A little bit about the impact of chemotherapy.
Having resigned myself to the idea that this entire process would always feel too slow, full of too much waiting - for results, for treatment, for answers - chemo seemed to happen really quickly: more quickly than I was prepared for.
I had my eggs harvested on the Wednesday, met my oncologist for the first time on the Monday, and my chemo started that Friday.
My Oncologist is Dr Epurescu. He has a strong accent that I cannot place and an eccentric air. He wears glasses patterned in a kaleidoscope of colour, and carries a dry sense of humour that errs on offensive. No, maybe that’s too harsh; after all, I have only met the man once.
He reads through my notes as though he’s never seen them before.
“14 lymph nodes” he mumbles to himself. “That is quite a lot...”
Words drift past me and despite the list of questions I grasp in my hands, I feel a gibbering mess, unable to articulate anything that I want to say. I attempt to eke out an explanation of my histology results from him and fail somehow.
“Did your surgeon not explain this to you?” he demands.
I try to explain how little I’d seen my surgeon; how he’d breezed in and out for a few seconds at a time during my recovery, leaving me feeling insubstantial and unimportant.
“You should have been more insistent! You’re a teacher for goodness sake!” He cries incredulously.
And there it is again: that same wave of inadequacy I have felt time and time again. Throughout this entire circus I have felt all too aware that due to an overstretched, underfunded and oversubscribed NHS, I am just one of many hospital numbers. Being not very confrontational in nature has left me side-lined and forgotten so many times; I even get bullied by people who know and care about me; in an attempt to mother they insist that I MUST make ‘them’ listen, I MUST stand up for myself. It’s never as easy as that though – in the moment, in these rushed consultations where watches are continuously glanced at and there are so many other patients to see, so many other places to be.
And I feel a bit cheated. I have read other peoples’ stories – they talk so confidently about the respect and admiration they felt for their consultants; how safe they made them feel, how reassured. Not once have my survival rates been discussed; not once has anyone mentioned my long term outlook.
“You’ll get to know your oncologist really well” my friend Anna from Australia assured me. But right then, in that cramped consultancy room, I knew that I wouldn’t.
“So we need to start you on some pretty intensive chemo,” Dr Epurescu continues, not wasting a minute.
He questions me about my time with fertility.
“You only got 3 eggs?” He asks quizzically, making what had felt a triumph a few days ago, seem just another failure to add to my list.
“You must not get pregnant,” he goes on. “These drugs will certainly harm a baby and you will need to wait 2-3 years to start your family.”
And then I am crying. I haven’t cried that much through this; not really. Not properly. Not as much as I thought I would. But when I do, it comes without warning, in great shuddering heaves and without any control…and only ever in situations where it doesn’t seem appropriate, where there isn’t time or space. So instead of letting the tears fall, I find myself apologising and trying to make them stop.
I learn that I will be on a regime called Capox, which is used to treat advanced bowel cancer. It is primarily made up of a combination of two different chemotherapy drugs (Oxaliplatin and Capecitabine) and a short course of steroids, given over a 21 day cycle.
On day one of my cycle I will be given Oxaliplatin intravenously at the chemotherapy day unit. It kills cancer cells by halting cell division; it damages the DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. Oxaliplatin focuses on the resting phase of the cell cycle.
This is followed by 14 days of Capecitabine, which is taken orally in tablet form. It works by blocking cells from dividing during the active phase of the cell cycle.
I am given some reading to take away including a list of side effects that goes on for days. Sadly, chemotherapy is unable to tell the difference between cancerous cells and healthy, quickly dividing cells that are found in our blood, mouth, stomach, bowel, skin and hair follicles.
"5% off patients will have permanent damage to the nerves in their fingers and toes" I am told.
I’m glad Steve is there as my fatalistic brain heard 95%.
"When will it start?" I ask.
"Within the next 2 weeks".
3 days later I get a phone call from a private number. I am on the bus home from my first ever ‘pre-chemo’ blood test at the hospital and am surprised to hear a vaguely familiar voice on the other end.
“Is that Suze? It’s Flo….with Pride?”
And I am confused. A lifetime ago, Flo and I had kept our horses at the same yard. Why would Flo be phoning me? I had really liked Flo, and we are friends on Facebook but I hadn’t seen or spoken to her in years.
“I work at the Weybourne Unit…we need you to start your treatment tomorrow.”
“But my tea party is Sunday” I mumble (see Part 6 of my blog for more about my tea party). “My friends have planned it…they’ve worked so hard.”
