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
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.
“Not all of us can do great things. But we can all do small things with great love”
In my experience of an advance cancer diagnosis people don’t really know what to say. Questions to understand it seem insensitive and risky as you have to be prepared for the answers. Words of reassurance are tricky. A lot of people opt for the head cocked and pitiful smile when they see you or just plain avoidance. However, there are a pretty large and surprising number of people who opt for action.
As an action junkie I relate to this as it is what I have done in similar situations. When you feel devoid of words, action speak volumes. Sometimes you just have to do something.
Back in May 2018 I was astonished with the direct and decisive action people from all areas of my life took. The night I got home from receiving the diagnosis one of my sister’s just turned up despite being told I was fine and didn’t need her to come. Obviously, I was about as far away from fine as you can be, but I had to pick the kids up, feed them and get them to bed without falling apart. We didn’t tell them straight away. We didn’t know what to say. We hadn’t even told immediate family. We couldn’t find the words. We were in a trance like state. In fact we had a prior appointment with a will writer to do our LPAs and update our wills. So that is what we did on the evening of the day I was diagnosed with invasive advanced breast cancer.
You can’t make these things up.
In a film that would seem ridiculous, but in fact it was what we did that evening. It turned out to be a very practical thing to do. Having one of my sister’s there was a blessing as we were able to have difficult conversations about guardianship. Our original wills were no longer practical given the very real possibility that at least one of us would be taken too soon.
My sister also took on the unenviable task of telling the rest of the family. After that, the wheels were in motion, everyone went into action mode.
Within days of diagnosis, my sister said, ‘You’re going to need a big freezer’ I replied ‘what for?’ She said ‘all the meals’.
She had inside knowledge from friends with a cancer diagnosis. It was a matter of days before my Dad turned up with a freezer and my extended family brought home cooked freezable food.
But that wasn’t what my sister meant.
Nothing could prepare me for the deluge of home cooked meals that would turn up on my doorstep as word got around. I’ve joked before about the number of lasagnes, but not one went to waste. Every casserole, spag bol, curry, cake, soup, biscuit, flapjack, crumble and many more dishes of love were gratefully received. They nourished us through those early trance-like days. The blur of appointments and scans with news getting worse by the day. We put one foot in front of the other and one home cooked meal in the oven and we got through it until we could think again.
We are still lucky enough to receive meals today and they are all a gift of time. Time that we don’t have to think about preparing a meal. Time we can spend with each other or on tasks that seem to take so much longer now. It is not something we expect or always need, but it always makes us feel cared for and loved. One person in particular has never stopped giving us meals. She’s a wonderful cook and even has a drawer named after her in our freezer. There’s always something good in that drawer. We call her our ‘Cancer Angel’ and she is a very special woman who I have got to know in a deeper way since being diagnosed.
As an aside, my then 6 year old, found all the meals confusing. She asked me if we were poor, now I had cancer. I was perplexed. Where had this come from? But soon I understood when she elaborated “but Mummy you always say ‘you have to go to school, Mummy and Daddy have to go to work to earn money to put food on the table and a roof over our heads’ and you haven’t been to work as much and people are already bringing us food”.
It all made sense from a 6 year old’s perspective.
All sorts of kindness poured onto our doorstep and through our letterbox. People and gifts showed up in all sorts of guises from all corners of our life and the world. I was and continue to be truly humbled by peoples’s kindness. Amongst other things, we have been lucky enough to receive flowers, beautiful, honestly written cards, poetry books, magazines, books, Chemo kits, fruit and veg, solid gold engraved lego brick, jewellery, good luck charms, bracelets, Christmas decorations, charms for good health, ice pillows (for night sweats), shawls (when my arm was too big for a coat) and just last night aloe vera socks for my peeling bleeding feet.
We also got several tomato plants and a courgette plant. One lot even arrived with its own grow bag. I loved planting these and enjoying the fruits of my labour all summer long. Reminding me of the thoughtfulness and kindness around me. Feeling a sense of satisfaction when picking the fruit and making soup. The simplicity of nourishment. Overall we felt the power of kindness and community that can easily be forgotten or taken for granted in our busy and overly digital world. The simple gifts of kindness, the offers of help, lifts to appointments, walking companions, sourcing of outfits for school plays and childcare are invaluable. They also made me feel alive and that I mattered to lots of people. The outpouring of love and the genuine, real conversations I have with people I’ve known for years and other strangers has been humbling and a joy. I was never one for small talk. I favour real conversations.
