Six Years & Counting

In the 12 months since my discharge from the Queen Elizabeth Hospital, Birmingham, I have done my utmost to distance myself from kidney cancer. This has not been easy.
For one thing, it's brought a lot of guilty feelings surrounding the support I received as a patient. I was fortunate to discover Kidney Cancer UK and the Kidney Cancer Support Network, both of which offered unfailing help and excellent advice. Having been an established Twitter user prior to kidney cancer due to my fashion business, my followers were subsequently given lessons in medical terminology when my cancer diagnosis was made; hence the fashion victim to cancer survivor tag. Getting signed off was like being cut free and as such, I dropped away from the group pages and forums that had been there for me during treatment. It makes me feel I've turned my back on others needing that support now. I just needed normal, without cancer if that makes sense?
I did, however, discover running during my recuperation which in turn led to some fundraising. Again, my Twitter feed became a source of running and nutritional posts during this two year period as I went from 5K to a marathon, raising over £2,000 in the process for the charities. It also introduced me to Facing up 2 Kidney Cancer another charity that gave me wonderful support.
Getting back to work post-cancer wasn't easy. I had a couple of false starts following health setbacks and a drop in confidence. The fashion industry is a fickle business as well as being extremely superficial, at times it just didn't sit right with me. I sold my vintage stock and dropped the tribute work to concentrate on the ethical side of my business, reworking and upcycling clothing. I then switched track completely and went forward making activewear, influenced by my running habit and new found love of yoga. Before too long I was doing both and the pop fashion was creeping back in. Now I pretty much do it all! One business idea I am proud of is the hospital gown design I created. Obviously, this stemmed from having to wear so many gowns myself that I determined to make a more user-friendly option. The Coverstory Dignity Gown is still in its infancy but will definitely remain part of my business thanks to my kidney cancer experience.
In hindsight, I do feel I can thank kidney cancer for my new direction. There were lifestyle changes I needed to make. A cancer diagnosis is a drastic way to stop you in your tracks but it gave me more to live for.
Writing has always been a part of my life and post cancer it was a natural way to make sense of what happened. The blog progressed and became the start of a book which led me to join Tamworth Writers; another positive step forward.
I can't write and update without mentioning my current health status. As a patient, I researched frequently what the prognosis of a kidney cancer diagnosis would be. My tumour was 7" and contained in the left kidney. When it introduced itself it haemorrhaged, which is why my diagnosis was sudden and shocking. I had no symptoms that I can remember so being rushed via blue light ambulance that morning was a total head f**k. Maybe because of that, I'll never be entirely confident everything will be ok. I was left with some nerve damage as the surgery was invasive due to the large bleed, this has left me with ongoing back and abdominal pain. I get frequent water infections, not sure why? I have regular blood tests for kidney function and have recently had issues with substantial bruising, again not sure why (I've not been fighting). All in all, cancer in whatever form it takes never really leaves you. They can cut it out, zap it with chemo and radiotherapy or feed you concoctions of drugs but the seed of it remains. Whether you choose to believe that is a real entity or just the seed of fear in your head is again not of your choosing. On good days it's a bad dream on others it's as real as a diagnosis. That is my experience and the legacy kidney cancer left.
On a final note, I'd like to thank the Tamworth Wellbeing & Cancer Support Centre which I've visited frequently. The work they do there is incredible (and they now have the coolest charity ambassador in Joe Lycett!) From the first time I stepped through their doors several years ago I had an epiphany, that realisation that I was part of a select group, I had cancer. Before that, it was someone else's problem, another person's illness. Cancer introduced me to some of the kindest most thoughtful people I've ever met, many form this wonderful charity.
For everyone else who has entered my world as a result of kidney cancer, thank you - life wouldn't be the same without you.
Debbie XXX

