I want to write a long post about this and maybe later I will or maybe this will turn into one. After all it took a bloody long time to get here. Twenty-one months of fighting cancer and 13 months fighting the medical system for the one immunotherapy drug in trial that ‘may’ have some hope for metastatic triple negative breast cancer.
Breast cancer is still one of the leading causes of death in women (despite it being and I quote an acquaintance ‘one of the best cancers to get’!!!) and despite many more people surviving breast cancer, there are still too many lives taken. Just this week another young mum in my support forum was taken too soon. Leaving 3 young children (below 5) and a husband in the wake and destruction of TNBC. A disease with no cure or targeted therapy to control it.
Due to this lack of treatment, finding a cure or even a treatment to control spread could be big bucks for big pharma. Only 15% of breast cancers are triple negative, but it’s still a decent segment for big pharma to make money from. As a result of this there are lots of different clinical trials for triple negative patients. On the surface this is good, but the reality is finding them, working out how to get on them and passing the eligibility criteria are complex tasks even for the most tenacious and energetic terminal cancer patients. Almost an oxymoron in itself. It’s a wonder anyone meets the trial equivalent of an algorithm. All this searching and hoop jumping just to be a lab rat for future triple negative patients and possibly buy yourself a few more months in the process.
The first trial I found was perfect and gave me immunotherapy as a given as it was the combo they were trialing. Partnerships were with old chemos or additional triple negative targeted therapies. Everyone got immunotherapy, Atezolizumab. An attempt to find Atezo’s killer combo (or survivor’s combo). Unfortunately this immunotherapy trial wasn’t available to me as my reoccurrence/secondary cancer had been discovered in less than 12 months after my primary diagnosis. In short my proactive nature which had insisted on the scan that found the tumour was 4 months too early to be eligible.
Other trials I found I wasn’t eligible for because my tumour wasn’t big enough yet! Frustrating doesn’t even cover it. Eventually I found a trial that I was eligible for by 1mm of tumour measurement. This trial involved months of travelling to the research hospital only to get disease progression and find out I was on the placebo.
The second clinical trial was another mission to get on. Loyal followers of this blog will remember that. This trial yielded another 4hr round journey to get the standard or care drug I could have got on my doorstep. A journey worth it for the chance of getting Atezolizumab. A money can’t buy drug. Those of you playing attention know that that time I was rewarded with the control. Atezolizumab missed again. I was the last person to get on this trial globally. There was a part 2 to this drug and if I met certain eligibility criteria the second part could be open to me. It was beginning to sound like the bonus schemes most of the consultancies I’ve worked for offered. Unlike those, stage 2 finally paid out. All the hard work, hoop jumping and waiting had delivered.
Today I am proud and frankly astounded to report that I have Atezolizumab running through my veins. Hopefully playing with it’s wingman chemo Eribulin to finally have some impact on this aggressive and relentless cancer. Let’s hope it buys me some more time and doesn’t make my quality of life too grim with the toxicity.
Who thought I’d be celebrating getting my 8th chemo agent and an off label drug. Funny where life takes you.
Bit like this journey, the post didn’t end up being short either. However, did beat Brexit to a different post.
Yesterday I finally got my CT results from 3 weeks ago. They are stable. But what does that actually mean? I don’t know how to feel about that word. It doesn’t excite or sadden me. It’s neutral. I feel like I’m in a holding circle outside Heathrow, not able to land or fly off.
‘Stable’ definitely doesn’t ooze positivity. A political situation in a far off land that becomes ‘stable’ doesn’t have you rushing to book your next holiday there. Stable pension funds or economies are safer, but not a cause for celebration or a spend up. Riding a bike with stabilisers is an interim phase between falling off and riding properly.
I guess I’d rather not be falling off.
Pretty much every appointment I’ve had in the last 20 months has been bad news or unfolding bad news or seemingly positive news that belied my clinical representation or turned out to be bad news due to a scanning error.
Let’s just say I brace myself for bad news. I prepare for it, I seek to interrogate and understand it. I then accept it and move on to forming or executing the next plan of attack. I’m a problem solver by nature and profession. I’m an action junkie. I don’t know how to be around stable? I’m not organising a party and I’m not researching alternatives or mobilising the NHS. It feels indifferent and passive and I don’t like it!
My RECIST (response evaluation criteria in solid tumours) report shows a 1mm reduction in the size of my target lesion (the largest lymph node in my contralateral axilla). On 12th Sept scan it measured 19mm and on 19th Nov it measures 18mm. It’s going in the right direction, not enough for partial response (PR) to be classified, but not enough for progressive disease (PD) either. But here is the rub. That same 12 Sept scan was originally measured and reported by my previous hospital and the lymph node in question was reported as 16mm.
