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Jane Spencer-Rolfe : My ‘Rocky Road’ Journal & Poems

Jane has very kindly given us her thoughts on her recent bowel cancer diagnosis and she has been candid and honest. Thank you Jane.

THE FIRST SIGNS

Do you sometimes get the feeling someone is trying to tell you something … and then it turns out that someone was your own ‘inner voice’? 

A pandemic had hit the world and everything was already very different – plans on hold, and adapting was the order of the day, for everyone. We’d all been locked down, and were going nowhere – but I was just so TIRED.  One day I heard myself saying to someone who commented that I was ‘looking exhausted’, that: ‘Yeah, I am always shattered – I seem to have less energy than some people I know who have had cancer!’ … I actually remember saying that.

I sometimes write poetry (‘my words’), rhymes, and even two songs, since the start of the pandemic … well, we all had time on our hands. Then, in August last year I wrote a poem, which I called Closing Down (it’s at the end of my journal here) – my writing always finds me, rather than the other way round. Two months on from writing Closing Down I was being placed on the fast track after a visit to the doctor, and  was quickly called for a colonoscopy which indicated a strong likelihood of cancer.

It all started when symptoms I could no longer ignore started to impact on my daily life, not to mention my peace of mind!

Suddenly, there was bullet proof me, who hadn’t been to the doctors for so long I couldn’t remember the last visit, with the sort of thing you think will never happen to you, happening to …err … ME!!  Without going into the gory details, I was aware of the sort of symptoms the ads on the telly, or which pop up on your Facebook page, gently suggest you ‘get checked out – ‘just in case, as they could be an indication of cancer’.  I pushed for a GP appointment – but eventually saw an out of hours doctor via the 111 number – who said I should immediately see my GP, and put me on the Fast-track Programme. I was scared. I quickly received the colonoscopy after talking on the phone to the hospital consultant, who my GP had referred me to.  The pandemic was in full swing, and getting appointments or seeing anyone was a mission, and required a COVID test first, and going in to all appointments alone.

THE ’WINDOW’ WHEN IN LIMBO

I was then in that window of time when you know it’s almost certainly cancer, but you don’t know to what extent. Everyone copes in a different way … but believe me, it’s probably not going to be or feel how you think it would be in that ‘limbo’ period. For me it lasted about three weeks, and I probably thought and felt everything you imagine you might in that situation, but I surprised myself in some respects, and was unexpectedly philosophical. I went with the flow - it was all I could do. Sometimes I was frightened, sometimes I was sad, sometimes I was positive, sometimes I was cross, sometimes I was a little … crazy! I decided to tell people, my family and friends – but that is just me. Others will feel differently perhaps. After all – it is hard for loved ones, maybe as hard, if not harder, as they just have to watch – whereas you can ‘do’. But I suggest everyone at every stage has to do what feels best and right for them.  I admit I didn’t have to include any young children in my decisions at any point, and I may have chosen slightly differently at some points had I needed to take little ones into account. 

THE DIAGNOSIS

During the ‘window in limbo’ period, I had MRI and CT scans, a first for me – and blood tests and other scoping investigations while the diagnosis was made. Then I received the appointment to be given the result.  Driving to that appointment I remember saying that whilst it felt like a strange thing to say, it somehow felt like a privilege to have spent time seriously wondering about whether I have a future ahead of me – and all the emotions and thoughts that perspective had sent through my head. As I voiced that feeling, I still didn’t know whether I had, or maybe not, a life ahead – but would know within the hour.  I can’t lie, I was also very scared as we approached the hospital car park. They had even said I could take someone in with me for this appointment.

I was one of the (many!) lucky ones – the consultant quickly told us, it was cancer, and it hadn’t spread. For me the approach was going to start with chemotherapy and radiotherapy, with a view to surgery further down the line. 

Every person gets their own cancer ‘ride’ – for some the surgery comes first, and fast, and all that depends on the specific diagnosis. 

THE BIG DIPPER

So I had reached the end of the queue, and there I was getting on the scariest ride of my life!!  Yeah, you’ve guessed it, I hate funfair rides at the best of times, and this was worse, at the worst of times! There was a worldwide pandemic, the entire population were all locked down. I couldn’t see most of the people I loved, I had just been diagnosed with cancer, oh, and Christmas was fast approaching. Beam me up Scotty!

We met the oncologist – I wasn’t even totally sure what an oncologist did! I’d probably have Googled it, had I not made a strict pact with myself at the very outset, NOT TO GO SEARCHING THE INTERNET for fear of terrifying myself, and reading potentially inaccurate or out of date information. It turned out he was the person who would decide upon my treatment plan – which would consist of chemotherapy and radiotherapy.  He was absolutely the most lovely, kind, human, clear, helpful, dear soul you could wish to meet. How lucky was I to be putting my life into this man’s hands. 

THE RIDE STARTS TO CLIMB ….

