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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.

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.

Thursday, 25 August 2016

Best Letter Day

Since my pain management appointment I have received a letter from the consultant, it is the best letter I've had from a hospital professional, ever. From the start it's evident that the doctor listened as he has written in detail about me, of when and how my cancer was discovered, my treatment including where I was treated and why. He speaks about the pain I've experienced and how that has been managed so far, the drugs I've been prescribed, the way they made me feel, everything.
The letter then goes on to outline the suggestions he has made for managing the pain from now on. At the appointment he not only detailed the ways in which I could ease the pain but he found examples on the internet. One suggestion was trigger point massage with a ball, another was a TENS machine along with massage and he didn't dismiss acupuncture. For each of his suggestions he showed me examples and even advice on where to purchase - apparently a toy dog ball can be equally as good as a more expensive massage ball.
All of this was in the letter which was nearly 2 pages long, the very first letter of this type that I have had since my diagnosis over 3 years ago. What a difference it makes, how much better you feel knowing that the consultant charged with your care actually 'cares' and cares enough to detail it in writing.
The very worst example of a letter I had was my initial diagnosis letter which I should have received soon after my surgery but actually arrived nearly 2 months later. This contained the nitty gritty, or should have done. It actually read less like a letter and more like a list. What made it worse was that I'd had to have a bone scan in the meantime and to save an explanation of that the consultant simply wrote 'bone scan clear' across the top of the letter he should have sent weeks previously. Not only that, this latest result appeared in the window of the envelope so the postman saw it before me!
So I am now taking the advice given and currently sit wired up to a TENS machine which is becoming oddly addictive. I'm unsure of whether it is actually relieving the pain or just diverting my attention from it but either way it's helping when it's on. The trigger point massage ball helps to a degree although I have to hide it from the dog!
The letter has helped tremendously though in restoring my faith in consultant care.