Chemo from the other side

In August, way back at the beginning, probably at a moment in time when I was unable to do much but weep at the mere thought of being entrapped in a chemotherapy regimen for the next five months without any solid expectations of what might transpire, someone said to me ‘she’s not going to die….she’ll be a very different person by the end of this, but she’s not going to die’.

(I’m starting to think we will all be somewhat altered.)

The problem with cancer though, is that it’s unpredictable. The reassurances you are given are based on averages, patterns and some semblance of the best possible outcome. Whilst Amanda’s treatment is going to plan and the outlook is currently favourable and I should be rejoicing, I have a thundercloud in my mind that I cannot seem to suppress.

Of course for the patient the treatment is hideous. But for those around it can be equally harrowing. It’s such an immersive experience. It makes you feel everything and the range of emotions can be so intense and incomprehensible - I don’t even know how to verbalise some of them. It makes me angry, enraged even; no… furious with the world.

In these later cycles, the unpredictability of the response pattern is less: we know which days will be the worst, which days will be slightly better, which foods will be off the menu and what the emotional rollercoaster will look like. I no longer worry about how to decompress her physical symptoms because I’ve got them, although getting the antidotes in her can sometimes present challenges! Instead, I now worry about my own turbulence. My utter irritability with doing it again and again. Picking her up and sticking her back together - a little bit worse each time - only to watch her fall apart and shatter into pieces more jagged than the last cataclysm. It’s torturous and in this cycle, my mentality is almost atrocious.

But I’m learning. Already I know life is too short, too fleeting, too precious. And so many material details just don’t matter. But beyond that I’m learning the importance of letting the thundercloud storm and then welcoming the sunshine and holding on to it tightly.

It’s only day two.

I promise to be better because we’ve been here a long time, and you need better ❤️‍🩹

Welcome to the Royal Marsden.

Blimey, it’s a bit grey here: the weather and the building are merging into one monotonous landscape! Still, the cafe serves a cheap breakfast, overly hot tea and there’s a certain vibrancy inside these hospital walls that you’d never expect from just observing from the outside.

The staff are chatty, helpful and incredibly happy!

PICC care and bloods are complete, and after a quick chat with our new Key Worker specialist nurse we are ready to examine the complimentary hot beverage machine and range of (slightly more luxurious looking) biscuits on offer in the private outpatient suite! Water even comes in cans here!

Our day trip through the Marsden one-stop-shop treatment package has begun……

I know…. I’ve been absent. We’ve all been on and off ill for weeks and it’s been exhausting….

*** *** ***

It’s week three and it’s Thursday. Technically it’s chemo-day. But this week we’re avoiding chemo.

Her blood counts are low. So low I had suspected they would delay the treatment regardless of our intentional absence. Today we would have had the answer on the bloods but as we aren’t there, the answers aren’t forthcoming.

It’s been somewhat contentious but we’ve finally made the leap to private care. Is it an upgrade? I’ll keep you posted! It took BUPA nearly five weeks to approve her treatment package and now it’s eventually signed off it feels like our universe has shifted. Once again everything will be new - hospital, oncologist, nursing team…. New treatment day… now planned for Tuesday!

Nonetheless, we’ve suddenly the luxury of an extra weekend on the right side. This could be a moment of celebration, but as it happens cycle 4 has been a bit brutal all round and today’s planned infusions felt all too soon anyway. She’s still stuck in the post-infusion exhaustion: not a black hole, but immeasurably tired. This cycle she’s made the decision to finally stop working. For all the quandaries in the previous cycles about when would be the right moment, it’s now overwhelmingly clear that finally it’s the right time and if anything, a little overdue.

With so many schedule changes underway in different realms, tomorrow marks the end of our current ‘chemo normal’. We’ll take this weekend for the ‘freebie’ it is and prepare for next week on Monday when another new dawn of ‘normal’ awaits us.

Cycle 5 - we are entering the final third.

Making up for lost kisses at bedtime when you’ve not seen your children since Saturday morning ….

