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Showing posts with label blogs. Show all posts
Showing posts with label blogs. Show all posts

Thursday, 27 July 2017

No Holds Barred - A Good Appointment

I'm currently still in the process of putting this blog into book format. To do so has meant fictionalising all of the characters, myself included along with hospital names, places etc.
I've edited the blog itself considerably and it's always written in retrospect, I don't publish events as they happen. The book will be largely unedited, hence the fictionalisation - I can't possibly use real names or hospitals, it wouldn't be fair.
Not as much actually happens now I'm four years on - thankfully! I have however recently had my four year check up at the Queen Elizabeth hospital Birmingham.
This was my first proper appointment with the specialist nurse and having found her so helpful when we met initially last year I was really looking forward to seeing her again.
It was an excellent appointment and she was so helpful answering all my questions and reassuring me no end. We're almost the same age, a year apart and have the same birthday. Even better, she's also a runner - a very good one!
The following is my write up of how that appointment began, from a shaky start I came away feeling pleased that I'd made the change to the QE.
The journey I've been on via two other hospitals is not the norm, in an ideal world I'd never have had to move. This appointment gave me the opportunity to tell the nurse what events led to my being one of her patients. I needed her to know what I'd been through to better understand my fears. What I really wanted was for her to know who I was and why I was really there. The account I gave was the unedited version.

My glasses were steaming up. I’d had a few tears earlier, it was probably that along with the heat of the car. I’m used to 6 gears and air con but my Mom’s Micra screamed at over 60 miles per hour and the blowers felt like they were on gas mark 6. Today’s journey was not pleasant but I was determined to get there.
The QE has a few different approaches so I’d left my phone’s sat nav running for when I neared the hospital. Unfortunately, as I turned off the A38 so did my phone, I glanced down to read, ‘phone apps are shutting down due to overheating’. Brilliant.
The hospital loomed up ahead of me, the suns rays illuminating it’s spherical outlines and then, like a mirage it vanished. I negotiated one mini roundabout after another, catching glimpses of the monster medical centre then losing sight straight after. Signs beckoning me towards my destination, I followed excitedly catching sight of a multistorey car park. Pulling up to the barrier I read, ‘Staff Only’. Shit!
Taking a deep breath I reversed back onto the neverending QE highway and continued circumnavigating Britain’s biggest hospital. With twenty minutes to spare I managed to locate some patient parking near the old building which meant a lengthy treck over to the new centre where outpatients was held.
The beautiful weather had brought people out into the sunshine. The lawns in front of the main entrance resembled a park, people lay reading books, eating ice creams and chatting with family and friends. The difference here was the number held up by crutches, struggling with slings and laying on trolley beds with drips attached.
Once inside the huge entrance to the main building it’s hard to know where to look, every which way – including upwards, is bustling with activity. I passed through the first reception area into the second to await my call to the third. Each seated waiting area is distinguished by it’s seat colour, I was sent to the blue chairs to watch scrolling screens that intermittently flashed up patients names with instructions of where to go next. I looked around, all heads faced the screens, no one wanted to miss their turn. I’d planned on going through my notes for the nurse but found myself glued to the screen, I was still ten minutes early.
It was now that I felt alone. I’d insisted on going by myself, no point taking anyone else along, after all it was to discuss my results and ongoing care. Sitting in this huge hospital amongst so many other patients now made me feel quite lonely.
Maybe it was to do with the call I’d had earlier though, that had really knocked my confidence. I’d been waiting for this appointment a long time. It was to be my first one with a specialist nurse and the first at the QE since I met the consultant when first referred. For me it was the first normal appointment in 3 years and I’d prepared questions that had been with me almost that long.
Earlier that day I’d had a call from the nurse suggesting I may want to have my blood tests done locally. She said as they were happy with my scan results and it was a long way I could save myself a journey to the appointment. I’d been stood in Morrisons with my trolley and I was completely taken aback. Having prepared for this day for so long, sorting the car, writing my notes, was she seriously suggesting it may be a waste of my time? My tears started to fall. I explained how important today was to me, how I’d hoped it would help put past bad experience behind me. Was my 3rd hospital also trying to get rid of me.
The nurse was very apologetic and reassured me it was nothing of the sort, she genuinely thought I may find the treck over a waste of time. I remained firm that I needed this appointment and so it was left. Now as I sat waiting amongst a sea of patients in this vast space I felt very small and insignificant. Part of me just wanted to walk away, what was the point?
In no time I saw my name splashed across the screen with an arrow directing me onwards. I made my way through to the final waiting room and had barely sat down when my name was called, bang on 2pm.
The specialist nurse, whom I’d met once before came to greet me and smiling took my hand and led the way to a consultation room. She was lovely, just as I’d remembered her. The words of my daughter rang true in my head. After the call earlier she’d spoken to me and said the call I’d received that morning was a mistake, the nurse had simply misread things and called it wrong. To be fair she had no idea what I’d gone through previously and why I was now at this hospital.
Reaching into my bag I took out my prepared notes, she was about to find out.

