Part 15: It aint over, till it’s over

As my chemo comes to an end, I explore why I don’t feel as excited as I expected to feel

Slowly coming out of shielding: Left - a special shielding afternoon tea with some of my dear friends to celebrate getting to my final chemo cycle. Right - celebrating my first Covid cut and colour.

My 8th and final Oxaliplatin infusion didn’t quite go as planned.

I arrived that day at The Spire Private Hospital (where they had relocated the Chemo Day Unit to - The Weybourne – at the beginning of Covid), feeling a range of emotions: dread, apprehension, acceptance, impatience, resignation, hope, excitement, pride. Getting to cycle 8 without having my Oxaliplatin stopped is ‘some achievement’ I have been told over and over again. And I can see that it is. None of my fellow on-line ‘bowlies’ got to the end. Not one. Most got to the half way point and then their bodies just couldn’t cope anymore. Some didn’t even get that far. My specialist oncology nurse has been singing my praises and the nurses at The Weybourne were metaphorically slapping me on the back – as that’s all social distancing will allow!

Oxaliplatin is the more evil half of my chemo concoction. It causes the cold sensitivity, the jaw pain, the nausea, the painful tears, the pins and needles and the neuropathy that had started creeping in to my life following cycle 6 (and getting progressively worse).

I was outwardly jolly, even though I’d had to get in early for another blood test – my normal pre-chemo test had returned showing that yet again, despite having taken the full allowed dose of the very unpleasant G-CSF injections (designed to boost your body’s ability to make white blood cells), my neutrophils were too low for my treatment to go ahead. However, the nurses had decided not to defer just yet, thinking that an extra day may just get me over the magic number of ‘1’ required for treatment to go ahead - and get me to the end of my treatment without any more delays.

So I was asked to come in at 11am for retesting. My actual treatment wasn’t scheduled till 1pm, so Steve waited diligently in the heat of the carpark to take me home again in between.

We had only just sunk back into our own sofa with a coffee when a nurse rang me back, hoping I was still in the carpark. My blood had clotted before arriving at the lab and I needed to come back in for another go. It was a really hot day.

I guess I should have known then that things would continue to not go as planned.

Back we trotted, this time with my chemo tote bag full of things to see me through my treatment: Ipad, books, pen and writing paper (I like to write letters and cards during the first part of my infusion, before I feel too sick to concentrate), Gin Gins and Percy Pigs, a selection of herbal teas to ward off throat spasms and entice me to drink more, in an attempt to counter the inevitable dehydration that I struggle to manage (once my infusion starts I am unable to take on cold liquids for about a week as they cause throat spasms and I will be limited to herbal teas and hot squashes – I look forward to never drinking hot squash ever again after this!).

Thankfully, my third blood test goes off without a hitch, my neutrophils come in at 1.1 and we’re good to go.

Finally connected via my beloved PICC line to my final Oxali infusion.

My nurse that day is Hayley. One of my favourites; alongside her died bright red hair and piercings she has a dry sense of humour and is warm and open – she makes me feel both comfortable and at ease. I can be myself.

We chat about the enormity of coming to the end of my treatment. We pat me on the back some more for getting all this way with Oxali. Hayley tells me, like so many nurses have done during my time at The Weybourne, how much they hate Oxali: how evil it is, how it’s their very least favourite poison to administer.

I relay my own ‘humorous’ stories about my experiences with the drug: the shock of experiencing my first eye spasms, the pain of forgetting about the jaw pain and biting down hard on a single grape, letting out a cry so blood curdling that it brings Steve running in from upstairs.

‘What’s happened??’ he’d demand with concern.

‘I ate a grape’ I’d bleat at him mournfully.

I am a one man, chemo stand up me.

As Hayley starts my treatment, injecting a dose of steroids into my PICC line, we laugh as I verbalise the bum-tingling experience it brings with it.

‘Oop there it goooooeeeesssss’ I squeal, no longer worried about this strange sensation that sends electric shocks right to my anus – like sitting on stinging nettles, I imagine. It’s not pleasant don’t get me wrong, but it no longer scares me.

And then the bag of Oxali is lifted onto my drip stand and connected to my arm. A few pushed buttons on the pump and the whirring and ticking that I have grown so used to over the last 6 months begins; I sit back, waiting for the usual sensations to kick in. It normally starts with a sticking in my throat and then a general feeling of nausea. Hayley and I muse over whether I will need a heat pad (which helps prevent the throat spasm that oxali causes) on my chest today, considering the heat – we decide to risk it and go without.

In the meantime, I sit back and start researching Mountain Bike Courses for our planned trip to the Lake District that we haven’t been able to book until we knew my treatment was going ahead as scheduled. Then, just as I start drafting an enquiring email, an itching in my hands and feet begins, and before I know it my palms and soles of my feet are bright red. I start to feel a little panicked. I'm only 5 minutes in to a 2 hour infusion.