Finish Line

It's taken me a week to sit down and write this post. Partly due to how busy life is at the moment and also because the news is still sinking in. I'm all clear. No evidence of disease. Five years cancer free.
Last Monday I travelled over to the Queen Elizabeth Hospital in Birmingham to meet with my specialist kidney cancer nurse to find out my scan results. I hadn't been expecting good news. Over the past few weeks I've been feeling unwell. I'd had a suspected water infection and then after routine cervical cancer screening had been referred for another scan due to bleeding.
My five year renal scan and chest x-ray came first and then a couple of weeks later a lower scan including bladder and ovaries. During this time I began to suffer from dizzy spells and was prescribed antibiotics. All in all I wasn't on form but had thankfully completed my marathon run.
I travelled to the QE by train having planned to meet my husband there. This gave me plenty of time to gather my thoughts which over the previous week or so had been far from positive. During the past five years I'd never felt as low and certainly hadn't worried as much about results. In fact I've been extremely optimistic for the most part. However, the combination of feeling unwell and the symptoms had me fearing the worst. Add to this not having received a letter of all clear and my mind was in turmoil. I couldn't get this far and not cross the finish line. The five year milestone had become my focus since training for the marathon, this story had to have a happy ending.
The train took me straight to the University station which is a short walk from the QE. As I was early I sat a while people watching in the large open foyer, like so many others there I suspected this could be a life changing day.
The traffic had been horrendous and parking wasn't easy which meant that Johnny met me with only five minutes to spare. We made out way down to the outpatients waiting area where we had only a short wait before being called through to another waiting room. Before long my name was called and the nurse, Susan greeted me with a hug.
When we last met - which was only our second time due to me having switched hospitals and our first without the consultant, I found out we had a lot in common. We were born on the same day a year apart and Susan was also a runner. I'd emailed in advance about my marathon and brought along both the half and full marathon medals to show her. We got chatting about running and Susan gave me a donation for the kidney cancer support network fundraising. I was so pleased John was there to meet her too and we talked about marathon training and how busy I was making wedding dresses. It then transpired that Susan had also been a dressmaker making holy communion dresses. The similarities kept on coming.
It was time to get down to business and most important, results. It was then that Susan read from the scan report which told me that everything was normal. My remaining kidney was a good size and the left side renal bed showed no evidence of metastasis. The relief that flooded me was immense, my tears were falling before she'd finished reading. I had held so much worry and tension inside and it began draining away as the news sunk in. As I mentioned at the start, I'm still registering it, I feel as though I've cheated somehow and I'll be caught out.
Better still, I was then told that I could be signed off from consultant care and go back to visiting my GP. This isn't to say that if I had any concerns I couldn't contact Susan in future but I wouldn't have to make the journey back and forth for scans and clinics. I confirmed that this was exactly what I wanted and it was time for me to say goodbye. First though I had to have some blood tests as my kidney function hadn't been checked for twelve months.
Susan walked us out to the waiting room and we hugged once more. It had taken nearly four years for me to see a specialist nurse. Heartlands didn't have one and I wasn't at Burton long enough to know. It had been worth the wait to meet such a dedicated and sincere professional, thank you Susan you made a dreadful experience so much better.
The blood test was straightforward and we were soon on our way home. I kept repeating the same thing, it's over. I am still saying those words to myself, I really am one of the lucky ones. I couldn't wait to phone our girls with the good news and my Mom and family. Johnny took me for a meal to celebrate and later I went through my contacts texting everyone my wonderful results.
The rest of the week was pretty normal. I've told a few more people and had plenty of hugs and well wishes but I haven't felt the closure I expected. It's like the cancer has left a scar that I can't seem to cover up. Maybe it's early days and kidney cancer is still part of my life - I'm writing about it now. Or maybe this is how it is, like grief. It leaves you but takes a little part away and that small piece leaves you questioning what might have been.
In my case I had a successful fashion business, would it have grown? Is it time to revisit that now? Did cancer take my confidence as well as my kidney or is that just my age? So many questions still remain. Was it something I ate? Did I drink too much? Is it hereditary? Oh and the big one, will it come back?
Who knows?
What I do know is that I've ticked off the marathon and crossed that ultimate hurdle of five years cancer free. I've set myself a task of putting this blog into book form, a job which has taken a back seat lately due to the small matter of a wedding dress and four bridesmaids to complete in the next four weeks for our youngest daughter. Add to that the wonderful addition to our family of a first grandchild, Rudy Francis who has of course needed a lot of cuddles.
When I started this blog I'd had a Rude Awakening. One day changed my life for ever. Not everything that kidney cancer has brought about has been for the worse though and if it's possible to make the best of a bad experience I dont think I've done too bad. I'm most proud of the marathon which, to date has raised £1535 for Kidney Cancer Support Network and Facing up 2 Kidney Cancer.
Thanks to everyone who's supported me throughout. I'd like to think my kidney cancer experience can offer a little hope.

My Unfashionable Cancer Marathon

It’s 8.57 on 13^th May 2018. I’m amongst around 2000 runners waiting for the countdown to Shakespeare Marathon in Stratford on Avon. Alongside me on the other side of the railings are my husband, youngest daughter and her fiancé, more excited I think than I am.

I’m wearing the same gear I had on for the Birmingham Half Marathon seven months ago, green vest printed on the back with the charities I’m running for and on the front Missfit, my business and social media name.  My leggings are a multicoloured design called Hip Hop that I made myself. The race number 1018 is attached to the front of my vest top with race clips that read ‘Run Like You Stole Something’ and my Asics trainers have a colourful graffiti pattern, I guess I’m quite noticeable. Normally I run in a cap but I’ve opted to wear sunglasses and hope the sun doesn’t make too strong an appearance, I overheat easily. The most important piece of kit I have on is my Garmin watch to help pace myself.

