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Friday, 18 August 2017

My Unfashionable Cancer Marathon

I've written about my love of running in this blog and since I laced my trainers back up a couple of years ago I've run over 600 miles. I also took part in a two races a while ago 5 & 10K which raised my enthusiasm for competitive running. However, apart from regular road runs I've not entered any more races, until now.
With my 50th birthday looming in December this year and March 2018 marking the 5th years since my kidney cancer diagnosis I thought it'd be a good time to run a marathon. I've entered London 2018 but know that I may not be successful in the ballot so will enter another if I don't get in. Along the way I will be taking part in the Birmingham Half Marathon on Sunday October 15th.
I began training properly for these longer distances back in May but have only just got my charity page up and running. For this challenge I will be fundraising for two charities; Facing up 2 Kidney Cancer and Kidney Cancer Support Network. This way monies raised will go to both kidney cancer research and direct patient care, both vital in the fight against this disease.
Having just passed my 4th year ct scans with the all important No Evidence of Disease there's never been a better time for me to go for it. The incentive to pass the 5 year finish line has seen me take on some serious lifestyle changes. Apart from running I now attend regular yoga classes and my diet is healthier than it's ever been.
With the goalposts ever moving I don't intend to rest easy once the 5 year marker is here, however if I can run 26.2 miles I can face just about anything. For those patients just starting this journey and others whose diagnosis isn't as hopeful as mine fundraising is so important.
You can donate via my Total Giving page, all money goes directly to the charities all 100% of it, no hidden fees.
Thank you X

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.

Sunday, 21 May 2017

3 Huge words - No Evidence of Disease

Well technically it's four but what a beautiful sound they have! After a few weeks of worry followed by the inevitable blood tests and scan I'm happy to say the ct scan found no spread of cancer. Huge sigh of relief.
I'm still struggling with pain around the surgery wound and the ongoing back issue but can cope with that knowing it's not sinister. I've had problems with core strength since my kidney was removed and have learnt my limitations. However, it's always good to test these occasionally...I don't think I'll be doing any headstands in the near future!
Thankfully my running training hasn't been affected too much apart from if I tackle hills so I'm trying to stay on the level as far as I can.
The only downside has been having to go back to the drug cupboard. I'm managing to avoid the Gabapentin and haven't touched the trams. The cocodamol have taken the edge off though but I do feel defeatist when I have to fall back on them. Hopefully this latest blip will soon do one and I'll be climbing hills and standing on my head once more :-)
It's also worth mentioning what an excellent GP I have. He was extremely concerned and made sure I had a full blood test followed by the ct scan. The scan was arranged super quick and he phoned me with results only 3 days later. You can't get better than that - well except a result of NED!