“Suze, we really need you to start now…”
So I sigh and agree. I will be in at 2pm the next day. Just like that.
I get off the bus in a daze. The street is full of shoppers but I don’t really see them. I phone Steve outside Poundland because I don’t really know what to do. I feel a bit panicky. My chest hurts.
“It’s fine,” he assures me. “Just a bit sooner than you’d thought. You’ve got this.”
And it is sooner than I’d thought. Too soon; all too quick now. I am scared: scared of the unknown.
I have read all the booklets and leaflets and marked out important bits with sticky notes so I can find them again quickly. I have listened to fellow bowlie, Deborah James’, book ‘F**k You Cancer’ on Audible. I have listened to ‘You, me and the Big C’ podcasts. I’ve been walked through what I might experience with Anna, back home in Australia who went through the same treatment last year…but still it seems too surreal, too intangible.
Before we experience it ourselves, or support someone else through it, all we know of chemo is the romanticised version presented on TV: of bald heads, concentration-camp-like emaciation, sickness, ghostliness. I was not that person and I didn’t want to be that person.
I awoke early the next day and wandered through our little house in a daze. I traced my fingers across our belongings, our piano, our pictures: our life. I caressed the leaves of our plants; I massaged the ears of our dog between my thumb and forefinger. I meandered through the nearby streets; I took the dog to the water meadow and watched the light through the clouds. I cooked a stew ready for later, when I doubted either of us would feel much like cooking. And through all this, I tried to ignore the hands on the clock stealing onwards. It was Valentine’s Day.
My dog, Roo, and I exploring the water meadow.
The Weybourne Day Unit tries hard not to be another hospital ward. There are stencils of plants on the walls and bright photographic murals of Norfolk scenes.
My nurse for that day greets me warmly and before I know it I am crying again. My fourth proper cry since diagnosis. And I am apologising, just like last time, as the breath heaves in my chest. Again Steve squeezes my knee.
“I don’t know why I’m crying’ I sob. Only I do: I am scared.
I tell my nurse I am also worried by yet another cannula – I explain how, at the Bourne Fertility Clinic they were unable to find a vein, and their attempts left me bruised and sore. I explain how, when I was in hospital my cannula failed and I had sat, on a particularly understaffed and busy shift, watching my arm expand with fluid. I don’t tell her that I have also read about the possible vein pain Oxaliplatin can cause.
And oh how I wished I had kept my mouth shut. In an attempt to ease my worries the nurse pokes and prods me continuously to check and reassure me that everything is ok: I try hard not to wince with each jab.
Eventually she leaves us to it; we settle down and work our way through a book of crosswords whilst the machine connected to me clicks away to itself, slowly releasing measured doses of toxicity into my body. Steve reads out clues to me and together we muse over possible answers and question each other’s spellings. We drink tea and eat the complimentary squashed fly biscuits (I will never be able to eat these again).
After about an hour my arm starts to twitch – electric pulses channel down my arm.
“Steve…” I am panicking. “Get help..”
And from then the pain is merciless. My arm begins to not just ache but throb. I feel sick. The nurse slows my treatment, and stops it as often as she can in an attempt to ease my discomfort, but nothing really works. Eventually we decide to push on through as best we can. The unit closes at six and it has already gone ten past.
Oxaliplatin, or Oxali as it is more affectionately known, is notorious for causing vein pain – they don’t really know why. Eventually I will muse over how we, me and my new fellow ‘bowlies’, begin to refer to our drugs by these little nicknames as though, despite how ill they make us, despite how they hurt us, they’re a friend. And I guess they are: they’re saving our lives.
The nurse prepares me well for the cold sensitivity that will kick in well before I leave the day unit. I have to take Steve to the toilet to turn on the taps and push the handles because to touch them hurts my hands. The pain also makes me feel both unsteady and incredibly vulnerable: I need him to shield me from the world. I can barely do up my own jeans.
I eventually leave the ward wrapped in scarves and gloves and woolly hats; my jacket is zipped up beyond my nose. Even through these layers I feel the icicles cut the back of my throat as I inhale my first breath of outside air.
Rugged up to protect against the cold sensitivity.
It’s hard to put the cold sensitivity into words in a way that will help people understand; I mean I had read up on all possible side effects obsessively and I still didn’t really know what to expect. It is also so multi-faceted and inter-linked to neuropathy that a description of one element doesn’t help in any way to explain another.
But I will try.