During training my pace has increased the further I’ve run. Previously I set an average time of 8.30 when running shorter distances. I’d ambitiously set out to run a marathon pace of 9.30, what a fool I was. The seconds ticked over into minutes the longer I ran until I hoped for a marathon pace of around 10.20. The bib number 1018 gave me hope that I may match that on race day.

As we wait in Stratford town centre I’m approached by a man who holds out his hand and tells me what an inspiration I am, he’s read the local news story about my marathon attempt. All around me are runners wearing charity vests. MacMillan used to be the most popular with Cancer UK always having a good show. Today it seemed that Mind, the mental health charity that came out tops probably to coincide with mental health awareness week. Next to me is a very nervous young lady, it’s her first attempt at a half marathon, both full and half start the course together with full doing a second lap. She’s envious of my support team who are encouraging me as we wait for the klaxon.
The guy starting the race is Steve Edwards, world record marathoner running his 822^nd marathon this will be his 22^nd Shakespeare Marathon the first having been in 1985. The start rope is lowered and we begin to move forward, slowly at first then momentum gathers. We cross the timing mat at the start line and the small chip attached to everyone’s trainers is activated, the race has begun. Some of us will be running for just over an hour others for more than six hours. The distances each have a different coloured bib, for the marathon mine is red, most around me seem to be white for the half.

For the first part of the run we skirt around the town centre where support from spectators is excellent. Stratford on Avon is the most picturesque town I’ve run through but my focus is on getting into a steady pace.  Negotiating bends and keeping away from the barriers takes concentration with so many runners for a while, I have a dread of tripping over and ending my race at the beginning. I’d been positioned relatively near the front of the crowd at the start which meant I was being passed by more experienced and/or energetic starters. Avoiding feet and elbows was tricky until the road widened and we ran out into more suburban streets then out for a short stretch on the Evesham Road.

By this time the field was evening out more. We reached the first drinks station just after mile two, I always run with my own water bottle.  For this race I added an electrolyte tablet as with one kidney I worry about dehydration. In a running belt I also carried two energy gels and some jelly babies. I don’t normally run with my phone but carried it so that I had contact with my husband – just in case. For the next couple of miles we wound around country lanes and then started to ascend to the village of Luddington. My hill training paid off as this barely challenged me. There was already a queue waiting for the loo at the first WC station just before the four mile marker, thankfully that urge wasn’t on me, yet. We wound around more country lanes and past houses whose occupants made the special effort to stand out and cheer us on. Kids holding bowls of jelly babies and motivational music along the route are always welcome together with the shouts of encouragement and there was no shortage here. My favourite resident was the guy spraying passing runners with a hose pipe, I was straight through that no messing.

By now runners had begun to settle in to their pace and small groups were forming. I’d run past a couple of people only to be overtaken by them a little further on. Faces and charity vests became familiar as well as running styles. Quite a few runners were ‘Jeffing’ by now, the run/walk method so called as it was taught by Jeff Galloway as a way to increase distance and endurance. I was overtaken by a guy dressed in full Shakespeare costume who must have been sweltering as the heat was really turning up by mid morning. Then I heard an odd squeaking noise approaching and turned to see a man carrying what appeared to be a large backpack heading past me. As he moved in front I could see it was a huge rubber boob complete with nipple, two hand prints and the slogan Cop-A-Feel, a breast cancer charity. I ran behind the squeaky boob for about 4 miles.

As we neared mile eight the hill appeared. I’d heard about Rumer Hill and my husband drove me over it a couple of weeks before the race to familiarise me with the course. Facing it on foot was another thing entirely but I kept running, reaching the brow was a real achievement. Just after this on the first lap we turned off and headed back picking up the Greenway near to mile ten which is a gritty surfaced trail along a disused railway line. This track had a slight incline and by this time the sun, which had hovered around all morning decided to come out and play fully. For me this was the toughest part so far, there was hardly any shelter from the suns rays and the incline was taking its toll. The worst part was knowing that shortly before mile twelve we would split from the half marathon runners and it would be game on for the big one. The cut off point for the full marathon was if the first 11.9 miles was not completed in 2hrs25. I passed this point at around 2hrs5.

We crossed an old iron bridge spanning the Avon before reaching another drinks station and WC point at the divide. The most welcome sight here were volunteers handing out wet sponges from a large barrel. I made good use of one on my head and back. It had dawned on me earlier as the sun beat down that I’d forgotten sun lotion and I could feel myself slowly frying. As we parted from the shorter distance and headed past mile twelve I felt like crying. It was the realisation I had it all to do again and more.

As we curved around back out onto the main road I knew I could take it easier as I’d reached the marathon stage before cut off. It wasn’t long before I stopped to take a walk and text my husband to let him know I was on lap two. He’d hoped to see me at the half way point so I’d presumed he’d not made it on time.  It turned out he’d been directed to the wrong place and saw only the half marathoner’s heading back.

