I write when I cannot speak, Yet, now my hand and arm… Prevent me conveying the words I seek, Over zealous nerve endings, fingers curled to my palm.
My touch so sensitive, as if I’ve been burned, Pins and needles, constant tingling, I cannot grip like I feel, Crockery dropped, doors left closed, new dexterity learned, Slicing bread and chopping food taken for granted. Now a big deal.
I’ve escaped my thoughts and my fate, By keeping plenty on my plate, Always hands on, difficult to let go, Now losing my grip and feeling so low.
16th May 2020
Those of you who are early or avid readers of my blog, will know that poetry was how I started writing this. I’ve struggled to write a poem for ages and then yesterday this came from the darkness.
Read my other poems by searching or looking under the poetry category.
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 understand that we are amidst sombre and serious times. The daily death toll is a reminder of the severity and cost of this pandemic. This regular drum beat of the news can numb us to the sheer number of real people who are being killed by Covid-19. Despite the sobering reason for lockdown, there are quite a lot of things I like about it.
Life is simpler, which is saying something from someone who has had to ‘shrink’ her life and clip her wings considerably in the last two years. It’s just a bit calmer. Everywhere. So many fractious family moments were about getting out the house with the right stuff at the right time. Now none of that (Zoom call log in’s aside).
Appointments and meetings that were previously ‘impossible’ to do over the phone are now slotted neatly between bread making and home schooling. rather than dominating a whole day of family/work life. I realise that sounds so idyllic, rest assured that both usually involve unmet expectations and swearing! When I do have to travel to an appointment like today, it is a breeze. A 3.5hr journey to the trial hospital reduced to 1hr 20mins; parking right outside; patients only in the hospital and a lot less of them and previously critical parts of each treatment cycle no longer required or streamlined. Above all, a lot more civility and appreciation of each other. All this has massively improved my quality of care and life.
Why did it take this, to challenge and shift the status quo?
I have been in communication, innovation and change most of my working life. I understand about entrenched ways or working, about stuck patterns of thinking. This is why i have to push clients to think differently. I ask them to role play made up scenarios, to consider the opposite of every aspect or assumption of their business or to use ‘imagine a world where….’ cards to stimulate them to activate the side of their brain that is creative and unaccepting of ‘how things have always been’. When I wrote the ‘imagine a world where…’ cards I had examples like ‘we all have to work from home’; ‘there are no schools’; ‘food is rationed’; ‘poorer paid work is more respected’; ‘brands matter less’; ‘people are grateful for small things’ and ‘our local communities are revived’. I sometimes had difficulty encouraging clients to imagine one of those things happening in their life time and I certainly didn’t imagine all of them and many more happening together in mine.
As an individual and a consultant, I naturally look for a more efficient way or a better experience. I do challenge ‘the way things have always been’. I’m restless, so I like to find ways around, ways through (avid blog readers may have noticed this trait of mine!). This is not the way of large corporate organisations or institutions like the government or the NHS. However, stuff that was deemed tricky or impossible in the world of cancer treatment, palliative care and counselling is all being turned upside down and delivered by digital means.
Needless and unchallenged processes, protocols and paradigms, once set in stone have dissolved. In days or weeks Government, food service logistics, local councils and multiple grocers have collaborated to deliver boxes of food and essentials to our vulnerable population. I’m considered one, my disabled, housebound, 89 year old mother-in-law who lives alone is not – I’ve worked around this since (she will make better use of the 1970s throwback tins than we will anyway).
Virtually overnight a joined up NHS app allows chemists, doctors’ surgeries and patients to interact in lightening speed. I no longer wait in a phone abyss to make an appointment with my over stretched GP to get a repeat prescription. I then don’t wait in a germ ridden waiting room or queue up at the chemist to find my items are yet again out of stock (and this was before lockdown and Brexit!). Now I effortlessly tick a box on my phone, while swotting up on the definition of a ‘relative clause’. Then a few days later, when the item is in stock a lovely kind person appears on my doorstep (just like the shopkeeper from ‘Mr Ben’, as if from nowhere), with the complete order of my prescription. It is so God damn efficient. Although, I’m sure my pharmacist and GP miss my incessant visits.
