Except to me. Today is the day that my life, my children’s and my husband’s life changed forever. Today is the anniversary of the day I was told I had advanced breast cancer. The day my lump was confirmed as an invasive ductal carcinoma.
They knew it was bad, but not even the medical professionals knew how bad until all the tests were back. It was about two weeks later that I knew it was triple negative. A few days before this I had read about triple negative and what that meant for the future of patients with this rare form of breast cancer. So when they obtusely revealed that the tumour was oestrogen, progesterone and HER2 negative, I was able to say to my oncologist “so I’m triple negative then?”. He knew, by my knowledge and question that I knew what that meant. Trouble is not many other people do.
About six months after the 15th May 2018 I was confirmed as having secondary cancers in my contralateral (opposite) axilla (armpit). It had only been days since I finished my radiotherapy for my primary tumour. So since 15th May my treatment has just blurred into one long endurance test that keeps on coming. It is relentless.
Right at diagnosis I remember my breast surgeon telling me I’d have 18 weeks neo adjuvant chemo. 18 weeks – seemed like such a long time to put my life on hold for. I was trying to mentally calculate the client projects I’d have to juggle around this inconvenient blip. And yet here we are two years on and I’m still having chemo. My main concern now is running out of chemo options. I’ve now had eight chemo agents and one immunotherapy. Not including placebos. Each cycle is usually three weeks. That first bout was six cycles of three weeks. I’ve now lost count of the number of cycles of chemo I have had. It is the three week rhythm of my normal life. When it stops, I’ll have stopped.
I am now on my third line treatment (this is confusing terminology as its my fourth chemo combo, but they count from one when you get a secondary tumour). This is important as options reduce the more lines of treatment you have had. This is for a number of reasons:
Physically running out of chemo agents for your cancer
Strong indication of chemo resistant tumours
Clinical trial eligibility – these pharma companies like their lab rats as ‘un-messed with’ as possible
Cumulative side effects – there is only so much pummelling your body can take before your quality of life is so shit you say ‘enough, i’ll take my chance with the cancer, enjoy what time I have left.’
I have just finished cycle five of Atezolizumab and Eribulin. I don’t think it is working like it was. One more cycle and I will have done the same as that first 18 weeks of neo adjuvant chemo. Back in May 2018 it seemed like such a long time to put my life on hold for. Now it is my life. It is keeping me alive. It is holding the cancer train back. Just. I hope.
People are afraid of Covid-19 and friends and family worry about me having treatment in a Covid hospital two weeks out of every three, but the reality is my risk of dying of cancer is much higher. The maths is pretty easy. As a fellow metastatic Triple Negative Breast Cancer (mTNBC) friend of mine put it, the mortality rate for mTNBC is 100%, versus c3-4% for Covid-19 (or whatever they are quoting this week). Even without the figures, my eight year old gets the maths. She’s bright enough to know that despite me being on the extremely vulnerable list and us shielding, it is still better for me to go to the hospital and take the Covid risk. That said Covid and Cancer wouldn’t be a combo I’d relish.
I am very confused about how to feel today – my cancer-versary. I haven’t mentioned it to anyone (this post might be a giveaway). I didn’t stop crying yesterday. I went to bed at 5.45pm, which I’m sure was in anticipation of today. Earlier this week, my husband booked today off work. He said he fancied a break from work and wanted to get some jobs done in the house. I’m still in bed typing this, he’s in the homeschooling/housekeeper hot seat. I still don’t know if he has remembered or not, or if it even matters. Some people’s cancerversaries are celebrated as cancer is behind them, they are clear or have no evidence of active disease (NEAD). I’m not sure how to be on mine? I’m still in treatment. But that treatment is also keeping me alive.
Oncologists don’t like to talk about prognosis or estimated survival rates or the time you have left. It doesn’t really help and frankly they don’t know. I’m bucking the trend for average survival after secondary diagnosis, so maybe I’ll surprise everyone. On that basis today should be a celebration that I am still here. I am very much ALIVE! Despite a lot of pain, side effects and increasing disability in my right side, I do feel lucky.
Tired, emotional, but lucky. So let’s celebrate that.
I have long been a lover of nature. The contrast of the seasons has been one of the many reasons I never took or sought out roles or career moves that had me in sunnier more consistent climes. That and what I like to call the depth of our soul, the history and quality of our architecture the richness and comforting nature of our communities and traditions. Since turning down a job in Sydney in my 20s, I knew I was a home girl. I like being near my family and my many and varied friends, I like Blighty and I love the four seasons. None more than Spring.
Spring is always a relief. I’m begging it to arrive as soon as the first snowdrop is up in January.