Hayley has left the room and I start to crane my neck round the door of the little room I share with one other very quiet lady who is already safely onto to the final flush of that day’s treatment. As I am fully connected to my drip and chemo pump I can’t just jump up to find help.

Eventually the quiet lady notices that I’m a bit distressed and I tell her about my hands and feet.

‘I’ve never had this reaction before!’ I laugh, trying to stifle the panic that is building.

I try to look even more obvious in my search for assistance and it takes me back to that time in hospital after my surgery when my cannula burst and my arm blew up. I couldn’t find my assistance button and I was struggling to get the attention of the other patients on my bay to press theirs on my behalf. It felt like I sat forever, watching my arm get bigger and bigger, before someone was able to help me on the busy and understaffed ward.

The quiet lady starts to explain how this is her second round of treatment after a few years off, and even though she’s on the same drugs, her side effects are completely different, but before I can respond, Hayley is back. She looks at my red hands and feet and turns off my pump.

All of a sudden it feels as though there are nurses and doctors and machines everywhere. My obs are taken, the itching spreads from my limbs to my whole body and the tingling returns to my bum. I am surrounded and everyone seems to be talking at once.

I don’t really follow but the doctor is asking questions and the nurses are telling her what to prescribe me. She is not an Oncologist but a Haematologist I learn somehow, and just doing what she is told.

‘We’ll give her a break and some antihistamines and try again in a while’ I think I heard.

And then I really don’t feel very well at all.

‘It feels like my bum is about to explode’ I blurt out.

The nurses laugh.

‘What did she say?’ I hear the doctor ask.

‘I think I might be sick’ I say next.

‘Right, let’s get you relocated’ Hayley turns to the quiet lady.

‘I’m so sorry’ I murmur as she is shuffled out gently. ‘I’m so sorry’ I repeat again and again to no one in particular.

I am becoming delirious.

Hayley phones an ambulance.

‘It would be so much easier if we were still at the Hospital’ she grumbles in my direction. ‘3 hours? It’s an emergency!’ She exclaims down the phone line.

At some point she phones Steve and tells him she will phone again with more instructions.

‘I’m going to shit myself’ I shout this time and Hayley disconnects me from my drip.

I make it to the toilet just in time.

‘Leave the door unlocked’ I’m told, but I lack the wherewithal to even think to lock it.

I don’t know how long I sit there, with my head in hands, rocking, waiting for the horrible feeling in my stomach to go away. I am aware that I am sweating and that I don’t know what I want, that I don’t know how to make it feel better.

And then I’m sick too. Half goes on the floor, half Hayley manages to catch in a cardboard bowl – and then I’m exposed to the nurses and doctors who are circling around my room again, whilst I’m stuck sat on a toilet full of my shit, with my pants down and purple vomit on my face and feet.

Hayley stabs an anti-nausea injection into my arm and I barely notice. It’s not till later when I discover the bruise it left that I even remember it happened.

Eventually I work up to wiping my bum and dragging myself back into my chemo chair. But I’m restless, I can’t get comfortable. I have an incredible pain in my stomach.

‘I don’t know what to do, I don’t know what to do’ I repeat over and over. ‘I don’t know how to feel better’.

Someone reclines my chair and back on my drip they pump me full of more antihistamines and pain killers and I am left to drift in and out of consciousness, groaning in pain at regular intervals, waiting for the ambulance.

Slowly, slowly though, the pain eases and the nausea passes and I drift a little closer to reality.

‘I feel much better’ I croak at Hayley, what feels like hours later.

‘No offence sweetheart,’ she cajoles, ‘But you don’t look it’.

Eventually though, I am able to sit up and we decide to cancel the ambulance that still hasn’t arrived, that Steve will be able to take me up to the Chemo Ward at the hospital instead.

Honestly, I just want to go home and luckily, after a quick once-over, they let me.

Before I leave though, I ask Hayley if I have to come back to finish my Oxali. She smiles at me.

‘No hun, that’s it. Your body said 'no more!'’

And I am equally relieved and disappointed in myself. I have already added this day to my list of ‘worst day of my lifes’ that I have been collecting since my diagnosis last September. Just thinking about coming back for more fills me with fear, panic, anxiety. But I am also a little sad that my relationship with Oxali ended as traumatically as it started six months ago and that I didn’t end up finishing all 8 cycles – there is no bell ringing to mark the end of treatment, no triumphant walk out that I have watched videos of my on-line cancer buddies making and had looked forward to doing myself. Instead I was rolled out in a wheel chair, only half-conscious, covered in my own sick.