Friday, 19 May 2017

Scan Silver Lining

I should’ve been on auto pilot the number of times I’ve driven to the hospital but I still managed to make a wrong turn.  On arrival it’s normally easy to find my way to the scan reception, today though I got lost in the corridors and had to ask for directions. Booking in is usually straight forward but I’d forgotten to fill the required questionairre in beforehand. By now it was becoming evident I was far more nervous than I’d realised for this scan which I’d been considerably blase about.
Waiting room 1 was busy and conversation centered on what you’re allowed to wear into the scanner. There are always experts present who’ve had x amount of scans and know procedure inside out even though it varies for everyone. I sat quietly and removed my necklace. It was as I removed my jacket that I was brought into the conversation when top expert began admiring my tattoos. This always makes me feel a little uneasy as all eyes are understandably then drawn to my artwork. Thankfully I was first to be called out, much to the surprise of those who’d been waiting longer.
It wasn’t the scanner I was needed for though, I have to have blood tests to make sure my lone kidney will cope with the contrast dye being fed through my veins. Despite nodding that I knew my way, I still managed to miss the haemotology department and had to make yet another detour. More awkwardness ensued when I was called straight through for my blood tests ahead of a waiting room full of impatient patients.  How lucky to be sent from the ct department eh? The usual dialogue took place between me and the phlebotomist, “ Do you mind me going in here?” Points to my colourful arm. “Not if you can find a vein”. Clenches fist and crosses fingers.
Back in radiology I’m now directed to waiting room 2 where I join the previous panel of experts whose current topic of conversation is fluid intake. Some have jugs of water with instructions to drink a beaker every 5 minutes whilst others appear a little left out. One lady thinks it best to get a second opinion as to why she’s not having to fill her bladder, “because we’re scanning your chest”, does little to satisfy her need to be in the bladder gang.
I take a seat by a small table where my obligatory water is delivered with the news I’ll have at least 45 minutes to wait for the blood test results. It’s then I realise my other oversight, I have nothing to read. Phones have to be switched off and there’re no magazines, it really will be a long wait.
One of the experts had been telling all assembled her medical history in a, ‘quid pro quo’ manner with little success and was now attempting to engage me. I conceded I wasn’t a ct virgin and alluded to surgery, the temptation to elaborate and tell her I used to be called Steve was strong but I told the truth. The C word had it’s usual effect and in no time at all my kidney was raised by lung, bowel and breast cancer patients. I felt as though I were part of a virtual game of Operation where Mrs Expert drew out those of us with diseased organs with heavy sighs and tuts.
A member of staff decided to put the tv on for us which I hoped would disctract morbid conversation. It was tuned in to a consumer program dealing with cases of fraud, negligence and accidents which did nothing to lighten the mood. I managed to zone out listening to Gloria Hunniford long enough for the waiting room to almost clear taking with  it Mrs Expert who mouthed, “Hope you’re ok” shaking her head as she left.
Mr Lung and Mr Bowel cancer had entered a debate about whose hospital was the biggest, Lung was under Leicester Royal and Bowel was North Staffs. They then wished they hadn’t asked me as I trumped both with the QE. Time was dragging and I really needed a wee and fidgeted about a little too much. This caused Mr Lung to ask was I ok, I looked a little nervous. I assured him I was fine and prayed my pelvic floor could take the fluid overload a while longer.
Thank God I was next to be called. In some hospitals they canulate you before getting into the scan room, here they put the venflon canula in while you’re on the scan bed. The guy piercing me was very gentle and helped put me at ease by chatting about my chosen outfit which I could’ve worn to a yoga class. He said I looked sporty which made me smile as I lay facing the all seeing tunnel of light. Once the canuar was in place it was business as usual, arms above head and I was left to be fed to the donut.
No matter how many times I’ve been in that situation it never gets easier. Breathe in and hold while the machinery whirrs into action. I passed under my name, hospital number and age illuminated above me into the white donut. Looking up lights flashed around the silver lining of the tunnel and an instruction read, ‘Don’t look into the laser’ which you realise you’re doing a little too late. Backwards and forwards a couple of times before being fed out once more and joined by a nurse.
Now the contrast dye is fed through, the nurse held my hand, massaging the back where the canular held the needle in place. The familiar reminder that in a moment you’ll feel as though you’re weeing yourself and not to worry as you’re not made me smile again. It was made worse by the fact that my bladder was full to burst so I’m never 100% sure I haven’t really wet the bed. Leaving me again I hold my breath and breath a couple more times whilst moving backwards and forwards under the beams before the nurse returns. All done.
I’m led to a cubicle next where the venflow is removed and I’m advised to sit back in waiting room 2 for 10 minutes before attempting to leave. When the nurse ask’s if I’m ok I weirdly feel my tears coming and can only nod. This scan business really can mess with your head. She gives me a knowing look and leads me back to the waiting room.
Mr Lung is now discussing the hazards of travelling in an ambulance, Mr Bowel is agreeing saying he was rolled off a stretcher going along the A50. My ambulance experiences aren’t required and I sit quietly before rising to go home.
After feeding the parking meter I sit in the car to eat my banana and flapjack, a ban on eating before the scan means I’m beginning to feel very faint now. I have to keep my eyes down as patients arriving with nowhere to park are hovering around my car hoping I’ll move off and leave them my space. Three hours after arriving I’m back on the road home leaving behind the images of my abdomen and pelvis. Lets hope that silver lining I’ve just been through is reflected in the results.



