Ever since being diagnosed with triple negative breast cancer my friends and family have said I should write a blog or a journal. Trouble is I didn’t feel like writing. Updating everyone, answering and writing texts and WhatsApps was writing enough. Especially on the first lots of chemo that made my eyes go blurry and meant I had to wear dark glasses (even inside). Turns out one of the chemotherapy drugs I had in my first 18 weeks of treatment (Cyclophosphamide) is derived from mustard gas, so I guess that’s why.
I’m back on chemo again, but its more manageable this time. Throughout this experience I’ve been scribbling down odd thoughts in notebooks, scraps of paper and WhatsApps. The wonderful and growing number of people who are supporting me and my family are keen to hear how I am doing, so with some encouragement and an experimental attitude I thought I’d give this blogging lark a go.
I hope it makes you stop for a minute and embrace your life right now. I’d love you to have real conversations with the people who matter about the stuff that matters to them and you. Maybe you’ll look at the wonder of the natural world or be compelled to do what you’ve always wanted to do.
Maybe it won’t be for you, that’s fine too. If you don’t enjoy reading a piece move on to another or come back another day, don’t endure it. If you do get something from it I’d love your feedback. Feel free to follow and share the the blog and/or my twitter and instagram pages.
Click on the links for more information about why ‘The Cancer Gap”? or how I started writing poetry or my poems. Alternatively, just scroll down to the beginning of the blog or look in the menu on the top left of the screen. Have a nosey around, you’ll work it out.
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.
“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.
Yesterday I finally got my CT results from 3 weeks ago. They are stable. But what does that actually mean? I don’t know how to feel about that word. It doesn’t excite or sadden me. It’s neutral. I feel like I’m in a holding circle outside Heathrow, not able to land or fly off.
‘Stable’ definitely doesn’t ooze positivity. A political situation in a far off land that becomes ‘stable’ doesn’t have you rushing to book your next holiday there. Stable pension funds or economies are safer, but not a cause for celebration or a spend up. Riding a bike with stabilisers is an interim phase between falling off and riding properly.
I guess I’d rather not be falling off.
Pretty much every appointment I’ve had in the last 20 months has been bad news or unfolding bad news or seemingly positive news that belied my clinical representation or turned out to be bad news due to a scanning error.
Let’s just say I brace myself for bad news. I prepare for it, I seek to interrogate and understand it. I then accept it and move on to forming or executing the next plan of attack. I’m a problem solver by nature and profession. I’m an action junkie. I don’t know how to be around stable? I’m not organising a party and I’m not researching alternatives or mobilising the NHS. It feels indifferent and passive and I don’t like it!
My RECIST (response evaluation criteria in solid tumours) report shows a 1mm reduction in the size of my target lesion (the largest lymph node in my contralateral axilla). On 12th Sept scan it measured 19mm and on 19th Nov it measures 18mm. It’s going in the right direction, not enough for partial response (PR) to be classified, but not enough for progressive disease (PD) either. But here is the rub. That same 12 Sept scan was originally measured and reported by my previous hospital and the lymph node in question was reported as 16mm.
Same raw data, different reporter.
So based on the original report I have a 2mm growth. In addition the same node was reported twice in the summer as being complete response to treatment (CR) and it measured 0mm! Yet I could still feel it and it felt like it was growing (and it was). See why I don’t trust scans!
Now let’s go back to clinical evidence – or in lay terms – eyes and fingers. The lymph node in question feels smaller than it was when I started this second trial (that’s good right?), but it also feels like it has coalesced with the other enlarged lymph nodes to form a skinnier (technical term) yet longer mass. So what are they actually measuring?
On top of all of this my skin metastasises are growing. I have 3 reasonably significant ones and two tiny ones that I expect no one will acknowledge, but I know they feel exactly how the others did at the start. The biggest skin met has been biopsied and is definitely triple negative breast cancer cells. And yet I had a private ultrasound of my chest wall last week and the monographer said ‘there is nothing there’! I had to stop the sonographer and say I presume you mean on the scan as you can plainly see and feel them on my chest! Of course that’s what she meant, but it made me feel like I was making it up! Even my 7 year old says ‘Mummy is that another cancer lump?’ And ‘that one is getting bigger isn’t it Mummy?’ How do I deal with ‘stable’ in this context? Even my daughter wants to know when I will switch to a treatment that actually works!
She doesn’t get ‘stable’ either.
