Seriously?

I started writing this on Tuesday morning. A lot can change in a matter of days. Emotional roller coaster feels like a hackneyed and over-used metaphor, one that doesn’t feel adequate to describe the last 48hrs. 

I want to be true to what I felt and wrote a day or so ago, so the tense might jump around in this piece – for any grammar pedants out there, you’ve had your warning. 

In the run up to being on the trial I am looking for signs of hope or good luck. Originally they were sending my eligibility and radomisation request on my birthday. That seemed like a good omen. The very fact that I got the place offered to me after it had previously been allocated, that seemed pretty serendipitous too.

I’d lost the diamond out of my 40th Birthday ring that signifies 4 decades and 4 family members. It was my birthday, the stone was missing, this didn’t seem like a great sign. However, in the dark of the theatre I found the rock lying on the floor. I had found it again, almost instantly. Surely I’d get through elligibility?

I have jumped through every hoop I have been asked to, I’ve anticipated hoops and removed them before we got to them. I’ve organised my own scans with the help of proactive and kind teams in other hospitals.  I have collected my own pathology reports from hospitals in person, scanned them and sent them to other hospitals. I have checked on the nurses screen that ECGs have actually been whizzed on internal systems.  I have been ‘on it’ in the most full on way possible – even for me.

Yet we are still waiting…
I was told I’d have the go ahead and details of which arm I’m on, on Friday…
Monday at the latest…
Yet it’s Tuesday and no news.  

I am sitting in the clinic waiting to see an oncologist for what is supposed to be Day 0 of a new clinical trial. I’m due to start tomorrow, yet I do not know if I am eligible for this trial (I’ve checked myself, but I don’t get to decide) or which arm I will get.   I feel physically sick with anxiety, hope, excitement and panic. An uneasy compound of conflicting emotions. I am emotionally and physically exhausted. 

I feel like I’m at the finish line, but there is no one here. No cheer.  No accolade. I am wondering if anyone knows I’ve sprinted this race?

So I am literally waiting to hear if I get immunotherapy. I’m in a windowless side area of a hospital lobby. Amidst the juxtaposition of hospital buzz and sedentary cancer patients (and their loved ones), standing and sitting in lines. All of us facing the screen waiting for our name, our fate and our next step.  Slowly people are called in.

My husband and I aren’t talking. Not because we are in a grump with each other, but because there is nothing to say or do until we know. Everything else is suspended in time. As a couple with young children you long for one to one time. This is not the vintage of time or location we need right now.

We are biding our time, until it’s time.

Just over an hour after our apt we are called. Not bad. 

From my research as someone at the second line treatment phase (second attempt at a drug or drug combo to control the growth and spread of a secondary cancer and/or local reoccurrence), this trial is the only way I can get immunotherapy in Europe (and possibly The World) at the moment. That is  without robbing a bank, changing the genetic make up of my tumour or bribing a lab technician in a large pharma company. 

I’ve been at this stage before for my first line treatment. I got the placebo.

This time It’s an open label trial so I will know at the start of the trial.  This is because it’s a much earlier phase trial and I’m guessing because the control is a tablet and the arm open is an intravenous Atezolizumab and a tablet of an AKT inhibitor called Ipaterstrib. Still struggling with the pronunciation of the latter. Atezolizumab is now a word my 10 year old can pronounce. I don’t believe in dumbing things down for kids.  After all, ‘immunotherapy’ isn’t much easier to say.  

As yet another aside, when I first talked about immunotherapy with the kids, at the beginning of the year, they were fascinated to hear how that worked.  My son, who fancies himself as a future zoologist said, “Mummy, but how did they find out that Emu’s could help people with cancer?”. Oh how I laughed.

I like the idea of emunotherapy. Frankly I’d try anything right now. 

BING! I’m called in to meet another new oncologist, who works with the one I saw just under three weeks ago. To my relief, I have been accepted to the trial. Phew! It literally was the last place as it has closed globally for review. We’d secured it. However they still didn’t have the go ahead to randomise me (drug lottery). So I was on, but we still didn’t know which drugs I would get. 