The dawn has broken. She’s here. Alive and much happier, albeit still sleeping an epic eighteen hours a day….. but for short stints she’s coming back into the person we crave.

Keep on climbing sweetheart, perhaps tomorrow you’ll see them at both ends of the day ❤️

Monday. PICC care.

PICC care on day 5 post-infusion is a brutal business. Probably the worst day of the entire cycle for her and suddenly she has to be dressed, travel some 20 miles, amble her way across a hospital and have her PICC line cleaned and flushed; a nauseating ordeal in normal time, let alone in the void.

In the last few weeks, the line has become difficult. Sticky, almost like it’s starting to embed into the veins of the body. Back on Thursday before the infusions began, it had us all worried as there was no drawback of blood after the saline flushing. The nurse had Amanda practically jogging round the ward with her arms raised in an attempt to remedy the line. No joy. Eventually, three fast flowing syringes of saline down the tube later and it was working as it should. Given this recent experience, today I had my concerns that they’d be requesting a tango dance in the middle of ward from a patient who can barely muster the energy to say “ow”!

Still, thankfully all was well: the line is clear and the adhesions are clean, and, despite an exceptionally busy ward, the regular commentary about how the saline flush is like an instant hit of chlorine to the back of the throat and a repositioning of the butterfly clip on her skin, we were in and out in a record 23 minutes. Then again, our nurse was highly pragmatic and not one we’d had care from before - perhaps busy wards are her specialty?!

As we adjourned the hospital building, we considered the pace of the care. Fortunate really, considering the day. We’d barely been out the house an hour but home was calling. It’s still Monday: sleep is the only reprieve.

We’re not out of the dark yet. But in the far distance, I can see glimmers of the horizon. Perhaps by the time the sun has risen tomorrow, the early dawn will be breaking in our world.

To Tuesday: the beginning of the end of the awful.

🖤

And we are in. Or perhaps I should say “out”. She’s back in the void. Nearly 48hours into the blackout void and she’s slept for nearly 40 of them. She’s groggy, difficult to motivate and pill phobic. But most of all she’s tense. Her muscles have forgotten how to relax and she walks hunched like old age has suddenly overcome her.

Whilst every cycle is somewhat similar, every cycle is also different. In our case, the drug regime has been different in almost every one. This time, the dose of Carboplatin is higher. The cause is attributed to her overly performing kidney function: if the drug is filtered out of the body too fast it is less effective…. a higher dose to slow the filtration is the remedy.

It’s a tricky place to be held captive. Stronger doses equate to stronger side effects and (apparently) a stronger phobia of pills. With every cycle’s pill regime kicking off the day before the chemo, she’s on the edge of phobia before we even start the infusions. This cycle arrived and as she was given another three antiemetics pre-infusion she was exclaiming “I’ve taken nine pills today already…!” The complaining started early and it was only 10.30am. ‘Actually no darling, you’ve taken ten already…’ but at the risk of inciting her further I determined that this was a thought perhaps best left unsaid….what’s one more in the grand scheme of today anyway?! Now five days into the prolific pill regime that is the first week, and she’s almost begging for release.

Sleep is her biggest ally - the hours pass more peacefully and she is less tortured by the internal enraged storm that grips her mind and body in these early days post-infusion. All we can do is breathe deeply, surround her in an acropolis of remedial medicines and wait it out.

Sleep your way out of the dark sweetheart. We are waiting for you 🖤

Another epic fund raiser for Macmillan from superstar Gemma Tanner and her colleagues.

Chance to win in the raffle for everyone who enters!!! Click the link to enter 🤩

https://www.justgiving.com/page/roselands-nursery-1699298204660?utm_medium=fundraising&utm_content=page%2Froselands-nursery-1699298204660&utm_source=copyLink&utm_campaign=pfp-share&fbclid=IwAR2HYuQ-9GdIl8K0DEjkkWNV5_wVuDWD7DzI5YtwgnZa3k8BFZe18pr-0uw_aem_AUP_FTLX78yi81yzxaTTauB8psaJEAedlpNKgQzaexBxf0bTKCcQP3pdEGwBGaxRyco

This week we were gifted this amazing Magnesium Rescue package from Valérie, founder and owner of La Roche L’Abeille, perfect for easing stress and relaxing the body.

