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

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

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!

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.

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.

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.

Pain Management Revelation

A couple of weeks ago I had an appointment with a pain management consultant, something I should probably have had at least 2 years ago. Over that time I have experienced pain in my back around the area of my remaining kidney and underneath my ribs. This has gone largely unexplained and has been evident since my nephrectomy over 3 years ago.
Following a visit to the Orthopaedic Hospital I was sent for physiotherapy which was a revelation as it was discovered I was lopsided. This was probably a result of me leaning away from the pain of my surgery when I was first out of hospital. The physio was very good and I was soon standing straight and so they recommended yoga. I began a local class which I still attend weekly and has helped tremendously. However, the pain didn't go away and hurt to such a degree that I was also taking daily painkillers.
The drug I was prescribed was Gabapentin, an anticonvulsant medication that works on the nerves and chemicals in the body which are responsible for certain types of pain and seizures. It has been proven to be very effective on neuropathic pain which is why it was given to me and it worked extremely well. The trouble was that in order for it to work I was taking a pretty high dose daily and this had side effects of which I didn't always recognise. As well as blocking out the pain it was almost mind numbing, having worked in a creative job I just couldn't focus on getting back to work after my nephrectomy. For the most part I reasoned that this was to do with the life changing event I'd been through but as time went on and my dependency on Gabapentin grew I realised it had more to do with the drugs I was taking.
When I was recently referred back to hospital care and went through having more scans and xrays it was a real shock to the system. My pain hadn't been improving and I had begun to have doubts about what may be causing it, I'd never been given a conclusive reason and the answer I had been given was 'probable nerve damage'.
Not having ever liked to take drugs of any kind it had been playing on my mind more and more that the Gabapentin was doing me more harm than good. If nothing else it couldn't be doing my kidney much good and so I made a rash decision to stop taking it. Rather than discuss this with my GP or wait for the pain management appointment I decided to just stop, no weaning myself off just take no more.
Bad move. I was so poorly, for nearly a week I felt dreadful. I was incredibly lethargic and felt extremely low, that awful end of the world feeling you get after a bad hangover only double. If this was cold turkey I don't ever want to take drugs again.
By the time the pain appointment came around I'd been off Gabapentin just over 2 weeks, I was taking a combination of cocodemol and paracetomol instead so not entirely drug free.
While waiting to go in I was given some Q&As to fill in about my pain which involved answering questions on a scale of 1-10. How bad the pain became in differing circumstances, what kind of activities caused it, how this made me feel etc. It was strange having to give honest answers when I generally try to brush over the pain and especially how it makes me feel, it was quite an emotional exercise.
I was pleasantly surprised when I was eventually called in to the doctor, he was remarkably nice and engaging, speaking to me not at me as I've often experienced with consultants. He firstly wanted to know a little more about the history of my pain and then began to look at the various scan images I'd had on his pc. I was asked more questions relating to the nature of the pain, what made it better/worse, how frequent etc and then he asked to examine me. Thankfully this only involved me standing in front of him while he felt different areas of my my back. As I hadn't thought I'd need an examination I hadn't dressed appropriately (nothing new there) and had to unzip a high waisted skirt for him to get to the correct areas.
When he did find the right place I thought I'd fly through the ceiling! He pressed his thumb in so hard and kept it like that for what seemed ages but was probably only 30 seconds. After my squirming and trying to wriggle away from him (which he seemed to find mildly amusing) he asked me to sit back down and said 'I have some good news for you'. Firstly the scans show no evidence of the cancer returning (I knew this) and secondly I can't find any nerve damage either. Now this was a revelation.
For nearly 3 years this has been the line I've been told, 'probably nerve damage' usually followed up with, 'not a lot can be done'. So to hear that this 'probably' wasn't the case was the best news I'd had in ages - next to the NED.
The doctor then went on to say that his diagnosis would be that I had a large knot of muscles in my back that was causing the pain. When I think back to the way I'd struggled with the surgery pain which had in turn caused my whole gait to become uneven this wasn't surprising. He then went on to describe to me the various ways I could deal with the pain including acupuncture, massage, trigger point massage, yoga and TENS machine.
I left his room feeling like I could walk on air I was So Happy! Prior to this appointment I had been taking a high dose of painkillers and living with the fact my pain would probably never leave. Here I was walking away with some proactive measures that I could do myself to help ease and in turn maybe cure the pain, I couldn't stop smiling. Furthermore, he told me that exercise including running wouldn't have to be avoided as long as I made sure to  take appropriate action afterwards whether by massage or tens etc. which would help release the muscle tension.
I'll write more on the steps I've taken since this appointment in my next blog (I'm way behind...) - I'm still smiling :-)

