Jane has very kindly given us her thoughts since her bowel cancer diagnosis in 2021 and she has been candid and honest. Thank you Jane.
MY ROCKY ROAD WITH CANCER PART 1
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.
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.
'out of town'
like a thief in the night.
Who, or what, pulls the trigger?
No one could figure.
Cold and naked
she stood in the light.
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
enticing her to pull the cover
over her head.
Get back in the box
... and turn the locks.
24 Aug 2020 Â© Jane Spencer-Rolfe
Written one cold January day, whilst waiting to go in for another radiotherapy treatment
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.
Â© Jane Spencer-Rolfe 2021
MY ROCKY ROAD WITH CANCER 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!
MY ROCKY ROAD WITH CANCER PART 3
Hi folks, it's me - back again after my last entry last year on Midsummer's day 2021, shortly after getting home from my major surgery, to remove some of my large bowel, and have my stoma 'introduced' to life on the 'outside' - and me.
THIS IS WHERE I LEFT YOU ALL LAST TIME
â€œTo 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 a smooth ride with lots of sunshine so I can relax and recover by the fragrant roses in my garden. Watch this space!â€
TO THE HERE AND NOW - MAY 2022
So, as I rather foolishly promised - or do I mean positively promised - here I am again, nearly a year on alive and kicking. Sounds easy doesn't it. Believe me, it hasn't been - but the point is, in the grand scheme of things, in my 63 years of life, it has so far been just 18 months 'out,' dealing with this rocky ride, and whilst it has been something of a baptism of fire, with a pandemic thrown in, just for good measure, I have survived the ordeal.
LEARNING ABOUT ME
I have learned a LOT - mainly about myself, but also I've gained a massive insight into the health service ... our health service, still is - at this time - and I feel strongly that should remain the case, a National Health Service, for everyone - free at the point of delivery, whoever you are, whatever your financial circumstances. A well-run, adequately resourced service for every single person from first breath ... to last. That will always get my support, and vote.
Enough of the politics, though and back to my trip. I did relax, and I did recover - but not without some high hurdles, very specific to me and I don't want to either terrify anyone reading this, or give you a rose-tinted view of what it means to have cancer.
From the start, as I said in Part 1, I was never prepared to see my cancer as a 'fight' or use such terms to describe my tussle with my experience. I felt that trying to love myself - and my body - to get better would be 'my way' of dealing with the situation. Everyone is different, and I accept others may well feel a different approach is going to work for them.
In Part 2 I told you about my 'screeching U-turn' after my initial treatment and the 'all clear' ... which err wasn't, and the bit where I said I was temporarily traumatised. Yeah, well, that temporarily continues, and whilst it has waned over time, it still hijacks me and I can become quite unexpectedly overcome by feelings of extreme anxiety. I hear from others who are in 'the cancer club' (as I call it) that this is a perfectly normal thing. Phewww!
'THE CANCER CLUB'
Let me just explain about 'the cancer club' - and why and how that term came about. When I had my first beautiful baby boy, 30 years ago, I coined the phrase 'the baby club' and explained it thus: However many books you read, pre-natal classes you attend, You Tubes you watch (for those younger readers!) people you talk to - you don't know what it is like to be a mum, a parent, until someone plops your baby on you, and says those words 'here is your baby ...'. There is no going back, from that moment on, you are in 'the baby club'. Whatever the future holds, whatever your circumstances - and as we know, it's not always positive for everyone, sadly - from that moment you are in the 'baby club' for evermore, even when you are 63 (as I am), and your babies are all grown up and living their own lives. It's the same with 'the cancer club' - once in, you never leave - wherever you are with it. But, it doesn't mean cancer has to define you, or that, in time, it is even a feature in your life, other than when you meet someone else going through it, or who like you has had the experience; then there is an unseen - maybe even unvoiced or acknowledged - 'cancer club' bond.
BACK IN 2021 ...
I continued to make a good recovery in the sunshine. Stoma life had its moments, but I still say, having thought it would be one of THE most traumatic aspects of my experience, it actually turns out it was one of the least traumatic aspects. I actually found it quite interesting. You gain an insight into your bodily plumbing in an extremely 'hands on' sort of way, but let's face it, we all have to eat, and then get rid of our bodily waste to survive, and poo, whilst a bit of a taboo in polite company IS a fact of life. So we soon learned to laugh at it on the odd occasion I would eat something that would cause it to gurgle rather too loudly.
I took full advantage of having the key to the 'decent' disabled toilet - and indeed soon began to know them like old friends on trips out and about in Suffolk! (Has anyone done a pamphlet/app for that yet? If so, I didn't find one). It also brings home that not everyone using the 'disabled' loo needs to be looking 'obviously disabled' - and I did get a few 'dirty looks' and I'm sure people were thinking 'what's she doing going in the disabled toilet!?' as I soon found that no one knows you have a stoma, unless you tell them. But believe me, you do occasionally need to get to a loo without delay to sort things out - but all perfectly manageable and rarely with any disastrous consequence. The worst of those occasionally occurred during the night, when I learned my bowel seems to get active, but you soon take that in your stride - after all it's better than being dead!
