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 :) 

249. And it gets worse…

Yesterday, after I’d indignantly posted about Evusheld, I shrugged it off. I have to adapt to a covid-world like everyone else, just be a bit more cautious. Then the chatter started. A bit here, a bit there and then an appeal from the Breast Cancer Now charity to sign its letter to NICE and all the stakeholders in Trodelvy.

You may recall that Trodelvy is a very new drug specifically designed to treat triple negative breast cancer, which is very hard to treat and for which there aren’t many treatments. I excitedly told my oncologist about it (he knew it by another completely unpronounceable name, so we were at cross-putrposes for a bit) but it transpired that the manufacturer, Gilead, was making it available free of charge for the treatment of third line patients, in return for data. I’m only first line. But there it was, the current Holy Grail, the drug that could significantly extend my life. I could wait.

Recently Dr U brought it up in a consultation. He more or less said he now has several patients on it and it is living up to its claims to work effectively where traditional chemo has failed. Then he said something like he feared that, by the time I needed it, the money might have run out. I assumed he meant this year’s Trust budget, maybe next year’s and thought I’d just go private.

Now, NICE has made an interim announcement (that in itself isn’t usual) that, although Trodelvy does improve outcomes for people with triple negative breast cancer, it is unable to recommend its use by the NHS, based solely on price. Of course, I was fuming. Been there before - my SSRI that has no side effects was removed for the list by NICE, which argued that they could find no grounds to justify spending on a slightly more expensive SSRI when there were plenty of existing ones already doing the job. What they overlooked was that this SSRI seemed to have no side effects, like the brain zapping, edginess etc that you might get (and I did) on fluoxetine or any of the others - and I’d tried them all. It was better-tolerated, with no constant reminder that you’re taking it, no flashes inside the brain, So I got the prescription privately for three years, till NICE reversed its decision. Yay, celebrations, but no - it was post-dated for another year. Four years on, I tried to get it. It’s licensed by NICE. It’s available in other Trusts but not Leeds. Leeds left it as red-flagged, which meant it could only be prescribed in hospitals by a psychiatrist. So now I have to have a bi-monthly psychiatric assessment which takes the form of half an hour listening to my lovely psychiatrist giggle and chatter and then say she will pop my new prescription in the post!

I’ve digressed. Trodelvy. I blamed NICE, ranted and railed internally and then starting digging into it. It’s not NICE (ha bloody ha), NICE has left its door open with a clear invitation for the manufacturer to reduce its price because NICE really believes in its efficacy. What was the price? I haven’t found the UK price but in the USA, it’s over $2000 per vial and it’s two vials in each three week cycle. Add staffing and equipment and you’re looking at maybe $5000 per three weeks!! I know Gilead has a duty to its shareholders but where is the humanity?

There are approximately 8000 women in the UK diagnosed each year with my condition, about 10% of all bc cases. It’s the most aggressive breast cancer and the chances of recurrence or metastasis are high. It’s also one of the hardest to treat, which is why the prognosis is poor. Just under half of those 8,000 will benefit from the drug. My oncologist was pretty sure I would. I feel completely sidelined, like I’m expendable,  just so shareholders get their fair whack. I have signed the BCN open letter to all stakeholders to ensure it’s available to the NHS. 

Actually, Dennis doesn’t know he’s signed this lol

I plan to write to my MP but right now…this is the closest I’ve come to hopelessness. I don’t think about the future usually. I’ve just assumed that, if I avoid all possible pitfalls like covid or another type of infection, we’ll have a few years ahead. Now I’m not so sure…And meantime, straight after an inert shingle jab that doesn’t bring on any shingles symptoms, I have a cold sore up both nostrils and some treatment ointment which I can’t use if I’ve low immunity. What next! PITY PARTY. I promised I wouldn’t indulge.

248. Serious request - Evusheld

Please, if you have ONE minute to spare, follow the link and sign this petition. 10,000 signatures secures at least some attention. If you get a Redirect Notice just click on the first line and you’re almost in Westminster!

https://petition.parliament.uk/petitions/611884?fbclid=IwAR2KF9vhEMRSrygsmLiSmBosSHoSq3epQg_dsA6D5Xj4jsffYVi-ozmDRys

This new drug Evusheld, has been developed by AstraZeneca and is already widely used in the USA and other countries - but not here. The DOH has shown little interest so the NHS can’t buy it. It supplements vaccination for those who are immune-suppressed and, on average, increases resistance to covid by 77%. It’s a no-brainer but not really surprising. 