Think about a time when you have held something ice cold, from the freezer perhaps, or made a snowball without gloves on…after a while your fingers start to hurt and you lose your dexterity. Well, that’s part of it, but it hits you with very mundane items, or sometimes when you’re not handling anything at all: salt and pepper shakers, handrails and bannisters, door knobs and handles, cutlery, bowls…all feel like blocks of ice: the pain is instant and the longer you ignore it, the more painful it gets. You cannot handle anything from the fridge and you cannot chop vegetables. You have to put, not only slippers and dressing gown on to nip for a quick wee in the night, but gloves too.
It’s not just your hands that the cold effects either, but your throat and your eyes. In the first days of a new cycle you cannot eat or drink anything cold because it sends your throat in to spasms. Even days later you cannot drink without feeling as though something is stuck in your throat which in turn leads to dehydration: I honestly feel too nauseous to stomach any more hot squash but I am just so so thirsty. I experiment with herbal teas; these go down a lot better – but they’re not thirst quenching. I have dreams of glugging down pint after pint of cool liquid, only to awake feeling even more thirsty than before.
It’s also painful to eat: hot or cold. The first few bites of anything is agony. The sensation is similar to eating something really sour, but worse; the pain radiates through your jaw, but you have to chew through it or starve. It’s better if you take very small bites, but sometimes, when I am starting to feel a bit better, I forget and tuck into something with too much enthusiasm: it makes me cry out and my jaw lock.
I get the same sensation when I brush my teeth, and in my eyes when I cry. During my first cycle there were days when I couldn’t bear to brush my teeth at all.
I also experience a strange feeling in my lips on and off – I guess it’s neuropathy; it makes talking hard: I cannot control them at all: like I’ve had a stroke.
At home that first night, the pain my arm is unbearable. Steve won’t let me take the liquid morphine stashed in the cupboard left over from my post-surgery infection. I do not sleep.
On day 2 of my first cycle I mostly feel exhausted and sore, but hopeful that I might be able to get along to my tea party the next day after all - for a little while at least. In the afternoon I even attempt a dog walk.
We rug me up from head to toe and wander gently up the road – I cannot walk too fast as I become breathless. Then, as we turn the next corner, into the wind, my eyes begin to spasm.
I’d stopped and asked Steve to take a picture of me and Roo - proof that we’d made it out of the house – and I can’t even hold my eyes open to pose. At first we laugh, but then I start to panic.
“No, Steve, really. I can’t see. I can’t see. I can’t even open my eyes.”
I am scared. Nobody told me this would happen.
I am lead me home with my eyes shut, feeling completely useless; a failure, again.
On Sunday I awake to nausea and my hopes of making the tea party are killed.
My first vomit is followed by a visit from Steve’s parents, delivering goodies from the tea party that I had missed. Steve was in the bath so I had just left it in the bucket, unable to move…
‘There’s sick’ I mumble at them.
The next vomit hits later in the night, awoken within me by the movement of heading downstairs for a wee. I leave undigested, plain macaroni in the sink. A present for Steve to find in the morning.
On day 4 I sleep. And sleep. And sleep.
I cannot wash or dress myself. Steve massages shampoo into my hair as I sit slumped in a chair placed precariously in the bath tub. He patiently guides my legs into clean pants, my arms into fresh pyjamas.
“I don’t think I can do this” I mumble.
He wraps me in his arms.
“Of course you can” he enthuses – ever optimistic, always looking for the positive.
Eventually the nausea wanes…just in time for the diarrhoea to arrive. Initially it hits me every six hours - like clockwork: it’s violent and unpleasant and leaves me exhausted and even more dehydrated.
By day 8, the worst has passed but my body is wrecked. I am a couple of kilos lighter and just doing small tasks around the house leaves me breathless and depleted. Although I can now bath independently, it takes a good hour; resting in between each step. I sit naked on the couch, unable to summon the energy to complete the next phase.
Even in my off-week (I get six days a cycle without any drugs to take – time for my body to recover and recuperate before the next onslaught) I yo-yo from feeling well, to feeling fatigued and fighting off a cold. I get a cold sore, an ulcer on my tongue and thrush: just in time to return to the Weybourne Day Unit for cycle 2.
Luckily, since my last visit I have had a PICC line fitted. A PICC line, or a Peripherally Inserted Central Catheter is basically a very thin tube that is inserted into a vein in your arm, running directly into an artery at the top of the heart; it will stay there for the duration of my treatment. It means that now, the drug will bypass the sensitive veins in my arm completely and hopefully allow me to receive my treatment pain (and cannula) free.
