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

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!

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.

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.