I checked my Garmin as we reached the half way point 13.1 miles, my personal best had been 2hrs 8 minutes and I was falling behind this by over five minutes. I heard a couple of runners behind me discussing how it had taken us longer to reach this stage than it had for Paula Radcliffe to complete a full marathon. The thought of running the entire course again was now beginning to fill me with dread. The sun was getting stronger and shade we’d enjoyed earlier now all but gone. Approaching 14 miles we were leaving the town behind again and heading out on country roads.

It was now more apparent that more than half the field of runners had opted for the half marathon. Those of us still going were spread out along the undulating roads, at some bends I felt as though I were running alone. Climbing the hill at Luddington again was tough, I’d taken to Jeffing myself by this time and hills were a definite walk pace. I also took advantage of the portaloo, no queues now, not even another runner in sight. On we ran through picturesque villages, past pubs which were by now filling up with lunchtime customers who cheered us on. When the 18 mile marker appeared I knew what would be next, Rumer Hill part two. This time I don’t think I could’ve run had I wanted to, my legs were beginning to feel painful. I couldn’t even trot down the hill as my toes were also feeling sore. I took advantage of my more leisurely pace this time to take a photo from the top of the hill, it was a beautiful view.

This time around we kept straight on taking a longer route through Long Marston and down to join Greenway South. The 20 mile marker felt surprisingly good as I told myself it was just a 10k run to the finish, 10k’s nothing, I run it often, just not after 20 miles! What I didn’t anticipate was the ferocity of the sun by this time. I’d already topped my water bottle up once and by mile 21 had to stop to refill it again. There were very few running now, I think we were all Jeffing. Passing each other back and forth. I’d set my sights on a woman called Hannah who’d passed me earlier and was determined not to let her out of my sight, but as she edged out of view I knew I was fading.

Mile 22 was my wall. I’d text my husband to let him know how far I’d got and tried to remain positive but I felt beaten.  Although there was only just over four miles to go it felt an impossible task. The gravel pathway seemed to keep rising along the horizon and there was little shelter from the sun. I could feel my shoulders sizzling and my head was aching. As for my legs, they didn’t even feel as though they belonged to me. At mile 23 there came relief by way of another bucket of sponges, cold water down the back of my neck gave me a boost and I pushed on. I took a photo of the mile 24 marker so my husband would know I was nearing the finish line. Normally the remaining distance would take me around 15 minutes but with my pace dropping to a staggering (literally) 11 minute mile it was going to drag. Along this last stretch was the official race photographer who called for me to look across and smile. Surprisingly I look remarkably fresh in the resulting photo – obviously wasn’t pushing hard enough!

The final stretch took us off the Greenway and back along a road before a sharp turn down a small track that lead to the recreation ground and finish line. I managed to maintain a steady jog now, every muscle in my legs ached and my toes were very sore but I wanted to run to the end. As the main field came into sight so did my husband who, after shouting encouragement while I plodded towards him then ran alongside me till we reached the final stretch. I was on my own running down to the finish, my name was announced and I was  praised on my choice of leggings. Crossing that finish line was incredibly emotional. I’d imagined it over and over, from first applying through training and along the route that day. The finish line was hugely significant marking 5 years since my cancer diagnosis. My daughter and her fiancé held up a banner alongside my husband as I crossed the line. The medal was hung around my neck and I collected some water and a much needed banana.

My tears came as soon as I met my family. It was such a huge achievement. I’d proved that a cancer diagnosis wouldn’t hold me back in any way. In fact I’d achieved far more in the past 5 years and was probably fitter now than ever. As for my time, 5 hours 15 minutes and 52 seconds. A far cry from my predicted 4.30-5 hours but a result I’m extremely proud of nonetheless. Things I learnt from running a marathon; there’s nothing wrong with jeffing, respect those hills, don’t forget your suncream, carry business cards – I’d have sold loads of my leggings and most important it’s tougher than you think. I said that this would be my one and only marathon and I stick to that statement. Many people have told me I’ll change my mind but I’m very sure I won’t. Long distance running is not for me. I ran a marathon for a specific reason, I trained thoroughly and ran it to the best of my ability. I chose Shakespeare Marathon because it was so well run with more than half the proceeds going to local charities. The marshals were all volunteers who along with the organisers made the race extra special. As I'm also writing a book it seemed the most apt marathon to enter and of course it's a beautiful setting - I'd highly recommend it.

Thank you so much to everyone who has supported and sponsored my milestone race. To date I've raised over £1400 which will go to kidney cancer research and patient care via Kidney Cancer Support Network & Facing Up To Kidney Cancer.
I am now a marathon runner and a cancer survivor.

The Final Countdown

In 2 days I take a trip to the Queen Elizabeth Hospital in Birmingham for my 5 year scans. I’m hoping the results will mean that I can be signed off from specialist care.