The BBC (another great institution I hope we will cherish post this pandemic, rather than take for granted), have collaborated with educational brands like White Rose Maths, Twinkl and many others. They have produced fantastic structured resources and lessons for every school year over the Easter holidays. Something that would no doubt have taken months or years to negotiate copyrights, access and IP pre-Covid and the home schooling crisis.
Even zoom socials are better for me. Forget covid, any cold or cough germs have previously put me in hospital. My white blood cells too scarce to fight off common everyday bugs. I’m often too tired to last the duration at adult events, or muster up the energy to get ready. Zoom avoids a lot of this I even skipped lipstick and the prosthesis with one good friend!
Aside from the practical benefits of lockdown, there are some psychological ones too. I feel less obligated to do things and this makes me feel less guilty. I also feel less like I’m missing out on my fulfilling career, overseas travel and the exciting adventures that social media would have me believe ‘everybody’ else is enjoying. As I said on 19th March, it is great to welcome the rest of the world into my uncertain world. Even if its only for a brief while.
Imagining the unimaginable and dealing with uncertainty are definitely skills that advanced cancer patients have been trying their hand at mastering for longer. It is still tricky, but in lockdown we tend to spend less time longing for an exit strategy and more time enjoying the moments. Maybe this is because our exit strategy from uncertainty is pretty final.
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. ..
This time yesterday I was doing a yoga class on Zoom and today I am desperately trying to finish a blog post in bed before the kids wake up. Why the keenness? At 9am my laptop gets seconded to ‘home school’ and I don’t see it until later in the day. Normally when I’m doing after school snacks and prepping dinner. I then have to log the kids on to their Zoom calls with their class mates! Which I think are great as the lack of peer social contact is having quite a negative effect on both my kids. Yesterday I took the opportunity to go for a walk (with my son) while my daughter was ensconced on a slightly crazy seven way Zoom call with a handful of the 8 year old girls in her year group. It was a joy to see all their happy little faces, yet I wasn’t sorry to leave the squealing behind. Earlier that day (P.S I’ve learnt yesterday that that is a fronted adverbial!!), I’d joked on a WhatsApp that Zoom was the new babysitter. However, I cringed when my husband informed me that one of our friends (another of the 8 year old’s Mum) had called him because our daughter had managed to turn her camera off or something similar and was having a meltdown on the call. I had asked him to keep an ear out for her, but I was slightly amused at this digital to human hands on work around my daughter had triggered.
Anyway I digress (as usual).
Those who follow me on Insta will know this, but for those that don’t: it is with huge relief that I can confirm that my bloods came back up the Friday before last. My neutrophils went from 0.4 to 18.8 in less than 3 days. The extreme back pain from the GCSF injections was worth it. I got my Day 1 treatment. And again by the skin of my teeth (neutrophils came in at 1.1) I got my Day 8 treatment. It was a bit odd in London that first Friday, but nothing like the Friday just gone.
That day was more than eerie. Whilst a week or so ago there were less people (the Millennium Bridge had not even a handful of people on it) and less traffic, on this latest Friday the shops and cafes were dark, chairs stacked on tables in the middle of the day, all the shutters down in Hatton Garden, some pubs and shops in the city were already boarded up, presumably to avoid vandalism, looting or squatting.
Today, I was with my brother. We spent a lot of our childhood Sunday’s driving up to London and seeing the sights from the car before parking up and going to a museum or a favourite haunt of my Dad’s The Tower Hotel Carvery (it was the late 70s/early 80s and it made a change from a Berni Inn, plus they had free parking for patrons).
One of my many memories of these Sunday jaunts was quiet roads and pavements, and closed shops. Resturants and museums being your only available open establishment. But last Friday it was deserted. We had a green light pretty much from Hammersmith to the Holborn Viaduct. We sauntered round Piccadilly Circus in my brother’s van, taking pictures as we went. A journey that had been taking 3.5hrs we did in 1hr 10mins. We arrived so early we had to wait in my brother’s van before queuing to get into the hospital. This is no hardship as he has a kettle and an enviable array of herbal teas, coffees, soups and hot chocolates. I’m loving hanging out in this van with my little bro (he looks after me like he’s older, but he’s actually my second youngest sibling). I’ve spent a lot of my life sitting next to my Dad or my brother in a van or lorry. I even learnt to drive in a little van!