Same raw data, different reporter.
So based on the original report I have a 2mm growth. In addition the same node was reported twice in the summer as being complete response to treatment (CR) and it measured 0mm! Yet I could still feel it and it felt like it was growing (and it was). See why I don’t trust scans!
Now let’s go back to clinical evidence – or in lay terms – eyes and fingers. The lymph node in question feels smaller than it was when I started this second trial (that’s good right?), but it also feels like it has coalesced with the other enlarged lymph nodes to form a skinnier (technical term) yet longer mass. So what are they actually measuring?
On top of all of this my skin metastasises are growing. I have 3 reasonably significant ones and two tiny ones that I expect no one will acknowledge, but I know they feel exactly how the others did at the start. The biggest skin met has been biopsied and is definitely triple negative breast cancer cells. And yet I had a private ultrasound of my chest wall last week and the monographer said ‘there is nothing there’! I had to stop the sonographer and say I presume you mean on the scan as you can plainly see and feel them on my chest! Of course that’s what she meant, but it made me feel like I was making it up! Even my 7 year old says ‘Mummy is that another cancer lump?’ And ‘that one is getting bigger isn’t it Mummy?’ How do I deal with ‘stable’ in this context? Even my daughter wants to know when I will switch to a treatment that actually works!
She doesn’t get ‘stable’ either.
A loved one in intensive care who is reported as stable doesn’t fill you with joy. You take a breath, you might be relieved, but you aren’t out of the woods. I guess a terminal cancer patient is never ‘out of the woods’, so maybe ‘stable’ is as good as it gets. I’m restless, I’m impatient, I get it.
In my case ‘stable’ is pretty hopeful. Dying’s on hold for a bit longer. Christmas can be ‘stable’ not disrupted by new treatment or adverse reactions.
It’s still too passive for me. But I think that’s my nature. I perhaps need to turn off my ‘high alert’ button and give my para sympathetic system a rest over Christmas. Changing treatment over the festive period is never ideal (I did that last Christmas), so perhaps I need to take that very deep breath and try and ignore my sixth sense for another cycle of this wretched chemo.
There is no doubt that mentally it’s tougher to physically swallow chemotherapy. Not least when you were hoping to avoid it and try immunotherapy.
The last 3 weeks have been a blur. I’m hoping I’m through the worst. This post has been written a bit intermittently.
Most of you know by now that I was on the placebo in the last clinical trial. After a bit of a scramble, I was lucky enough to get on another clinical trial. The last place globally, with a chance of getting Atezolizumab.
Unfortunately I got the control, so as you know I’m not on immunotherapy I’m on chemo again. I’m so over chemo.
Passage produced the first weekend of the new chemo, Capecitabine:
I am now dictating this in the dark with my sunglasses on because I’ve been in bed since Saturday night, it’s now Monday morning and I have been pretty sick since Sat. This is my seventh type of chemo drug and my third block of chemo cycles. Naïvely I thought that this oral chemo would be convenient and fit around my life.
Oh how I was wrong.
I feel more unwell than when on any of the other chemos. When you sit and think about it, or lie in my case, the chemo pills are going down my throat and into my stomach and through my intestines, which is a lot of surface area for a cytotoxic drug to be in contact with. I can only assume that this is why I feel so ill.
It may also be the dosage which they may alter, but for now I am still trying to swallow 10 bitter chemo pills a day. I can just about handle swallowing them, but once they have melted or partially melted in my stomach, bringing them back up again is one of the most unpleasant things I have had to endure.
I cannot really put into words the feeling of that acidic liquid burning my throat on the way out.
I really thought the first lot of chemo I had back in June 2018 was the worst (which is why I have yet to write about it properly), but this seems to have really knocked me for six.
As truly revolting as the vomiting is, the headache which feels like my head is permanently in a vice and the photo sensitivity are debilitating. I’ve been lying in a dark room since Saturday night. Unable to read, watch TV or talk too much.
I am unsure whether my body‘s reaction to this is just a chemical one or if I am psychologically rejecting the control; the injustice and all-round bad luck in missing out on Atezolizumab again.
Dictated notes from the first lot of Capecitabine.
I am determined to blaze through this drug in the hope that it is doing to the cancer what it is doing to me. The week before last I ended up back in the hospital in London because the vomiting wouldn’t stop. After some monitoring and a lot of hanging around, I was sent home with additional anti-sickness drugs (or ‘Auntie Soonest’ as my dictation wrote the first time. I quite like that, she sounds like just the kind of person I need right now!).