In 5 days I run my 1^st (and last) marathon to mark the anniversary of my kidney cancer diagnosis. I don’t believe fate should be tempted, especially when I’m so close to the final hurdle so I’ll wait for results before declaring myself a cancer free zone. Crossing the finish line will still be a huge milestone.

Over the past few weeks I’ve seriously doubted my sanity for taking on a marathon, the training has been gruelling at times. Coupled with the fact that I’ve had a couple of bouts of illness that have interrupted my running regime. I suffered with a cough over Christmas and New Year and most recently had an infection which took me off my feet for a couple of weeks. It began to look unlikely that I’d be able to run after all. Thankfully I’ve managed to bounce back from both and take up where I left off.

This weekend I finished my tapering runs and for the first time in ages felt the enjoyment of running once more as it was a gentle 5 miles. I just don’t think I’m made for long distance running. For one thing it drains me of energy both during and after. It’s boring, after mile 6 I begin to wish I was back home doing something more interesting. It makes me way too hot, a mile in and I’m cooking so by mile 15 I’m on fire! Apart from all that I just don’t see the point. Rather than keeping me fit it’s playing havoc with my joints and back. I’ve had to change my diet by increasing carbs then taking in protein. This in turn has meant my shape has changed, I’ve never had thighs this big! On top of that I’ve gained nearly a stone, how does that figure when I’m running for around 5-6 hours a week at least?

Today I was visited by a photographer from the local newspaper. I contacted them to see if they would cover my story and they wanted a picture of me in my kit. I’ve received a lot of support online from the organisers of the Shakespeare Marathon who are going to announce me at the start line. My Total Giving page has nearly reached £1,300.00 which is above and beyond what I’d hoped to raise and the support keeps coming. The KidneyCancer Support Network have sent me a teeshirt for the day and have been cheering me on from day one as have Jon & Sarah Birchall for Facing up 2Kidney Cancer. It only remains now for me to run that 26.2 miles.

Now, as the day gets closer I am reminded of why I took on this challenge. The fact that my 5 year scans fall only 3 days before the event makes this even more poignant.  I had hoped for those 3 little words prior to my run, No Evidence of Disease but I’ll have to wait until June for the appointment that delivers that news. Support from my family and friends has been tempered by the concern they feel for the task I have ahead. I know this isn’t going to be a walk in the park.

Thanks to everyone who’s sponsored me so far and given me so much encouragement. This final stage is all down to me...

Donate here My Unfashionable Cancer Marathon

5 Year Finish Line

Today marks 5 years since I was diagnosed with kidneycancer. Strictly speaking I didn’t actually hear the word cancer until the following day. What I did hear was whispering nurses saying, “She doesn’t know yet” and a doctor mentioned a ‘mass’ in my kidney. Either way Wednesday 13^th March, 2013 was the day that turned my life upside down, a day of firsts and the last time I would be carefree about my health.

It would be my first (and second) ride as a patient in an ambulance complete with blue lights, my first CT scan and hospital admittance other than pregnancy. Before that day I was blissfully unaware of the 7cm tumour growing inside my left kidney. Plans that day had included completing a catsuit order for a Clothes Show customer and arranging a photoshoot for my new collection. The tumour however had other ideas and decided to make itself known by hemorrhaging, an action which in turn caused the excruciating pain which triggered my collapse.

I’ve made no secret of the fact my hospital care has been sketchy to say the least. It still upsets me when I look back as memories of my treatment are as painful to remember as the cancer itself. The decision to put my blog into book format has exacerbated these feelings as reading them over is like reliving it again. I’m currently on my third draft of the Unfashionable Cancer novel, there are parts I want to rewrite and others I want to erase but it’s real life and I can’t change what happened.

The way I chose to turn my life around has been through fitness. First yoga became a routine part of my week following physiotherapy sessions for nerve damage. A year later I began running, initially in Race for Life with my daughter where I rediscovered my love for the sport. An athletics club member in my youth I’d run regularly until my teens at middle distance. Getting back out there was a revelation, it not only improved my fitness but healed my mind. Running somehow gave me clarity and headspace that has helped me come to terms with all that’s happened.

I took part in a couple more races at 10k distance and then set the ultimate goal, to run a marathon for my 5 year cancer anniversary. Last October I reached the half way mark when I ran the Birmingham Half Marathon, I couldn’t believe how emotional it was crossing that finish line. On Sunday May 13^th I will be taking part in the Shakespeare Full Marathon, Stratford on Avon. As I’m working my way through writing a book it seemed an appropriate event to enter as well as being one of the smaller marathons; I wasn’t keen on the huge crowds at Birmingham.