That white dab of light in a dark long winter. I then look forward to the daffodils and the hyacinths in everyone’s gardens and the glorious lines of hopeful yellow bursts that flank the sides of my road. Daffodils I helped plant nearly 15 years ago, that keep on coming. Making us all smile because we know the light nights and longer days are on their way.
Spring is my favourite month. I think it always has been. My depression is definitely worse in winter. Daylight and the feel of sun gently warming my skin certainly warms my soul and makes me believe that more is possible and I can cope. I have to make less effort to hide my inner loneliness and black dread. I’m always a smiler, but spring makes my heart sing. I smile inside and out.
A few days ago I went on a short walk around the block. I was having a rare moment of being physically alone, alone in good way. Alone in suburban nature. I was listening to the bees in the blossom and the birds, who’s song seems happier now that they don’t have to fight with aircraft and traffic. I always try and tune in to my surroundings. Whilst often being focused on my end goals or ‘to do-list’ I always try and notice the details of the periphery. I am also blessed (I think it’s a blessing) with an incredible memory. If I experience things in a multi-sensory way, I remember them. So I play attention to my senses.
On this walk I notice the smells of spring too. That fresh smell that comes from new shoots and blooms previously hidden deep in a dusty looking bulb. Of starting afresh.
In my garden my husband and I (makes me sound like the Queen!, but I’m trying to avoid naming people) have planted a few little beauties which pop up every year, sometimes taking us by surprise. The peony is another favourite, it’s petals so tightly and neatly snuggled up to each other that they create a near perfect sphere, before bursting to life.
Surrounded by all this new growth and life I wonder if the cancer cells I harbour are shooting new blooms and tendrils or dying back like an internal winter.
I briefly contemplate how many more springs I will enjoy, but for now I want to drink in this one. To meditate in its rich, bright and hopeful palette. To forget about cancer and to leave the screaming children at home while I wander quietly around the block.
Sadly, the welcomed early warm weather will dry up all the beauty of spring petals, stealing their scent and wrecking their form. Some years I feel I wait so long for spring it’s a shame to rush through it.
Much as I love the warmness of the sun on my skin I want to linger in spring and all its gifts a little longer. ..
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.
This is a post I have started and not finished many times. Either events have over taken the post or I can’t bear to transport myself back to the first dalliance with barbaric chemo.But on the cusp of making a decision about new treatment which will likely see me lose my hair again I feel I must revisit it and commit to paper.
I’m not going to write about all the side effects, suffice to say there were many and some still keep coming from that early treatment. It’s also impossible to unravel what was chemo related and what was menopause related. I went from not even being peri-menopausal to post menopausal overnight.
It was like throwing yourself of an oestrogen cliff.
Bone pain, mood swings, night sweats, hot flushes and all sorts of other intimate issues were thrown in the mix with cancer and its treatment. However, the mouth ulcers, bowel issues, blurred vision, chemo brain, neuropathy, hand and foot syndrome and nausea were all less psychologically complex than the hair loss.
Nothing shouts cancer across a busy playground than a bald head. It is the icon of cancer patients. It incites pity, cocked heads, patronising conversations, hackneyed platitudes like no other.
Yet being bald wasn’t actually that bad.
Going bald was a whole new ball game. All the publicity about ‘braving the shave’ for me glosses over the loss.
The cold cap
Rightly or wrongly I decided to try and keep my hair. I endured the cold cap on my first ever chemo back in June 2018. This in itself is an experience! You hair is sprayed all over with cold water, then imagine putting your head in thick rubber swimming hat filled with tubes like the pipes in the inside of your freezer. This is then secured in with a neoprene skull cap and attached to a generator and a water pump. The cap fills with freezing cold water which is then turned to ice on your head. The weight and constriction are intense and that’s before you add in the cold. Wowzers!
As my daughter said ‘Mummy, was it like a really bad ice cream headache?’ – ‘kind of’ I managed to reply!
The wonderful nurses at my original hospital managed expectation brilliantly. They said when you think you can’t handle it any more, take a deep breath and wait another 10mins and it will be ok. I did this and it was. Because my head was so numb I stopped feeling anything except the weight of the cap. You have to have it on an hour before and an hour after so I had it on for about 4hrs. Apparently it freezes your hair follicles and stops the chemo getting to you.
Like most series of chemo I had six three weekly cycles. i started with FEC-T. A cocktail of 4 drugs delivered individually via i/v, interspersed with the steroids, flushes and Piriton. So I only had to endure the cold cap another 5 times. I thought I’d give it a go.
