In front of my GP for the eighth time, I shared as many details as possible about the bone-numbing fatigue, my gripping pain in my abdomen, and my irregular bowel movements.
‘It wouldn’t be fair to refer you for urgent tests,’ the doctor had told me as I sat there, then aged 29.
‘What of the 70-year-olds?’ he said. ‘They’re a higher priority — they could have bowel cancer.’
I felt a sense of guilt as the doors of my GP surgery closed behind me.
In fact, my GP was so unconcerned by my symptoms, I’d begun to doubt they even existed. Is it just my imagination?
It wasn’t. A tumour was growing in my abdomen — I did indeed have bowel cancer — but it would be another six months before I got the diagnosis.
It was that day that I realized how powerless it felt to make any changes. I didn’t have the courage to challenge my GP and looking back I realise I must have appeared young and healthy. Every year in Britain, 43,000 are diagnosed as bowel cancer. 60% of those diagnosed with bowel cancer are older than 70 years old, but more than 2500 people younger than 50 are being tested each year. Many are also at risk for delayed treatment.
In front of my GP for the eighth time, I shared as much as I can recall about bone-numbing fatigue and the pain I felt in my stomach and irregular bowel movements.
Instead of complaining about the unfairness, there is an alternative: keeping a symptom log. It sounds simple, but by logging bodily changes, you can share concrete evidence with your doctor that something isn’t right.
I would have kept a symptom log to give me the strength and confidence to believe in myself more.
When I spoke to patients with cancer through Mission Remission (a charity I established in 2017 to support those moving forward from treatment), more than 65% felt that having a symptom log would have helped them get a diagnosis faster.
Symptom diaries can help diagnose other illnesses too, such as endometriosis and migraines — yet only 20 per cent keep one when needed, according to a Mission Remission survey.
Like me, many people think just turning up at a GP office is sufficient to get the treatment you want. We often don’t prepare for these conversations or think about what information to share with doctors.
For me, a symptom diary would have highlighted how regularly I experienced fatigue and its impact on my life: I was so bone-shatteringly tired some days that I’d crumple into a heap after a day’s teaching at secondary school, unable to get up until the next morning.
It would have recorded that I was experiencing intense griping pain not now and again but most days from 3am, or that I’d go weeks without going to the loo, or the sporadic blood in my stools.
Instead of ranting about this injustice, there’s a solution. A symptom diary. It sounds simple, but by logging bodily changes, you can share concrete evidence with your doctor that something isn’t right
Although I may not have waited for 15 months to get a diagnosis, it was too late. The cancer had advanced locally and spread to my abdominal walls.
It is possible I could have avoided the entire year of treatment. A punishing eight-hour operation, seven months of chemotherapy, and many years of rehabilitation later.
It wasn’t until I’d endured a sigmoidoscopy (in which a thin tube with a camera on one end is used to examine the lower colon), two ultrasound scans, a CT scan and finally a colonoscopy (which examines the entire length of the colon) that I was eventually diagnosed. My cancer is gone.
Symptom diaries are a vital tool to log bodily changes — anything from hair loss to abdominal pain, down to discoloured toe nails.
The diary logs how long you’ve experienced each symptom and what impact they’re having on your life. They help you prepare for doctors’ appointments and to share precise information with them. It is vital. Outsiders cannot see or judge the pain you feel.
It was impossible for anyone to see that I had cancer.
In the months that I was going to the doctor for my symptoms, I also drank my entire bottle of wine at wine tasting nights. Some days I was able to do kettlebells classes. I would be a complete wreck on some days.
Cancer patients are so passionate about sharing the benefits of symptom tracking that one campaigner, Beth Purvis, a mother of two from Essex, whose diagnosis was delayed by two-and-a-half-years, collaborated with Bowel Cancer UK to develop an online diary for those experiencing bowel changes — this can be printed out to complete and show to healthcare professionals.
Tragically, Beth passed away in June this year.Much like myself, her GP thought it was ‘probably just a bit of IBS’ (irritable bowel syndrome, a common condition involving cramps, bloating and other bowel problems). She was told she ‘had to try and live with the symptoms’.
It wasn’t until she went to A&E that she was eventually diagnosed with stage three bowel cancer. If she had kept a log of her symptoms, it would have helped her detect the cancer earlier.
In the months that I was going to the doctor for my symptoms, I also drank my entire bottle of wine at wine tasting nights. Other days, I could even do a class in kettlebells. On many days, I was an absolute wreck.
And it’s not just bowel cancer — experts say that many of us would benefit from keeping a record when we start to experience new symptoms. A diagnosis without one can prove difficult.
