"Everyone agreed that I needed help, but nobody felt qualified to do anything."
Rosie found a lump in her breast towards the end of her second pregnancy. Her subsequent incurable cancer diagnosis seriously impacted both her birth and post-natal experiences. Today she is doing everything she can to enjoy and appreciate every moment with her beautiful children.
This is her story...
I fell pregnant in 2023, following IVF. Nine months later, just weeks before I was due to give birth, I found a large lump in my breast. I told my midwife, who suggested I see my GP as soon as possible. The GP said it was probably nothing, but referred me to have it checked at the hospital. Unfortunately, the GP was wrong.
The hospital staff were immediately concerned that the lump was cancerous and sent me for a biopsy that same day. Three weeks later, at almost 39 weeks pregnant, their concerns were confirmed. The lump was cancerous. Due to the size of the tumour, the staff asked if I would like to be induced immediately. I asked for a night at home, to try and process what was happening, before going back the next day to give birth.
I had an Obstetrics Consultant already attached to my care, following issues in my first pregnancy. Thankfully, they contacted the labour ward for me before I went in for my induction, and fully briefed them on my situation. The maternity ward staff were amazing. The midwife who checked me in gave me a huge hug and they set me up in a private room, with hot meal vouchers and access to nearby parking. They went above and beyond to make me comfortable and to support my husband who was also struggling with the news. They even set up a bed and some snacks in a side room for him, so he could stay with me the whole time. This was really important for my stress levels; knowing they were looking out for him meant I could focus on myself.
Labour was long but the delivery was quick. I really didn’t want to be taken to a bay on the maternity ward afterwards; I knew the other parents would want to talk to me and ask questions and, what could I say? It felt impossible.
I was also worried that lots of doctors would come round to see me, because my case was so unusual. The maternity team continued to listen and did everything they could to help me feel safe. They put me in a side room with my daughter and we stayed there for two days while she was treated for jaundice.
During this time, I requested medication to dry up my breastmilk. My oncologist had told me breastfeeding was impossible, but they were reluctant to give me the medication to do so. I knew from my first pregnancy that it would be very painful to wait for it to dry up naturally, and this felt like too much on top of everything else I was dealing with. Once again my amazing midwives stepped in and advocated for me, and the oncologist changed their mind.
After going home with my new daughter, I had many more scans and tests. The results were rushed through and confirmed that my breast cancer was stage 4, triple positive and had spread to my liver.
After that, all external help seemed to stop. Everyone agreed that I needed help, but nobody felt qualified to do anything.
I can’t remember the first three months of my daughter’s life, the struggle of coming to terms with my diagnosis has given me a kind of trauma-based amnesia. I know there were a lot of really dark thoughts and I that I struggled to bond with my baby. I couldn’t help but think that it would have been better if she didn’t bond with me because I wasn’t always going to be here. I told the community midwives how I was feeling and they referred me to the Post-Natal Depression team. While they agreed I was likely depressed, the PND team didn’t think there was anything they could do because it was related to my cancer. Home Start couldn’t help because my issues weren’t parenting related and my local cancer team was focused on palliative care.
Eventually I found Mummy’s Star and some online communities where I could speak to people who had been through similar things, especially those who had metastatic cancer. There is also an in-person group hosted by Breast Cancer Now at our local Maggies Centre.
I find it really helpful when they have experts come in to give us practical advice and information that I can use while living with cancer. It’s a lot more useful to me than the yoga classes or retreats, which aren’t easily accessible when you have young kids!
I’ve been on various medications since my diagnosis. The lump in my breast has reduced in size significantly. Even thought I know it’s there, I can’t feel it, which reassures me that there’s no way I could have spotted the cancer sooner; not without blood tests or a mammogram which I had no reason to ask for. It can be frustrating and feels a bit like being attacked when a lot of campaigns focus on breast checks. It’s as if I’m being judged for not spotting the signs sooner.
But I know that my cancer is just bad luck and there’s nothing I can do to change the past.
That past was horrendous at times but thankfully the present is getting better. Now, I enjoy and appreciate every moment with my children. Each milestone is a cause for celebration and gratitude. My tumour markers are currently low and my little girl just had her first birthday. I’m going to enjoy every moment, even after I start back at work soon.
The part that’s really unbearable is the future. It’s overwhelming and I know I won’t be there for all of it, and there’s nothing I can do. It feels like all control has been taken away. So, I focus on the present and do whatever I can to take some control back.
I’ve written my children birthday cards all the way up to their 90th birthdays! Most people don’t have cards from their parents all the way through their lifetime, so that feels special. Every year I’m here to celebrate the birthday with them, I burn the card I’ve written in advance and buy a new one. I write all the amazing things we’ve done together that year in the card and keep it for them. I’ve also written cards for other milestones, like passing driving tests. I like being able to put in thoughts and driving tips. It means I can have an input in their life, even if I’m not there.
I also write in a diary, once a month, filling a page for each child with memories from that month. And we fill memory boxes with souvenirs from our excursions. I always make sure they have the name of the place on them so that they can look back at all the places we went together.
It’s taken time and practice to keep my focus on the present, rather than the future, but doing so has brought me more happiness and given me a sense of calm and control.
Rosie x
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