News & stories Personal stories Binnie It started in October. I thought it was nothing really, perhaps Covid. I had a bit of a cough. Covid tests came back negative. A few weeks later I found that I wasn’t sleeping very well but I put this down to the menopause, which I was going through at the time. My stomach became bloated and it felt like I had indigestion. My trousers felt too tight, so I went and bought new ones. I spoke with my sister about my symptoms and she suggested I go to the doctor. She thought my symptoms were probably down to the menopause too, and suggested I go on HRT (hormone replacement therapy). I kept telling her that I would go see the doctor, but I’ve never been one for wanting to make a fuss. I’ve sat there before in doctors’ waiting rooms, looking at people who seem much more unwell and thought, “Why have I come? I’m wasting the doctor’s time. Someone could probably use this appointment more than me.” I did ring the doctor in the end and explained that I was mainly concerned about my lack of sleep, but did mention that I was in pain and felt bloated. She was really good and asked me to go see her in person right away. She examined me and then sent me for some blood tests. At this point I mentioned to her that I was also worried about a lump in my breast and some soreness in that area. She had a feel and decided to put me on the two-week referral list. A few days later the GP called me with the results of the blood tests. She told me my CA125 was really high, around 4,000. Normal range is 0-35. She explained that CA125 could be a cancer marker. A week later I received a letter calling me for a scan. I went in and was referred up to the maternity ward, which was quite strange, and I found myself wishing that I was there to have a baby, not for cancer tests. I had an internal ultrasound and was asked to wait outside. At this point my husband had popped out to the shops, so when I was called to see the doctor I went in on my own. I can’t remember the conversation fully, but it felt very strange. The doctor was there with a cancer nurse and they asked me questions about my family history, how many children I had, what my job was… Then the nurse said, “Ok, so we’re going to be treating you for ovarian cancer”. I said, “Is that what I’ve got? Are you telling me I’ve got cancer?”. I don’t remember them clearly saying yes at any point, they just talked about how they were going to treat me. It wasn’t like in the films at all. In the films the doctors always seem to start the conversation with “I’m really sorry to tell you…” On the way home, my husband asked me what they had said. I didn’t want to tell him while he was driving so told him when we got home. You have all sorts of thoughts running through your mind at that point. I do remember asking the nurse whether I was going to die. I just wasn’t expecting that news – I thought they were going to say I was just going through the menopause. I thought, “How am I going to tell my children? How am I going to tell my parents?”. My parents were stuck in India because of the pandemic. I have a very large family. Then I thought about my sister, who I go on lots of trips with, and how I was going to tell her. She’s forever telling me off for working too many hours, not sleeping enough, not eating properly, not doing yoga, not going to the doctors. I thought she’d say “I told you so”. After I few more days I rang the hospital because I was in so much discomfort. They decided to drain fluid from my abdomen, which was causing the pain and bloating. They had to keep me in over Diwali. After they’d drained the fluid I felt a lot better, but still had the cough, which they said could be fluid around my lungs. Many more appointments flew by, I can’t remember them all that clearly. The plan was for me to have three rounds of chemotherapy first. My first session was booked in for Christmas Eve. After three sessions I was to have a full hysterectomy, followed by more chemotherapy. My biggest fear was having to have a stoma, which was a possibility as the cancer may have spread to the bowel. I like to wear a bikini when I go on holiday and was worried about having to live with a stoma bag. I must say the NHS were fantastic. I was so lucky that nothing was delayed. The chemotherapy wasn’t brilliant of course, I had some good days and some bad days, but just got on with it. I tried to stay positive and live in the moment. I think when you’re well you spend a lot of time looking ahead and planning the future, but when you get sick you realise you’ve got to just live in the now. I was diagnosed with a BRCA gene variation, so was told I would be monitored as this meant I was at risk for other cancers. I had my surgery at the end of March and was in hospital for two weeks. I try not to think too much about that time because it was painful and I felt really poorly. I ended up having to have a stoma bag, which I had some issues with at first. I just couldn’t eat at all, so I had to be fed through a tube which wasn’t very pleasant. However I turned a corner in the second week. There was a lady in the bed opposite me who had bowel cancer. We got to know each other and then it became a bit of a game, seeing who was recovering quicker. That cheered me up. We encourage each other a lot, checking out each other’s hospital meals and looking forward to being able to eat certain foods. It was like I’d found a friend who was walking in the same shoes as me. I had three more rounds of chemotherapy after that. It felt worse after such a big operation, more painful. Since my chemotherapy ended I’ve been on bevacizumab, which I have as an infusion every 21 days. One of the reasons I want to share my story is because I feel there’s a stigma in some Asian communities around women’s health. I mean, I think in most cultures it’s expected that women will just get on with things! But especially for the generation above me, it can be very hard for them to be open about being unwell, especially if it’s something gynaecological, or related to your breasts. I remember telling my mum about my stoma bag. She thought it would be fine and that they would remove it. It was quite difficult to explain my surgery to her and get her to understand all the implications. So if sharing my story helps any woman from an Asian community, helps them to open up and be aware of their bodies, then that would be good. I have lots of cousins and aunties, so I now always tell them that they need to go speak to their doctor if they’re not feeling good. When I was told that I had the BRCA gene change, I was given literature to pass on to relatives who might be affected. Within my family we decided that it would be better to give that literature to the younger generation (my cousins) so that they could relay the information to their parents. So I think it’s about finding ways to reach the older generations with health messaging in a way that they understand. Many people of my parents’ generation won’t use medical terms when they talk about someone being ill, so they aren’t used to that language. The support I’ve had from my family through my diagnosis has been fantastic. However having such a large family, one thing I found really helpful is that when I was first diagnosed and having treatment, my daughter made a Whatsapp group to keep the wider family updated. I couldn’t face speaking to everyone individually so that really helped. Overall I’ve tried to stay positive about my diagnosis. Obviously you have bad days, but I think that if you can focus on filling your time with reading or whatever other small activities you enjoy, those dark thoughts don’t tend to take over. I always think, your mind can be your friend or your foe. It’s not easy to overcome the negative thoughts, but what worked for me was thinking “it is what it is, I just have to deal with this now”. I know that a lot of people ask “Why me?”, but I always think, “Why not? It could have been anybody, and it just happens that it’s me”.