I have been toying with writing this post for a while. A sort of wide scale thank you note to everyone who has held us in their thoughts, sent us messages of encouragement, made us laugh and smile and held our hands through this unplanned and daunting journey.
I am a strong person and I still favour helping over being helped. I am delighted that so many people ignored this and just stepped in. For the last couple of years we have donated to charity rather than sending Christmas cards. I also commit to phoning people who live further afield and have a proper chat with them, reconnecting rather than sending a card year after year. This year I haven’t phoned very many people. It is not because I haven’t got the energy, but it’s because I am more connected with the people that matter than ever before. This is one of cancer’s blessings. It cuts out the crap and brings families and friends closer together. Or it certainly has in my case.
This time of the year seems like a good time to celebrate and think about the importance of community and kindness. I’ve alway been a fan of and contributor to both. It matters and it makes a difference. Merry Christmas and thank you.
“It’s not how much we you do, but how much love we put into what you do that counts”
I am not religious in the traditional way and yet despite Mother Teresa’s catholic origins her words resonate with my beliefs. Her desire to put common humanity above religious divisions is something we should all strive to do. I do believe in spirituality and the sense of connection to something bigger than ourselves. Sometimes that belief and way of being is the only thing that keeps me going. We all need to look beyond ourselves.
I’ve been a little quiet in the last few weeks. There’s been a lot going on in and outside my head. I’ve not known where to start and didn’t want to be trite.
It’s not appropriate to discuss it in detail here, but we have been having a long term battle with systems that support our children to understand themselves, be understood and reach their potential. This has been a focus long before my cancer diagnosis, but it just got a whole lot more urgent due to me feeling like time was running out to fight their corner. Let’s just say it was on my bucket list to get done.
One day I hope my kids will see that using my energy and our money for their diagnoses will have more longevity and impact than a trip to Disney. I am determined that they are aware of their emotional and practical needs, how to ask for help and support to create and take opportunities in life.
My mum was always there for me (and still is), she put me before herself or others on so many occasions. Sometimes this was intense and difficult for me and other people in our life, but above all I have had the privilege and knowledge that I am loved immensely and unconditionally. I want my children to know that too. Like my mum I want to help them in practical ways, but also to help them know themselves and be proud of who they are. I hope they have already felt that, and will remember it fondly with gratitude. I might not be there, so I want all the people around them to do their best to nurture and support them to be strong individuals.
Actually they already are strong individuals, but I want my diagnosis to make them both aware of their vulnerabilities and the power of resilience. I continue to believe that my attitude to cancer’s challenges will hopefully give them values and lessons that will endure long after I’m gone. I’ve also always believed that it takes a whole village to bring up a child and we need this now more than ever.
It’s one of the many reasons I am open about my journey. My broad and varied support team are as invaluable to us now as I hope they will be if and when I’m gone.
This post is taking a surprisingly sentimental direction.
I’m anxious about my CT results.
I’m waiting in clinic to see an oncologist. The path forward is a bit hazy at the moment. I don’t mind tough terrain, I just want to know the plan. I’m hoping with equal parts that the current chemo is not working and is working. If the latter, I stay on my current regime. The former continues the fight for immunotherapy or any treatment that slows the spread.
I’ve waited 3 weeks for these results and it’s been two months since my last scan results. A lot can change in that time.
Where am I now?
I’m now on the last day of Cycle 3 of Capecitabine. I’ve been on the oral tablets 14 days on and 7 off for 9 weeks. With multiple anti-sickness tabs and a strong routine around food, I’ve managed to keep them down. The other side effects are pretty grim. The skin on my hands and feet is red raw and swollen, peeling in places and inflamed.
My fine motor skills are being challenged as my finger prints are smoothed out and the fingertips are bolbus. This is further exasperated by lymphoedema on my right arm and a suspected DVT. My iPhone doesn’t recognise my fingers and even hitting the right keys and letters is a challenge. My feet are sore after walking or standing for too long and they are burning hot.
I’m not letting any of this stop me walking or typing, but it makes it more tiring. I’m annoyed with my failing body. In fact what I am annoyed with is the chemo is effecting me adversely, yet it doesn’t appear to be working.
I wrote in a previous poem that I’m happy to poison myself in the now to see more future. With each chemo that fails this journey seems more futile and the path ahead less clear.
You drew cartoon boobs when we first met, You marked me up with Sharpie, You were to the point and all set, I joked about stories for a dinner party,
Nipple callipers and sample silicon hidden in your case, Rolling back and forth between the private and NHS side, Driven by clinical need, patient outcomes and pace, Your work ethic and commitment cannot be denied.