This evening I was back out after a break of a couple of weeks from running, it still doesn’t come easy but I’m determined to do this. I haven’t run more than 14 miles so the next 8 weeks are going to be full on but if I’m going to do it, I’ll do it to the best of my ability. It’s not just my 5 year goal I’m marking, most importantly I want to raise funds for early diagnosis of kidney cancer and patient care. My fundraising page can be found here An Unfashionable Cancer Marathon where there’s more info about the charities Kidney Cancer Support Network and Facing Up 2 Kidney Cancer.

Kidney cancer is still an unfashionable cancer but it’s on the increase and desperately needs more funding. I am one of the lucky ones and by putting one foot in front of the other I am beating this disease and can hopefully help others do the same.

Designed to Run

Marathon training was halted before it began as I started the New Year with remnants of a cold that had left me coughing uncontrollably. I coughed my way into 2018 and continued in this vein for four weeks before giving in to see my doctor.

The height of my concern that I was unable to run. I had tried a couple of miles which left me hardly able to breathe and leaving anyone who saw me cancelling their New Year resolutions to keep fit.

After examining me the GP said my chest sounded ok and temperature was fine but to be on the safe side he’d send me for an X-ray, more precautionary in light of my cancer history. I was fine with this but there is always a niggling anxiety when being zapped with X-rays, the what ifs.

The following day I turned up at the local hospital for my dose of radiation, one shot and I was all done. Wearing the hospital gown rekindled my creative desire to get rid of these dreadful NHS robes in favour of the one I’d designed a few years earlier. As such I’ve since recovered the gowns I made and will get back to you on progress shortly...

Not being able to run for so long has been incredibly frustrating when I have a marathon to train for. The only plus side to being ‘on the bench’ is that I’ve had more time to write. My book An Unfashionable Cancer Marathon is finally taking shape after 3 format changes, I’m settling back into a writing rhythm.

One of the things I needed to tie everything together; running, writing and business was a design, a heading. Something  that said exactly what I’m doing and why. For this there was only one person I could got to, Justin Robert Price.

Justin has been my go to designer for over 12 years now and from day one was able to turn what I wanted to project into the perfect imagery. Well he’s gone and done it again with a design to head my Total Giving page amongst other media. It projects my message loud and clear from fashion victim to cancer survivor through running. Love it.

Now I just need to get back out there and do it!

Unfashionable Cancer Marathon

It's no secret that I applied to run the London Marathon this year. To be fair at the time I really did want to take part. I knew that ballot entry was a long shot but it’s not unknown for first timers to get in.

As October drew nearer and results of the draw were imminent I’d begun to change my mind. When the magazine finally dropped through the letterbox I was praying I’d been unsuccessful. On seeing the word ‘Sorry’ I breathed a huge sigh of relief, what had I been thinking?

My change of heart came about for a variety of reasons but it was running the Birmingham Half Marathon last October that really swayed me. Despite being proud of my achievement and enjoying taking part, I didn’t like the razzmatazz that went with it. Realising that I was amongst around 9,000 marathon runners and 12,000 half marathon competitors didn’t excite me. Knowing that for London Marathon there would be more than 40,000 filled me with dread.

I’ve already blogged about my half marathon so won’t go on but we were so packed in at times it wasn’t possible to run at a steady pace. Having trained so hard for so long I’d always intended to not only complete it but to compete in it. Therefore once I’d received my ‘No’ from London I set out to find the most suitable full marathon course for my first attempt at the distance.

In the meantime I was getting frequent messages of sympathy about being unsuccessful with a London place together with advice about securing one through the big charities. This however was another of the reasons I was now firmly against entering this event. I have signed up to run for two of the charities that mean most to me but they don’t have the kind of money needed to get charity runners into London. Why then would I turn my back on them and attempt to raise on average £2,000 for an organisation I have no affiliation with. This was a big deal to me.

When (or should I say if) I cross that marathon finish line it will be the end of a very difficult journey.

In March 2018 I will celebrate the most significant cancerversary, the 5 year goal. I’m careful not to tempt fate by saying 5 years free but rather since diagnosis and so far so good. Running has been my greatest escape and also given me a goal. I’m running away from cancer and towards a healthier future. Being able to complete a marathon will reaffirm my fitness level and further smash away those nagging doubts about stowaways. More than that I will cross the line knowing I’ve given something back to the charities that have helped and supported me through the past 5 years.

I had to give my full marathon choice some considerable thought; not too big, not too far away, not too commercial, at the right time of year. I needed it to be just about the run. I’d hovered over one particular location for a while, everything fitted the bill but there was one more plus. 

The Shakespeare Marathon in Stratford on Avon has an entry limit of 4,000, it’s run in May and organised by the Rotary Club who donate more than half the money raised to local charities.  All of these tick a box for me but the added extra is that as I’m writing a book about my experience, what better inspiration to follow than the bard himself.

There it is, I’m signed up and ready to train for the big one, my first full

marathon on Sunday 13^th May, 2018

Wish me luck!

My Half Marathon - half way to my Unfashionable Cancer Marathon

It has been so long since I last updated this blog, I didn’t even write up my half marathon so I’ll begin with that.

