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

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!

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.