I wish you’d had a magic wand not a scalpel, The scans seemed certain, but they lied, Meticulous precision could not conquer the way these cancer cells rule, We’re still keeping on; it’s one hell of a ride.
Months later I’m back, punch biopsy of my scar inside, Pathology confirmed what I always knew, I didn’t need the scientific view, No time for more surgery, more systematic treatment; more time to bide.
Started June 2019 when I found a tiny lump the size of a pin head in my mastectomy scar. I was reflecting on surgery.
People thought I was paranoid. They said It was scar tissue. I know my own body.
Finished in October 2019 when I returned to my original surgeon for his opinion; which confirmed mine.
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 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?
Have you ever noticed that when a news item becomes a bit more serious or drawn out it gets a logo on the BBC? The global economic downturn had one, the US Elections, the referendum etc. Brexit has had several, a made up name and it even got a dictionary entry! I’m clearly not that newsworthy, but as I am now about to enter into my 18th month of cancer treatment I thought it was time The Cancer Gap got a logo. So here it is.
The beady eyed of you will have noticed it at the top of the search bar or on social media.
I could have asked or paid one of my design colleagues or contacts to do this, but I thought I’d ask my friend who is teaching herself design. She loved working on something real. Or so she told me. She explored a few options and together we came up with this. She even dragged her IT husband into the task. This is just one of many examples I have of people in my community going above and beyond to help and to contribute somehow.
I thought I’d do this update now as its pretty slow getting all the eligibility scans in place for the trial protocol. It is only when I’m through this that they can confirm that I will be put on the trial.
For those of your following previous posts, the tiny maggot sized and coloured piece of me that was extracted with a punch biopsy a week or so ago turned out to be malignant. So that distinct shape, wasn’t scar tissue, fat necrosis or my paranoia, it was a mass of cancer cells that have grown from some microscopic cancer being left behind. This is why you always want clear margins, the bigger the better. Mine weren’t clear. Ever. So this is not a surprise.
I first felt the lump as a pin head (that’s when they thought I was a bit hyper vigilant or even paranoid) and now its the size of a sweetcorn kernel and is a adenocarcinoma (a cancer tumour made of glandular cells). They’ve sliced this little tiny maggot up into slithers like a cucumber into tiny rounds and put it on slides. They have tested it for hormone receptors. It has none. No targets for treatment. So as well as being a grade 3 tumour, it has 2 out of the 3 markers it needs to be classed as ‘triple negative’. The HER2 status (the third marker) takes another week or so and I’m sure it will be negative again. So it is the same Triple Negative Breast Cancer. This cancer can sometimes mutate to be HER2 positive, so we have to go through this motion. Once my tumour has finished its little trip around the labs of the south west of the UK, it (or another piece from one of the other tumours) will be put in some formalin and flown to the US or Switzerland. Whilst my body is pretty much grounded, little chopped off bits of me are able to travel passport and insurance free.
Invasive breast cancer is tricky. It starts small and undetectable and then eventually the cells join up to cause a lump you can actually feel. A lot of breast cancers are ‘ductal carcinomas in situ’ or DCIS and never become invasive. These are more like a boiled egg still in its shell, easier to cut around and remove. Whereas invasive cancer is more like scrambled or powdered war time egg or a Jackson Pollock painting.
One of those little microscopic bits has grown into something that is still not traceable on a ultrasound. I even sharpie-ed up the spot beforehand. The sonographer felt it with her hand, but the scan didn’t show it. The PET-CT and CT scans didn’t show it either as there is so much other activity going on around this place from the surgery, scar tissue and radioactivity damage. My surgeon said he always prefers physical examination for this kind of local reoccurrence.
‘Once again, the grope test wins over tech then, but I guess you can’t say that’.
My response to the surgeon.
Well, that got a little side tracked from talking about logos, but at least you are up to speed.
Tune into your intuition
If I could sign off with one thing it is this: don’t delay if you have symptoms or lumps you are not sure of. Don’t be paranoid, but get to know your body. You are so often the best judge of any changes or suspicious activity. Tune into your intuition.
I already have the mastectomy scars branding me a ‘breast cancer victim’. However, a little lump, like a logo could be a recognisable symbol of early cancer or re-occurrence. Its distinctive design, this time of cells, the malignant or benign deciding factor.
Either way, for me, it is always better to know and to act.