250. There may be troubles ahead…la la la

BE BRAVE. READ THIS! This is going to be a pretty miserable post so here's my monthly bouquet, expanded because of a broken rose and floppy antirrhinum, and an excellent Customer Service response : 

After

Remember how I originally called this blog "It's only a disease"? Forget that. It's now a way of life. It eats into your thoughts till you forget you ever had days where you didn't have to think about bloody cancer. 

I've noticed my stoicism sneaking away and those scary thoughts so successfully packed away in a little box in my head sneaking out, worming their way, uninvited and unwelcome, into my thoughts.

I think the trigger has been this business over Trodelvy. At first, my response was almost academic. I found for the first time in well over a year, that I felt the urge to write so I settled for a piece of flash fiction, imagining how someone might feel about NICE and Gilead and the whole sorry mess. I posted it in the Feedback Forum of the writers' Facebook Group and got a very positive response - I hadn't lost my knack of writing after all. But I could tell that every single response (and there were lots) was coloured by a personal response to knowing I was in ths position. They assumed, even though I stated it wasn't, that it was autobiographical. This is more or less what I wrote:

Thoughts On Feeling Expendable (or simple Maths)

Have you heard of Stage 4? Maybe you decided you don’t want to go there because you know it’s bad. But maybe sometimes you may wonder how many stages there are.

I can tell you. Four.

Well done me, I’ve reached Stage 4. I accept my imaginary certificate, rolled like an ancient manuscript bearing testament to all those who’ve gone before me, tied in a bright pink ribbon. I’d prefer something tasteful like teal but pink it is because pink represents breast cancer in that well-intentioned month when women with bouncing boobs run marathons and relish the sisterhood, buy garish pink bras and pjs with looped pink ribbons scattered like poppies at Passchendaele.

Have you heard of Triple Negative? Maybe you don’t want your thoughts to head that way either. What you don’t know, you can’t fear. TN means your cancer isn’t driven by screwed up hormones That sounds promising, but no: TN is aggressive, has fewer treatment options, is resistant to chemo – though how anything can resist those lethal drugs is a puzzle. Certainly, my tendons couldn’t resist last time. I can’t even open a lid.

That means I can’t open Pandora’s Box and grab at Hope. I’d drop her.

Maybe it doesn’t matter - there isn’t much use for Hope if you add these two together: Stage 4 (“end of the road, mate”) plus TN (evil little buggers darting like Bellatrix on her broomstick, cackling “Can’t catch me”) equals… ? Who knows? I certainly don’t. I file it away along with other things that don’t bear thinking about.

Hope then arrives with Trodelvy, rich with promise. Whispers are on the grapevine at first but we with TN have a strong grapevine. Soon, fanfares abound! “My bone mets have vanished”, the lesions in my brain can’t be seen”. Wow. I’m not ready for it yet but I keep close track because I know Stage 4 plus TN plus Trodelvy equals feeling shit plus Hope within my grasp. Worth going bald.

I flex my finger joints and reach for The Box.

Then NICE decrees no, it’s too expensive (that’s true). Big Pharma has given but, once they’ve got what they wanted, they can take away. It says shareholders in Gilead are waiting with bated breath. Is their breath more worthy than mine? By the time this is resolved, I may have no breath. But the NHS hasn’t a bottomless purse. Something must give.

So I give them back my hope.

Stage 4 + TN = Too Expensive. Hope retreats to Pandora’s Box, eyes sparkling with unshed tears, her shoulders as drooped as mine.

I remain, bereft, Hope-less.

Then I read the NICE document, planning to write an individual response. It was really hard reading. I, and every other woman with Triple Negative bc, was reduced to a cold, hard statistic. It acknowledges the success of Trodelvy in extending not only life but quality of life (not sure how they measure that - you can get washed and dressed?). Then it lapses into incomprehensible data and language I doubt actually exists and ends with the conclusion that Gilead hasn't calculated its costs as they would like and, when they have applied their preferred methods of calculation, it's just not a good use of NHS money. In other words, women with Stage 4 TNBC are expendable.

Since reading that document, I've begun to think about my proposed treatment plan. Cape, then an IV treatment, then this new drug Trodelvy. OR Cape, then straight to Trodelvy, assuming my primary treatment can be counted as second-line treatment. It niggled. Instead of fiddling on the computer, watching drama series, reading and more reading, I was staring into space and the things I'd written as a piece of non-autobiographical fiction became more real to me. I'd written my true feelings without even acknowledging, maybe not even knowing they were my own feelings.

So now I'm in a bit of a quandary. Do I try to persuade Dr U to move me to trodelvy before I'm ready for it, just to get in before the NICE guillotine drops? The risk is that there's no going back. I will have moved myself along the Stage 4 conveyor belt a bit too quickly. Once trodelvy stops working, there's not much left. It's a gamble. Can I risk delaying things in the hope that NICE recants (is that the right word?) or should I pre-empt their decision?

Can a life-extending decision be called a quandary? More like a tsunami of emotions I really would prefer not to have to face. I have a feeling it will soon be out of my control. How very depressing :( 

Meantime, all I can do is persuade people to sign Breast Cancer Now’s open letter to NICE and Gilead, as well as NHS England (and presumably NHS Wales - it’s been accepted by NHS Scotland). It’s been really heartwarming to see friends on Facebook forwarding the link to their own friends :)