My brother carried my bags to the hospital building queue, but left me there. It was 8.15am and the queue (2m apart) was already long to get inside the hospital. Once in the lobby security made sure I sanitised my hands and then I completed a Covid-19 questionnaire/checklist with a nurse who then signed the form that allowed me in the hospital. I then made my way to the place to have bloods. There were 2m tape makers to queue for the lifts, but no queue. There was only me and about 5 other people in the entire ground floor of this central London hospital. You could hear a pin drop while waiting for that lift. The lift itself was divided into 4 spaces (not strictly 2m apart, but they were trying). Today, for the first time ever, I was the only person in this lift.
Once on the chemo floor, it was busy. We had to wait to go in to the bloods and chemo waiting room. No one allowed in without having their temp. tested.
Last week this had been quite jovial. We had all had our one guest/relative with us and a chemo patient from a couple of generations above me started singing Vera Lynn Songs. We all joined in. We felt united, cancer patients, facing chemo yet again with Coronavirus just another challenge to overcome. It had an ‘in it together’ spirit that I had felt many times on a chemo ward or on a TNBC forum, but this time it had bells on – we were singing Dame Vera Lynn FFS.
A week later the wait outside the waiting room had a somewhat sombre atmosphere. People were on their own. Relatives left outside the hospital. Everyone was jostling to keep 2m apart, yet not lose their place in the queue and all the while dodging the new patients arriving gingerly from the 3 lifts. Lifts that opened straight into this unspoken, eerie, seemingly haphazard, yet strategically placed ‘queue’. It was weird. Once in reception patients chose their seats to keep as far away as possible from the people already seated. It was a bit like picking your spot on a beach that is filling fast. I even had a towel, blanket, packed lunch and a cool bag. It gets cold having your head and hair follicles frozen for 3hrs. On the advice of a friend, I also take a big bag of frozen gel packs that I wear on my feet and hands with special foot sleeves and a pair of my husband’s old socks (on my hands). Alledgedly, this will help prevent nerve damage and the chemo getting right down to your outer extremities (in your capillaries). I have had a lot of peripheral neuropathy and am still dealing with a lot of numbness and nerve damage in my right hand. I can’t feel or use my pinkie or my ring finger properly. This pain is indicative of damage to my ulnar nerve. My physio, pain relief therapist and lympodema nurses were making a big difference to this and other pains. The movement has been improving in my whole right arm, but it’s impossible to receive hands-on physio, deep trigger point or lymphatic massage over the phone or internet. So, whilst struggling to carry my cold blocks and to put them on myself, I do it because it just might make a difference to my comfort levels, use of my limbs and my quality of life.
The atmosphere in the chemo bay is one of caution, suspicion and the unknown. Almost no chit chat amongst the staff or the patients. Each one dancing between politeness and wondering if they/you are the person that will unknowingly pass Corona on to them. At home I am waiting two days to open post and touch envelopes or grocery packaging, but here I have a chemo nurse right under my chin attempting to access my port.
I can feel her breath.
This doesn’t feel like social distancing, but what bloody choice do I have? Stay at home for 12 weeks plus and let this aggressive cancer take hold again. Cancer cells growing in my pleura causing me to feel like I am drowning in my own lungs. Cancer cells blocking my blood vessels and lymphatics so my arm blows up to over 3 times the size and weight of the other. Cancer cells growing in the nodes under my arm so I can’t lift it and pushing on my nerves causing deep crackling pain. Cancer cells growing in the skin on my chest and mastectomy scars, so it is so tight it restricts movement and eventually the skin breaks and God only knows what breaks out of my chest wall and will not heal over.
No thanks, I’ll take my chance with Corona.
Obviously I don’t fancy getting it or being the one who might bring it home to my family, but given the choice between the certainty of the cancer taking over or the chance of getting Corona (even with complications) I know which I will continue to chose. I’ve spent nearly two years on treatment that has not really worked and now after 13 months of teeth gritted determination I have finally got a drug combo that seems to be working. I’m not giving up on that lightly. Not on your Nelly.
Once I have had my chemo I head out of the hospital in silence, alone, with all my bags and a heavy heart. I have had over 3hrs to think about this hand of cards I have been dealt and have tried to play as doggedly and as positively as I can for nearly two years. I am tired and overwhelmed by sadness. Sometimes, it is just too much to bare emotionally, never mind physically.