Adrenalin was switching on and off like a strobe light. I wasn’t sure I could take much more. I’d already experienced a kind of primeval emotional outpouring on Sunday night. A kind of release that I hadn’t really experienced since being diagnosed in May ‘18.  I was a bit freaked out by my reaction, but it was probably proportional and I felt a lot calmer the next day!

After  another blood test and another 2hr wait in a hospital chair – I was free to go. To go and wait somewhere else. My husband had taken the day off work, but we still didn’t know if I would get immunotherapy, I was provisionally booked for the next day.  

Right now I could do nothing more but go home and wait for the drug sponsor based in a different time zone to get into work and process our randomisation request. 

The way this trial works is you either get the control, or one of 8 other drug combinations.  Capecitabine (a tablet form chemo) is the control, then the other 8 combos are like a cocktail menu with Atezolizumab as the gin or vodka base and the other drugs they combine with it are mixers or other little spirits to pep up the Atezo.  I guess the drug companies aim is to see if they can give Atezo without chemo for it to be effective. What they are seeing right now is that the Atezo works in some PDL-1 positive patients when combined with a taxane based chemo called Abraxane. FDA have approved it in the USA for first line. I wouldn’t be eligible though. NiCE have yet to approve beyond expanded early access programme, due to cost and narrowness of the indications (conditions/disease areas it can be applied to).

OK, this post is starting to feel as drawn out as the real thing was and I’m not sure I can go over it again, so I’ll cut to the chase.  The oncologist called me twice that same Tuesday evening to advise of changes to the trial structure, ratios etc.  We didn’t want to wait any longer for treatment to begin again, so even at a 50/50 chance of Atezolizumab we pushed the button on the lotto machine (it is literally a computer programme).  

I got the chemo.  

8th October 2019 (finished on 10th October when I could bear to write about it again).

Unequivocal disease progression. Placebo.

I can’t really dress that up in a fancy headline. Before this week ends I’m going to attempt to capture 48hrs in the life of a mTNBC patient fighting the system for treatment and their life. I wasn’t going to write this post at all. Firstly I’m in it up to my neck and it’s hard to get enough perspective or space to write coherently. Secondly the situation is shifting all the time. However I think if I don’t try and capture some of these recent events I won’t even believe it happened and I’m living it. 

If you read this to the end I hope it helps you understand why sometimes people with cancer and serious disease just smile and say ‘I’m good thanks’. 

Tuesday PM

On Tuesday this week the facts came at me:

– ‘We now have unequivocal evidence that your disease has progressed and is functionally active’.  
– ‘You are no longer on the trial’
– ‘We’ve applied to unblind you and you were on the placebo’
– ‘We don’t have any immediate options at this hospital’
– ‘We will refer you to another hospital who might have something for you, but we don’t know what’

Bang. Bang. Bang. Bang. Bang. The news kept coming. 

Despite knowing in my heart that my disease had progressed, hearing it finally confirmed was brutal. Not a surprise, but a shock none the less. I felt like I was being ejected off my plastic hospital seat into the ether. Abandoned by the system and the lack of treatment for TNBC again. Left to come up with my own plan (or at least that’s what it felt like). 

But this is what I do best. It’s my calling. I make stuff happen. I go around problems. I try to look ahead as much as I can, to scenario plan my next move. I often have a strategy. I breathed, I had one here too. 

However, I was upset. Not angry, but mourning my future. Grieving the reality. Trying to accept the injustice and bad luck of not getting the drug I researched so heavily back in March. The trial that so many people helped me get on within 3 weeks of my secondary diagnosis. The hope ebbed away. I felt hollowed out. Not done, but desperate to catch a break in this relentless, once hopeful, now seemingly futile journey. 

Saying goodbye

I looked around at the wonderful NHS hospital that has held me close for 6 months. I smiled at yet another person I knew by name, knew about her children, where she trained.  I must know about 30 people by first name in this hospital. It felt intimidating back in March when I knew no-one and now I felt sad to leave the building and the people who has enveloped me for this part of the fight. I was sad. I was letting go in a way that I haven’t normally done when the bad news comes. The work on myself and even this blog meant I was feeling it deeply, not disassociating. This is good and bad. 

