AUTHOR * WRITER * PATIENT ADVOCATE

My breast cancer experience: the good, the bad and the ugly (in reverse order) 

 

I was 38 years old when I was diagnosed with breast cancer, a young woman. I’d never smoked, drank occasionally and lightly, ate well and exercised regularly. There was no family history.

 

 The ugliest for me was reactions from others, if you don’t know what to say please, say “I don’t know what to say”. I appreciate that all our brains are trying to find reasons, mine was too and it was 

vulnerable and fragile. The desperate searching of others “it must be because you work so hard”, really didn’t help. But worse, as I disintegrated under my failure to satisfy my God (yes, that’s where my brain was at, I felt I had failed somehow at being a human), worse was the reaction to my emotional pain and suffering of, “oh come on now, you must be positive”! Being positive is not about 

persistent jollity in the face of a shitstorm; it’s about facing up to our experience, how we feel and taking action. What that action is depends on such a cosmos of possibilities, I cannot tell you what is right. Twenty years on I cannot tell you what was right for me, who knows? Would I still be here without chemotherapy? Possibly. Would I still be here without surgery? I think we can say no. I think luck is the greater part. I did have fantastic support from my closest family and friends, so I can share 

the advice I have given and been given: 

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-Being sad/angry/frightened is normal, you will not make things worse, you cannot die by 

thinking you will die, your thoughts are not that powerful: 

-You are still you 

-You will get through this

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Oh, but you will be ravaged by the treatment, to different degrees, depending on the treatment path you must tread. The hardest thing is to make treatment decisions at your most vulnerable. If someone had sat me down when I was starting chemo and said your gut will never be the same again. If someone had explained that cutting off the hormones that fed my cancer, would also stop them keeping my vagina springy and moist. Would I have made the same decisions? I remember a point where the hormonal treatments were having a dramatic impact on my mood; and I requested an alternative. The doctor I saw then said petulantly “well it’s up to you, do you want to get rid of the side-effects or do you want to live?”, my response was “I’d have to think about that” (and I decided to get rid of the side-effects). What I can say is, as hard as it is, no-one can make decisions about what’s important to you, other than you. Always ask – what are the risks and benefits of this treatment? What’s the likelihood of those risks and benefits for me? Do not be pressured, good 

medics – and they are out there, in numbers – will appreciate your participation.

What I would also say is that your reaction and response are not always predictable. I temporarily lost my hair during chemotherapy. When I was imagining this, it seemed the worse thing in the world. After my treatment had finished, I worked as a volunteer for ten years with a cancer charity and I can tell you, everyone I ever spoke to felt the same way. The times I have heard “Oh, how can I be so vain, it’s only hair but ….?”. Take heart that you are not alone. Also, for me at least, it was nowhere near as bad as I had imagined. My hair does pretty much have its own post code, so being without it for a while meant that people noticed me, which was nice. 

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By far the most significant of the good things, once cancer had shattered my life rules – particularly that being good didn’t offer protection; it left me with an empty rule book. That left me open to possibilities. There is no “if I ... then …” it was just, go with the flow, see what happens. So, at 44, a confirmed singleton, when I met a guy with that twinkle in his eyes and ability to make me laugh at myself, we started a relationship. A few years later, we married and here we are ten years married. 

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Anything is possible. Has life been smooth sailing since my cancer diagnosis, has it heck! I have faced loss and trauma. But I have faced those things with a renewed belief in my own capability and the ability to allow myself to feel. I am still me and I love who I am, honest, trusting, compassionate and forgiving. I also discovered that I am a creative, I really believed I wasn’t, but I now do photography, painting, and writing! In the end, it’s all about love.