#SaveOurBond - Amy's Story
Content warning: Amy's story contains reference to a cancer diagnosis in and around pregnancy, struggles with physical and mental health and bonding with baby.
I was about 36 weeks pregnant with my second child, Agnes, when I noticed a rather large lump on the side of my left breast. Unlike the size or feel of other lumps I’d had, it was an almond shape. I was fortunate to be in the care of private midwives with both my pregnancies, so was quite acquainted with them and as she was leaving one afternoon, I asked her to have a quick feel of the lump, not thinking too much about it. Her face was an immediate giveaway that this wasn't what she was used to feeling at all and she insisted that we get to my GP asap. With her pressing, I was referred to the Breast Care team at our local hospital.
The initial assessment concluded that they didn't think it was anything to worry about, but they would take a biopsy just to be sure. In hindsight, I think this was to put my mind in a calm place. The biopsy took place, and I remember it being excruciating. It felt like it lasted for too long and I felt wounded afterwards; I wanted to punch the guy doing it. It is horrible when you are nearly full term and you have to bear yourself for such an intrusive procedure. I left quite shaken and then, in the early hours of that morning, I went into labour, two weeks early. Agnes wasn't hanging around in there for any more nonsense. She waited until her brother had gone to preschool and arrived at our home, in the birthing pool, around 10 am. I have photos of us in the pool, me with a dressing on the side of my breast from the biopsy, and her looking absolutely divine.
One dreamy week went by, then we rocked up to the Breast Care Specialist's waiting room. He was surprised to see no baby bump and the news that I had delivered already was clearly a relief.
I was pretty cheery, well in the baby-bubble, but then he said, "You do know why you are here?" and my face dropped as I realised the results were something to worry about.
It's mostly a blur from this point. I got the basics. It was cancer. It was aggressive. An inductal carcinoma, Grade 3. HER 2+ Oestrogen fed. Nodes. They need to take lymph nodes, but I could get Lymphoedema. My 'youth' kept being mentioned; I was freshly 37. Chemo. Herceptin. Radiotherapy. Trips to the mainland. Tamoxifen. No breastfeeding.
My previous birth and maternity leave and been without any complications, which meant I expected the second one to be the same. I was looking forward to my baby in a carrier, semi-permanently attached to me, walking with the dog in the forests and on the beach, and spending time with my best friend and her two children who were both born at the same time as mine. Going to baby toddler groups, cafes, swimming, and building the early foundations of our growing family. The reality of this, my second maternity leave, would be quite the opposite; swallowed up by treatment and recovery.
I underwent extensive treatments including two surgeries, echocardiograms,18 rounds of Herceptin, 4 rounds of chemotherapy, daily anti-sickness drugs, two or three visits to A&E with dehydration from the chemo and other bugs, and 14 rounds of radiotherapy which required a bus, ferry and taxi journey for each trip.
Before my first surgery, we had around a month which was peaceful but shadowed with worry. The surgeon asked me to stop breastfeeding, but I decided to just feed her from my right side and reduce my left breast. Afterwards, I was in a lot of pain and found it difficult to carry or cuddle her and my son. I was told that I must discontinue breastfeeding in prep for the next surgery, as I it made surgery very problematic.
This was the thing that upset me the most, that I couldn't give Agnes what I consider to be the best start to life, as well as all the subsequent parts of me that I couldn't give to being her mother.
I wasn't able to care for Agnes for most of my maternity leave. I had to spend quite a lot of time at the chemo and radiotherapy wards, and a lot of time sleeping or feeling sick and unwell at home. It was uncomfortable to carry, cuddle, lie down with her, even long after maternity leave. Caregiver duties fell on my husband, his mum and my mum.
In the same way that a baby turns and cries when you pass them to a stranger, she would do that with me. It was heartbreaking.
She wanted her Dad and he was there for her, but it made him incredibly sad that I didn't have the same bond as he did or that I had with our firstborn. I spent a lot of time incredibly upset.
I had to hand over all my responsibilities to family members. I was absent emotionally and physically, especially during the treatment and recovery periods. If I didn't have my husband or our mums around, I'm not sure what we would have done. There was no balance. We worked out a new routine, and everyone rallied. We had meals cooked and shopping done for us by friends. Our dog went on holiday to a friend for a few months.