Time Out

After a 3 week wait I am happy and relieved to say that I was given the all clear by the QE in Birmingham following my latest abdominal ct scan. Relief is an understatement as for the first time in a couple of years I was starting to have my doubts. Generally throughout my cancer ordeal I've remained pretty optimistic but after a series of investigations into ongoing pain I wasn't my usual confident self.
My unease had been heightened after the ct scan itself was paused while the radiographer approached me and asked if I had something on my side? As you can imagine this made me even more nervous about the results - I never found out what that was although I'm told that sometimes they pick up strange images?  More than anything though I've felt as though I've been reliving cancer just by having to attend related appointments, let alone the wait for results.
Since April this year I've had a mammogram and chest ultrasound, a scan of my womb and overies, renal ultrasound, chest xray and a ct scan. There's not much of me that hasn't been caught on a camera of one description or another and in all those images they've not found any evidence of cancer. If that's not cause to celebrate I don't know what is!
I've crossed the 3 year line and only 2 more to go before I get the definitive all clear.

Catching Some X Rays

This week I went for my annual chest x-ray which has followed closely on from a renal ultrasound and another scan of my bladder area. Just prior to this in April I was sent for a mammogram on some breast lumps which proved to be cysts after they'd also done an ultrasound of my chest area to be sure.
Before this latest x-ray I answered a few brief questions about my medical history and mentioned I have a CT scan in just over a week. This meant the radiographer had to seek advice on whether the x-ray could take place as they don't want to give me too much radiation. I'm already starting to wonder whether I've got any superpowers (apart from glowing in the dark).
The go ahead was given and another couple of inside out pics were taken of my lungs and chest area ready to be fast tracked to my GP before the CT scan date. Once that is done I don't think there'll be any more places on me (or in me) that haven't had an image taken.
Having spent the weekend before last celebrating my eldest daughter's wedding, I'm seeing more and more photo's of me pop up on social media - note to self  'I need to practice my being caught unaware face...' Thank goodness hospital x-ray departments don't have a Facebook page...I don't think my abdomen would attract many likes! I would also worry the radiographer may mention the state of my fast fading spray tan as once I'd got into the hospital gown I realised it looked like I hadn't washed for the past 10 years. Another note to self, 'spray tans look great on wedding photo's but raise some eyebrows when you're in the nip being scanned!'
So now it's just a trip through the ct tunnel for the scan I should have had over 12 months ago if I hadn't been wrongly discharged by the hospital. This will be the 6th x-ray/scan in 2 months, talk about making up for lost time. In fact only this morning I had another call from the hospital asking me to return for a renal ultrasound but when I mentioned I'm due a CT they said that would be ok.
I suppose I should be grateful for this burst of interest in my chest and abdomen, I mean now I'm really back on the radar and being taken care of. However, there's always the fear that they may spy something unpleasant which makes oblivion more appealing. The other concern I have is the CT scan itself, my first encounter with this machine wasn't good as I'd been rushed in as an emergency in great pain. Even sitting outside the scan room watching the warning lights flash off and on fills me with dread, it's like the all seeing eye.
I'll keep this blog updated as results come in, so far so good.

