Earlier today I was was thinking that I really need to update my blog, but I really didn't have that much to say - a lot of having cancer is sitting around waiting for someone in a hospital to tell you what some anonymous other people have decided is going to happen to you. And for someone like me, who had been pretty much in charge of every aspect of their life, that is an enormously difficult thing to handle. So instead of updating you with actual facts, you'll have to make do with a more cerebral outpouring.
This week I feel like I have been sat in the fetid juice at the bottom of a crusty wheelie bin.
Yep, that pretty much sums it up.
After the horrifically handled gynae appointment ten days ago, where my second cancer diagnosis was confirmed (see episode 20), I'm still no further forward in knowing anything more about my stage or grade of cancer, whether or not it has spread beyond my cervix, what that means if it has, what my treatment plan might look like or, frankly, whether I'll see next Christmas. I honestly don't know.
I went along for my CT scan as instructed, (it was fine, I didn't get stuck in the big donut machine, I managed to hold my breath and contain the combined drug side effects of flatulence & diarrhoea for the required period without sharting, big win) but the radiographers were tight lipped and unreadable.
Waiting and waiting
It's now been 7 days since then and no one from the gynae team has been in touch to let me know what's happening. Not even a phone call to see how I'm doing and give me a rough idea when I might hear. Unless you've been there you can't imagine the mental burden of not knowing a cancer diagnosis - of being left in limbo, week after week, waiting for the next test result, the next treatment plan, the next decision to be made about you, by people you have never met. It's the absolute worst mental burden to carry.
Once you are diagnosed and you have a treatment plan, your life starts again. It's a damned horrible life, but you can engage with it, understand it, plan for it and move forward with it. Before that, you're left in the most awful limbo. It's like being convicted of a murder and having to wait weeks to hear if you're been given the death penalty. Only you did nothing wrong.
Of course I know that the the medics aren't sitting there waiting for me to walk in, with empty diaries and time on their hands. I am a huge supporter of the NHS, but there is something not quite right about the way that cancer patients are treated. Throughout all of my cancer experience to date, there has been this feeling that my cancer is what is being treated, not me. My cancer is owned and managed by the medical teams, and I am just the poor unfortunate vessel who is carrying it. (I have asked if I can be present at any meetings which involve me, but apparently that's not possible. I'm very unhappy with that, but I don't have the means or the wherewithal to fight that right now). I have to bring my cancer to appointments, to treatments, so that they can see what it's doing and investigate it. I am instructed on how to lie, where to sit, when to breathe, so that my cancer can be investigated, measure, probed, treated.
Hello, I'm here!
And when those appointments are over, I am sent away, so a team of people around a table can have secret discussions about my cancer without me being there. The information is held back from me, diluted, spoon fed, restricted. I am only told what they decide to tell. Sometimes, too many times, I only find out information from being CC'ed into a letter from my consultant to my GP. CC'ed. I'm not even the person they're writing to. I have honestly never felt more marginalised, more excluded and more powerless.
I am left at home, on tenterhooks, terrified of every phone call and every letter, not knowing when, or if, more bad news will arrive. Or good news even. Any news in fact. And it is telling on me.
No News Is Not Good Enough
This week I have been waiting, desperate to hear the results of the CT scan, and the decision of the multi-disciplinary team meeting, who would have reviewed my results and decided on a treatment plan. I have been told they meet on Wednesdays. On Thursday afternoon I looked at my phone to see that, despite sitting glued to it, I had a missed call, and a voicemail message form a private number, which is always the hospital. This was it! At once my heart dropped to the pit of my stomach, I broke out in a cold sweat and had to run to the bathroom to non-metaphorically crap myself. It took a solid 5 minutes of long slow breathing techniques to be able to get to a point were I felt ready to listen to the answerphone message. In the