I'm going to start this post off, by first of all acknowledging every single person on this rollercoaster, and want to state that waiting for the elusive surgery date is really really bloody hard. Being in limbo, between appointments, without much communication is the single most frustrating part I am currently finding in the period before surgery, and I'm usually quite a rational person.
I can only go on my own experience, but I've gone from weeks of nothing to a sudden influx of meetings and scans to being promised surgery within months, to have that promise withdrawn just a month later, and then another sudden influx of meetings but this time without the knowledge of when I'll be having surgery,
My current status is: waiting, patiently, sometimes irritated but patiently waiting.
The good old circle of control is a really useful tool to reflect on when you find yourself ruminating over all the things that aren't working in your favour. In my case, I spent way too much time feeling frustrated & deflated that my consultant had been slightly too enthusiastic in my meeting with him and given me hope that my surgery would happen in September.
There are so many external factors that impact surgery, in all honesty and with hindsight (isn't hindsight wonderful), I should have expected at least some delay, there were hints in the meeting, but I got swept away by the glimmers of positivity.
It's been a useful experience for me. Some things I have learnt:
Until you get a surgery date take everything with a pinch of salt. I assumed that my sudden influx of scans and appointments was a sure sign I'd be sooner rather than later.
I'm just a number. This has been the single best piece of advice I've had. It sounds brutal, but the reality is, we are just a number within a very complex process. Whilst this is a truly emotional experience for us, within the context of the health system, we're just a number on a list of other numbers, some above us with more complex requirements and some below us with less urgency attached to their surgery, For some bizarre reason, surrendering to this has been hugely helpful for me, It's not personal, I just have to wait.
Enjoy your time before surgery. I am working hard physically and mentally to prepare myself, Take every single minute of the day to put yourself in the best position possible for a recovery that is manageable.
I also want to shout out the amazing #BRCA community on Instagram. What a powerhouse group of women, who have shared their stories warts and all. I think it's really important to go into surgery with ALL the knowledge. Some of it may be uncomfortable, but without understanding the good and the bad how can you properly prepare. I am under no illusion whatsoever that this is going to be easy.
So many of these brilliant women have highlighted the mental aspect, but I want to say to them, that by sharing their vulnerabilities, it has helped someone like me so much and for that I am truly thankful. It has also encouraged me to be as open as possible about this, so hope these blog posts help in some small way.
Would love to hear any tips you've found that have helped prepare you for surgery.
Much love, A x