For the Record

Today is the anniversary of my fathers death, he died 36 years ago very suddenly of a heart attack. I remember very little about him as I was only 12 at the time, I never had a 'grown up' conversation with him so don't feel like I know the real him.
There are so many questions I'd ask him, so much I'd like to find out but right now there's a very pressing question I need answering. 'What was wrong with your kidney's?'
The little I do know is that my Dad had problems with his kidneys, he had been hospitalised while still a young man and as he grew older suffered terribly with kidney stones. Family members know a little about his condition but nothing conclusive and so today I approached the NHS records office.
After my 3rd phone call I was put through to someone who said that his medical files would have been destroyed after 25 years, no joy there then. I've no one else left to ask and therefore may never know exactly what kidney issues he had.
My own medical records show that in 1975 and '77 I had procedures to investigate my kidney function by having  pyelography (Google it...it wasn't enjoyable at aged 10). Next to this information is written 'Kidney Disease', no explanation just those 2 words.
All of this I told to my consultant when admitted originally, all of it was dismissed without investigation.
I have another referral coming up, this time it'll be to the QE Hospital, Birmingham, I was hoping I'd be able to share some family history at this appointment. My biggest concern is that if there are any hereditary factors then my two daughters may also share this risk.
Without medical record evidence though I think I've reached a dead end, literally.

Kidney Cancerversary 3 Years

A glance back before I move forward...

It's a longer post than usual but these are the notes I spoke from at the Kidney Cancer Information Day last year, I've edited a little. It was that day that gave me the courage to return to my GP and pursue the answers I still seek.

Kidney cancer is an unfashionable cancer but the statistics are rising, so much more needs to be done to raise awareness and beat this disease. One thing's for sure, it won't beat me.

Before

I wasn't ill. Aged 45 I ran a small business designing and selling clothing for entertainers. At the beginning of March 2013 my husband and I had just celebrated our 25^th wedding anniversary in London and life was good.

On 13^th March everything changed, I woke that morning with what I later heard termed ‘a gross hemorrhage’ and shortly after collapsed in the most excruciating pain I’d ever felt in my left side. Via two other hospitals I was taken by blue light to Heartlands in Birmingham with what by then had been described ‘a mass in my kidney’.

Once I was hooked up to drips and drains etc I was left overnight in a renal ward with staff who seemed as clueless as I was as to what was actually wrong with me. The following morning on a ward round a registrar checking my notes told me casually that I may need my kidney removing with the cancer inside...and there it was.

Alone with no family, no nurse, doctor, specialist, Macmillan nurse or anyone to hold my hand, there was the news we all dread, I had cancer.

This may not have taken me aback as much had I not been present for my Mothers breast cancer diagnosis which conversely took place in a specialist centre with all of the aforementioned people present. This guy had to be kidding right?

It was 6 days later when together with my husband we wrote a list of 12 questions that remained unanswered and asked to see a doctor – the consultant I was told was away on holiday. Question 2 was ‘What are you removing and how do you know?’ after all I’d had no biopsy and still no actual diagnosis of cancer from a specialist. The answer we received was simple, ‘It’s cancer, we know a dirty big tumour when we see it’.

The rest of my hospital saga can be found on my blog anunfashionablecancer.blogspot and I'm sorry to say my experience did not get any better. So much so that after the 6 week check up with the surgeon it was starting to become apparent that I could not stay with this hospital trust. One of the questions we asked that day was, ‘What are the chances of the cancer having spread?’ to which the answer came, ‘You may have a tumour this size (at which he made a dot with his ballpoint pen on the desk) in your lung right now but we wouldn't be able to pick it up. Either walk out of here and worry about it or get on with life as best you can’. The other concerned back pain I’d developed in my right side which the consultant immediately said ‘had categorically nothing to do with his surgery’. Looking back now, I felt more as though I’d been delivered bad news than any sense of relief as we left that day. I never returned and shortly afterwards my GP helped me change hospital trust.

