My name is Claire and I am now 50! I can’t remember the exact start of my journey, as it seemed to be misdiagnosed for years. The true diagnosis was 3 years ago. After many online consultations and telephone conversations with the GP, I was finally seen face to face.
My original symptoms were mixed with menopausal symptoms. The only underlying common factor was the urgency and frequency of needing a bowel movement. The GP didn’t seem concerned by this, and it was left for me to deal with. Then my bottom started itching. After googling symptoms—including thinking I had threadworms—I put it down to piles. Off to the local chemist for the pile cream, which at the time I found humiliating, but little did I realise that was just the start of the humiliation!
The cream didn’t work and I started to feel pain sitting down. Back to the GP for yet another telephone conversation, where I was prescribed more haemorrhoid cream and told if this didn’t work they would finally see me. Obviously it didn’t work, and I was seen by my GP—the first of many bottom examinations! Mortified by it, but this is where they discovered it didn’t feel consistent with piles. It was also the first time he asked about my poo, which was thin and snake-like. Trying to reassure me it was fine, he said I would be put on a two-week referral to the hospital, and the letter may have the word cancer on it. WTF.
At the first appointment, with my second bum examination, the consultant said it was a fissure and gave me a cream and a numbing cream for the pain, then as an afterthought said he would refer me for a colonoscopy.
Well, I had no idea what that was, so back home and Google search—I was really in for a treat…
This all seemed to happen fast and my appointment arrived, along with a wonderful mixture to drink. Nobody explained the extent of this concoction—how awful it tasted and the dramatic effect on the bowel. Along with the white diet a week before… what a treat!
The colonoscopy itself—I was expecting to be asleep, but no. Despite a sedative, I very clearly remember the procedure and the pain. The best bit was the cup of tea and biscuits after. While in recovery I could hear the nurses saying I wasn’t to leave as the consultant needed to see me. Hopping out of bed refreshed from my tea and re-energised for my supper, I was ready to go. The consultant met me and asked if I was being picked up by someone. I explained my mum was joining me at some point. He said he needed to talk to me. I said that’s fine, go ahead.
Off we went to a cosy room with nice furniture and a box of tissues in the middle of the table. Here he literally just came out with it… they had taken biopsies which would confirm the diagnosis, but he was sure it was anal cancer. My world fell apart. First thought: am I going to die? Second: will my hair fall out? It wasn’t long before my mum joined me and we made our way home.
I then had to tell my husband, who from the very beginning was very supportive. We cried together, then laughed, and then did it all again—while drinking gin.
My reaction the next day turned to anger. Why was I not diagnosed sooner? Then back to Google to see what this disease was all about. My mind was blown with the information, and until a full diagnosis I couldn’t tell what my treatment was to be.
I have always enjoyed social media, so I immediately started up a blog and announced my disease to the world—or at least to whoever would read it. The supportive messages came flooding in. However, I clearly stated it was not for sympathy; I was sharing to increase awareness of the condition.
Time slowed down waiting for appointments: CT scans, MRI, and a PET scan. My favourite being the CT scan—the feeling as the contrast dye is injected is certainly different. Despite being warned, I still had to check I hadn’t had a wee 🤣.
When the final results were in, I was diagnosed with stage 3. Currently I was still able to go to the toilet, but I was warned the treatment may cause swelling and an emergency stoma may occur. On a positive note, the chemo wouldn’t cause hair loss 🤪.
It seemed like forever and a day for the first treatment: a chemo infusion and radiotherapy, followed by a further 27 radiotherapy sessions and daily chemo tablets.
Before the radiotherapy treatment my bladder had to be full to protect the surrounding area. This is extremely difficult 🤪🤓 especially if the scan was running late. I learned very quickly how important it is to take the anti-sickness tablets an hour before the chemotherapy. The sickness was unreal, but soon under control once I established a routine.
The first week I was happy to drive myself into treatment, but the chemo caused loose bowel movements and I needed to get to the hospital quickly to prevent accidents! However, this then impacted my liquid intake, and on more than one occasion I was taken off the scan and told to drink more water.
By the second week my appetite suppressed and everything tasted different. Coffee and tea were some of the worst tastes. My diet was very limited—to cucumber, tomatoes, white rice, cockles, to name a few of the delicacies.
Weekends I was off any treatment and enjoyed a small gin and tonic or a glass of wine, but the food didn’t change.
Weekly my skin was checked, as I was warned it may get sore. Sore was an understatement—the skin went from slightly red, to red, to very red, then burnt with ulcers and blisters. Unable to wear pants, I had to wear men’s boxer shorts, which had to come off as soon as I got home. The heat was so intense I sat on a pet’s cool mat with a fan between my legs, turned from my front to my back to cool each area. The only pain relief was paracetamol, and oral morphine would cause constipation. Let me tell you, paracetamol is not a pain relief. I actually didn’t think they would continue with the treatment, but they did. The nurse gave me some burn pads with sterile water to apply to the area. I would like to say I put my big girl pants on and carried on—but no pants… but I did carry on.
My day came and I finally rang the bell, and I rang it loud and proud. It was now time to heal. I came home with a bag of goodies—from silver cream, pain relief, burn pads, anti-diarrhoea pills, fibre powders—it was like Christmas 🤶.
The skin started to heal and scab over, and I slowly stopped walking like John Wayne. I needed the morphine for the pain relief, but wow—the constipation was something else.
Slowly my appetite came back, but as soon as I stopped the morphine my bowels decided to empty very regularly and with little warning‼️
Throughout the whole process I blogged my journey. Little areas, in order to keep my dignity, were not documented, but as much as I could, I did 😳.
So where are we now? Three years clear, with regular 6-month check-ups but no more scans. I find this difficult as the scan gives you peace of mind, and I am not partial to the internal probing 😣.
I have physiotherapy to help strengthen my pelvic floor to help control the urgency to go to the toilet. I have many food intolerances now and mornings are particularly difficult. Trips require planning—knowing where toilets are and how far they are, etc. My life was ruled around the toilet.
I have had a breakthrough… I took the decision to start weight-loss jabs (Wegovy), all done via a pharmacy with GP knowledge. As my diet changed dramatically, I put on over 2 stone, so along with the toilet issues my self-esteem was very low. Within weeks my toilet urgencies reduced, to the point they are now very rare. Weight loss was slow, but I lost the 2 stone and it has remained stable. My oncologist is happy for me to continue; however, financially it’s draining me, but I can’t go back to the life I was living before.
So that’s where we are today! Healthy, happy, and alive! I still get anxious on days out but not nearly as much. When I tell someone I have had cancer, the first thing they say is breast? Imagine their faces when I say, “No—BUM!” 🤣 I get joy in it 🤣🤣. They asked…
And my aim is to tell my story, spread the word, and not be ashamed. I am a bottom warrior!
