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

Scan Silver Lining

I should’ve been on auto pilot the number of times I’ve driven to the hospital but I still managed to make a wrong turn.  On arrival it’s normally easy to find my way to the scan reception, today though I got lost in the corridors and had to ask for directions. Booking in is usually straight forward but I’d forgotten to fill the required questionairre in beforehand. By now it was becoming evident I was far more nervous than I’d realised for this scan which I’d been considerably blase about.

Waiting room 1 was busy and conversation centered on what you’re allowed to wear into the scanner. There are always experts present who’ve had x amount of scans and know procedure inside out even though it varies for everyone. I sat quietly and removed my necklace. It was as I removed my jacket that I was brought into the conversation when top expert began admiring my tattoos. This always makes me feel a little uneasy as all eyes are understandably then drawn to my artwork. Thankfully I was first to be called out, much to the surprise of those who’d been waiting longer.

It wasn’t the scanner I was needed for though, I have to have blood tests to make sure my lone kidney will cope with the contrast dye being fed through my veins. Despite nodding that I knew my way, I still managed to miss the haemotology department and had to make yet another detour. More awkwardness ensued when I was called straight through for my blood tests ahead of a waiting room full of impatient patients.  How lucky to be sent from the ct department eh? The usual dialogue took place between me and the phlebotomist, “ Do you mind me going in here?” Points to my colourful arm. “Not if you can find a vein”. Clenches fist and crosses fingers.

Back in radiology I’m now directed to waiting room 2 where I join the previous panel of experts whose current topic of conversation is fluid intake. Some have jugs of water with instructions to drink a beaker every 5 minutes whilst others appear a little left out. One lady thinks it best to get a second opinion as to why she’s not having to fill her bladder, “because we’re scanning your chest”, does little to satisfy her need to be in the bladder gang.

I take a seat by a small table where my obligatory water is delivered with the news I’ll have at least 45 minutes to wait for the blood test results. It’s then I realise my other oversight, I have nothing to read. Phones have to be switched off and there’re no magazines, it really will be a long wait.

One of the experts had been telling all assembled her medical history in a, ‘quid pro quo’ manner with little success and was now attempting to engage me. I conceded I wasn’t a ct virgin and alluded to surgery, the temptation to elaborate and tell her I used to be called Steve was strong but I told the truth. The C word had it’s usual effect and in no time at all my kidney was raised by lung, bowel and breast cancer patients. I felt as though I were part of a virtual game of Operation where Mrs Expert drew out those of us with diseased organs with heavy sighs and tuts.

A member of staff decided to put the tv on for us which I hoped would disctract morbid conversation. It was tuned in to a consumer program dealing with cases of fraud, negligence and accidents which did nothing to lighten the mood. I managed to zone out listening to Gloria Hunniford long enough for the waiting room to almost clear taking with  it Mrs Expert who mouthed, “Hope you’re ok” shaking her head as she left.

Mr Lung and Mr Bowel cancer had entered a debate about whose hospital was the biggest, Lung was under Leicester Royal and Bowel was North Staffs. They then wished they hadn’t asked me as I trumped both with the QE. Time was dragging and I really needed a wee and fidgeted about a little too much. This caused Mr Lung to ask was I ok, I looked a little nervous. I assured him I was fine and prayed my pelvic floor could take the fluid overload a while longer.

Thank God I was next to be called. In some hospitals they canulate you before getting into the scan room, here they put the venflon canula in while you’re on the scan bed. The guy piercing me was very gentle and helped put me at ease by chatting about my chosen outfit which I could’ve worn to a yoga class. He said I looked sporty which made me smile as I lay facing the all seeing tunnel of light. Once the canuar was in place it was business as usual, arms above head and I was left to be fed to the donut.

No matter how many times I’ve been in that situation it never gets easier. Breathe in and hold while the machinery whirrs into action. I passed under my name, hospital number and age illuminated above me into the white donut. Looking up lights flashed around the silver lining of the tunnel and an instruction read, ‘Don’t look into the laser’ which you realise you’re doing a little too late. Backwards and forwards a couple of times before being fed out once more and joined by a nurse.

Now the contrast dye is fed through, the nurse held my hand, massaging the back where the canular held the needle in place. The familiar reminder that in a moment you’ll feel as though you’re weeing yourself and not to worry as you’re not made me smile again. It was made worse by the fact that my bladder was full to burst so I’m never 100% sure I haven’t really wet the bed. Leaving me again I hold my breath and breath a couple more times whilst moving backwards and forwards under the beams before the nurse returns. All done.

I’m led to a cubicle next where the venflow is removed and I’m advised to sit back in waiting room 2 for 10 minutes before attempting to leave. When the nurse ask’s if I’m ok I weirdly feel my tears coming and can only nod. This scan business really can mess with your head. She gives me a knowing look and leads me back to the waiting room.

Mr Lung is now discussing the hazards of travelling in an ambulance, Mr Bowel is agreeing saying he was rolled off a stretcher going along the A50. My ambulance experiences aren’t required and I sit quietly before rising to go home.

After feeding the parking meter I sit in the car to eat my banana and flapjack, a ban on eating before the scan means I’m beginning to feel very faint now. I have to keep my eyes down as patients arriving with nowhere to park are hovering around my car hoping I’ll move off and leave them my space. Three hours after arriving I’m back on the road home leaving behind the images of my abdomen and pelvis. Lets hope that silver lining I’ve just been through is reflected in the results.