After

During my stay in hospital I kept notes, firstly so that I could relay to my husband what was going on as dosed up on morphine and with so much happening to me I couldn't understand it all myself. My medical knowledge was increasing daily as words like embolisation had never entered my vocabulary let alone taken place in me before. These notes are what became the beginning of my blog.

Post surgery I struggled with pain, particularly my back. I also struggled with coming to terms with telling people where I’d been and why. My former business was loud and happy, I’d had a mohican when first rushed into hospital and before that multicoloured dreadlocks. I was discovering that I’d not only lost my kidney, my confidence was dwindling. The blog became an outlet for what was happening to me and how I felt about it.

I still had so many unanswered questions and no one to ask. A GP had advised ‘Don’t Google It’ and I’d steered clear of putting kidney cancer into search engines however, I felt cast out by the hospital and other than my family had no support network – neither did they. That’s when I found the James Whale Fund (now Kidney Cancer UK) which really did help me no end. From them I was able to hook up with a few others going through similar and was able to recognise symptoms, fears and feelings.

As I continued with my blog I began to share it on twitter, I had a large following from my fashion business most of whom were completely bewildered when faced with tweets about catheterisation! However, I started to see an increase in views and began to receive messages from other kidney cancer patients and carers as well as people facing cancer of other types.

I transferred to Burton Hospital Trust under the care of a consultant in their urology department, she was extremely pleasant and welcoming but – I was signed off after only 2 visits. At that time I was more than willing to leave hospital care as my experience so far had been dreadful however, only 11 months specialist care for a large grade 2 cancer didn't seem right?

Now

It’s 3 years since my sudden cancer diagnosis and I am still without specialist care, the backache remains as do other related health issues. I am fortunate to have an excellent GP who has done all he can to help and advise including arranging an MRI scan and appointment at the Orthopedic Hospital, Birmingham concerning my back pain. From this I received physiotherapy, something that was missed in my hospital care and which led me to begin a yoga class – I'm still going over 12 months later and it’s helped tremendously.

In the absence of any specialist kidney cancer care I have made sure to maintain as healthy a diet as possible – something else that wasn't advised on by the hospital. I've cut right down on dairy products and of course salt and sugar and I've been a semi-vegetarian for over 10 years so eat hardly any meat. Yoga has played a big part in my recuperation but I needed something else and so started running 18 months ago. I now run at least 3 times a week and have recently joined a running club to help improve my distances. I love to run, when I’m out I don’t feel the pain in my back, so much focus is on pace and breathing I feel running is a form of meditation and I couldn't do without it now.

After being asked to talk about my cancer journey at a Kidney Cancer Information Day last year I took some good advice from both specialists, patients and carers who attended. Since then I've spoken to the PALS (patient advice and liaison service) about being signed off early, unfortunately they weren’t very helpful so I spoke to Macmillan Cancer. The nurse I spoke to was horrified that I’d been signed off and confirmed that ALL cancer patients should have at least 5 years specialist care.

I also took advice to request my notes from Heartlands Hospital, now there’s a can of worms. The large file was littered with mistakes from my age and length of my hospital stay to the size and grade of my tumor. Having had an embolisation I have since been told that this would have shrunk the tumor by starving it of blood. As the surgeon was away on holiday I was left for 12 days before surgery to remove the cancer by which time it was smaller than the original scan. It is this size that was quoted to me, not the original tumor size.

Had I still been a kidney cancer patient it would now be time for my 3 year CT scan, my GP is arranging this for me and has also taken a look at my medical records with a view to getting me an appointment with another renal consultant.

3 years ago I was oblivious, I was neither aware I was ill nor did I worry about it, cancer certainly didn't keep me awake at night. I don’t worry about it now, what concerns me is that I may not be doing everything I can to avoid getting unwell again because what really scares me is not being in control. I’d hoped that my cancer journey would be plain sailing by now but without that specialist care I still have those nagging doubts, is everything being done that should be?

I continue to look for those answers.