I pop out the hospital grounds and see my trusty, solid (no offence) brother in his familiar, safe van and I burst into tears. We abandon social distancing and he gives me a bear hug.
Time to get the van kettle on and sail home through the baron and still streets of London.
Chemo & Immuno on 20th and 27th March 2020 finished on the 31st March 2020
One of the many things I have learned about life and myself over the last two years is that accepting the facts, frees you to be back in the driving seat. Those of you who read my blogs regularly will say, ‘but you never give in or give up or accept a situation’. Well actually that is not true. Giving up and giving in are different from acceptance. In order to accept I need to push the boundaries – its in my DNA and my upbringing. I do not accept things on face value, I interrogate the situation to challenge and then find out the facts, the parameters, what are the restrictions that we have to work within. I accept those real facts (quickly), I then make a plan to go around them or find a different route to the same or similar outcome.
Being angry, frustrated or taking the role of the victim does not help you or anyone around you. Never has the phrase ‘we are where we are’ been truer.
Yes I am going to be beyond devastated if they cancel my treatment or travel to London or if they have no staff in the hospitals. I finally have a treatment that is working – once again Covid-19 in this situation would be plot line that lacked believability – but here we are. I will do everything in my power to get treatment on Friday and then two out of every three weeks for the foreseeable future or this cancer will get me and that really will be that.
I did not accept – ‘wait until next week for treatment to see if your bloods come back up’. I asked what my neutrophils had to be to treat me, and how we got them there in the fastest time. I asked what else we can do and if we can have treatment earlier than a week’s delay. The team appreciate (most of the time) my can do/will do attitude and my challenges to the limits. They also are very clear with me about the facts. I know when I have got to the real facts. I then accept and move on to make a new plan.
If I had had chemo yesterday I would not have been able to use the time to plan for the inevitable home schooling. If Johnson hadn’t called it yesterday we probably would have had to. In May 2018 when I was hit by the blow of an advanced cancer diagnosis I thought I’d be taking 6-9 months out my life and then back to normal. It became viserally apparent that was not going to be the case. I would be lucky to see my kids out of primary school and cancer was my new normal, here forever, treatable, but not curable. I accept this situation because I know cancer will rob me and my loved ones of so much future, I refuse to let then rob me of the now. I’m not giving it that power. And Covid-19 can do one too.
So one minute I’m worrying about seeing my kids through primary school and now I am planning to run one in my kitchen. I accepted that I was going to have to fit home schooling in around chemo/immuno and recovery earlier this week. It was inevitable. Yes, like the rest of the nation we could all do without this. Our lives have been turned upside down.
Perversely, I’m looking forward to it. When Corona-19 hit I thought – well at least I don’t have to worry about catching a common cold and ending up in an ambulance in the middle of the night. Finally the nation is washing its hands. My chances of being febrile neutropenic are smaller and neutropenic sepsis more unlikely too. That said Covid-19 would give my body and its defences a run for its money so I’m not licking the tube yet. Especially now I’m neutropenic.
I think the other reason I feel strangely calm (aside from the fact that I haven’t yet had to home school and spend 24hrs straight with my kids (and my husband) indefinitely), is I feel like the rest of the nation have stepped into the same crazy, uncertain world I’ve been navigating for two years and its great to have the company.
Come on in – it ain’t so bad.
It’s also great to have some intellectual purpose for my days – even if at 47 I am going to have to finally learn my times tables and how to spell. However, cursive handwriting might be a push too far (sorry Mum – it will continue to disappoint and annoy you).
So I say don’t give up and say you’ll be crap at home schooling, at cooking like you are on an episode of ‘Ready Steady Cook’, at giving your kids what they need.
Accept that this is happening.
The surreal just got real.
Take a breath, get on board, learn something about your kids and yourself, get the wider family involved and have some fun. This really is an opportunity of a lifetime. A challenge we never thought we’d have to deal with, but we are. A carved out space to create memories you would never have had the energy, time or commitment to do.
Oh, and accept that sometimes you are going to F**k up too.
I know I’ve been radio silent. I know you have been thinking about me and I know by the volume of texts and message I have received in the last week that Covid-19 has triggered the rise of my name up the list of people to think about.