As Professor Helen Stokes- Lampard, ex-chair of the Royal College of GPs, explains: ‘It can be really difficult to pinpoint the key symptoms of concern when patients first come to see us, especially when they look so similar to other, less serious conditions.
‘The last thing GPs want to do is alarm patients unnecessarily by suggesting they could have cancer, for example, so having access to something constructive like a symptom diary to record things in a standard way could help us unravel what’s going on. Ultimately, it could save precious time in getting patients the care they need.’
Jane Spurgeon (a Berkshire doctor and breast cancer survivor) agrees. Looking at a pattern and timeline of people’s experiences and symptoms helps her ‘see the wood for the trees’ within lists of issues. ‘Prioritising these symptoms by severity is also crucial,’ she says.
When it comes to how long you need to keep a diary for, Dr Leila Hummerstone, a GP in Harrogate, suggests two to four weeks: ‘Of course, that depends on the circumstances. If you’re experiencing an issue a lot over two days, you know you need to seek help sooner. And if it’s serious, seek support straight away.’
She suggests keeping a diary for longer — for two months or more — for women trying to identify cyclical problems such as with periods (eg, endometriosis, where tissue similar to the lining of the womb grows elsewhere in the body).
‘Some diagnoses can take even longer for the pattern to become clear,’ says Dr Spurgeon.
‘A 42-year-old woman came to see me with a year’s worth of symptoms, diarising what was happening with her periods and when.
‘First, her mood dipped and anxiety increased. She experienced heavier periods and increased anxiety. Night sweats became more frequent, followed by hot flushes.
‘The pattern suggested she was going into a slightly early menopause. This was something she hadn’t considered at her age.’
Dr Spurgeon has also used symptom diaries to diagnose diabetes. ‘An overweight 59-year-old man came to see me with a symptom diary. He’d been a gardener but had retired two years previously due to long-standing back pain.’
‘For several months he had no energy. If he did go out, he’d come home and sit on the sofa and would almost instantly fall asleep.
‘He’d previously enjoyed an active sex life, but was experiencing erectile problems, making him feel embarrassed and frustrated.
‘A little time later, he noticed an itchy red rash in his groin which he couldn’t heal no matter how many types of cream he tried.
‘With the help of a carefully kept symptom diary, the pattern and symptoms suggested Type 2 diabetes. Blood testing confirmed this, and we were able to commence treatment for both this and his erectile dysfunction — which can be a sign of diabetes.’
Dr Hummerstone says it’s important to keep track of the times and duration of symptoms.
‘For headaches, logging triggers is so important,’ Dr Hummerstone says. ‘Things such as light changes, food, exercise, sleep, emotion or screen use. Looking at the subtleties between people’s experiences helps to diagnose between issues like migraine or eye problems.’
Dr Hummerstone says it’s also important to describe pain. ‘Think: does it radiate from the site? It must feel. It may feel like you are pulsing. Itching? Sharp?’
When the cause of abdominal pain is unclear, diaries can be very useful. ‘Keeping a food diary alongside your symptoms can help differentiate between irritable bowel syndrome and inflammatory bowel disease (IBD),’ says Dr Hummerstone
‘They can cause similar symptoms of constipation and diarrhoea. If there’s no pattern between diet and symptoms, you might start to think the person has IBD [a more serious illness involving inflammation of the bowel].
‘If it’s back pain, does it get worse when you’re lying down? Do you feel it only on one side or both? Is it a result of lifting weights? Do you feel it radiating down your legs? Is it sharp or achy?’
‘If you experience it when lifting, I’m likely thinking it’s mechanical and caused by a slipped disc — so you’d be treated with physio and painkillers.’
According to Dr Hummerstone, a symptom log actually reduces the time spent in doctor’s visits. ‘Often, people come with a list of ten concerns, but can’t tell you anything about them.’
‘By logging bodily changes, it focuses people’s minds more. They really think about what’s happening and so it helps them communicate better — that’s so important when GP appointments are only ten minutes long.’
A symptom diary could be used to fuel health anxiety, as people are so afraid of the effects of the pandemic on their health. Dr Hummerstone claims that the benefits far outweigh their drawbacks.
‘One of my patients experienced breast pain. It was constant, she thought. But on keeping a symptom diary, she was reassured that it was linked to her cycle and was hardly there at all.’
The fact is, I’m far from alone in facing cancer diagnosis delays. According to statistics, around 185,000 Americans experience it every year. Symptom diaries have the power to change that — and to save lives.
n GO TO mission-remission.com/symptom-diary to keep track of symptoms and body changes.