Graham Whatley, Leicester
My mam died of bowel cancer in 1993 when she was just 60 and my sister passed away from the same disease in December 2016 at 61. 18 months later I was diagnosed with stage 4 bowel cancer. I was 50.
One morning in April 2018 I didn’t go to the toilet, despite being regular. I thought I’d probably go later in the day, but I didn’t. Despite eventually having a bowel movement a day or two later, it wasn’t particularly satisfactory. At some point I bought laxatives from the chemist as this change to my toilet habits persisted. And when they didn’t work particularly well, I went to my GP.
They just prescribed me laxatives and antibiotics as I also had a water infection. Over a period of approx. five weeks, I also had to attend the local emergency drop-in clinic on two occasions. As mentioned, my ongoing ‘constipation’ was, in my mind, inter-linked with my water-infection in making me feel poorly. With nothing making me feel much better, I went to my doctors again.
It was during this appointment with the duty nurse, that she asked a question about my family and I replied that both my mam and sister had died from bowel cancer. Her attitude changed immediately and she issued me with a poo-test kit.
A couple of days later, I lost my appetite. Up until then I’d been happily eating my usual meals and portions. I was by this point having agonising stomach cramps – they’d stop me in my tracks, and I remember having to pull my car over when I was driving home from work that Friday.
Despite feeling lousy, I went out that night with a friend and again the next evening with my son. When I got home on the Saturday evening, I was almost immediately sick. I’d been in bed for most of the day, feeling unwell, but I didn’t want to miss the gig, or let my son down by not going.
Early the following morning, I was sick again, but this time it was like poo, not normal vomit coming out of my mouth. Disgusting and very worrying. I rang 999 and they told me to go down to A&E, so my wife took me. I was in for several hours and during my time there I was given a suppository and because I passed a small amount of poo, they released me with more laxatives and antibiotics as I still couldn’t shift the water infection. This was lunchtime and once home, I went to bed as I still felt unwell.
I had no appetite and even water didn’t really agree with me. It was unbearable, but I felt that the medical professionals had said I just needed laxatives, so that was that; I just had to put up with it. Later in the evening, my wife, understandably concerned, rang 111, who advised I go down to the emergency clinic at Leicester Royal Infirmary. I couldn’t see much point, as it was the place that’d released me about seven hours earlier, but in the end I relented. The doctor who examined me, could tell that there was something wrong though and rang the General Hospital. They said to come over immediately.
On arrival they attached and inserted various tubes, essentially prepping me for what was to come. They obviously knew something was seriously wrong.
I was told that I had cancer sometime after waking up following a very long and life-serving surgery. That last part is not me being over-dramatic.
I hadn’t had time to dwell on having cancer or a stoma as I woke up to discover I had a colostomy bag. Despite losing two close family members to bowel cancer, it really didn’t cross my mind that that was what I had as well. I really don’t recall if I was shocked when I was told; I also don’t remember any tears… though this could’ve been the effects of the morphine! The ICU nurses who looked after me when I came round from the surgery were lovely, as were the many people who cared for me over the next two weeks. My wife was amazing too and so were my close family and friends. This helped me through my diagnosis.
After being home for about a week, I got an infection which resulted in another late-night admission to Leicester General Hospital and emergency surgery. I stayed in hospital for nearly two weeks. Because of this second surgery, it delayed my treatment as my wound had to heal properly before they would commence chemotherapy. The delay did cause me some concern, as I was told there was a window of opportunity when it came to treating cancer, so I was extremely anxious as it literally started on the last day of this recommended window.
After my first chemo I didn’t feel too bad, but it wasn’t long before it hit and then this became the cycle for the next six months and 12 treatments. Feel ok, feel crummy, start to feel a bit better, feel ok and repeat.
Hair loss didn’t occur, though I was “follicily challenged” already, but food and drink started to not taste “right”. At first, I would think things were stale, or had passed their expiry date, but I soon realised that it was a side-effect of the chemo.
I was pretty worn out by the treatment and I did suffer some nerve damage in my feet and hands, resulting in having to have my cocktail of drugs adjusted. This caused some worry too, as I thought that by reducing certain drugs in my treatment to offset the neuropathy it might mean that it wasn’t as effective.
My wife was there initially to look after me and her work were very understanding when it came to collecting me from my chemo and I had a good network of friends who kept in touch and health visitors. I think my outlook is generally positive anyway, so I was just relieved to be alive at that point. Any sad thoughts I had over having a stoma were occasional but relatively short-lived. My wife would say it’s because of that bag that you are alive! Incidentally, I gave my bag a name – James Brown – as in the singer of ‘Papa’s Got a Brand New Bag’ – a joke I made to my sons on more than one occasion!
But, despite my positivity, I did sometimes wonder if I’d make it to Christmas, my next birthday etc – these were real worries, but again, I didn’t overly dwell on them or let them get me down – I just forged on. However, one thing that we did do was buy a dog. This was something that I’d always wanted, but in my mind, thought I’d wait until I retired. But, faced with this possibility that I might not survive my cancer, we decided to bring that plan forward so, in October 2018, just a couple of months after my chemo had started, we came home with a seven-week-old miniature labradoodle – Ziggy! He certainly kept me occupied and provided a lovely, if occasionally stressful distraction.
I received the “all-clear”, or what passes for one these days, in August 2023. Two years prior to this, I went back into hospital to have my stoma reversed. I found this tough as I was in for 10 days during lockdown-conditions, a sweltering heatwave and no visitors. Plus, there was the underlying concern that it might not work.
But the surgery was successful and after having ‘James Brown’ for over three years, I now just have a scar – a permanent reminder, though one that I’m grateful for. I do have the occasional dream in which I still have my stoma, so the first thing I do on waking is feel for my bag – always a massive relief when I find nothing there.
And, I must admit, that if my toilet habits change slightly, it does worry me. I think I also have something approaching ‘survivor’s guilt’ as I know I'm incredibly lucky, not just to be alive, but that I was able to have my reversal. My mam, sister and many others I know, or have known, were not so lucky. Also, I'll be 60 next year, the age my mam was when she died. And whilst I do believe that every birthday is a gift, and I’m not overly bothered about getting older, the significance of that particular age is not lost on me.
Despite this being the scariest, most worrying and disruptive time of our lives, we always looked for the positive and never took for granted the care, love and support of others.