Thank you for thinking of me. I’m OK.
Actually I am not just OK. I am pretty damn good. I could have written this a couple of weeks ago, but despite my strong belief in my intuition I was still too superstitious to announce that my cancer is shrinking. I think I need to write that in capitals.
‘MY CANCER IS SHRINKING’
I knew this by the feel of my armpit, the colour, shape and feel of my mastectomy scar and chest. They way I felt, my shrinking arm, my ability to breath and move. I knew it in my heart, but whilst I couldn’t keep my opinion from close friends and family I didn’t feel I could commit the news to writing without the confirmation of a scan (even though these are notoriously unreliable).
Today my oncologist confirmed that I am having what is called a partial response (PR) to treatment. When you have been fighting advanced cancer for nearly two years this good news does not seem real. The tumours have not gone altogether, the pleural fluid was malignant and the cancer is still lurking and lying low in my body.
Waiting to pounce.
My treatment is to extend my life expectancy, not curative. But God damn it (too many Netflix boxsets, I never say that!!) now I have it in writing, that it is actually shrinking.
And that my friends (or should I say you’ll) is something to celebrate.
However, we know it is a roller coaster and the good bits are pretty rapidly followed by a setback or frustration. This wouldn’t be my journey if it was straight forward.
18th March 2020
I wrote the beginning of this post yesterday morning when I had seen my oncologist and checked in to the NHS on-site hostel (more later!). I’d got through the security and the temp checks on the doors of the hospital. I’d navigating (at very wide berth) the person having a row with security on why they were not a Covid-19 test centre. I’d passed the staff having their ‘donning and doffing’ training for their Covid-19 suits. I had my bloods done, lovely Jim (name changed to protect his blushes) got my port first time, I went straight in to the oncologist, the news was good, they were still treating patients: all there was to do was hang out on my own and do some work and read my book all in the knowledge that my treatment was working for the first time and my tumours were actually diminishing below my fingers. I was happy and chilled despite the eerily quiet waiting rooms and the impeding doom of Covid-19. I was isolated in my own little bubble in the NHS hostel. That even looked ok once I’d put the sheets on my bed and covered the mattress cover!
Then my phone rang and the trial’s nurse informed me that my bloods weren’t good enough to go ahead with treatment tomorrow and it would be delayed a week. The treatment that was properly working for the first time in 2 years. I was now frustatingly stranded in central London with no treatment the next day. I was confirmed neutropenic (no fighter white blood cells). A situation no one wants to be in, especially on chemo & immuno and especially in the midst of a global pandemic. I was gutted and a little bit scared.
As I was about 10 yards from my oncologists office I suggested that I popped over. There had to be some advantages to being on site. I was poised for action and I needed to see the people who could help, face to face (from 5ft). Together we had a chat about options. I did not want to delay a week. What if they close the chemo ward? What if the cancer sees its window of opportunity and runs rife? What if I get Covid-19 and they won’t give me treatment or worse throw me off the trial?
Despite the racing questions, trial protocol and frankly common sense told me we couldn’t do treatment as scheduled. I didn’t want to wait a week. The oncologist prescribed me some GCSF injections. They super charge your bone marrow into making more white blood cells and give you mental bone aches. Oh goodie.
The upside is I have persuaded them to let me try for treatment again on Friday and of course I hope to go from 0.4 neutrophils to something so super charged Covid doesn’t even darken my door.
The truth is I’m not worried about having Covid-19, but I’m not rushing to a ‘Covid Party’ either. My big concern is that they stop giving treatment, if they need the wards or staffing becomes so low that hospital can’t function. School closures are imminent. I’m sorting out lots of stuff for home schooling, but I now have to juggle getting to the hospital and back and childcare. The worry at my hospital is if the schools close the healthcare staff won’t be able to work. This is a systemic challenge of gigantic proportions, we have no idea how this will impact on our society in the long and short term. There will be many unintended consequences, good and bad.
I have given up on a normal future. And a normal now. I have had to stop most of my work as my appointment schedule is so intense. I have faced squarely into the depths of my own mortality. I have accepted the reality of an early death. Now the rest of the nation is being asked to challenge what their day to day life looks like for the foreseeable future.