Mummy’s Star provided a Support Worker who patiently listened to me unravel my mental load that had been coiled up so tightly. She had had a similar experience to me and it felt reassuring to know that someone who had been through a similar journey, had survived and got to a point where her children were grown and she was sane, and helping to guide others...what a hero! This kind of experienced council was worth its weight in gold.
When someone can talk to you with genuine understanding and laugh at all the nonsense with you, the value in this is indescribable. She was a strong voice in my ear and for that I am so very grateful.
A lot of the immediate stress for my husband and I was financial. The last thing he wanted to do was go off to work and leave his newborn with someone else whilst I was ill, or with me while I wasn't coping. But being self-employed, no one would be paying him if he took time off to be at home. So the immediate stress was definitely financial. His emotional needs were pushed down as secondary and I think that really affected him more than we anticipated.
Our Support Worker also helped us apply for a financial grant from Mummy’s Star which arrived at the beginning of December. Christmas was approaching and this meant so much to us at this time of year. My trips to the radiotherapy ward on the mainland were also approaching and there would be costs to cover for travel. It didn't seem that there was any financial from help anywhere else. We were shocked that there seemed to be no other financial support for people in my situation and wondered how many other people in similar situations might manage. It definitely felt like Mummy’s Star were the only charity out there that could understand and who would help us.
By Feb/March 2020 I had finished radiotherapy treatment, and finally reached a time when I felt I'd be able to start venturing out. Then the UK went into lockdown due to Covid19. This put a whole new spin on things. I was still receiving Herceptin injections and was considered immunocompromised, so along came more feelings of worry, fear for health/life, and being trapped.
Everyone around me observed me 'coping' extremely well. What they didn't realise is that my whole world was altered in ways you can't imagine.
When you have a baby or children your priority isn't yourself. All you think about is the needs of your children. The realisation that you can't provide, in the immediate and down the line, is completely shattering. Even if the prognosis is positive, with each step of your experience, you have to adapt your hopes and expectations. It feels like you are constantly searching for acceptance. I like to be in control of my actions and choices; to have these snatched from me was derailing. Choices removed seem like such an injustice, and there is absolutely nobody or thing to hold to account.
Socialising disappeared. Relaxation was a thing of the past, it was now just sitting on the edge trying to hold it together. I couldn't fall apart because of my responsibilities to my family and returning to work.
I was extremely grateful to my workplace at the time as they didn't pressure me to rush back. I had a regular welfare call with Occupational Health. They tagged as much SSP and annual leave on to the end of maternity as they could, to extend the time I had off for recovery, but then the country went into lockdown. It was an unusual situation. I remember thinking none of these people have any idea how my world is collapsing from beneath me. And at the same time as being very nervous about going back into the workplace, there was an added element of: was I safe?
And I didn't feel ready to leave my baby. She was very small to be leaving for preschool, but her brother was there, which felt like a positive.
In hindsight, I wish I hadn't had to go back to work. I'd only just started to spend short snippets of time with my daughter.
The cancer was like this invisible barrier between me and my newborn and my son; something that the children didn't understand, but accepted as normal.
My first born was very used to being close to me and I think this affected him in the long term; he now has quite extreme attachment anxiety. The lack of bond between me and my children impacted my mental health more than the cancer diagnosis and treatment.
You cannot get that time back. It’s gone and you won't ever get the chance to nurture that tiny baby in the first months of their life again. Having a choice to defer maternity leave would ease the pain a little; but the experience must be different for families depending on their situation. Some women won't ever have that experience.
In an ideal world, you would be supported by the Government financially from the point of diagnosis until the end of active treatment, plus a window of time for recovery. If there was financial support for partners, no matter your employment status, at least then you could all be home together with your newborn baby.
After recovery, maternity leave could start, or an agreed amount of time for you to enjoy being a mother, without the pain, worry and guilt. That would give you a chance to start being the mum you want to be with your newborn.
The effects of cancer in or around pregnancy don't only cover the maternity experience, but that is the start; the time when you are most vulnerable. If this time can be protected and that experience changed for families in a positive way, it will make such an impact on future generations by giving them the best possible start in life.
Amy x
The Save Our Bond campaign is calling on the UK Government to change the law to allow mums and birthing people, diagnosed with cancer in or around pregnancy, to defer or pause their maternity leave until after treatment. Support the campaign today!
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