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).

Here we go again (Poem 15)

Here we go again

I have paused.
I feel calm for a moment.
The train is taking me,
I am not driving it.
Momentum is someone else’s

En route to do one final test,
Timely hoop jumping will surely bring eligibility?
The adrenalin and cortisol are slowing for a rest,
They are exhausting friends of mine who fuel my agility.

Looking out across the fields, pondering the probability,
Only days before the open label I will see and know,
Recalling the last manic journey to only get placebo,
Some feel deceived;
I felt relieved,
A reason for disease progression,
A known price for future science to learn the lesson.

Whilst mostly strong, I’m aware of my growing fragility,
The cancer has had time to take hold.
I’m tired, aching and a little uncomfortable; affecting my ability,
The cumulative chemo effects, I’m told.

Once again I feel like I’m in a race,
Obstacles to go around, this time for the last space,
When I reach the finish line, it will once again begin,
New hospital, new journey, new side effects within.

I want to be hopeful, but can’t escape the reality of Triple Negative morbidity
Is giving over my body and life for a bigger cause the ultimate act of humility?

2nd October 2019

Honour and Accept (Poem 13)

Aching from deep within. My outer shell maimed,
Cancer popping up here and there, treatment effects becoming evident inside,
Emotional and physiological damage emerging as short term side effects subside,
Honouring my body’s journey rather than the future cancer has claimed.


Internal chemical warfare, breast amputation and nuclear burning,
Uncovering bad news and medical options is a skill I’m learning,
Despite the collateral damage, my body’s response is worth respecting,
But in order to move forward my mind needs to be accepting.

17th August 2019

Glorious Times

365 days ago today I’d been in hospital for a three night emergency stint with febrile neutropenia (low neutrophils, which are the white blood cells that fight infection and high temp), but managed to persuade my oncologist to let me go to Ladies’ Day at Glorious Goodwood.

I’m not quite sure how I persuaded him, my family were a bit sceptical, the nurses were dead set against it, but he saw the person not the disease and its risks. He understood that the mental attitude and determination of a patient was a key part in getting through the cancer treatment. He didn’t want to thwart that. I loved him for that. So off I went with a large copy of my file, a thermometer, blood pressure machine, my wig and my hat. And an equally ‘up for it’ sister.

It was so liberating. I’d done three cycles of FEC chemo and I had another three cycles of Docetaxel (Taxotere) to go. It gave me the energy and verve to get through the remaining nine weeks. Boy did I need it.

This year I planned a repeat – of the racing not the emergency or the chemo.  

As you know I was in the purple chemo chair late last night, but I managed to put my determined hat on, one foot in front of the other and catch the train to the coast for the sunset. A far cry from cytotoxic IV drugs. Today I was back on the racecourse again enjoying the beautiful south downs, lunch, bubbles (shh don’t tell the new oncologist) and afternoon tea. All in the company of one of my wonderful siblings. 

We didn’t have much luck with the racing – in fact I think it is the first time I haven’t had any winners or places – but my previous scans are showing that I’m coming up neck and neck with my disease, so I’ll take that racing form instead. 

Some people think I’m crazy cramming stuff around treatment, others a ‘legend’. I’m not sure either are right. I simply believe that in order to get through very difficult, uncertain physically and emotionally draining times you need to have something to look forward to. Little things and bigger things.

I seek experiences and events that shift your head from dreading another round of chemo to working out how to carry a case and a hat box to hospital and then the coast on a commuter train! It could be seen as displacement activity, but I’d far rather be chatting to fellow patients about horse racing and the beach than the damaging effects of chemo or prognosis.  I like to choose my own narrative and walk my own path.

As I have said before, the last 14 months have seen me face into some of the scariest fears and actual experiences.  The thought of leaving my children, possibly before they finish primary school, the thought of my parents having to attend my funeral. Triple Negative is an aggressive breast cancer with no targeted treatments (yet), so making the most of everyday and planning milestones of genuine quality time with the special people in my life is an essential part of surviving the gruelling and seemingly never ending journey of cancer treatment. 

I look back at the last year or so with fond, special, treasured memories. These give colour and brightness to the dark days and the uncertain grey ones. We all need a few glorious, splendid days and today was one of them. Full of striking beauty and colour.

Whatever you are facing in life, pockets of good simple times should be scheduled into the short and long term plan.  

‘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.

Welcome to My Blog

Ever since being diagnosed with triple negative breast cancer my friends and family have said I should write a blog or a journal. Trouble is I didn’t feel like writing. Updating everyone, answering and writing texts and WhatsApps was writing enough. Especially on the first lots of chemo that made my eyes go blurry and meant I had to wear dark glasses (even inside). Turns out one of the chemotherapy drugs I had in my first 18 weeks of treatment (Cyclophosphamide) is derived from mustard gas, so I guess that’s why.

I’m back on chemo again, but its more manageable this time. Throughout this experience I’ve been scribbling down odd thoughts in notebooks, scraps of paper and WhatsApps. The wonderful and growing number of people who are supporting me and my family are keen to hear how I am doing, so with some encouragement and an experimental attitude I thought I’d give this blogging lark a go.

I hope it makes you stop for a minute and embrace your life right now. I’d love you to have real conversations with the people who matter about the stuff that matters to them and you. Maybe you’ll look at the wonder of the natural world or be compelled to do what you’ve always wanted to do.

Maybe it won’t be for you, that’s fine too. If you don’t enjoy reading a piece move on to another or come back another day, don’t endure it. If you do get something from it I’d love your feedback. Feel free to follow and share the the blog and/or my twitter and instagram pages.

Click on the links for more information about why ‘The Cancer Gap”? or how I started writing poetry or my poems. Alternatively, just scroll down to the beginning of the blog or look in the menu on the top left of the screen. Have a nosey around, you’ll work it out.

Follow me here.

July 2019