Except my hair started falling out 10 days after my first cycle so it seemed a bit pointless. So a few weeks after I discovered I had cancer I had to deal with the very real reality that I was going to lose my hair. I had yet to tell all my friends and colleagues I had cancer, I hadn’t absorbed it myself. I was still fulfilling work commitments and had not told clients.
A few days later I had to deliver a lecture on Innovation and a facilitated workshop at the London Business School. My friends and family thought I was mad, but I’d worked on winning this piece of work for almost a year and I’d done the prep so I only had to stand up, smile and deliver. This seemed easier than uttering the words ‘I’ve just found out I have advanced breast cancer and I’m on chemotherapy’.
I’d been on chemo for 3 weeks and my blood counts were at their lowest. I was seriously immune compromised. I decided that the train and tube wasn’t going to cut it. It was bad enough being in a room with 80 people. I either cancelled (which I’ve never done) or got a taxi and got on with it.
So the morning I had this lot in my hand I got in a cab and delivered. I had to make a last minute jacket change as the navy one exasperated the hair which was literally falling out as I moved. The session went well and I loved it. They thought I was a right diva when I left and jumped in my private car to take me home. If only they knew!
The week before the LBS gig, I panicked that all my hair was going to be gone in days (based on the rate It was falling out and the amount I found on my pillow, in the plug hole and on the floor).
I needed to get a back up plan, I wasn’t ready to stand up bald in a room of 80 people. I needed to source a wig. And fast. This is not as easy as it sounds. In the NHS you need a referral, then an appointment and then they ordered something in. After a bit of phoning around I found a wonderful women about 45 mins away from me. She had no appointments, but put me on the cancellation list. She also asked me to send some photos of my hair via email. Within minutes of sending the email she called back and said she was pretty sure she had a wig in stock that would suit. Originally she’d talked about ordering 4/5 in and then me trying them and deciding. I was comfortable with this. However, she sounded very sure about the wig in stock. Sometimes you have to trust someone who specialises in something. I rang a good friend who I knew would be up for and not freaked out by the trip and would give an honest opinion.
Off we went and had an absolute ball!
It was honestly one of the most unexpectedly fun outings Cancer has gifted me. The wig was so perfect it was weird. It was my hair, but on a good day. The woman styled it and showed my how to brush it, wash and condition (I kid you not) and dry it. All things I had no clue about. Suddenly staying in to wash my hair would be a reality!
My wig was expensive, yet another hidden cost of cancer, but it was worth every penny. I didn’t need to wear it to the LBS, but the day I bought it I wore it for school pick up. It was a tight fit as I still had quite a lot of hair despite what had fallen out. Two mums were in on it, but apart from that no one knew. 95% of the playground didn’t know I had cancer. I got several breezy ‘nice hair cut’ ‘you look well’ comments and one Mum who has the same hairdresser said she loved the cut and had sarah done it? She touched it and said how well it sat at the back. I felt sick inside, dreading it coming off as she touched it, cringing as I lied about my cut! We laugh about this day now. The best thing about it was both my son and my daughter didn’t even notice. When I took it off a home they were gob smacked, but also my daughter was relieved as she was most worried about a ‘bald mummy’ picking her up from school. The thought of the hair loss bothered her a lot, she still goes on about it now.
I am now on the cusp of having yet another change of treatment as my disease has progressed again. Finally the scans and oncologists opinions agree with my own experience of the growing tumours in my axilla and the ever growing skin and chest wall metastasis that I have to look at in the mirror and deal with the chronic pain of. Despite what is in plain sight they don’t show up on an ultra sound or CT scan. Finally I’ve been referred to stage 2 of the trial and am hoping I’ll pass eligibility and they’ll give me immunotherapy. I’ve been campaigning for it for over 12 months and have had the placebo/control in the last 2 trials so this has to be 3rd time lucky. Surely.
The thing is immunotherapy might not even work but the good thing (I think) is I get it with another chemo agent called Eribulin. This will be my 8th chemo agent and my fourth series of chemo treatment. I remember when they first told me I had cancer and I’d have 18 weeks of chemo, nowadays I get worried when I’m not on it or it options are limited, which they are.
This chemo is likely to cause complete hair loss again. I’ve had hair thinning with the last two, but not complete loss. Yes I have a great wig, but I’m still not relishing the thought of the cold cap or losing all my hair again. That’s why I thought I’d finish this post.
People who ‘brave the shave’ for charity do not go through the almost mourning period of losing every hair on their body. They get the end result not the tough journey to get there. It’s not just the hair on your head either. I never knew how much I liked and needed my eyebrows and lashes. Aside from the fact that they frame your face and eyes, they also stop sweat running in your eyes or flies sticking on you eyeballs. The hair up my nose also stops pollen going right up it and warms and filters the air we breath in. This combined with no mucus makes your nasal passages very uncomfortable. Never take body hair or lubrications for granted!