I check in and sit waiting to be called through. I can already feel the panic rising inside me. Last time I could blame the unknown for making me feel this way – this time it is the knowing of what will come.
The nurse cleans and flushes my PICC line and the panic finally hits: the tears fall and yet again I am finding myself trying to contain my heaving breaths, trying to hold in the tears and the fear. The nurse closes the curtains around me. She puts her hand on one knee, Steve the other.
“I’m sorry,” I sob again and again. “I don’t know what’s wrong with me.” Only I do.
Eventually the nurse deems me calm enough to begin my treatment and I wait expectantly for the pain. But, as the machine clicks and spurts beside me it does not come. Thankyou PICC line. I could not have faced that again. My arm still hurts today, 3 cycles later, from that first treatment.
I do have a reaction though. It starts with my voice; I begin to croak and as time goes on it gets harder to speak. It feels as though there is something stuck in my throat that no amount of coughing will shift. Soon the neuropathy kicks in to my lips and fingers too and I struggle to use them. And it is this that slows down my treatment this time: it must be stopped to avoid long term damage. The nurse wraps a heat pad across my neck and chest and force feeds me hot squash after hot squash to warm my throat and reduce the reaction. Eventually she is satisfied that it is safe to restart.
This time I feel nauseous before I’ve even left the hospital. Maybe the PICC line gets the toxins into my system faster, who knows. I cannot eat the stew I had prepared that morning – even the thought of it makes me wretch. Plain pasta is all I can take. Cruelly, eating both helps and hinders the nausea: the thought of food turns my stomach, but having nothing in it makes it worse.
The vomit starts that night too. Every meal for two days comes back up: my challenge is to sit still long enough for the steroids and capecitabine (that I must take with food) to be absorbed before it does. The anti-sickness meds do nothing.
For about 4 days I cannot look at my phone or watch TV. I can barely talk. I just lie on the sofa with my eyes shut. On day 3 I sleep for nearly 24 hours.
And just like last time, as the worst of the nausea passes, the diarrhoea kicks in. Only this time, just like the nausea, it’s worse. So much worse. Not at first. At first it follows the same pattern – every 6 hours like clockwork. And then it tricks me: I awake on Friday (day 8) to a nearly-solid ‘movement’, and head back to hospital for my weekly PICC flush. (Annoyingly I have been experiencing some pain in the centre of my chest and an X ray is ordered as well, to check the PICC’s positioning – it is slightly too far into the top of my heart and needs moving). I am exhausted by this expedition, but my bum seems to be behaving itself…until about midnight when the diarrhoea returns with a vengeance.
Awaiting my X-ray.
I am up again and again and again through the night and into the morning. It is even more violent than last time and I am wrecked.
Eventually I ring the Acute Oncology Service.
“I don’t want to come to hospital” I blurt down the phone.
By this point Corona has reared its head and we are all starting to get worried. I had been told the day before that Steve would no longer be able to accompany me to my hospital appointments which was making me feel quite anxious. The hospital seems a dangerous place for people like me.
“We won’t make you come to hospital” I am reassured and told it’s time to take some Imodium.
And somehow, by Monday I actually feel really well. Better than I remember feeling in a very long time. The cold sensitivity hasn’t seemed so bad either – but perhaps I had just been too ill to be that hindered by it. I feel so well in fact, that I download the Couch to 5k app and give my first run since before surgery a go.
And before I know it, it’s time for cycle 3.
I am really scared again, especially because this time I will face it without Steve there.
This time, when I arrive at the unit, everything has changed. I have to wait in the car till they are ready for me. When I check in my temperature is taken and I am asked a series of questions about Covid-19 symptoms. I am given a mask and watched over whilst I wash my hands. The unit is much quieter without our support teams.
But somehow, despite the strange conditions, the mood of the nurses lifts me – perhaps they are trying hard to compensate, knowing we are now all sat there alone and scared.
My nurse for today checks my notes.
“You’re far too young to be going through this!” she exclaims.
I can only agree. I am the youngest patient there, as I have been each cycle so far.
Annoyingly, despite how hard the nurse tries to counteract it – blankets, scarves, multiple heat pads, hot squashes from the outset – I have another reaction and my treatment is stopped again.
"But it’s better than last time?" she smiles at me eagerly. I agree, as I don’t want her to feel bad. It’s not.
