly. Another three weeks later, the pathology report showed that there was lymph node involvement, so I had to go in for more surgery.
A few weeks after that, I began eight months of chemotherapy. Then I had 15 sessions of radiotherapy to make sure that they’d caught anything that was still hiding away.
Chemotherapy floored me. When I lost my hair, I felt like it had taken my identity. It didn’t fall out after the first session, so I thought I was in the clear. But, after the second session, it came out in clumps. I just sat and cried in the bath.
I also experienced swollen hands and feet, as well as severe fatigue. I couldn’t even walk to the bathroom by myself. Before, I was a very fit and energetic person. My haemoglobins dropped so much that I needed two blood transfusions.
I found that very difficult. It was as if I couldn’t see the light at the end of the tunnel. It was such a dark place.
Now, I’m on 10 years of medication. I was initially on Tamoxifen, but I kept bleeding even though I shouldn’t have had a period. It transpired that I had another tumour in my stomach that was causing it, so I had to go and get that removed. Further tests after that showed I had gone into menopause, so I was switched from Tamoxifen to Letrozole.
Even now, six years on, I still get flashbacks. My first chemotherapy was on Diwali, and so now I’m reminded of it every year.
However, as hard as it was, it was doable. My family, friends and work colleagues were all there supporting me. They reminded me not to lose help.
When I went for my first appointment, I was handed a binder of leaflets by the breast care nurse. I didn’t take much notice at the time because I had so much else going on. In hindsight, perhaps I should’ve, because it had so much information in it. I came across it again after my second chemo and found plenty of resources for support.
I also got help from an oncology nurse through BUPA. I called them up, they sent me a form, and before I knew it I was getting a phone call every other Monday.
My medical team were amazing, but the oncology nurse answered questions and said things I wish my team had told me. One of the helpful tips she gave me was to eat frozen pineapple when I had a horrible taste in my mouth after chemo.
Sometimes, we didn’t even talk about breast cancer, which was so refreshing.
I love my friends and family, but it was so lovely to be able to talk to someone non-judgmental.
Later on, I came across the BRiC (building resilience in breast cancer) studies on Facebook, which are led by Professor Naznin Derakshan’s PhD students at Birkbeck University. I initially got involved because it offered me support with what they call ‘chemo brain’.
For my particular study, I had to answer questionnaires and do simple memory tasks. As part of the research, my brain activity was measured while I did this. I actually did quite well! Then, they give you some exercises to go away and do before coming back and doing the task again. Training helps to improve cognitive behavioural memory function.
The study leaders do everything they can to make you feel comfortable. There’s obviously some commitment involved, but you’re not tied into it; if you find it challenging, you can leave at any time.
It definitely helped me. My mind became sharper, and I felt I was more focused. It gave me some of my independence back, which I felt I lost during treatment when so many decisions were being made for me. That had been a source of anger for me, but now I feel more in control. I feel more positive.
Overall, I found it empowering. It was rewarding to see how my brain could improve and how I am still able to see things I thought I couldn’t. At times it was tiring, but no pain no gain!
BRiC has ongoing support groups focusing on the psychological effects of breast cancer treatment which are hosted on social media.
What they’re doing is so important because I don’t think there is enough support for the long-term side effects of treatment and the impact it has on cognitive functions. They gave so many helpful hints and tips to manage my symptoms and move beyond treatment and diagnosis.
We also work to help one another. On different days we have different sessions, and all of them focus on making everyone feel supported. On Sundays, we have a discussion called ‘panning for gold’, in which we talk about a variety of topics that have helped us collectively as a group. These are then summarised by admin staff and published in our blog, Panning for Gold, as BRiC's Collective Voice.
We do local lunch meetups, too. That way, you get to make friends and meet new people.
Taking part in research is so interesting. A little challenging, but not hard. It just makes you use your brain.
Breast cancer can leave us with such vulnerability, and these studies apply neuroscientific research to improve quality of life and practise resilience.
BRiC are always looking for new people to join the studies and, for anyone who does join, I think it’s always worth remembering that the results can go a long way to help others affected by breast cancer. You’ll be making a huge difference – not just for yourself, but for others like you.
You can find out about research studies like these and many others, as well as opportunities to use your voice to shape our work in other areas by joining our Breast Cancer Voices community. Our monthly bulletin shares all the latest research and involvement opportunities, as well as voices from across our community who are united by this common goal.