The treatment started a few days before Christmas. You get a car park pass, so visiting the hospital on a daily basis (not weekends for me) there is no mad scramble to find a space and pay.  You soon get into the swing of it.  Everyone at the radiotherapy department soon knows who you are, and it is friendly, calm, and as good as the experience can be. I was given a look round before I started and shown where I would be going, and what to expect.  Considering I had what feels like potentially one of the least dignified of tumours(!) – bowel cancer – I can only say that the radiographers were so professional, respectful and human, that I never felt embarrassed even though I was often in the hands of young radiographers -probably the same ages as my own sons. They were all brilliant - without exception. I don’t know about a clap, they all deserve gold medals if you ask me!

I won’t pretend – the treatment is at times a challenge, so prepare to clear the decks and give in to it. Accept the help of family and friends. Put yourself first. And strap yourself in for this bit of the ride. Beg steal or borrow a telly that works and consider asking for a Netflix subscription for an early birthday present, if only for a couple of months! Try and make a cosy space where you can retreat to.  For example – I put a TV in my bedroom. And downstairs I also made a comfy place on the sofa. Also somehow get hold of all the books you’ve ever wanted to read. If you like crosswords, or Sudoku – get a book with them in!  I started colouring, with crayons and felt tips in an adult colouring book and found it very soothing.  And then prepare to put everything ‘on hold’, while you do what you feel you can, when you can.  I would sometimes walk the dog. I would sometimes cook – I made a quiche from scratch, even the pastry one day – and I try and avoid cooking normally. On other days I did – or rather could do - nothing, other than get to the hospital for the treatment session.  I watched six series of Schitts Creek on Netflix, which sounded comically apt for my situation. One cold January day, while sitting in the waiting area, waiting to go in for another session of radiotherapy another poem found me, and I wrote it on my phone – it’s called Nemesis.  (it’s at the end of my journal here)

AND THEN YOU START COMING DOWN …

The end of the treatment, you’ve made it ‘to the top’ of the ride and you know what happens then on a big dipper.  Yes, hang on to your hat!  It’s that same heady mix of ‘I’ve done it, I’ve made it, I am up here, and now the fun starts’.  You feel a sense of joy, and exhilaration, but you also know that the ride is going to gather pace as you hurtle down the dip, and you are going to have to shut your eyes and hope you reach the bottom and the thing slows down. Which of course it does, I am happy to report. 

BACK IN THE LIMBO WINDOW

And then you wait to see what happens when you come off the ride, and walk away.  Can you walk away!?  Are you still in one piece, did you really do that? And you pat yourself on the back, and you await the next bit. 

I’d got off the ride and got my balance again. Now I awaited the post treatment scans to see what the outcome would be.  Got blood tests done. And we all crossed our fingers and toes.

For me the news is good. Amazingly the scans show the cancer has gone, and that I am showing a complete response to the treatment.

As I write this, I am preparing to gird my loins ready to start the preparation for my scoping appointment at the hospital tomorrow afternoon.  Because there is still lots to regular monitoring for the coming year ahead, so more trips to the hospital, more blood tests, more scans.  But I am going to find all that very reassuring, as I live my life. Nothing is embarrassing, it is all just necessary to get to the next stage of the ride. 

From the moment all this started I was determined – as my poem Nemesis indicates.  And, for the record I never saw it as a ‘fight’ – my approach was to heal myself with love. I didn’t want to be in conflict with my own body, I felt sorry for it and decided I would work WITH my mind and my body and that we would set the cancer free and help it leave me … and as whacky as that may sound to some reading this, that is exactly what we achieved.

I wrote this very spontaneously two months before being diagnosed with cancer.  

CLOSING DOWN

Closing down
‘out of town’
Creeps in,
unnoticed
like a thief in the night.
Who, or what, pulls the trigger?
No one could figure.
Cold and naked
she stood in the light.

Wandered ‘off-piste’
while walking in sun
it’s now like a chill,
against her will.
No longer a thrill … 

A childish pleasure
as good as treasure
like the joy of a toy,
now broken or spoiled.

 When all feels ‘lost’
and a dusting of frost
glistens invitingly,
deceptively,
enticing her to pull the cover
over her head.
Get back in the box
… and turn the locks.

24 Aug 2020 © Jane Spencer-Rolfe

Written one cold January day, whilst waiting to go in for another radiotherapy treatment

NEMESIS

My mind, my body, my soul
seem to have stumbled in a hole
All I am
is in a jam
and, it’s really taking its toll.

But deep down here it seems
a light above me beams.
I’ll reach up and I’ll try
… even though I cry.
As my mind – it won’t be beat!
My soul, you won’t defeat
And my body
It can heal
and, once more, my life be real.

 I’ll trust the ones who know,
loved ones too - and show
those who help me out
my heart -  it holds no doubt.
A strength will see me through,
and my soul, it will renew
The person that I am,
returned – for me … and you.

 I’m going nowhere fast!
This phase, I know, will pass,
And back I’ll come again,
free of all this strain.
And once more I’ll feel … whole.
My mind. My body. My soul.