I’m sure the DOH (or DHSC) has its reasons - chiefly that they threw away a lot of money on grants to their cronies to provide substandard PPE and daren’t ask for their money back, like any sane consumer/purchaser of defective goods would - but there are more than 300,000 people still unable to “learn to live with Covid” and still either holed up at home, frightened to go out or, like me, trying their best to live as normal a life as possible, masked when no one else is (yes, I feel a prat) and always conscious there’s a risk in the air. 

Surely these two doses would be cheaper than keeping vulnerable patients alive in Intensive Care. This is the current risk in Leeds, according to the ZOE research app: 

If you’ve signed it, THANK YOU. 

247. April Fool

Yesterday, I was under the care of Mr Bean for 6 hours.

It started with my second shingles jab on Thursday. The nurse told me it would be easier this time. Why do I always fall for these platitudes? Within 6 hours, I had rigors and a raging temperature. Well, it felt like it. I was getting different temperature readings from the two thermometers (you may recall a faulty thermometer led to neutropoenic sepsis last time round) and it reached 38.4. You have to contact the emergency oncology bleeper at 38C. I decided that a) I knew the cause  b) it was 2 am and c) my emergency night driver had been celebrating her birthday so I didn't want to disturb her, 

I knew the cause, I decided to set the alarm and take my temperature every three hours. It hovered around 37.5. I dutifully did a LFT before going to the hospital and off we drove, confident I didn’t have covid, just the effects of the jab. Unfortunately, the hospital’s thermometer read differently. 38 in one ear, 38.2 in the other. I was whisked off to an icily air-conditioned room (with Dennis for company) while they awaited an empty room up in the emergency ward.

I was under the care of a very experienced nurse (he looked older than me!) and that’s where it all began. Instead of laying out everything he needed in the right order, her emptied them all in a heap on the trolley. He couldn’t find x so off he went to get another. Then he dropped the syringe on the floor. Off he went again. I warned him about my chemo-warped veins but he was confident he’d manage. I have a rather large lump and bruise to prove him wrong. Meantime, in his determination to get the cannula in he shed more of my blood than I’ve ever seen, all through the gauze, dripping off the pillow onto the floor.

That needed to be cleaned up then he started again, using my inner elbow, which I’d asked him to avoid because you can’t move your arm without disturbing the needle and it hurts like hell. He got the needle in but couldn’t find any blood (that’s how f**ked my veins are), Then the needle wobbled and slipped out - onto the floor because he was busy searching for something else. Off he went for another needle/cannula while I applied pressure to halt the blood flow - plenty there, just inaccessible to a cannula.

Eventually he got me cannulated, extracted enough blood for all the tests (two medium test tubes - I can’t spare it. Why couldn’t he catch the drips and squeeze out the gauze!!). He then pumped me full of penicillin and attached the cannula to an 8-hour drip. Fortunately Dennis had gone outside or I think he’d have had to be resuscitated! Off went H for a jug for me to pee into (he brought it several hours later, by which time a staff nurse brought one). Ever tried peeing into a jug balanced on your lowered clothing, with only one free hand?? I was so desperate not to spill it, I used my two hands and caused a backflow of blood into the drip tube. Never seen that before. In the meantime, another nurse fixed the drip H hadn’t fitted properly - half of it was dripping onto the floor! She then proceeded to squeeze my blood back into me!!

Dr U came and sat on the bed to do my consultation. Apart from remonstrating with me for not going in the previous night, he explained that he was being extra cautious because I’d had sepsis before. The plan was to move me to a room in the emergency ward but, thank the lord, none was available. So Dennis and I froze for 6 hours, then we were told the blood results were good, all my vitals scored zero so I was safe to go home, but with a 5-day course of antibiotic, another 45 minutes waiting.

I struggle swallowing tablets so they prescribed the oral suspension. I can only describe it by saying it smells of public conveniences and probably tastes like the disinfectant they use! BUT it’s worked and today I feel better than I have in ages. That may be because Dr U has given me an extra week off chemo to improve my immunity. It feels amazing, like I’ve had this massive reprieve - all of 7 days!

So that’s how I spend April Fools Day. When H fist-bumped Dennis (I truly expected D to refuse) and said he’d see me again, I just prayed not. Lovely bloke, completely inept. Meantime, Dr U has requested my quarterly CT scan and another blessed MRI to see what’s happening with the tumour. I suspect it will show continued progression cos I can feel it on my eyelid. What I fear is that it may be growing in other directions. Heigh ho!.

Does anyone know how to get a reliable thermometer?