The plus side to all of this (toilet roll hoarding aside) is we should spend more time with our immediate family, in our homes, just being. Creating experiences for our children that will shape them forever. My hope is that co-operation, creativity, collaboration and kindness will prevail. We will consume less and pare down our lives a bit.
I have certainly had a simpler life (parking the advanced cancer dramas) for the last two years. I booked our first family holiday on a plane a few weeks ago. The kids were delighted, it was iconic to them. If we can fly and leave the country, Mummy must be getting better. We cancelled it two days after booking – still at least my kids aren’t blaming me anymore!
Tech is failing me for photo uploads today and my proof reading head is not on, but if I put off posting another day it will be another week.
It’s fair to say I have been struggling to keep up with day to day life, never mind writing this blog. Physically and mentally hauling my body out of bed has been a mission. My movement has been restricted by the increased swelling in my arm from lymphoedema (I keep saying I’m going to write a post on that, but a bit like the hair loss one, it is difficult to dwell on). This swelling has also been in my chest and shoulder. The weight of my arm has meant that I am wearing a sling to support its weight and try and relieve my shoulder. This is in addition to the compression glove and compression sleeve I wear on this arm. My right arm. Writing and typing are both painful.
In case we didn’t know that cancer is a systemic disease, the inter-related nature of all my symptoms is daily evidence of this. The swelling and the increase in disease is also pushing on my nerves and my blood vessels. The latter could also be a DVT, so I’m on daily injections to keep the blood thin. My belly a bruised pin cushion. The pressure on my nerves causes the weirdest pains, odd electric throbs and flashes of mini lightning under my skin (paracetamol and ibruprofen don’t even touch this pain). I have had to go on nerve drugs and a low dose of morphine. Neither of which I wanted to do, but the chronic pain meant I had to give in to this.
Giving in is not my thing.
I am now finally beginning to get on top of this pain and the breakthrough is managed with top ups. With the drugs comes a little more sleep and a slightly improved patience level (my family would argue that this is negligible, but they don’t know how many times I don’t lose my temper, but bite my tongue instead). It’s fair to say that 21 months dealing with cancer and the medical system takes is toll on one’s tolerance as does chronic pain. And that’s without throwing a young family and daily life in the mix.
As you know I have been fighting to get on an immunotherapy trial and I did not want to jeopardise this or lose focus by banging on about how awful I felt. I donned lipstick and a smile and got myself onto the trial.
But, eventually I had to admit that breathing was a struggle. It’s something you do quite a lot in any given hour and not even I could put a brave face on for that . My breathing was shallow and noisy and it was not going to win any efficiency awards for gathering oxygen either. That combined with red blood cells depleted by chemo makes for an interesting time obtaining oxygen. My normal pace of life was impossible, even my new post cancer pace of life was unachievable. It was harder and harder to get out and about. Finally, one day I had to sit down and watch TV in the day(!), for those of you who know me you will know this was not a good sign.
All in a week off
This week is my week off from chemo/immuo and blood tests, so we managed to squeeze in yet another trip to London. This time to have my lung drained. When the oncologist mentioned this I didn’t like the sound of it and I had to get my head around new treatment, the cold cap etc, so I put it to one side. I was so exhausted and relieved after having my first lot of immuno that the thought of googling and looking up draining pleural effusions was just too much. This time, very uncharacteristically I decided that ignorance was bliss and I would not research the life out of the procedure I was signed up for. It involved a pretty long needle and an accurate piercing between the lung and its lining. That was enough to remind me of having an epidural and the legal paperwork you sign while having contractions about the implications of needles slipping or going in the wrong place. I’d not enjoyed that experience at all. My brain was full with info and terminology and I wasn’t brimming with energy to look up lung draining.
The trouble is I like being informed. Being uninformed made me anxious about what was going to happen. Before I knew it I was changing into a hospital gown and my pants and signing lots of paperwork. This was clearly not a quick nurse led procedure. If anyone else asks me if I have had the risks explained to me I might scream. I love the euphemisms too – like ‘potential damage to underlying structures’ (piercing the needle through one or more of your vital organs!). I consider goggling the procedure from behind the cubicle curtain and then think better of it.