I walked to the train with my husband, we were in a bit of a trance. Then a switch flicked.  I literally got back on the train metaphorically and physically. I had to make a decision to detach again. To pretend this was work. A mammoth project to direct. A big problem to solve, move forward and take control of. People to mobilise and mindsets to shift. Starting with mine. I could not let this happen to me.  I had to get back in the driving seat. Fast. 

What did I know?
Who did I Know?
How long would it take my current hospital to send a referral letter?
What were my options?
Who else might have a perspective on those options?

I was manic, but straight away I remembered a kind and determined woman I had been exchanging posts with on an invaluable forum I belong to. She was on a clinical trial at the hospital they were talking about referring me to.  If it was anything like the hospital I was leaving she would have a direct line number into the trials team. I private messaged her. She astounded me with her speed and quality of response. She is a kindred sprit. She sent a screen grab of names, direct lines, mobiles and emails within a minute or so. I was getting intermittent WiFi and reception. She messaged that she thought the trial might be closed. It sounded ambiguous though – ‘thought’.  My mind was racing.  While I was in a tunnel, on her own initiative, she called the trials team.  Out the tunnel – another message. ‘There’s one place left, you’ll have to move fast’. I felt sick, but excited.

There has got to be more relaxing ways to die.

WhatsApp to my family

Whilst on the train, I used my mobile, genius-scan and dropbox to scan all the recent scans and letters I had. I copied the bold ‘diagnosis title’ at the top of the paper. I frantically tapped my recent medical history, NHS number etc. into my phone. The file I carry around and the data in my head was coming into its own. Not to mention the digital revolution. Once off the train I finished the scanning in the waiting room (If that isn’t a metaphor for how I feel I don’t know what is).

Send. Phew!

No one could say I’d missed an opportunity, by not acting fast enough. This is the exact opposite of an appropriate epitaph for me! 

I spoke to the fab forum woman (you know who you are) on the phone. It was the first time I’d ever heard her voice aurally. We have never spoken or met face to face, yet I knew her and this week she did for me what I try to do for others. She got me back into action mode fast. Thank you.

I followed up my email to the hospital with a friendly call.  They hadn’t seen my email yet, they’d just come out of a busy clinic, they hadn’t seen an email from my hospital either.  I briefly explained the situation, mindful that she probably looks after many trials and patients.  She was effable and kind, but sadly updated me: ‘That place has now gone’. ‘The trial is closed’. ‘Sorry’. 

My heart fell inside again. I slumped on the worktop. I knew it was the only 2nd line trial (second lot of treatment for a secondary cancer) in Europe that I had a chance of being eligible for. The only way to get Atezolizumab.  I’d used up my 1st line life on the previous trial and got the placebo. I felt sick and exhausted.  I was still on the phone though, chatting about trial recruitment and safety reviews. The work part of me conversed with the hospital trial manager I’d never met to understand the process and the system. I asked her to keep my details and if possible start a wait list for a place in the unlikely event that someone pulled out or wasn’t eligible. A total long shot, but I want my husband and children to know I did everything in my power to be here for them for as long as possible. 

I went for a swim. 20 lengths. A change of tempo and location. The water on my skin. I felt alive. I had reasons to be alive (to coin Matt Haig). I just had to find a way to keep alive. 

Wednesday PM

Late afternoon the next day, I had a pre-scheduled appointment with my original surgeon at my local hospital. I had planned to discuss the surgery or radiotherapy options.  Except these were no longer options. Off the table. 

It was still worth seeing him though because I wanted to understand more about the lymph glands and the small lump I suspected was a reoccurrence.  He and the breast care nurse were first class and continued the action mode.  I ended up having a mammogram. I had to laugh when the radiographer said ‘Are we just doing the left side?’. She had looked up at my naked torso before I had a chance to answer, so my response was redundant.

