IBC: A Personal Story

As a healthy 36 year old, I never really thought about dying. It’s something that happens when you get old, right? Besides, I had a 2 year old that needed her mummy, a job that I loved and a husband that I was going to grow old with… Cancer was not in my plans.

I discovered a breast lump in the bath one evening and it grew scarily quickly to 10cm. I later learned that it wasn’t a typical lump but diffuse within the breast – like candy floss starting to clump together which might have been why I initially missed it. The truth is, I’ll never know. And so from that moment our lives were tipped upside down and given a good old shake around whilst we desperately try to cling onto the sides.

I’ve since realised that every piece of bad news I receive feels like an out-of-body experience: being told I have cancer; that it has two of the most aggressive traits (triple negative, inflammatory breast cancer/IBC); that I will need urgent chemo, I will lose my hair, lose my breast; that I will need radiotherapy; that the cancer has returned after just a couple of months; that I’ll need more surgery; that the cancer has now spread – it’s now in my bones, liver, lymph nodes, skin; that I’m no longer curable and that I have an average life expectancy of 12-18 months from re‑diagnosis and that I will be on chemo until I die.

Deep down, I’m still convinced that this isn’t really happening and that at some point I’ll be told that I’m going to fine, be fixed and a miracle will happen. I cannot conceive of not being around to see my daughter grow up, to experience all the plans my husband and I had. It’s a strange feeling to realise you no longer have long-term plans, that you no longer have a future. These are the anxieties that keep me awake at night and needing downers and sleeping pills. Every single day, my heart breaks for my daughter and husband, for my family and friends, for me. It’s unbearable pain but I’ve had to learn to put it aside, to live my life the best I can – to take one day at a time. 

I’ve made the personal decision to keep my diagnosis off social media which is why my name does not appear here. I want to raise awareness of this disease and its manifestations however I also want to keep as much privacy as I can. My body no longer feels like it is mine – it is under constant analysis (consultations, PET scans, MRIs, bone scans), it has been opened up in surgery, sliced and diced, blasted with radiotherapy and killed off with various types of chemo). I no longer look nor feel like “me” due to trouble with mobility, pain, visible tumours and thinning hair. I need to live my life the best I can and I just don’t think I could handle the extra attention of being “out” on social media. 

In order to cope, I’ve turned to online support and through this found the IBC Network and YBCN (Younger Breast Cancer Network for ladies under 45). I can’t begin to express how much these groups have helped me – in real life as well as online. However, I also have witnessed these amazing ladies go through their own pains and heartbreak until the disease eventually catches up with them. We aren’t fighters – a fight indicates that there is a chance you can win. We’ve just been dealt a really, really bad hand.

IBC is a rare and deadly form of breast cancer that desperately needs more research to help prevent more lives being taken. I know too many young women who have been misdiagnosed as a result and now too many young children without their mummies. 

Cancer has also shown me the best in people – friends and family dropping plans to help when we need it, employers creating a strong pole of support for us to lean on, numerous charities and those who work for them, medical professionals who have essentially kept me going long enough to see my daughter start school and hopefully many more milestones.

As you’ll know from reading this blog, my brave, strong and inspiring friend, Lucy, will be travelling to the South Pole and is raising money for the IBC Network. She is my superwoman and I cannot begin to explain how much this means to me. Lucy is covering the costs of the trip herself so all money goes direct to IBC Network. Please donate what you can to show your support and help prevent other families from going through this.

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