After the first lot of sickness I was given 48 hour respite from the chemo to then begin again.
Once I started up the chemo tablets again it didn’t seem quite as bad; then three days later it started. I had the headache, I was dizzy I couldn’t really talk I couldn’t read or watch TV. Once again I am dictating this into my phone in the dark.
Chemo is a bit like childbirth. No one really tells you what is is actually like and everyone’s experience is different anyway. Universally it’s pretty horrendous going through it, but the potential reward is worth it. Moreover the end result seems to wipe your memory of the enormity of the process of getting there. However, unlike the birth of both my children I was not rewarded at the end of the last two gruelling journeys. That has certainly been my experience thus far. All that pain and horror for nothing.
Actually not nothing: disease progression.
I am left wondering if this particular chemo is so bad because unlike the others it’s really doing the job. That is all I can grip onto as I endeavour to endure another day.
Cancer is truly an evil bastard. Its treatment is something else. It is impossible to fathom the paradox of feeling relatively well when you are off treatment, with tumours growing everywhere, versus being on treatment and being debilitated.
Mummy I preferred it when you just had cancer, you were ok then, I think the chemotherapy is making you ill, can we go back to you just having cancer?
As my daughter said, right back at the beginning of the first lot of chemo. She was six then.
That’s how I feel right now. This is why people stop treatment. At the moment I am wobbling my way along a tightrope between tolerable drug toxicity and drug efficacy.
My daughter is seven now. She has an amazing ability to cut through the crap and describe the heart of the situation. For example, when we finished chemotherapy the first time I went on to have three operations, each one hoping to get a clear margin around the cancer. Each one failing in its mission. As I got the last pathology report back in early December 2018, I was truly devastated to discover that there were still cancer cells in the margins. Teeny tiny bits of cancer in my blood and lymph vessels. I knew these where tributaries of two crucial fluid systems that move stuff around my body. This did not sound like a good place for cancer cells to hang out, however ‘microscopic’ they were. My surgeon told me I would probably have to have adjuvant chemo (after surgery) as well as the 18 weeks of neo adjuvant I had endured before surgery.
This was the first moment I lost it in front of a consultant. My head crashed down on the other side of his enormous oak desk.
“F**k!“ I screamed.
When we tried to explain this to the children, my daughter’s reaction was:
So mummy instead of being nearly at the end, we are actually right back at the beginning.
She nailed it then too.
It seems that killing cancer has to happen in a way that makes it feel like it’s killing you first. Chemotherapy is what you call a systemic treatment. It is undiscriminating, attacking my whole body because the harsh reality is nobody knows where those microscopic cancer cells are hiding now.
So long story short, the same thing happened when I restarted the Cape (as it is known to its friends(!!)).This time I decided not to go to A&E. I took my pulse, temp and BP at home and they were all OK (that’s the first 2-3hrs of being in A&E covered). I didn’t have an infection. I was massively dehydrated and exhausted from vomiting. We phoned the hospital hotline again and said we were stopping the drugs in order to get some fluids back into me. We did and within a few hours I was improving. Once well enough (ish!) to travel to hospital, the oncologist came to the same conclusion as me. It was the tablets and nothing more sinister.
Whilst my reaction was a bit adverse it wasn’t unheard of.
I checked the dosing levels for my body surface area (my husband worked that calculation out) and we felt I was on a pretty high dose. Tipping into the criteria for 10 tablets by a fraction. Chemo sounds like a very precise treatment, but the truth is the dosing levels are quite a blunt tool. It’s unbelievably a bit of trial and error. Thing is, it’s me that is being experimented on. I have had to have my dose reduced on every other chemo drug due to toxicity and adverse reactions, so I guess this is where we are headed.
So after some good peer to peer discussion the oncologist and I agreed that I would give it another go at 80% of the original dose. So only 8 tablets a day now. I’d also have a break until the beginning of the next new cycle to let my body recover. This has given me a week or so to get back to myself, which aside from the cumulative cancer side effects I am now. Hence I thought I’d better get you lovely lot up to speed.
I want to give this chemo a good go because as I have said before the list of possible options for TNBC is very short. I’d be a fool to write one off at the first (few) hurdle(s).
New dose, new attitude, new drug administration regime with three lots of anti sickness tablets.
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).
Who owns the images on the street? On our urban walls? When does graffiti become street art or art? Earlier this year whilst in London with the children we stumbled upon an uplifting piece that I immediately connected to. I think this is street art; apparently graffiti is done for other graffiti artists whereas street art is for a wider audience. Like many others we were compelled to have our photos taken with this happy mural. A bright and hopeful backdrop for many a picture of loved ones. Past and present.