The purpose of the mammogram was to rule out any spread of disease in the left breast. I’ve been banging on about having both boobs off since the day I was diagnosed so it was mildly disappointing that the mammogram was clear. Whilst my breast was mangled in the machine, I could see a persistent ‘no caller ID’ call coming up on my apple watch. I’m all for answering on the go, but this seemed extreme, even comical. It might be after school club as I’d just received a text from another parent, it could be my mum…or it could be a hospital. I wriggled free and tried to answer it. Missed it. I got dressed and waited to see the surgeon again. The phone rang again just before I was called back in for a core biopsy (undressing (3rd time) local anaesthetic, shot of adrenalin (like I needed it), scalpel, core punched, tweezers, stitches, dressing) on the right side (I kid you not).

It was 5.12pm on the Wednesday. A two minute call. There was a place on the trial. If I could read the c20 pages of consent form tonight, and be at the hospital for 9.15am the next day, it was mine. I was ecstatic. 18 months ago I could not have imagined using that adjective to describe entering my body into a lottery to get either my third lot of chemotherapy or two experimental drugs (one of which is Atezolizumab). If this was fiction it would seem far fetched, but this is my life and subject to eligibility scans next week, I’m going to be able to get some treatment. It still hasn’t really sunk in.

‘Welcome back to the arena! The fight ain’t over! Buckle up we’re off!’

My youngest sister’s message to the family WhatsApp

I was awake at 5am. I got up at 6am and travelled to the clinic. I met the new oncologist, signed the tome of consent paperwork and as of lunchtime we might have a treatment plan. Just a few more scans, blood tests, ECG’s and biopsies and we should be done. So that’s next week covered.

Telling the kids

We updated the kids this morning as they have antennae for a change of mood. 

‘Mummy’s cancer lumps aren’t shrinking anymore and it turns out that I wasn’t getting the proper medicine, but the good news is we found another doctor and he’s going to try and give me a different medicine’. 

That’s what you call the distilled version. 

‘Why didn’t they give you the proper one the first time?’ As an adult it’s pretty hard to accept the way clinical trials work and when you say it in lay terms to a child it seems absurd. Especially when you are talking about how long their mummy will live.  What’s worse for children is if I get the right drug it will probably make me tired and ill before it even starts to make a dent in a tumour. 

Cancer and its treatment are impossible to explain to children, but we have to try, we can’t shut them out.  Anyway, that’s a post for another time, I’m off to watch Fleabag at the National Theatre Live. 

Friday 20th September 2019

‘Last’ chemo

So today is my ‘last’ chemo and I haven’t even written about chemo properly. I think that might have to wait. It’s just a bit too grim for today.

Suffice to say that not all chemo is the same and everyone’s reaction is very different. That’s why you have an oncologist who specialises in this dark art of managing the tight rope between efficacy and toxicity (think this is a polite way of saying killing the cancer or killer your organs/you). We haven’t killed all the cancer yet, but on the plus side we haven’t killed me either, so all good. Told you it was all about perspective. 

I put inverted commas around ‘last’ because when you have metastatic cancer (cancer that has spread from its original site) your know that your last chemo is unlikely to be your last. In fact it’s often the only treatment option to keep your disease controlled, so chemo kind of becomes your friend. Developing chemo resistance or running out of chemo options is actually a bad thing as it means your disease is out manoeuvring the possible treatment. You then move into palliative options that make your life more comfortable while the disease does its thing. Let’s not go there yet.

Back to today. Today is my last chemo for a while. That feels good. I have 18 weeks of four types of chemo last summer into early Autumn (which depressingly didn’t really work).  This Spring/Summer I had another 18 weeks. Still six cycles of the cytotoxic stuff, but this time I had two types (Gemcitabine and Carboplatin or GemCarbo to its friends) two weeks out of every three. I’m on a clinical trial so I might be getting immunotherapy too. Alternatively I might be getting water (placebo), which is frustrating, but a reality.  Even though GemCarbo is an older chemo combo I knew it was getting results with triple negative breast cancer based on my obsessive google reading. It was therefore worth the travel to a research hospital and the gamble of getting Atezolizmubab, which is also getting great results (more on that later). After today I will still have cycles of immunotherapy every three weeks. 