Fundraising continues for my full marathon which I'll be writing about next, here's the link to the Total Giving page - I'm aiming to raise £1000 for the Kidney Cancer Support Network and Facing Up 2 Kidney Cancer.

My 1st Half Marathon!

On Sunday 15^th October 2017  I reached the halfway point of my Unfashionable Cancer Marathon journey when I ran theGreat Birmingham Run. It was my first half marathon distance and I ran every step of the 13.1 miles. Here's how it went;

The week before race day I discovered a new ailment, Maranoia. I was terrified of getting ill or injuring myself before the big day and so virtually hibernated. I did risk attending my yoga class although I asked anyone with a cold to declare themselves and move to one side. 

Apart from the obvious preparation; that six months of training I put in three times a week, there were other important factors that needed addressing. Top of the list what should I wear...? I checked out the new prints at my favourite fabric supplier  and after much deliberation chose the Hip Hop design, colourful, loud and with that hint of pop fashion I love.

I also needed a running vest, it had to be green which is the colour of my chosen charity Kidney Cancer Support Network and Facing Up 2 Kidney Cancer and it needed printing. The charity names went on the back and it wouldn't have been complete without my business monika on the front, MISSFIT!

My daughter sorted me out with some nice sparkly green gel nails which just left my hair but my maranoia was so bad (I was on lock down) I decided to wear a cap instead!

The morning of the race came around quickly and I was a bundle of nerves, it wasn't so much the run but getting there. I worried about traffic, parking, directions, getting in the right pen and the big one...needing a wee! Thankfully we don't live far from Birmingham so a short drive and we arrived with plenty of time, parked easily and got clear directions to the event.  First stop was of course the portaloos and then we headed to the start point, my husband and youngest daughter came as support so I had no baggage to sort.

The start was near the finish line where both the half and full marathon runners ended, the latter of which were coming through thick and fast at this point. The atmosphere was already exciting as those running the marathon were cheered across the line.

It wasn't long before I was parted from my family and had to find my way down to the Green Wave start point (after I'd found another portaloo). I was relatively early so managed to get near the front. It was remarkably subdued as we waited, quite a bit of limbering up and Garmin checking but not much chatter.

The first two waves had their warm up and moved off and we were edged forward, unfortunately I'd chosen this moment to retie my laces and so dropped away from the front as people hurdled over me. When I spotted my husband and daughter waving I got so excited, all nerves disappeared as it was finally time to run. We had a short warm up which no one seemed to be paying any notice of before the countdown and we were away.

I can't describe how it felt to be running down past the Selfridge building and out towards Digbeth. Routes I tread regularly but usually with a trolley full of fabrics. The crowds at this point were amazing, loads of whistling, cheering, people calling out our names. As we headed out of the city towards the warehouses the crowds thinned and I really enjoyed passing through these familiar buildings whilst running in a huge pack, it was so strange.

I think there must have been points where I zoned out and was simply running, that happens to me often I literally forget where I've been and just wake up and realise I'm two miles down the road. When we headed into Cannon Hill Park I had a minor panic as I saw the sign for 8 miles and knew this was impossible. 'I've joined the marathon route!' This thought flashed into my head so I had to ask another runner who laughed and explained that the signs are mixed around the course.

I soon realised that the talk I'd heard about the course having had hills removed this year was untrue. There were most definitely, 100% hills. The one we climbed up between mile 7/8 was a beast of a hill but I never once stopped. Since I began training I've always kept on running, no matter what. I feel that some bad luck will befall me if I stop so even if it's baby steps I run. If I have to wait at a curbside I jog up and down. Let me tell you, by the time I got to the top of that hill I was seeing stars! I thought I'd need oxygen!

The other disappointment on the day was how congested it got. I was in the green wave and pretty soon began meeting runners from the white wave. It wasn't long before we were in amongst the slower marathon runners and a few of the orange wave. At times it was so congested I had to do baby steps so I didn't stop still. I found myself going up and down curbs a lot to avoid breaking pace.

I'll get my final moan out of the way, the bottles. Why oh why can't people bring their own water? I always run with water, mostly because having one kidney means I can't afford to dehydrate but also it's easy. I understand that elite runners shouldn't have to run with bottles but for everyone else is it such a hardship? I have never seen so much waste! Not only were there nearly full bottles of water rolling underfoot but also gel packets making the road sticky in places. There must be a better more sustainable solution...oh yeah, carry your own water! The clean up must have been phenomenal (and costly).

It was a huge relief to reach Bourneville and turn, the support from the crowds there was great too and we were heading downhill! By this time we were meeting more marathon runners and passing the last wave of half marathon runners on the opposite side of the road. I'd avoided high fiving anyone around the course after reading Running Like A Girl where it results in the author tripping up a curb and landing flat on her face in the London Marathon. Running back through Selly Oak I did managed to high five a pug though.

