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