I feel very mixed about today because so far we think this chemo is working. It’s shrinking or should I say shrunk my secondary tumour. I worry that stopping it will mean it pops up somewhere else or starts growing again. Or it reoccurs in my chest wall, skin or sternum from the original site.

I think of metastatic cancer as mould spores. You know how they lurk unseen on bread, barely visible as tiny white specks, then BOOM, you’ve got patches of mould all over the side of the loaf. Leave it lurking at the bottom of the bread bin and before you know it, it has turned into an unrecognisable bag of dust. 

I don’t want that to happen to me. I think we’ll leave the brown bread and toast analogies right there. 

So we are on the hunt for those mould spores. Actually you know what, that’s rubbish you can’t even see them on the most sophisticated scan (A PET), so we can’t really hunt for them.  I prefer to accept that they are definitely there, we just need to be ready and waiting like ninjas for when they pop up. This is a more proactive and realistic way to view the approach to metastatic cancer. 

Between the blood tests and chemo, I’m having a CT Scan today too. I have them every 8 weeks to check for disease progression, or large patches of mould!  I have so many scans I even have a scan outfit (winter and summer).  It’s an outfit I have perfected that manages to be metal free and not look like pjs, whilst still allowing access to my port-a-cath. It allows you to complete you scan without the need to get dressed and undressed.  A time saving decision, plus it also saves the faff of trying to fit and re-fit my prosthesis or being exposed with one boob in a corridor.   

I won’t get the scan results for two weeks, but last time the treatment was working. Maybe I’m getting the immunotherapy or maybe the GemCarbo has worked.  

This constant cycle of treatment and scans can get a bit wearing.  I tend to approach it by making treatment options based on the worst case scenario and life decisions on the best case scenario.  I find this helps you make the best of each day whilst hoping that you are creating more days.

I was here this morning for bloods at 9am, but I won’t get chemo until much later as they have to do a lot of tests to make sure my body can handle the dose, then they have to order the drugs from pharmacy.  It is now gone 3pm and still no sign of a seat in a purple chair.  This means steroids after 4pm and no chance of sleep tonight.  Another thing to accept and roll with.

They are calling me in. Let’s do this one more time.

Magpie Scientist (Poem 10)

Picking up promising words that glisten in social media,
Forum posts, global medical press articles and Google scholar,
Emerging treatment targets buried deep in academia,
I read early clinical trials celebrating 9 months extra, with horror.

I feel relatively well; how can this be?
I prepare for the worst, but hope to defy statistics.
I refuse to believe this will happen to me?
When is the time to be positive or pessimistic?

Meticulously searching for eligible, global, clinical trials
Does my tumour have infiltrating lymphocytes and is this best?
Wondering if I’m allergic to Chinese hamsters in vials,
Ambiguity over different antibodies for PDL-1 status test.

Targeted treatment options limited,
I’m on the very edge of science, searching for hope. 
Cancer cells lurking and all I want is to get rid.
Researching into the night; no time to mope.

Finally feeling I have narrowed my search,
I’m no scientist, but I’m driven to discover insight,
Back and forth between science and my life I lurch,
Being my own advocate, following the path I think is right.

Acquainted with this secondary tumour for less than a week,
Meeting the Principal Investigator, whose language I only partially speak,
Eligible through the reams of small print, but waiting for scans,
Not spread too far, big enough to measure is the result we seek.
Awaiting the results, continuing to read, making back-up plans.

Three weeks from secondary diagnosis to placebo/immunotherapy in hand,
Obsessive nature; no sleep; tenacious yet polite; everyone moving at speed,
Navigating changing hospitals; biopsied bits of tumour flown to distant land,
Late night forums; wonderful women who’s advice I heed. 

Laser focus sacrificed presence now, for longer with my children,
Shutting down the outside. To go after what’s inside.
Driven to search for other ways,
And now I may have lots more days.

Started March 2019 finished July 2019

One of the many pages of post it notes and late night scribbles