In March 2013 my life was fun and fast paced. Running a fashion design business from home meant never a dull moment for me or my family. My husband Johnny and I had just celebrated 25 years of marriage in London and I was back creating a new collection when I had a rude awakening.
Waking one morning I felt unwell then discovered I couldn’t wee. Soon after, I collapsed in agonising pain. Not realising how serious things were, I refused to call an ambulance. Johnny carried me to the car and took me to our local hospital who shrugged, then called an ambulance. The second hospital sent me through the CT scan then called for another ambulance. I was taken via blue light to a renal ward in a larger hospital and left for several hours completely unaware what was happening.
Later that evening it transpired they’d ‘forgotten to admit me’. I was still unaware that a large tumour had ruptured in my left kidney causing a blockage; hence no wee. The pain was excruciating. My nurse saviour on the night shift sorted this out and introduced me to a three-way catheter and drain. The next day I was visited by a Registrar on the ward round. Whilst on my own he delivered the news, “We need to remove the cancer in your kidney”.
What a shock! I’d worked out something bad was causing the pain and bleeding, however; this wasn’t how they broke news of the C word on Holby City. I was fast learning that real life and TV drama are not alike.
I don’t want to dwell on my hospital experience as it wasn’t good. It actually got worse! Thankfully, I had a notebook and wrote everything down. Much to the annoyance of the medical staff (who thought I was some kind of mystery shopper type of patient) I made notes from day one. My elderly neighbours on the ward loved it, they’d pipe up during ward rounds, “Put that in the book!”
My tumour was embolised then removed. Following surgery I spoke to my GP; who has been incredibly supportive, and he requested a change of hospital. This in itself caused problems. Surgery notes were ‘lost’ and a scan missed. When I eventually saw my new consultant she was charming but to my surprise, discharged me. I was eleven months post surgery. Quite unprecedented.
I spent three years in cancer limbo where my GP took on my care, sending me for scans etc. He prescribed gabapentin as I had continued pain around the surgery area, which I took reluctantly. I’ve never liked taking medication. Ongoing back and abdomen pain led eventually to another referral to a third hospital. It was discovered that I had some nerve damage and I was sent for physio.
The physio helped and begged the question, “Why aren’t patients given physio following major surgery?” I had developed a lopsided gait over the years after my nephrectomy which could have been avoided (along with the pain) had I been given advice about exercise post op.
The physio recommended yoga so I found a good local studio and was soon a regular. My new fitness regime included running and cycling. I decided to push the running further, trying some races where I could get sponsorship and raise funds for kidney cancer. I’d been in an athletics club when younger so it was wonderful to get back into running kit and see what I could achieve.
Another first love; writing had also been rekindled post cancer. The note book I’d kept in hospital was transferred to a blog which gathered momentum and followers. So much so, I was asked to put my journal into book format. For help with this I joined a writing group and before long was churning out short stories, poetry and articles; writing was becoming another release from which I was benefiting greatly. My book An Unfashionable Cancer is currently being edited.
Over the following years I weaned myself off the gabapentin, focusing on my fitness. I ran some races and donated the fundraising to kidney cancer charity. Starting with a 10K, working up to a half marathon and then in 2018 the big one. To celebrate my five year cancer free goal I ran a marathon. I’d reached that virtual finish line and crossed it in my running kit.
One of the things I’m most proud of is a design I’ve worked on. Fashion appeared superficial following cancer. I was modelling a lot of hospital gowns and realised how, as a patient, we lose identity as well as dignity during treatment. Therefore, I created a gown that eliminated fiddly ties and fastenings and covered patient’s modesty. I’ve called this the Coverstory Gown. This is currently being looked at by an NHS trust with a view to procurement. I’m also selling them to individuals in personalised prints and slogans.
The word I like most that’s been used to describe my kidney cancer experience is stoic. I’d like to think I just got on with things, or at least appeared to. However, as most of you know, the inner struggle can’t always be seen. I do attribute cancer with some positives though. I’m not sure I’d have laced up my running shoes again and probably wouldn’t have returned to writing. As for Coverstory, I think we all have one of those which is why I chose it as a business name. I’ve combined designing with writing and ask patients to share their stories, we are none of us faceless patients on a ward and sharing our stories helps us unburden some of the anxiety cancer has added. If you’ve experienced a malfunctioning gown or have found an alternative way to ‘close the gap’ please get in touch via www.coverstoryclothing.com
Sometimes, only we can write that happy ending, I’m constantly working on mine.