My attempt to show visually my mixed emotions about the removal of my PICC line: sad, afraid and excited all in one go.

The following Monday I am allowed back to get my PICC line removed – they needed to make sure I was ok after my reaction first, in case I needed more intravenous drugs over the weekend - and I wake that morning feeling all the emotions of loss. Annoying as he was – having to shower around him, having to go in for weekly flushes, being sent for surprise x rays to check his positioning, having allergic reactions to his dressing, having to think about him all the time when dressing, trying not to get him sweaty whilst exercising, not being able to have a bath, or swim, or go out in our canoe – I thought of him as my little friend. That first infusion was so painful I don’t believe I could have walked back in the doors without him. He made the last six months bearable. He helped get me through.

And not just that, he gave me a visible marker and cue to others too: his sheer presence meant that people on the street could recognise that maybe I needed more space or extra care – especially out jogging or walking – that I won’t have anymore. My compromised immune system, when coupled with the effects of neuropathy make me feel pretty vulnerable, and now I have to manage those feelings alone, without him. Cancer is of course mostly a hidden illness, and without him, I’ll just be me. On the outside.

He also helped me talk more openly with people about my illness – neighbours, the postman, the Reedham Ferry operator, my Hermes delivery guy… he gave me a talking point, a way in to talking about what I was going through, and something for others to respond to. And all of a sudden, he is gone, when in so many ways, he has been my little lifeline.

His removal signals the end of my treatment so far, even though I will remain immuno suppressed and continue to experience chemo side effects for some time. Until my scan in October (the risk of infection meant that he had to come out even if I do require more treatment at a later stage) it’s hard to feel free of its burden. And even then, will I ever feel truly free?

Despite my mixed emotions about saying goodbye to PICCY, since his removal I have been able to go canoeing and swimming! Just in time for a socially distanced visit from Steve's sister Hannah and fiance Doug.

It’s hard to imagine a time when I will not have cancer on my mind. Not least for the fact that I now have the lasting impact of neuropathy to contend with. I am told this will take months to dissipate – often up to 2 years - or not at all. Peripheral neuropathy develops when nerves in the body's extremities, such as the hands, feet and arms, are damaged. It is an accumulative side effect of Oxaliplatin and leaves 10% of patients with permanent damage.

For me it plays out in the following ways:

Numbness and discomfort in the tips of my fingers and loss of dexterity, making picking things up, opening packages and cans, chopping food, doing up some buttons and tying laces challenging at times. I did my first grocery shop in 4 months the other day – I knocked a whole box of fish stock onto the floor and couldn’t make my hands work to pick them up again. Luckily Steve wasn’t far away.

Numbness in my feet – it feels a bit like what I imagine walking and running on marshmallows might feel like. Because I can’t really feel what my feet are doing I feel pretty vulnerable, especially on uneven surfaces and out jogging. However I am determined to keep running.

Impaired balance. This makes some dynamic stretching and other strength exercises completely impossible. My yoga is suffering: a lot of poses that I used to find easy are completely out of my capabilities now. I obviously have to be wary of this when running too. I am yet to try tight rope walking though…

Electric shocks that pulse up my legs and up from my fingers – especially when I push my hands to the end of their reach.

Feeling like I have bits of grit all over my hands and feet that I can’t brush off.

Swelling, especially in my feet. And feeling like I need to pump my fingers to get blood flow into my hands. Whether this works or not who knows!

All of the above gets worse when I’m hot or cold. So, running sometimes helps and sometimes hinders.

But I am hopeful that in time it will reduce. It is a challenge for me, as I am so active and it often makes me feel less safe doing the things I like to do. I am secretly relieved I no longer have a horse – the task of putting a bridle on a moving animal now seems impossible. There is no treatment for it, and there is no way of knowing how long it will last – there is no test that will tell me if the damage is permanent or not.

Despite neuropathy, I am determined to keep up with the things I love doing: left - enjoying cycling Marriot's way. Middle - feeling proud having completed my first 5 mile run since surgery and right - out for my first ride in a year with my buddy Georgie on my dear friend Claire's very safe 'Drummy'.

So although I am glad that my treatment has come to an end (I am especially excited to never have to drink hot squash ever again) I find the expectation that I must be excited about it hard. And that’s because I have no idea if it has worked, or that even if my follow up scan shows that I am NED (No Evidence of Disease), how long this will last.

Similarly it’s hard to feel excited by treatment ending, regardless of how awful it was, when it was saving my life; my natural instinct now is to worry about what the disease will be able to get away with unchecked till October. I know my body couldn't take any more treatment just now and needs a break, but it doesn't stop me from panicking about every little change in my bowel habits, every instance of bloating or stomach pain. Last night the back pain that I had suffered for years (and had gone completely following the removal of my tumour 'Deirdre') came back: every little thing that seems a bit ‘not right’ convinces me that 'Deirdre' has returned.