Sunday, 14 May 2017

Tunnel of Light

First thing Tuesday morning I will be heading feet first back into that all seeing tunnel of light, the ct scan. Although my annual hospital check is not booked until July my GP requested an urgent scan after a recent appointment with him.
Ever since I lost my left kidney I've had frequent symptoms of water infections, weeing a lot, abdominal and back pain. Most recently this has been accompanied by a feeling I can only describe as a hot flush after I've had a wee. Now I am hurtling towards my 50th birthday so menopausal symptoms shouldn't come as a surprise. However, the abdo pain has become significantly worse, enough to concern me enough to book the appointment with my GP.
I find it's always best to be totally honest and so I confessed that I'd started running again, I even told him I'd entered the London Marathon ballot. He just looked at me over his glasses... I think by now though he knows that I'm not going to sit back and resign myself to the aches and pains, I'd much rather face things head on - as long as I can. I also mentioned my two yoga classes a week and said that there were occasions when I felt the pain intensify if I pushed myself too hard in certain positions. What I didn't say was that after attempting a headstand recently I felt as though my guts had tied themselves in a knot and were about to burst out! I've remained the right way up since then.
My GP wanted to examine me, something I hadn't expected. As he felt around my tummy in the area of my scar I nearly jumped through the roof, it was really sore. It's not something I would naturally do myself so I was quite surprised at how painful it was. After the examination I was sent for thorough blood tests.
Returning a week later I was very happy to hear the blood tests were ok, only one in the red and I'm not sure that was very significant. I was therefore surprised that he'd booked a ct scan but I trust him implicitly and so agreed to it.
Last week I was away on holiday and got a call from my GP surgery, the secretary said that my GP had seen the date of my ct scan had come through, 16th May. The problem was he wasn't happy and wanted it sooner as he'd put an urgent request in. I explained that I was away and therefore unable to go sooner anyway so it was agreed I keep the date given.
I think I've got the best GP, he is totally straight with me and extremely thorough which is why I trust his judgement totally. I can't lie though, the urgency given to this scan has made me ever so slightly uneasy. I'm pretty easy going as far as the C word goes, I've had it, it's been taken out, job done. Now I'm approaching the finish line though, that magical 5 year out of remission date I can't afford backward steps. Feet first it is then...

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.

Tuesday, 29 November 2016

A Kidney Cancer Retrospective

This time last year I was asked to speak at the James Whale Kidney Cancer Fund (now Kidney Cancer UK) Information Day in Birmingham. To say I was nervous was an understatement but it wasn't only talking in front of an audience but also the content that I'd written which worried me.
Not having had the best experience - not that I think you can have a good 'kidney cancer' encounter, I was concerned that my account would frighten any newly diagnosed patients present. When I'd finished reading I felt no better about it despite a nice round of applause and some positive comments, but I remember leaving that day feeling quite lost. I hadn't thought that talking about it helped me or anyone else, speaking out loud was quite different from sitting behind a laptop writing a blog.
I'm spending a lot of time reflecting on what I went through and reading through my blog posts while I work on my book An Unfashionable Cancer. In order to tell my story I've had to fictionalise characters, including myself and my family and most especially the hospitals and medical staff. This means I'm beginning to view my story from another perspective which is helping in an odd kind of way. Instead of me telling the story it's being told through my alter ego in the book and this is strangely cathartic.
One of the things I've begun to realise is that it wasn't because I had kidney cancer that my time in hospital was so awful, that just happened to be the reason I was there. Neither was it my condition that caused delays with treatments, results, appointments or virtually any of the bad practice. I can't deny that being signed off less than 12 months after diagnosis wasn't confined to my being a kidney cancer patient as I'm pretty sure most cancer patients wouldn't be dismissed like this. However, it was again another case of poor hospital procedure rather than something only kidney cancer patients have to suffer.
I suppose what I'm starting to see is the fact I had kidney cancer was a major shock but that my treatment for this should be so diabolical was pure bad luck.
Throughout this blog I've not included my family much, neither have I elaborated on my life as a whole. In the book I'm able to include my family and friends as well as show how kidney cancer affected my life in general, from fashion designer to cancer patient.
This too has highlighted just what a radical change I went through and I've been able to reflect on how I felt then and what I feel now. For a long while I was angry and confused and felt the lifestyle and business I'd been running was superficial and had contributed to my illness. Now I can see that it was my illness that made me feel that way, I was going through a terrible time and couldn't make sense of what was happening so instead shut everything out.
I've got a long way to go to finish my book and expect it will continue to be an emotional rollercoaster. In the meantime I have returned to work fully and although not doing all the fashion shows and photoshoots I was before, I am enjoying looking back and feel a lot of pride in what I achieved, definitely a step in the right direction.