Later when looking through my phone shots for suitable images for my blog, the above street art image popped out at me. It made me instantly smile. It felt right for the start of the blog. I don’t want all the chat about cancer to be depressing and melancholy. I want it to connect to you and others. There is a genuine out pouring of real love that happens with a serious cancer diagnosis. Or at least that has been the experience I have been lucky enough to have.
“I want people to be closer, more expressive and have real conversations with each other rather than a life masked or filtered through social media and conformity. “
I appreciate the irony as I write this on a blog and refer to it on social media, but what I try to do is to be honest and unvarnished. Sometimes this isn’t possible as I have to keep something for myself, sometimes it is unfair on my children, family or close friends to share everything, often it is just so raw I can’t even go there in my head, never mind on paper or in conversation. But I try to be as real as possible, and when I am, great things happen; to me and others. People around me are making life changing decisions, they are saying f**k it and embracing or planning for changes. What I love about this, is people talk to me about it in a way they didn’t always before.
A plethora of people have contributed to the creative process of this blog. From the small bits of encouragement with off the cuff comments about the style of my text messages or whatsApps, sharing of poems and the site, with significant and time consuming gifts like pro-bono executive coaching, logo design, help and confidence with publishing the blog. In the beginning, when I was toying with the idea, I hadn’t realised it was live. At least not until I started getting comments and followers from sincere and real people that I had never met! I then had to take the plunge and not look back.
So I am left with the dilemma of whether I should contact the artist, I’m not sure if I’m asking for permission, because I don’t know if I need it. But I’d like to thank him for his inspiration and mood changing role of his work. It’s a manners thing.
I went to a talk on writing at The Guardian a couple of months ago and met this great woman who was going to start a blog about street art. A weird coincidence. I asked her what she thought. Her view was that the artists liked the publicity and as I took the picture it was OK to use it. I described the art to see if she knew the artist, she thought it might be an artist from New York. He’s apparently fond of hearts and travels the world spray painting them. I looked him up – I didn’t think it was his.
With some light google effort I relatively easily found out who’s work it was. I also found that other works I had photographed and been inspired by were also his. Another weird coincidence. I also saw on closer examination that the work was signed and like many things in life, hiding in plain sight!
The work above was created by James Cochran (aka Jimmy C). The ‘London Hearts’ is one of his ‘drip paintings’ or ‘aerosol pointillism’. It is dedicated to the 8 people who lost their lives in the London Bridge terror attack in June 2017. James talks about the response of love in dark times. It was painted in Spring 2018, when I got my cancer diagnosis. This made it even more poignant and I was glad I’d included it. Those people didn’t invite terrorism into their lives in the same way that I hadn’t invited metastatic breast cancer into mine. I decided to write to the artist and let him know that he was part of a growing tribe of people who encouraged me to keep going, to keep telling my story and to hope that it will be longer than the Triple Negative Breast Cancer prognosis stats suggest.
I’ll let you know what he says…
I do believe that art shifts you, heals you, makes you think in different ways. There is a lot of it in and around the hospitals I visit and it definitely triggers something different. Not least that the people walking these corridors are worthy of some break from the monotony and blandness of endless hospital corridors and appointments.
I am not sure what this ceiling installation is trying to tell you? Each piece of silver, or likely silver plate, is reflected in a flattered version of itself. Is this the juxtaposition between the multi dimensional us and the one dimensional us? Or was it more tongue in cheek? As the owner of one boob and one flat chest I couldn’t help but think it was ironic in a clinic with people who’d had breast surgery. It gave me something to think and laugh inside about whilst waiting for yet another consultant.
Again I looked this piece up and the artist, Cornelia Parker was interested in the captive audience of waiting rooms where ‘time and reality are suspended’ (so true) and was influenced by tromp l’oeil. This is a technique often used on ceilings to ‘deceive the eye’ into seeing something three dimensional. She has done some similar pieces, more recently, one of a series of ‘alter ego’ works in 2010.
So just goes to show we draw our own meaning from art and our experiences regardless of the artists intent. For me art does trigger or jolt me to think in different ways, to make connections and uncover insights that I wouldn’t have done if I hadn’t seen it or created it. I am grateful for the rich and vibrant art scene we have in this country and am delighted that I can stumble upon it on the street and in hospitals.
Look out for it on your travels this week. Let us know if you find any interesting bits?
Written on 26th September 2019 (to post later because I knew these last few days would be tough, and they are). If you are reading this in an email or link. Feel free to visit www.thecancergap.com to enjoy and share other posts and poems.
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?
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’.
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.
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).
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.
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.
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.
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.