Monday, 13 March 2017

That Time of Year

It's exactly 4 years since I was whisked off to hospital and discovered I had kidney cancer. It's a weird one because as anniversaries go it's not a particularly pleasant one but at the same time it's unforgettable and stops me in my tracks.
It should be the time of year when I'd  be having my annual scan but due to my haphazard hospital record, scans have been missed, forgotten and therefore later each time. I received a letter telling me my next appointment would be April 24th, I've had this date for several months. It occurred to me recently though that a scan date hadn't come through so I phoned to check it out. I was told that the April date was a mistake and the consultant hadn't asked for me to be scanned until June and so my appointment will be moved back until the results are in.
This is totally understandable and really not an issue, I mean scans aren't something to look forward to anyway. Why then, when I put down the phone did my tears come? I think it's the need to know that everything is ok.
Four years is good going and so close to that 5 year goal that I don't want it to drag on, I want my reassurance at around the same time I have that anniversary. It's the time I can't avoid thinking about it so it'd be good to get the scan and annual check up over and done with.
On that fateful day 4 years ago I was blissfully unaware of the tumour lurking in my kidney and my wardrobe held very little by way of comfortable clothing - ever the fashionista. I can laugh now about my poor husband frantically searching for something suitable to put me in as I flat refused to go to hospital in my jimjams. The only trousers he could find with an elasticated waist also had a lining - Gwen Stefani obviously didn't design them with emergency department urgency in mind. As John attempted to ease me into them I was sliding around the laminate floor in agony, oh the memories...
Fast forward and I not only possess a large quantity of lycra clothing but I've also diversified from alternative fashion to designing and making active wear and I love it. In keeping with my new comfort driven wardrobe I've been doing yoga for the past 3 years, I run whenever I can and eat more healthily than I've ever done.
For me this is proof that cancer, although being an almighty bastard that sneaks up and takes the legs from under you, can sometimes lead to more positive life changes. I readily admit that I'm one of the lucky ones, although still on the radar awaiting the 4 year all clear I'll only have 12 more months left till the 5 year goal.
It's also steered me to another passion, writing. Early ambitions of becoming a journalist never materialised and I'd more or less given up until I became ill. The need to keep a diary led to this blog which in turn I'm now putting into book format. To help with this process I joined a writing group and have been churning out short stories and poems ever since, who'd have thought?!
Cancer in a bizarre twist has given me a new lease of life, one where I'm finding real purpose in my work and being able to express myself through writing. It's also failed to take away my sense of humour and to mark this auspicious anniversary I chose those Gwen Stefani trousers to wear today. We've come a long way together and I reckon I'm prepared for anything now.

Sunday, 30 October 2016

It's All Write

I've been asked a few times whether I'd turn this blog into a book and I'd dismissed this for a long while. The main reason for not wanting to share the whole story as it were is because I would be publishing information about people and places, some of whom would rather I not share it. 
Although there is of course mention in this blog about where I was treated and it's not difficult to work out by whom, some of my experience wasn't pleasant and I have no wish to raise issue with either the hospitals or the doctors.
Originally I wrote notes to record what was happening to me, the blog grew from that as I felt publishing it would highlight both the disease and the need for better treatment and research. At no point, despite failures with my care, did I want to pursue a complaint, it wouldn't have made me feel any better.
I suppose what's been hardest to do is to have had to search for information about kidney cancer, push for treatment options, even plead for results. This is why my blog has been so important to me and has obviously been read by so many others, there's a need to know more.
A few months ago I began reading back through my blog and going through my medical notes in order to find a way to put it all into a book format. There was only one way forward and that was to fictionalise my account, a story based on true events. No real names or places means that I can elaborate on what happened and produce a comprehensive story, leaving nothing out.
While writing the blog I've been careful not to mention some events as they're either too personal to me or else to someone involved in my treatment. By novelising this I can bring individual characters to life - just not name and shame. It's also a little easier to write about some of the things I found it hard to publicise, the gory details.
It's not all medical terminology and surgery scars, it has given me the opportunity to give a bit of my back story, the fashion business that came before and which inspired my blog title.
My book An Unfashionable Cancer is now well under way and will bear the same tag line;
'From running a fashion business to waking up with kidney cancer, a journey from fashion victim to cancer survivor'
I've a long way to go still as although the pages are already there I am having to rewrite every part, no easy task. My own story is still ongoing but I'm over the half way point now, three and a half years into that goal of five years cancer free. By putting the whole thing into print I hope I'll be able to close this chapter of my life and finally move on. Unfortunately though many others are only just waking up to kidney cancer so the need to raise awareness of this will continue.
If I can help kidney cancer awareness either through the blog or the book it'll be a story worth telling.