I saw my colorectal consultant, who said the histology showed I had had a 'nasty' tumour successfully removed, and that my nodes were clear. But then, a few weeks later my trip, again, hit an extremely rocky patch when the post-operative adjuvant (yes, I had to look that one up!) chemotherapy wasn't tolerated by my poor old body, and I became extremely unwell. I had a parastomal hernia, and ended up on the Sepsis Care Path, and in hospital for my longest stay so far. Rocky, or what!!
By then, it was clear that the poor old NHS was - as often being reported on the national and local news - 'on its knees' - undoubtedly an impact of the preceding 20 months of the Covid pandemic. But, I always received tip-top medical care at the crucial moments, and kindness and respect from the vast majority of those caring for me on the wards. Also, my own self-sufficiency, spirit and a steely determination not to lose heart at that point, helped me through and out the other side, and home again. All this, in addition to feeling anxious, very unwell, and with extremely limited restrictions for visits due to Covid. At one point I was having to sprinkle sugar on my poor little stoma, which at that point was not so little! ... Yeah, don't ask - I can't remember why I was having to do that, but a spoon and a plastic cup of sugar I had beside me for the regularly required sprinkling! I can also remember a point at which all I wanted to do was get into a bath, and I struggled into a bath feeling something like an octopus, I had so many long things attached to my body which I had to contend with .. a catheter, a drip, a drain via my nose into my stomach, my stoma and associated accoutrements .. and whilst a member of staff helped me get to the bathroom, once there I was on my own. It's amazing what can be achieved when you have to. I must have looked a comic sight in some respects, with all those 'accessories'!
BACK HOME BUT MISSING SOMETHING VERY SPECIAL
I got home, and there was to be no more chemo. I couldn't possibly risk having THAT happen again. On top of all this, I had - depressingly for me - lost my singing voice, something I love to do, and which had been a great source of joy and comfort for me, and had helped with my well-being. A few weeks after my surgery in mid-June, I sat at my piano as I had done many times during this period, and went to sing - but all of a sudden I couldn't reach the notes. I talked to my GP, and to the Oncologist who were managing my chemotherapy, but neither seemed particularly interested or worried about it. To be honest they rather brushed it off, and said things along the lines of: 'what do you expect, after major surgery' and 'don't worry about that, it's bound to 'sort itself out'. But, I of course was worried about it, as I felt like one of the things that was 'untouched' in all this, and had continued to enable me to do something that brought me great joy, and distract me at times of anxiety, was no longer available to me. I wondered about trying to see a specialist about it, something my GP suggested I consider - but frankly at that point, I was too 'freaked out' at the thought of getting more hospital appointments, and worse still finding out something else I didn't want to hear - but soon the whole issue got 'overtaken' by the hospital admission with the hernia and my veering off onto the Sepsis Care Path, shortly thereafter.
WORKING OUT HOW TO GET MY VOICE BACK TO SING AGAIN
In the end, it was me, just me, who - with logic - worked out what was preventing me from singing, and enabled me to work out what I needed to do to get my singing voice back. First, I thought about when I had lost my ability to sing properly (within weeks of my op), and what I was doing differently - (hmm, I had the stoma). I worked out that for the first time in 62 years, I was straining my neck to look down at a quite strange angle, on a very regular basis to deal with my stoma - emptying it while sitting on the loo, and of course changing the bag regularly, probably every 36 hours, sometimes more often. I decided it was the neck-straining action which had affected my voice, and from that moment I was very mindful when dealing with all things stoma! I would consciously 'relax' rather than tensing up when attending to it. I got myself a little portable mirror so I didn't always have to strain looking down at the rather awkward angle. And you know what? - it worked!
YAY! I CAN SING AGAIN - LIFE HERE I COME!
Very gradually I became conscious that my neck started to feel more 'normal', less strained, with the my relaxed un-tensed approach to my stoma and its associated activities, and my voice gradually returned. So now I could sing again, and I was out of hospital. I had survived a difficult phase, and now I was determined I was going to fully recover.
Because having had the parastomal hernia, and the risks associated with that, and the chance it could re-occur, the plan now was to reverse my stoma and mend the hernia at the same time, as soon as my resection was tested and ready to resume working again, after its rest and recovery.
Another operation ensued, with my same colorectal team to reconnect me. I had never been so happy to see the same anaesthetist on the morning of my reversal operation, who on popping into the ward to see me the day after the operation, sounded amused as he told me I kept saying how pleased I was to be awake as I came round in the recovery room. I was on the same ward as I had been for my first surgery, and recognised some of the staff from when I had been there months before earlier in the year. I was home after a few days, again after very restricted visiting, and me keeping myself amused doing some art, and listening to the radio - that was six months ago.
Things settled down after a while and I had some visits from the district nurse to change the dressing. I quite quickly dared a few short walks gradually building up my confidence in myself, and my newly reconnected plumbing. It takes a while, and isn't without moments of discomfort, but within a few weeks I was healing nicely, and building up and getting back to a good level of normality.
Now I am really beginning to live again and am due to recommence my Let's Bop! evenings once a month, at The John Peel Centre in Stowmarket - https://www.LetsBop.co.uk for those who would like to know more, and maybe come along and dance with me - and the gang. But I'm still in the 'cancer club' and whatever happens, I always will be now.
Jane Spencer-Rolfe 4th May 2022
All photos courtesy of Mick Spencer (except for the selfie to the right which is all my own work!)