Apparently CT scans are unreliable at predicting the amount of liquid (most scans seem to be unreliable!), which means the respiratory consultant is unsure whether there will be that much fluid or if they can safely remove it. I let her know that I can definitely hear the fluid, although it does seem to be marginally better in the last week. Once again I am in the paradoxical situation of hoping there is not too much fluid, but enough. She explains to me that there is one procedure where they use a needle and do an aspiration (suck the liquid out with a syringe). Assuming its safe she thinks this is the likely option. If there is a lot of fluid they will put a small tube in and attached it to a drain to clear the liquid out. We talk about the complications of both. I am trying to listen, but just want her to get on with it.
I am wheeled into a small room the cross between a scan room and an operating theatre. The consultant has two nurses, lots of equipment, a fridge containing pots of dubious looking fluid – kombucha or pleural edema – difficult to say.
I dangle my legs over the bed and put my feet in a sort of side table, that resembles a short lunch tray trolley with no dirty lunch trays in. I lean over a pillow and the consultant takes a look on the ultrasound. I can’t resist a peek, she picks upon my interest (obsessive nature) and points out my liver, diaphragm, lung etc. I resists the temptation to say ‘oh the underlying structures you’re hoping to miss with the needle’. She finds the pleural effusion and seems pleased. It is big enough to drain. I am pleased too. Funny what you wish for. She then uses the ultra sound and what I can only assume was some kind of sharpie to mark the spot to put the needle in. I am keeping silent and completely still (I know, a rare moment). She asks me to breath exactly as I am doing. Not any more or any less. I have no idea how I was breathing. This makes me anxious – normal compensating reaction for anxiety is to deep breathe. Except I can’t.
The needle is in.
She says ‘well done you can relax now’ and to my surprise I do. The moment I’ve been dreading for 2.5 weeks is happening. I feel able to ask: ‘Can you see the needle in the fluid on the screen’, the consultant replies that she turns the screen off after she puts an x on as she prefers two hands on the job to insert the needle (rather than the scanner in one). I stopped asking questions.
As I’m still alive and breathing I assume my lung hasn’t been punctured or worse.
She syringes of c100mls of liquid. I ask to see it (the exit site is in my back). It looks like urine and it looks like a lot. She then let’s me and the two nurses know that they are going to switch procedures to a thoracentesis as there is more fluid than expected. They insert a tube into my back and the liquid flows out into a drainage bag. It is actual quite satisfying. It’s a very odd sensation, but it feels good. The team shout measurements and numbers at each other. It keeps coming. They show me the bag (I didn’t ask, by this time they know they have a control freak on the trolley). It now looks like chicken stock and I reckon it would make a enough gravy even for our family roasts. It keeps coming.
She asks me if I’m in any pain. Pain is so subjective. I’m uncomfortable, it feels weird, but is it painful? No, not really. They keep going. She asks me my height. I feel some tightness in the top of my trachea and wonder if I will imminently start to choke and splatter like the end of bleeding a radiator. It dissipates. She asks me if I am ok if they try for a litre!
‘Jesus’, I shout out. I apologise for blaspheming. They show me the bag and say we are at about 750ml. I blasphem repeatedly and apologise. ‘OK go for it’ I say. I am imagining a giant measure-o-meter from a 1970s Blue Peter appeal. My chest feels a bit tighter. We are nearly there. ‘Stop’ she says. The flow is interrupted.
Claire – a litre is about what we go for in someone your height and we’ve got 1.1litres.
It is still flowing, but we don’t want to risk lung collapse. Obviously, I’m fine with this – they’ve clearly got way more experience than me and if I’ve managed to carry this lot around a few extra 100ml’s probably isn’t going to notice.
I feel instantly better (who wouldn’t having let go of that lot). My chest is sore. I am tired, but I am relieved it is out. I wanted to run outside and breath in the February air. I took it easy though.
I woke up the next day (today) literally feeling like a new woman. When I went for a wee in the night it was strangely eerie in the house without the familiar rattle of my chest. In the morning, I left something upstairs and casually went back up to fetch it, rather than thinking – ‘I’ll make do without it’. I ran a few errands and went for an appointment, I picked the kids up from school. I was out and about, being me, living my life, relishing in the winter sun and the mundane. I was literally gulping in the oxygen. Don’t ever underestimate the importance of that stuff.
I’m definitely better out than in and the same goes for the yellow/brown gloop.
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.