Sophie's story

“I honestly think I am so blessed with the network I have around me, I often wonder how different things would be if I didn’t have these people around me and I believe things would be much bleaker without them.”

 

My name is Sophie. I live in Barrow, near Bury St Edmunds, Suffolk with my husband (we got married in September 2025) and two daughters, Skye, aged 13 and Sydney aged 10, our cat, Disney and puppy, Raffi. I work part-time as a child support worker for our local Women’s Aid and I am also completing a post graduate degree in Play Therapy. 

I have quite a lot of family history of breast cancer and I’d been to the breast clinic a couple of times in previous years - once with a lump which turned out to be nothing and once with blood and discharge coming from my nipple which I was told was also nothing to worry about. When I found a lump in 2023, I’d initially put it down to hormones as I’d been trying contraceptive pills so that I could access a medication for my skin called isotretinoin as it required you to be on contraception. I didn’t get on with the pill so decided to try a copper coil instead. At the time I was working in a job that was causing a lot of toxic stress and caused me to question myself which made advocating for myself harder. 

Once I left that job it still took a while to have the confidence to get the lump checked out, but after noticing it feeling bigger whilst on a family holiday, I plucked up the courage to go to the doctors but really minimised it as I was sure I was wasting their time. I remember coming out of there feeling happy that the dr didn’t make me feel bad about myself, paranoid or that I was wasting their time and got me a referral to a breast clinic. I attended the appointment by myself as I really felt it was going to be nothing again. 

I had sensed a change in atmosphere from staff in the breast clinic when having the ultrasound and biopsy but dismissed it as myself overthinking or something that wasn’t really there. I returned to get my biopsy results by myself as, again, I was convinced I would be apologising for wasting their time. The lovely consultant asked if I had anyone with me and I thought “why would I have anyone with me?” I didn’t believe him when he told me I had cancer and a nurse took me into another room to check that I’d heard what he’d said. I explained that I did but I didn't believe it. 

That night I just continued on as normal, making a late birthday meal for my future mother in law. I had an MRI a few days later and I was told that there were “extensive changes” and I needed a CT scan. It was the run up to Christmas and the CT could not be done until the new year which caused me a lot of stress and worry as I started to process all of this. I didn’t want to tell my children until I had the full picture. The CT was then delayed due to CT machines breaking down over Christmas and no available engineers to fix them. The report was then delayed which delayed my oncology appointment which was very distressing. I’d had back pain for quite some time which I’d put down to the awful working environment I’d been in but now was questioning it all. I think deep down, I knew but was trying to remain positive. 

My oncologist was lovely and broke the news to me as gently as she could but it felt like death was imminent and I started to panic, telling my partner to make sure the girls would be looked after by him and his family (he’s not their biological dad but they would need him and his family whom they are close to). 

When I got the initial diagnosis of cancer, I felt like everything stopped. Like a sort of out of body experience, that I was watching this happen to someone else. Between then and getting the CT results, I felt all the feelings of denial, grief, fear - as well as glimmers of hope and positivity and my usual coping mechanism of dark, sometimes inappropriate humour got me through. Then when I was told it was stage four, I just fell apart. I was terrified for my children and partner. Once I was told of the plan to start chemo and phesgo, I felt as though I had a little more control. I’d done a lot of reading and research and already knew some information about HER2+ cancer and treatment options. 

I’d really not understood anything about cancer at all. All my previous “knowledge” had been from poor media representation. It was only after being diagnosed and doing my own research that I started to learn what secondary breast cancer was.

My children have been incredibly strong. Telling them was the scariest thing I’ve ever done but I did loads of research about language to use, questions they might ask, ways in which they might respond and what that might mean. I got them involved in shaving my head (which they got way too much delight out of) and sought out support for them. There isn’t much for children around here apart from hospice support but after having a conversation with the hospice that was more designed for when they need to prepare for endings which I was not at yet. So, I decided to set up a support group for children who have a loved one affected by cancer. Through this they have met other children in similar situations and become close with some of those children. 

I had to defer a year on my post-graduate course and my new job at women’s aid has been nothing short of incredible. They provided me with emotional support/counselling and have been brilliant when I’m too unwell to work. Chemo landed me in hospital after nearly every round and we had to stop it early as my body couldn’t cope. I did however, have a great response and my 7+ cm breast tumour was no longer visible on scans and all areas in my bones became “sclerotic.”  

I have a lot of guilt about not being well enough to work a lot of the time as I love to work and want to do the job to the best of my ability. This has proved harder as in October 2024 we discovered that I had brain mets and suspected leptomeningeal disease and I’ve had several radiotherapy sessions on my brain as mets have popped up a few times and moved onto Enhurtu which I find very tough. 

I’m very lucky as I have a wonderful partner (now husband) and am close to his family who have been amazing. My family, especially my sister, has been a huge source of strength to myself and my husband and children. She’s helped practically with batch cooking, coming to stay and help with school runs and appointments and brought in food when I’ve been hospitalised as hospital food isn’t the best.

I have some really wonderful friends and I have been so blessed to have met and become good friends with other women in the secondary breast cancer community who have become like family. It’s like we’ve known each other forever and I get such solace being around others who truly know and understand me and my diagnosis, I never have to explain myself (which can be energy draining sometimes).

I think it was my lovely friend Kelly who introduced me to Make 2nds Count. We’d met through a local breast cancer Facebook group but we both didn’t access it much as it was mostly primary cancer patients and we didn’t feel we could relate to them in the same way. However, we both happened to comment on a post about where people were based and realised we were in the same village. We got to talking and found out we were both secondary and decided to meet up. 

She is one of my closest and dearest friends now and we have formed more deep connections with other secondary ladies, many of whom we met through the Make 2nds Count Suffolk Tea & Chat which Kelly became the Ambassador for. These women are like a lifeline to me, we share knowledge and empower each other in ways no-one else can. I am going to the Summit in March which I am looking forward to and hope to get on a Retreat at some point too. I have also accessed the Clinical Trials Service who have been really helpful in helping my understanding of trials and how they work. At the moment I don’t meet eligibility for anything due to the suspected LMD but it’s good to know I can access this service.

I honestly think I am so blessed with the network I have around me, I often wonder how different things would be if I didn’t have these people around me and I believe things would be much bleaker without them. I have many ambitions and am continuing to pursue them, with more vigour now as I want to get as much done whilst I still can. I want my children to see me being positive and living life as best we can. The best way I can continue to hold and support my family is if I too am held and supported and that is something that cancer has given me in truck loads. I’ve never felt so loved.