I’ve also started Googling again…

Back in the early days of my diagnosis, before my surgery and official staging and grading I read everything that I could. I felt somehow that if I could know everything, I could gain back some control over what was happening to me. And I guess that’s what I’m doing again now.

Somehow I can’t just sit and wait and hope that everything is going to be ok now, that life will return to normal. I am a realist as well as a fatalist. So I’ve been looking at rates of recurrence. And what I’ve learnt, or what I can ascertain is, that the likelihood of this increases (one study suggested by as high as 24%) for every involved lymph node.

I had 14.

So I guess I’m left wondering, how can I be excited when I’m petrified and find myself crying without warning? And just like they don't want to talk with your about your own death, understandably, no one wants to entertain those fears of recurrence with you either, even though you need to explore them. Or I need to explore them, at least.

The thing is, even if my scan results do show that I am NED, I’m not sure I even know who I am now.

Having cancer changed me. Maybe even for the better. But how do I transition to being that new me, combined with a return to normal, post-treatment life? What do I do now? How do I crack on like nothing has changed when everything has?

I have weird flashbacks now, already – without warning I can be transported back to those moments of trauma throughout my treatment, to one or many or a Momento-style combination of all those ‘worst day of my lifes’ again and again. Even sitting here and writing this, I can feel my heart rate go up…my eyes start to cloud over, the eye pain that occurs when I cry return (another legacy of Oxali).

Last week I cycled past a road accident on an A47 slip road; there was an injured body lying by the side of the road surrounded by medics and police and it triggered yet more flashbacks. In an instant I had revisited every single one of those times when I had been deliriously out of it and completely and vulnerably in the hands of others.

‘Oh no,’ I heard myself say to no one as I watched, sad for that person, only too aware of the fear they must be feeling, the disembodiment, the powerlessness, and sad for their family who will feel just as helpless. And I rode along, my tears streaming in the wind, sharing those feelings with them, because I know them, I’ve lived them. But at least, I guess, so far, I have also survived them.

My very final dose of Capecitabine, bringing my treatment to a close.

This morning I took my final dose of Capecitabine. And that’s that. I guess. For now…forever?

And what happens next?

Well, Steve and I are going on an overdue Covid-safe holiday. It is not the motorbike tour of France we had planned, but I am still just as excited. We spend a night in a very posh hotel in the Peak District and then mosey up to the Lake District where we will Air BnB in a little secluded farm stay. We will mountain bike, kayak and hike, cook our own food and stay away from other humans.

I also have a return date for work – September 22nd - but I have applied for a reduction in hours. I also am going to enrol on the next French course for September and an Intro to Counselling course in January. When I’m feeling optimistic I remind myself that I have another 30 years of my working life still to live…that’s enough time for a change, and far too long to wish away.

We are also getting a puppy. Meet Arlo. He is currently 4 weeks old, so will come home after our holiday – just in time to distract me from October’s ‘scanxiety’.

Little Arlo puppy, still with his Mum's family. Left: at 4 weeks, Right: at 2 weeks.

In the meantime I will try not to Google too much, try not to worry about my fertility or think about my own death, or the ethics of bringing a baby into the world when I might not be around to see it grow up.

Instead I will cook nice food, run, ride my bike, do some weights, ride 'Drummy' sometimes and keep attending my yoga class via zoom. I will swim in rivers, walk my dogs, train my puppy and get a new tattoo.

Left: One of my favourite home cooked dishes of Lebanese-style Fatteh. 2nd left: One of my solo cycling adventures to Reedham Ferry. 1st right: Another attempt at sourdough, made form my own starter. And right: A bit excited to choose my own fruit and veg for the first time in 4 months following my first Covid grocery shop.

I will slowly and sensibly catch up with my friends again (following government guidance as best I can and avoiding inside spaces), whose support through this has been both immense and humbling.

Slowly coming out of shielding I've had some really nice socially distanced outdoor catch ups!

And I will spend time with my love, without whom I don’t know how I would have survived this year – he cooked for me, bathed me, washed my hair, cleaned up my sick and my poo, drove me to appointment after appointment and spent hours with me in waiting rooms for emergency x rays and unplanned hospital visits. Not once did he complain; not once. He kept me sane and he countered my fatalism at every step. He looked after me but never once made me feel like an invalid or that I was weak and incapable and couldn’t cope without him. I cannot thank enough whatever forces worked together to ensure that we found each other at just the right time in our lives to be strong enough, and to be able to love each other enough, to have made this past year - both the worst (because of cancer) and best (because of him) year of my life - work.

And, I will keep writing, because, in the words of Lenny Kravits, my story ‘aint over till it’s over’.