She lectures me about my blood results – mostly good, but showing that I am dehydrated. My blood pressure is also low, but that’s normal for me. She explains how these two things will be making my nausea worse, but arranges for stronger anti-sickness meds – “but you can only have 3 day’s worth. They will make you constipated and that’s bad.”
In the next breath she lectures me about medicating more effectively against the diarrhoea, explaining the consequences of not doing so. She makes me promise. And I do.
Steve comes to collect me and as we drive home we muse over what this cycle may bring.
When we pull up outside our house, my neuropathy is so bad I cannot get out of the car on my own. My right leg has stopped working completely. And we laugh together as we try to half drag, half carry me inside. A few weeks ago, this would have made me panic.
And thanks to the new meds, the nausea is much improved. Not gone, but so much more manageable. Sadly though, the cold sensitivity is much much worse – this time it is completely debilitating. And because I am not as nauseous I am bored – due to of the pain in my hands I cannot type on my lap top or use my phone; I cannot work on the cross stitch I started back in September when I was diagnosed; I cannot even make myself something to eat without huge discomfort and effort. And even though I’m not vomiting, I still feel too ill to do anything – leaving the couch is hard work and I am so dehydrated. I long to be able to properly glug down a cold fizzy drink – like I do in my dreams.
It continues much longer than before too. Even as I start to feel well I have to go for walks with gloves on despite the warmer temperatures. I cannot butter myself a crumpet as it requires keeping my gloves off for too long. And when I do, I have to sit with my hands under my bum to warm them up enough to be able to eat the ruddy thing. Eventually I try to prepare meals slumped on a stool, to counter the fatigue, with rubber gloves over my woollen ones to counter the cold. Even still, the pain kicks in at some point; I try to ignore it, or warm them up under the tap knowing it will only come back.
Cooking on my stool and my multiple-gloved hands required for chopping veg.
The fatigue is haunting this cycle too: this insane exhaustion that hurts inside your chest. I am often breathless, and any housework is followed by a long sit down to recover.
And don't even start me on the diarrhea. Up until this cycle I had believed Oxali to be the more evil of the two drugs; but I am starting to realise that even though Capecitabine seems less offensive - being tablet form opposed to intravenous - it is far from it. This cycle the diarrhea (linked to Capecitabine) is so bad that the antispasmodics do not work for a couple of days; the initial 6 hourly attacks experienced during my previous cycles are completely bypassed and this time the flow is constant. The vaseline that hasn't been required since my colonoscopy all those months ago is now paramount to getting through.
Then I begin to experience pain in my feet. I don’t realise it is related to the chemo at first. It feels like a pressure sore or a blister: like walking on stony ground in bare feet. I wonder whether the pile of my big fluffy socks I am wearing to keep warm is too rough, rubbing against the fleshy parts of my feet. They are red and swollen. I self-diagnose hand-foot syndrome - another common side effect of Capecitabine as it affects the growth of skin cells and small red blood vessels.
Finally, I cave in and phone my oncology nurse – she explains that it sounds as though the accumulative effects of chemo are starting to come in to play – most of these side-effects will now only get worse. There is nothing she can offer me for the cold, except advise me to keep warm…but we discuss the possibility of reducing my Capecitabine next time to help with the pain in my feet: I am to monitor them for the rest of the cycle and discuss it again at my pre-cycle-4 teleclinic.
And I am sad about what this means. My excitement last cycle, thinking that actually I could get back to some sort of normalcy was short lived.
In an attempt to stay active despite my sore feet we headed out on the bikes for the first time since my surgery.
And here we are, Day 19 of cycle 3. Cycle 4 will start on Friday. When I started writing this I was still on Day 14 (it has been tough writing about my chemo, because revisiting it brings back a lot of the nauseous sensations that accompany the memories, so I can only write for a short time each day). The next day would have been my last day of Capecitabine and I was really hoping that the pain in my feet would dissipate so I could maybe enjoy some activity over my six chemo-free days – it didn’t. Not enough.
My cold sensitivity is now improved but not gone completely. And I know that the next few days will both fly by and be dominated by getting prepared for the next round – blood tests, teleclinics; cleaning parts of the house Steve won’t get to whilst looking after me; trying to get in some exercise, knowing that the next 8-10 days will be incredibly sedentary; publishing this post, as soon I will be too ill again to look at a screen; researching what box set to watch whilst I recover. I will wonder about what new, strange and wonderful things these drugs will make my body do next and what exactly the accumulative effect of chemo will make worse this time...and questioning, like I do at least once every cycle, whether I am strong enough to get keep doing this.