One of the bonuses of wearing something I'd made was the great promotion I was giving my business. So many people called out about my leggings and many runners complimented them too which made me smile. It gives new meaning to 'running a business'!

Mile twelve came as a complete surprise as I think I must have zoned out again. The Pershore Road had been more congested coming back and as I hadn't set my Strava app going I had no idea what my pace was but knew it was slower than usual. By this stage I was feeling tired and the temptation to have a little walk was it's strongest. I kept on though, my legs were fine I was just a bit weary. Having never tried energy gels I'd carried six jelly babies in my running belt. I'd had one at miles three, six and eight and with just over a mile to go had one more.

Turning the corner onto Bradford Street was a huge relief, I knew exactly how far was left now, I'm a regular at Barry's Fabrics so it was a short stroll back past the Bull Ring and up Moor Street. Well...unless you've just run the best part of 13 miles! Never before has 'that' hill seemed as steep! My last jelly baby needed to give me one hell of a sugar rush to climb this.

There was a complete mix of finishers making their way up the hill, many walked but more pushed on spurred by the fantastic crowds. By the time we turned onto Moor Street and could hear the announcements as runners passed the finish line I was feeling very emotional. I was reminded of my reasons for doing this run, the finish line was a big milestone for me.

Over the final few 100 yards now I searched the crowds for my family, I knew they'd be there somewhere. I spotted my husband first and tried to get across to him but was blocked by a marathon finisher waving a large glass of gin and tonic. Further on I heard my daughter calling and saw her just as I crossed the line at 2.08.21

My tears came as I slowed down, I'd done it. I didn't feel too bad either but the relief was huge and I was glad to get a big hug off my husband and daughter. I followed the line of runners collecting finisher bags and headed straight off back to the car. I did of course get my medal out and put it on but I wanted to go home.

Would I do it again? Half marathon probably but not a large event like Birmingham. It was an enjoyable day especially being able to run around my second home town but just too big, I prefer smaller races.

I'm very proud to be a Great Run Finisher though and as such have worn my medal all week, including shopping, yoga and writing group. Training has started for the big one now 26.2 miles! First though, what to wear...? ;-)

On My Marks!

This Sunday 15th October I will run in the Simply Health Great Birmingham Run. I've entered the half marathon distance and have run the 13.1 miles twice now. My training began when I entered back in April this year so I will have been preparing for 6 months.
During this time my running routine has consisted of training Tuesday's and Thursdays when I'll do between 3 and 4 miles each time. I've tried to treat the 5k (3.1 mile) runs as speed training and now average around 8.40 per mile, around 26 minutes total.
At the weekend I've focused on longer runs of 5 miles plus. Both of the 13.1 mile distances I've achieved in 2.03 hrs which is pleasing. On Sunday I want to push myself if possible and try to complete in less than 2 hours - a big ask!
Since I started running at the end of 2014 I've learnt a lot about myself. I have far more stamina than I realised and have surprised myself with how competitive I am. Running has helped focus my mind as well as improve general fitness which has also benefited from a better diet while training.
Where I used to dwell on worries and concerns about my health I have found running a way to quieten my mind. When I run that is all I do, put one foot in front of the other and breathe. Knowing I can run, seeing the progress I make and feeling my heart pounding gives me huge reassurance. I'm one step ahead.
I have chosen to raise funds for two charities close to my heart. The first, Facing up to Kidney Cancer is one I've supported previously. All monies go directly into a kidney cancer research project at University College London. The second, Kidney Cancer Support Network is a patient led charity supporting the needs of patients and carers going through this disease. Donations can be made through my Total Giving Page, An Unfashionable Cancer Marathon.

In 2018 I will be running a full marathon. I turn 50 at the end of this year and March 2018 marks 5 years since my surgery to remove my left kidney. At that time I would never have thought I'd be able to run let alone run 26.2 miles. By taking on this challenge I hope to show others coping with kidney cancer that it is possible to achieve many things. I am one of the lucky ones, recovery has granted me the ability to run. It has also given me other opportunities including writing and yoga. In turn my new found passion for fitness has lead me to change my business model, I now make and sell activewear through my own business Missfit. Cancer doesn't have to be the end, there can be new beginnings no matter how small.
My goal to raise £1000 has already passed the halfway mark which is amazing. On Sunday I get to run a half marathon race for the first time in my family home town of Birmingham. Hopefully along the way I will raise much needed awareness of kidney cancer as well as increasing the fundraising.
I've made myself some leggings ready for the occasion, hopefully they'll stand out but don't blink, you may miss me ;-)
Debbie X

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

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 3^rd 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.

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!

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.

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...

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.

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.

Kidney Cancer Retrospective

Since starting work on my book I've spent a lot of time looking back, most of it over the past three years or so.

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.