We look forward to feeling zen!

Thank you Valérie - apologies again for my outburst in the post office!!!



https://www.facebook.com/larochelabeille

Cycle four…. Normal working day eh sweetheart?

Phesgo is in, Docetaxel in progress, Carboplatin awaiting. A flowing stream of chemicals to the veins… And a flowing stream of electricity to the laptop…

All you need now is a Teams meeting!!

Whatever makes you feel normal darling 💙

Op-kikker !

Thank you Karen Tanner for a very froggy package 🐸

It’s actually official. We’ve reached the midway point in Amanda’s chemotherapy treatment. Three full cycles down. Three remaining. In some ways I feel as if we only started yesterday; in others it’s been a long haul to get to this point. But we are here!

This week we were fortunate enough to be upgraded in the queue for an ultrasound scan to check on the offending lumps. Going through chemo is a tough business and the potential of some much needed reassurance that the endurance of all this pain is actually worth it had us almost leaping down the telephone at the opportunity to come to the scan earlier.

We were not disappointed: complete response.

The sonographer looked and looked again. She even rechecked the original scans from the end of August to pinpoint the locations of where she should be hunting. Eventually she found the titanium clips, placed pre-chemo as markers for the tumours so the exact locations could be found again should they “melt” during the treatment. In the undulating grey landscape of the ultrasound, they stand out like shining stars.

The smaller, albeit more aggressive, tumour has melted - (I find it incredulous as to where it’s melting to……!). The larger tumour is significantly smaller and with her remaining three treatments, the sonographer and the oncologist are positive we will see a complete pathological response and no evidence of the tumours will remain after six full cycles. It’s actually incredulous. It’s a moment for wine!

Cycle four is imminent. But this time we aren’t quite so heartbroken as we enter it. Suddenly there is a light at the end of the far reaching tunnel.

Whilst we know we aren’t there yet - what lies beyond chemotherapy is still in-exact (surgery, radiotherapy, targeted HER treatment, hormone treatment….the schedule isn’t formalised until the results of the chemo and the surgery are complete) but we do know the chemo IS making a difference and just like that…..the world is a little less harsh than it was a few days ago.

It’s back to the steroids tomorrow sweetheart …. Best get your sleep in tonight ❤️

It’s chemo-cut time and Amanda’s not the only one under the scissors this time…….

Trick or treat?! 🎃 Happy Halloween!

Time to celebrate?? I think she took me at my word - literally!

The children came home yesterday from a half term week away and it’s been chaos ever since. All remnants of sanity have vanished… the house is louder than ever… balloons are flying, halloween costumes are under construction and for the non-chemo’d adults the alcohol is out…. Or so we thought…..

I’m not sure what antidote is appropriate for this in the morning given her previous experiences with alcohol in this process have been almost lethal….

All suggestions now welcome… be it murder or medicine……

At least she’s happy ❤️

We’re officially over a week in from cycle three and I think it’s almost time to celebrate. Whilst we aren’t technically exactly at the half way point of this gruelling regime, we’ve almost re-normalised from the effects of the last cycle. It’s miraculous and just a few days ago, I wouldn’t have said we’d be here so fast.

Way back at the start of the covid pandemic, affected individuals and health professionals were talking about covid recovery being erratic, irregular, even aberrant from other viruses. Patient recovery was individual and symptoms were personal despite the overarching experience being almost always disagreeable. In so many ways, recovery from chemotherapy is like recovery from covid in the early days. It isn’t linear. And it almost always isn’t agreeable.

It’s such a weird process. On first glance, there’s nothing subtle about it. It’s a nuclear bomb on a time delay. Once the infusions are done, you know you are on a one-way ticket. The well documented symptoms are always at the forefront of your mind… you look for them, mentally tick them off as they appear: the shaking, the nausea, the exhaustion… but look again.

