The waiting is the hardest part

The writer of today’s blog wishes to remain annonymous but speaks beautifully about her journey so far and the emotions it has evoked.

When I was a teenager, I was convinced I would die at 41 of breast cancer. I planned a life with that in mind—just by being generally vibrant and financially irresponsible, not “morbid” as some of my friends liked to tell me. 

It’s difficult not to be morbid when your mum dies at 41 of something you might also have, though. And, aged 29, I bit the bullet and had a blood test that confirmed I had the same BRCA1 mutation that my mum had carried, and which had caused the cancer that had in turn caused her premature death. 

I’d suspected for a while that this would be the case. I’d made my plan already in case of a positive result: mastectomy with recon as soon as possible, oophorectomy when I near the age of my natural menopause. Sorted. All that financial irresponsibility hasn’t been that great of an idea after all. Once I’ve had these surgeries, my chances of the death I’d imagined drop down to less than ten per cent. Knowledge, in this case, is very much power. 

It’s also the most stressful thing that has ever happened, or I suppose will ever happen, to me. 

When I used to imagine my emotions around a positive result, I think the overarching one was fear. In reality, my mutation feels more like an oil spill. One big splash full of every colour under the sun. I don’t know if these colours are universal but there is pretty much nothing I haven’t freaked out about since September 2021, when I sat on the phone with my genetic counsellor. 

The first was perhaps the most predictable: the resurgence of grief for my mum. At that point it had been 17 years since she’d died, and this triggered the rawest period of reflection on that time of my life since it happened. It was much the same for my family, too, which was difficult. I deal with pretty much everything in my life with a mixture of grit and self-deprecating humour, and I’m not sure that quite landed with everyone at the time. I’m not sure it does now, to be honest. But it’s the only way I’m going to deal with having my boobs scooped out, and at the end of the day they are indeed my boobs. 

The next phase was something I hadn’t predicted. The hardest part of my mum’s death for me was the new relationship my dad entered into afterwards. It’s over now, but this diagnosis brought a lot of anger around that time to the forefront, and I ended up being referred to a domestic abuse charity. Logically I don’t think this makes much sense, but emotionally, it makes all the sense in the world. 

Some counselling and frank conversations with family later, and my next worry surfaced: sexual insecurity. Again, though, this didn’t appear in the form I might have expected. I’ve opted for non-nipple sparing surgery just because I want as much of my boob meat gone as possible, and I’m excited to have a new bit of canvas to showcase tattoos on. I have no qualms that I’ll be even sexier than I am now following my surgery. In any case, if anyone doesn’t agree I’m not interested in their (incorrect) opinion anyway. 

No – the problem here lies not in my sexual future, but my sexual present. I fall somewhere on the asexual spectrum, which for me means I find it extremely difficult to be attracted to anyone. Dating doesn’t make sense to me because I’d have to go out with literally everyone in the entire world to find out whether they’re nice enough to then become physically attractive to me. I can and do find people physically attractive, but it only happens, on average, once every five years (I worked it out). This isn’t usually an issue. I don’t feel as though I’m missing out on anything in life by being single. But as soon as I decided I wanted “one last fling” with natural boobs – a super out-of-character move for me – it became devastating. It’s almost impossible to have a fling when you’re not attracted to anyone, and I ended up seeking counselling specifically for this issue after one of my colleagues found me hiding under a desk at work crying my eyes out about it. This was possibly the trickiest thing I’ve had to get through so far, to be honest. 

But I’ve got through it, with the help of my wonderful employee assistance programme. So, what’s next?  I’ve loved the consultation process. I’ve met with my breast surgeon several times to discuss my mastectomy and reconstruction options and I’m happy with what’s going to happen – he has such a lovely way of making me feel like I’m in capable hands, because while to me BRCA1 is my entire world, to him, my surgery is one of many other similar surgeries. That office has been the only place this whole thing has felt like no big deal, a lot of the time. But consultation is over. I’m on the waiting list. In the meantime, through the PROTECTOR study, I’m also on the waiting list to have my fallopian tubes removed. And I don’t know when either of these surgeries are going to happen. 

I appreciate that this uncertainty is normal. But I have autism, and being bad with uncertainty is one of its USPs. So, while I feel relief at having worked through all the above, the fact that planning ahead is sort of an impossibility at the moment is making me itch. That fear I’d once anticipated is finally here – but it looks a bit different to what I’d imagined. Fear of surgery, of complications, of lowered self-esteem? No – I’m terrified that my favourite band will tour when I’m laid up and full of drains. Compared with everything else I’ve felt on this journey so far, though? I think I’ll take that.