A loved one in intensive care who is reported as stable doesn’t fill you with joy. You take a breath, you might be relieved, but you aren’t out of the woods. I guess a terminal cancer patient is never ‘out of the woods’, so maybe ‘stable’ is as good as it gets. I’m restless, I’m impatient, I get it.
In my case ‘stable’ is pretty hopeful. Dying’s on hold for a bit longer. Christmas can be ‘stable’ not disrupted by new treatment or adverse reactions.
It’s still too passive for me. But I think that’s my nature. I perhaps need to turn off my ‘high alert’ button and give my para sympathetic system a rest over Christmas. Changing treatment over the festive period is never ideal (I did that last Christmas), so perhaps I need to take that very deep breath and try and ignore my sixth sense for another cycle of this wretched chemo.
I’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.
Why do people constantly say this to you? Mostly I do look well. I make an effort with skincare and a bit of make up. I have a decent hair cut (as much as you can with post chemo curly regrowth). Despite my distorted and ever changing shape I try to wear clothes that make me feel good (balance of comfort, fit and style). For all intents and purposes I do look well. I am well.
Yet I have terminal breast cancer. I use that deliberately jarring word because unless I throw myself under a proverbial bus it is the advanced, secondary, stage 4, terminal, metastasised breast cancer cells that will kill me. (Although I have had a brief dalliance with a pulmonary embolism, but that’s a story for another day).
So, what does someone with stage 4 breast cancer look like? Even a year ago when I had stage 3 I didn’t think stage 4 would look and feel like this. This is why people sometimes write you off or feel pity for you when you have advanced cancer – they think you will look and act ill. I think it’s why they say [but] ‘you look so well’ in a surprised tone. They don’t fit the stereotype of someone with advanced cancer on their third series of chemotherapy and 7th chemo agent. It’s ignorance, maybe denial. Like me they think a stage 4er would be too ill to do most things.
I’m still doing my upmost to grab life with both hands and be normal. I’m also on a quest to give people a perspective of what it is like to have to wake up every morning and face another day of tablets, treatment, appointments, fights to be heard and taken seriously.
The fight for your life every day.
The cancer is one thing, but the system is another. My daily fight is like this:
1) The system (disjointed, stretched past breaking point NHS system, drug company protocol, NICE guidelines, insurance company, the postcode lottery) 2) People’s ignorance, attitude and outdated stereotypical view of cancer 3) Treatment side effects (historic, cumulative and current) 4) My own demons and expectations about what I can do 5) The cancer Once I’ve done that there’s the normal hectic life of a young family and that’s before the Christmas madness.
Despite this pile of things to battle I still want to enjoy my life and contribute to society. I crave normal, not extraordinary. I still want to help out on the school fireworks ‘glow store’ even though I couldn’t officially commit and just jumped on, on the night. I still want to do the garden, swim, cook, walk and work. Yes work.
I feel alive when I work. I feel like me. And that’s actually all you want to feel when you are fighting for your life. I was born to work. I love it. The week before last I did a piece of work designing all the facilitation sessions for a conference for 250 healthcare professionals. I trained the facilitators and made small talk through a sit down dinner. I smiled and offered paracetamol to the man with a cold and a headache. I did a good job. I contributed. I used my busy brain to help some other people and I earned some money. I was delighted to have the opportunity.
I checked out of the hotel the morning after and did battle with flooded rail lines. I got sent to Coventry (literally). I went around the problem (that’s what I do) and got home to dump my bags. I then turned around and got a train to London for yet another hospital appointment.
And you know what they said?
‘You look so well’
And I did. Yet, I was tired. My feet and hands were red and stinging from chemo induced side effects (apparently it’s the drug leeching out your capillaries) . I didn’t have enough oxygen from my low red blood count to climb stairs or walk far, my lymphoedema arm was enormous and heavy (32% bigger than my left arm). I could no longer get my coat on my arm. But I was still smiling and still keeping on keeping on.
It is a total paradox, on the one hand I want to be treated normally I am still me after all. On the other I am struggling mentally and physically to hold it together. I want and need to be able to park nearer or to have a seat on the tube, yet I look well and I don’t want special treatment. I am multi faceted and a contradiction.
I think I need to be kinder to myself. To give in to more help, so that I can get home from a whole day of hospital appointments in London and still have enough energy to help with the Roman project and read bedtime stories.
I suppose what I’m saying is I want people with cancer to not be marginalised by society because they don’t fit the mould of sick or well. Like me these people have much to contribute, but equally we need a hand with a few other things so we can keep doing so!
I want to be treated to live, not live to be treated.