The subtleties of chemotherapy don’t really hit you until you’ve witnessed a few cycles. She becomes extra grippy: physically and emotionally grippy. Her body is tense and her mind is easily locked in to an activity. We joke about her tense expressions like she’s taken on early riga-mortis but it’s an eerily real side effect. She catches herself in the mirror and wonders: “who is this person that mirrors my movements but doesn’t resemble the image I hold of myself”? Perhaps the cause is the steroids or perhaps it’s the drug toxicity which has created an internal inflammation storm. Every mucus membrane is upset by the inflammation: the entire gastrointestinal system in particular. Her veins become irritable and painful lumps appear in seemingly randomised locations and take several days to subside: according to our oncologist it’s Phlebitis (small vein thrombosis).

Still, as we enter week two of cycle three, I’m grateful the majority of the horrifying symptoms have abated. This cycle we are left with slight tingling fingers and skin welts - both new symptoms in our book. The tingling should abate some time after the end of cycle six (!!) and the skin welts are now under the careful application of germolene, my wonder cream!

Best of all, she’s finally awake, she’s mentally present and she’s largely happy. Let’s enjoy the next two weeks sweetheart ❤️

I warned Amanda that the day would come where I write a post that is dedicated to music, not to her. Odd really, considering this entire blog is dedicated to her and her undulating condition and symptoms.

But it seems there’s no better time than the present, because the truth is I’ve spent more time with the female musicians in my life than I have with her for the last 72 hours. She’s been out: comatose by cycle three and the house has been almost silent. It’s half term and the children are away - holidaying with their besties and our family in the West Country. The worst days post-infusion are always Sunday/Monday and thankfully these are now behind us. Whilst sleep is still firmly at the forefront of her agenda, her mental fog is starting to abate and the short moments she is awake are more enjoyable.

Whilst I’ve been overseeing her complicated and somewhat unrelenting medication schedule, I’ve also been occupied with minor works in our ongoing renovation. A small section of hallway is now under transformation into the children’s library, the painting of our kitchen cabinets is finally being finished and some sections of floor are under restoration. For this motivation I can only thank the women in my AirPods. Music has always been a heavy motivator, an inspiration, a pure mental release for me. Ever since the start of this saga, certain artists have filled the blanks in my mind and sounded out the words I wished I could say time and time again. I’ve listened to them, been calmed by them, angered, horrified and even screamed them out. Sometimes it’s impossible to know what to say by your own admission, but in someone else’s words you can hit the mood pretty well.

