"there is plenty of support if you have cancer and if you’re pregnant... it’s very much unchartered territory if you mix the two."
Recovering from breast cancer diagnosed during her second pregnancy hasn't been easy for Kirsten, but she has managed to find support systems despite the rarity of cancer and pregnancy.
This is her story...
You don’t ever expect to get cancer but you really don’t expect it when you’re planning on welcoming a new member to the family. In June 2017, I was 38 years old, 31 weeks pregnant with our second child and eagerly awaiting my maternity leave, while also preparing for our son to start school in September. Hearing the words ‘I’m afraid it is breast cancer’ was a shock, to say the least.
All I could think was: ‘So, what do we do about it?’ I didn’t have chance to worry about myself, because I was more anxious for my son and unborn daughter and how this would affect them. Thankfully, it had been caught early, so they could operate whilst I was pregnant, and it wasn’t an aggressive form that didn’t appear to have spread. The timing meant I wouldn’t need to be induced too early and I was so thankful for that.
I had surgery in July and our beautiful daughter was born in August. Then I started six cycles of chemotherapy in September and twenty fractions of radiotherapy followed the January after. To call it a whirlwind 8 months doesn’t quite cut it. Most of our daughter’s first six months of life and my son’s first year at school were very much a sleepy, foggy, chemo blur.
It was a confusing time, when my focus should have been on my new baby, but actually I was just desperately trying to stay alive.
I feel so lucky to have been surrounded by wonderful family, truly amazing friends, and my son’s incredibly supportive school. My husband has been amazing throughout my diagnosis, treatment and beyond. I also love to see the special relationship that my mum has with my daughter now, after being very involved during those early months, to support me.
While there is plenty of support if you have cancer and plenty of support if you’re pregnant, it’s very much unchartered territory if you mix the two. I only found one place to turn to where they truly understood the conflicting space I was in and that was Mummy’s Star. So much help was available from them and I am still so grateful. Most invaluable of all was, and still is, the online forum. A wonderful group who have been through all number of different experiences and who are always on hand to offer advice. They made the whole thing feel not-quite-so-extraordinary.
At times the Forum was also a difficult place to be. So many women are going through or have been through unimaginable times, experiencing all different cancers at different stages of pregnancy / motherhood. It made me realise how extremely lucky I was: that I caught it so early, that I didn’t need chemo whilst I was pregnant (I didn’t even know that was a thing!), that I was never asked to choose between my baby or fighting the cancer, and that I had one of the most common (and therefore well researched) types of cancer.
I also came across the Breast Cancer Care (now Breast Cancer Now) forum where there was a thread for anyone starting chemo around the same time. That incredible group continues to be one of my biggest supports. We are in touch every day (even when life gets busy with the children, I know they are always there) and we meet up at least twice a year.
They understand the constant second guessing and endless worry, and the need to go grab life.
My active treatment finished at the end of February 2018 and I then started on Tamoxifen. I have been surprised how long it’s taken me to return to “me” after treatment finished and how big an effect the Tamoxifen had on me. The build-up of the perimenopause symptoms that it created challenged me deeply and stopped me from feeling fully myself. That’s why I chose to stop taking it after five years, despite being offered it for ten. Within days of stopping the tablets, it felt like an elastic band that had been wrapped increasingly tightly around me had been cut away. I’ve been a much more patient and tolerant mum since, and less like the ‘trying to stay alive mum’ I had been. The post-chemo brain mush also took a good 22 months to fully clear, which I found so frustrating, as I couldn’t trust my own brain for so long.
I initially had four follow up appointments each year, because my chemo and radiotherapy were covered by my husband’s health insurance. Two were for blood tests with my oncologist for ‘systemic monitoring’ which included tumour markers and hormone changes whilst on the Tamoxifen. The other two were with my consultant, one of which was my annual mammogram. Over time, the appointments have reduced and now (2024) I have just one annual blood test and one annual mammogram. I have always found the follow up appointments reassuring, even though I still worry in-between times. I am very grateful for the extra checks and to know that I can get in touch if I ever have any worries. Without this extra cover, I would be on three-yearly mammograms now, which just doesn’t seem quite enough.
June 2024 will be the 7-year anniversary of my diagnosis and I can’t say that it has ever left me. The date still sticks in my head. All-in-all, I am now absolutely fine and mostly back to me. I still get waves of fatigue randomly and I am constantly second guessing everything, but I have a brilliant oncologist and GP, and having this medical history means I am always taken seriously. I feel very lucky for that.
The hardest thing is all the thoughts, fears and worries that you try to put out of your mind as much as possible, but that never really go away.
There is a constant fear something is lurking, ready to pounce at any moment, to take me away from my children. I am always half expecting to be blindsided again.
I’ve also spent a lot of time and energy second-guessing what actually caused the cancer in the first place. The resulting feeling of helplessness - trying to find something to blame just ends up feeling overwhelming – and questioning everything that I put in or on my body is exhausting, but it’s hard to avoid that sense of endless risk.
The best advice I was given, that I would give to any other mum in this awful situation, is: ‘You need something bigger than the cancer to focus on.’ Your Star baby is a perfect focus, or your family and loved ones, and it can help you keep going when things feel overwhelming.
Now, I do all I can to celebrate their milestones. My son will start secondary school in September and I am so excited to see where it takes him. I love to watch my children growing older (not many parents seem to say that) and I try to balance our finances with making as many memories as I can with them. All in all, I am just loving being alive and watching them grow.
Kirsten x
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