Braving the Shave
Eventually at the end of August 2018 I could not deal with the patchy hair anymore. I have worn a hat or head scarf for most of the summer (wig was just too hot for the summer of 2018) with little bits of hair coming out the bottom. So it looked like I had hair. The bald patch in the middle was hidden from view. It was however always waiting for me when I got home, when I cleaned my teeth before bed and again in the morning. Time to take charge, the hair had to go. My husband shaved it off and it was massively liberating. Should have done it earlier. I still wore my wig for most of Autumn.
Wig, bald, scarves & regrowth
Look good, feel better
In the middle of Autumn I did a course with a small, but important charity called ‘Look good feel better’, they give you a bag of cosmetics and a 2-3hr session on painting on eyebrows, putting some colour in your cheeks and a bit of a spring in your step. It was fab. The BBC happened to be filming the day I had my session and most participants weren’t keen to be on film. I said yes as I thought the charity was good and it might help funding. Plus once you’ve had a boob off and half the county gawping at and touching your chest, you get a bit blasé about these things. A few others said yes too and they made the film below that was on the BBC news. In fact it got slightly more coverage than I had anticipated. I was unlucky enough to be the mug shot on the front of the clip, double chin and all. As I have since discovered that it is all over twitter and all the staff at my local hospital had it on their newsletter so I thought i’d include it here too.
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.
I know the weekend’s post was a bit hard going. I lived it and reading it back was tough enough for me. So time for some cheer.
That’s the thing about cancer treatment; one minute you are crawling on your bathroom floor, the next you are whizzing around London having a fine time. Then you’re shattered again. ‘This too will pass’ has become regular self talk for me and many other cancer thrivers.
Today I made the trip for 10 vials of blood to be taken and tested to make sure all my organs are behaving themselves and have managed to process the 10 of the 14 days drugs I poisoned myself and hopefully the cancer with earlier this month.
Good news is, my liver and kidney function and my red, white and platelet cell factories seem in fighting spirit. And so too am I.
I’m still adjusting to the peaks and troughs of this new medication, but hopefully with a reduced dose and three lots of anti sickness drugs by my side I will navigate cycle 2 (and half term (!)) with a bit more grace.
I was lucky enough to get the prime viewing seat for my bloods today. The rain stayed away too.
Today involved, being weighed (1 min incl. lace up shoes) taking some bloods (10 mins), seeing an oncologist (which was less than 5 mins as I’ve been in and out with bad reactions so they are up to speed with my side effects), making an appointment for 3 weeks time (1 min), filing a prescription (2 mins) collecting two lots of drugs from two different places (5 mins) total to collect and walk between two places. So 24 active patient minutes. I left my house at 8.30 and got back to my town in time for a work meeting at 5pm. Granted the travel time is a big chunk of that, but I still spent over 5.5hrs waiting at various places or travelling between parts of the same building.
There has got to be some efficiencies to make there surely. I even transported my own bloods and handed them to a nurse to hand deliver to the lab, because the porter system can add another hour at least. No wonder we have a productivity problem in this country – all those people not working, but waiting, or waiting with someone who’s waiting.
I’m an impatient patient. You may have picked that up! I hate inefficiency. If I can see a quicker, better, different path I like to take it or find it.
That said, Knowing that today would be a waiting day, I planned some jobs and some cheer. In between sorting my annual accounts, finishing a poem, drafting this and picking up some presents I managed a bit of cheer. I stumbled upon a cafe behind the hospital and decamped for some non-vending lunch. I then met Jimmy of ‘London Hearts’ fame for a coffee and to pick up my commission of our very own ‘Cosmic Heart’.
As I had expected he was a lovely bloke and very humble about his talents. I started to shake his hand, but that felt odd, so I gave him a big hug, which felt right. We chatted a while about his work, my blog, legacy, reaching out and connecting to your loved ones and inspiring communities of people to do the same. I am so glad I stumbled upon those hearts, pressed send on what seemed like a slightly unusual email and met the heart behind some of the world’s street art.
Despite the waiting, today was a good day. I feel good.
You don’t have to wear pink, To be aware of breast cancer, It’s become so big, people don’t think It will happen to them.
If you do one thing today, Make sure you know how to check, I know you don’t think you have cancer in your deck. In Britain 31 women will die of breast cancer everyday.
Real sisters, mothers, daughters, aunts, wives, Lose their lives. Everyday. Why not me? And why not you? Don’t be passive, there are things you can do; Real conversations, commit to checking. Because Real lives, cancer is wrecking.