Gatlin (Thornton) - she is my newest superstar. My current musical muse. An Orlando born, young 22 year old who writes her own music. Her lyrics are sophisticated yet unambiguous, painful yet candid. To me, it’s a hit of pure morphine that unlocks my mind and makes my soul breathe.

~~~~~~~

Amanda - you are always on my physical and emotional agenda, and I promise you are back on my literary agenda tomorrow. Until then, I’m more than sure even you can relate to her words to sum up the last few days….

I got used your voice like it was my own,
Now there’s kind of a void,
I’m totally fine though.
This is the part where I start losing my damn mind,
This house is way too quiet.
And I know the walls would never tell,
But lately I’ve been talking, talking to myself.

Cycle three! We’ve almost made it half-way. Almost. If only the hospital cafe was open for breakfast at the advertised time…

Never mind, by 9am it was and we were in with a cup of tea, a hash brown and dare I admit…. a packet of Malteasers. The day had started rough - we were both jittery, neither of us had slept well for days prior to this cycle starting and the fear of a return to the horror of cycle one after a relatively easy cycle two had us both in an anxiety induced silence for most of the trip to Crawley. Consequently, by the time we’d had a short sob outside the canteen, ‘little bubbles of lightness’ seemed an appropriate way to re-start the morning in an attempt to elevate our spirits.

With reservations high, we made our way upstairs for our allotted timeslot - the Comet ward was already busy. There was no time to pick our own seat or enjoy the views out the window - it was dismally grey anyway so we didn’t miss much. Maybe it was the atmosphere or maybe the sleep deprivation mixed with an unwelcome and heavy dose of PMT, but the emotional tide kept breaking. As a mere spectator to this unfortunate sport, it’s utterly heartbreaking to watch.

Today, thankfully all her drugs were available in all the correct doses. The nursing team began the schedule and it’s always the same order of events, a routine we are now becoming well versed in. Questionnaires about the last cycle’s side effects, an order for lunch, the seven minute long targeted treatment injection, the presentation of the cold cap, the saline drip and finally the chemotherapy infusions. We were there for six hours. At some point mid-infusions I left for a quick trip to the town centre. Amanda watched a film and I walked aimlessly through the various stores in Crawley. It’s weird, but shopping trips just don’t give me the same joy they used to: even Primark doesn’t liven my soul. I nearly always find myself reinvested in shopping on Vinted. Perhaps it’s circumstantial, but the variety available and low prices are such major bonuses it’s hard not to get drawn in! Always the best part of a shopping trip these days is the ordering of my favourite complicated coffee and as usual Pret didn’t disappoint: one decaf, vanilla, oat latte and a baguette and I was somewhat awakened. A temporary relief.

On my return to the ward she’s nearly complete. The team has filled in her treatment book - a scary depiction of how much her various blood levels are dropping with every cycle taking her ever closer to neutropenia - and provided us with an updated prescription of antiemetics which now involves four different drugs all aimed at preventing an onslaught of nausea. It’s quite a cocktail!

Now in day two, we’ve still yet to see the full effects of cycle three - the steroids are holding it back. They act like a dam: the pressure mounts with every hour post infusions and at some point the dam is finally overwhelmed and the deluge pours out. There’s been a few jitters, some lost stares, some mention of hazed vision, but tomorrow it will begin properly playing out.

In the meantime, let’s hope the lottery on tonight’s sleep comes through as I’m sure she will fare (at least for the morning) a little better on some dormancy.

Much deserved rest and hugs are waiting for you, always 💚💙💚

I must say, she’s getting an outstanding bracelet collection….

With love Cat Edera

It’s chemo day - cycle three. I’m mid-post but the patient has requested cuddles…. My poor sweetheart is maxed out on steroids and hasn’t slept for days - now exhausted and almost sobbing.

News on cycle three will have to wait until tomorrow…..

The realities of chemotherapy are harsh. Let’s try to get you some sleep darling ❤️

Amanda’s cousin Ash Spicer has started Sober for October to also support Macmillan. Well done Ash!

Donations @

Ash Spicer is going sober this October for Macmillan Cancer Support I'm going Sober this October to raise funds for Macmillan Cancer Support so they can help support people living with cancer. Please support me and make a donation.

The wonderful Melodie Anne Ripley is holding a Macmillan Coffee Morning in aid of Amanda at Torquay Squash and Leisure Club on Friday 20th October from 10.30. Please join in if you can and donate at the link here if you are able to.

http://www.justgiving.com/cm23076604

🩷🩷🩷

Will you donate to Coffee Morning? Support my Macmillan Coffee Morning for people living with cancer

It’s Monday…again! Time is running past me at speed at the moment: I’m never quite sure what day it is or what hour it is….

It’s freezing outside - quite literally - the car announced it’s 0.5degrees this morning and winter suddenly feels imminent. Then again, I’ve just realised we are headed into November so the mild September days really should be firmly behind us. No doubt our giant oak tree will start to shed at an increasingly rapid rate soon - I’d better get the garden rake out again before the bountiful lawn I’ve been cultivating since March becomes suffocated.