© Jane Spencer-Rolfe 2021


MY ROCKY ROAD PART 2

COMING DOWN WITH A BUMP

A couple of days after submitting My Rocky Road Part 1,  I went for my first post-treatment scope monitoring … and my bubble was very abruptly burst!

Fast forward a couple of months or so, and here we are, at Midsummer Day on 21st June, and a week ago I had major surgery to remove my dodgy bit of large bowel.

In fairness, I was told by my oncologist at our very first meeting, that the radiotherapy and chemotherapy treatment, whilst having it as first option if an appropriate case, is now the ‘new’ Gold Standard treatment for my sort of cancer - radiotherapy and chemotherapy is NOT ever seen to be ‘a cure’, although it can keep you cancer free, along with the regular monitoring to check that things are ‘holding’ – maybe forever.  For me, whilst the treatment was well worth it as it did zap my tumour in the main, I had some lingering returning/remaining pre-cancerous cells detected with the first post treatment monitoring scope, so of course they needed to be gone – cut away with surgery, which I had always hoped to avoid as I will be honest with you, I was simply scared at the idea of having an operation.

Psychologically the screeching U-turn following on from the relief and excitement of my ‘no cancer’ and what turned out to be a very short-lived ‘all-clear’ following my post treatment scans and even a physical examination along with the blood tests, was the hardest part of this Rocky Road so far for me!  I had been SO positive, SO convinced it was gone – and I found the idea of having an operation extremely daunting, and I felt temporarily traumatised by what felt like a sudden and cruel turnaround.  

FEELING TIRED AND EXHAUSTED

I became extremely anxious, which in turn took its toll, and I ended up being admitted to hospital with a distended bowel, caused by what turned out to be a stricture in my bowel at the site where the tumour had been, and where the treatment focussed – which was all very grim.  I felt physically, mentally, and emotionally beaten for a short time.  BUT, the wonderful NHS staff at the hospital sorted it all out … eventually, and I say ‘eventually’ as they were clearly making careful thoughtful decisions about the best route to take for me as a person, my on-going health situation, and what was the best course of action for me, in the long run, in order to stick with my treatment plan. By then my elective surgery in mid-June was already in place. 

With my bowel distension and the stricture, I spent a week in hospital getting to a stable situation, by which time I was sent home with just over two weeks to tentatively get through to reach the date of my planned operation.  I knew I needed to get there by being careful with my diet and generally trying to reduce my levels of anxiety, and to also build myself up both physically and psychologically, in readiness for my operation. 

With the gift of hindsight, the good thing about this awful time was that it gave me a necessary and quite challenging period as a hospital inpatient which I had never experienced previously (other than having children), and something I had irrationally felt huge anxiety about.  The experience showed me I had nothing to worry about, that all the staff are wonderful, and kind, and respectful, that hospital ‘routine’ is nothing to worry about and it's a place where I could trust that I would be well cared for.

THE DAY OF MY SURGERY IS HERE

I was due at the hospital admission unit at 7 am on a Monday morning, after some pretty intense pre-operative preparation, and because of Covid restrictions I was dropped off, with subsequent visits extremely restricted and only after being on the ward for 48 hours.  It felt like a bleak and scary moment.  But of course it was absolutely fine. Everyone from the moment I arrived was kind, organised, and lovely.  I was well looked after and as I got ready and into my theatre gown I met my anaesthetist. The consultant popped in, and also the stoma nurse who I had met before, whilst I was in hospital.  So lots of reassurance, and some ‘friendly faces’ which all make the world of difference.

COMING ROUND AFTER THE SURGERY

Waking up in the recovery room was a wonderful feeling, and immediately I knew that my levels of anxiety were reduced in spite of being in some post-operative pain, until they had assessed the level of pain relief required for me.   I was then wheeled off to my ward – and started my days of recovery and getting to grips with my decommissioned bottom, and the joys of my stoma!  (hopefully reversible in time, as I write this – at least that’s the current plan). Oh, and I must just tell you what I  found the most useful thing the stoma nurse said to me: don’t regard your stoma as a ‘wound’, it is simply a (temporary) new body part, helping you out while you recover.

My hospital stay was a very positive experience. I was told by my consultant who visited me that the op had gone according to plan and had been quicker than anticipated. I would of course need to await the histology, and after my previous experience I have decided I must take each day as it comes and await the facts as they unravel.  My pain was well managed, all the staff I encountered were brilliant, and I was so lucky with lovely ward-mates.  All over it felt like a generally supportive environment, with the focus on swiftly getting me into the mind-set, as well as physically and practically, prepared for getting home as soon as possible.

BACK HOME AFTER SURGERY

I made it out of hospital just five days after major surgery. I'm now walking round the garden, and getting to grips with the next leg of my trip on this rocky road.  

To be honest, I could do with a few less bumps than the last 8 months, but who knows what is around the next corner!  Let’s hope it’s some smooth and with lots of sunshine so I can relax and recover by the fragrant roses in my garden. 

Watch this space!

All photo courtesy of Mick Spencer