At least no matter what the jumble in my head, the reliable chemo calendar reminds me this morning that it actually is Monday: PICC care day.

PICC care is always an amusing experience - and even more so when the patient decides it’s imperative to rock up looking “fresh” with a hairstyle to rival our boy and his ‘hawk!

Thankfully, parking the car at the hospital was less like a game of battleships this morning - being early really does have its perks at this particular hospital - and we sailed through the near freezing temperatures into the (well!) heated building and upon ascension to the sixth floor, we were promptly presented with a mask! Covid is back.… or we’ve gone back in time. Ugh!

Despite the unwelcome regression, our nominated nurse for the session, the beautifully named Jean-Francois, managed to navigate us into a window seat, provide us with well received cups of tea and make us laugh all the way through the cleaning routine.

PICC care ensures the skin area around the PICC line stays clean, dry and ultimately infection free. This is now Amanda’s fourth weekly care session and she’s already been through nearly every colourful bandage wrapper in the drawer… trying a different one almost weekly in an attempt to stave off the inevitable itching from the giant plaster! Last week however, she had success: it appears the Orange wrapper is the bandage of choice, accepted by her skin and freeing her from the endless itch and tearing skin damage the others were inducing.

The most important element of the cleaning process is to sterilise the entire area and it is crucial that nothing touches it once the various alcoholic swabs have been applied. Amanda however is one of the most tactile people I know and it’s become a weekly challenge to occupy her hands during this process and prevent her from picking out the various dried blood lumps that she finds compelling. Today she jokes with Jean-Francois and we nearly descend into anarchy… “it’s a good thing you are now wearing a mask else we would be in a fight” he smirks and as she quips about blowing on it to make it dry faster!

An hour later, the dressing is finally changed and after an uncomplicated blood test and many millilitres of saline being flushed through the line to keep it clot free, the PICC care regime is complete: we are free to go.

As we make our way back outside into the grey arctic abyss, it seems her PICCline hoodie couldn’t have come at a better time; she’s barely taken it off since Friday. With her next chemo session due on Thursday I think I’ll have to schedule in some much needed laundry time for this precious Orange-label garment!

Ironically, it seems the colour of fortune for this patient is turning positively orange… for a girl firmly rooted in teal (with some added notes of blues and greens), orange keeps finding her. Perhaps in her case, for the time being at least, the future is (hopefully) bright, and the future is (most definitely appearing) orange.

🧡🧡🧡

Amanda’s new clothing addition - prepared for winter and cold chemo infusions with direct PICC line access !!

I can’t lie, I’ve not achieved much this week… but masterminding this is something I’m pretty pleased with (despite the fact I can’t take credit to the actual sewing mastercaft).

Superdry hoodie preloved from Vinted, stitching credit due to my mum.

Darling, stay warm ❤️

Oncology: the study and treatment of cancer.

Before starting this process I’d barely heard the word oncology used - let alone in relation to any of us. There’s a lot to be said for the phrase “I never thought it would happen to us” - and whilst I actually don’t think like that (if you know me you’ll know I’m a serious worrier, flinching at anything that looks vaguely suspicious and booking a doctors appointment immediately) it’s still pretty shocking and horrifying when it does.

Personal contact with those who are making YOUR life changing decisions in these situations is so essential, so utterly critical. These people and the decisions they make about your care and treatment pathway can be the reason you live or die.

Today we met our oncologist for the first time. Back at the start of September we should have met her: long before I’d started writing but there was a miscommunication with a hospital appointment not to our favour. Inexcusably, her medical secretary had not clarified the location and we missed the face to face appointment by being in the wrong St Luke’s department in the wrong hospital… it’s unfathomable to me as to why there two St Luke’s at two different hospitals with equivocally similar names - this must happen on a more regular basis than they dare to admit!

Nonetheless, there we were at 8.30am this morning meeting her for the first time. She was the exact opposite of our expectations - more experienced and clinically sharp yet less harsh than she’d have you believe on the phone and undeniably reassuring in person.

For all the medical professionals we’ve met through this process, I cannot fault the care nor the personal interest they have shown in us through each stage or procedure. Prior to this mornings meeting with our oncologist I could have told you I was sceptical about her approach and that our treatment plan was just one of many she had signed off. Whilst I’m certain we are still ‘one of many’, meeting in person really does help to distinguish an individuals input into your personal care package and make you feel a little more confident in their ability to reach the end goal of successful treatment.

There can be such gratification gained from such simplicity, and today, like many moments in this expedition so far, I again learnt something new about myself.