How keeping a diary of your symptoms might save your life


For the eighth time in nine months I faced my GP and told in as much detail as I could recall about my bone-numbing fatigue, the griping pain in my abdomen and my irregular bowel habits.

‘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.’

As the doors of the GP surgery slammed shut behind me, I felt a wash of shame.

In fact, my GP was so unconcerned by my symptoms, I’d begun to doubt they even existed. Was it all down to 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.

On that day I felt powerless to do anything about it. I didn’t have the courage to challenge my GP and looking back I realise I must have appeared young and healthy. Around 43,000 people are diagnosed with bowel cancer in the UK every year. While 60 per cent are over 70, more than 2,500 people under 50 are diagnosed each year and many face delays to treatment.

For the eighth time in nine months I faced my GP and told in as much detail as I could recall about my bone-numbing fatigue, the griping pain in my abdomen and my irregular bowel habits

For the eighth time in nine months I faced my GP and told in as much detail as I could recall about my bone-numbing fatigue, the griping pain in my abdomen and my irregular bowel habits

Rather than railing at the injustice of this, there is a practical 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.

A symptom diary would have given me strength to not be so easily dismissed by the doctor and to have believed in my own experiences more.

Speaking to other cancer patients through Mission Remission, the charity I founded in 2017 to support people moving forward after treatment, more than 65 per cent feel keeping a symptom diary would have sped up their diagnosis.

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.

As I did, people often think that turning up to a GP appointment is all you need to do to get treatment. 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.

Rather than railing at the injustice of this, there is a practical 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

Rather than railing at the injustice of this, there is a practical 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

I might not have waited 15 months for a diagnosis, by which time the cancer had become locally advanced, spreading to my abdominal wall.

I might have avoided the year of treatment: a punishing eight-hour surgery, seven months of chemotherapy and the many years of recovery afterwards.

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. It is incredible to me that I am now cancer free.

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. This is crucial. On the outside, no one can see your experiences or grade your pain.

No one could see I had cancer.

During the months I spent going back and forth to the doctor with symptoms, on some days I drank my way through a bottle at wine tasting evenings. On others, I could do a kettlebells class. Of course, on many days I was a wreck.

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. She felt her cancer would have been detected sooner had she used a symptom diary.

During the months I spent going back and forth to the doctor with symptoms, on some days I drank my way through a bottle at wine tasting evenings. On others, I could do a kettlebells class. Of course, on many days I was a wreck

During the months I spent going back and forth to the doctor with symptoms, on some days I drank my way through a bottle at wine tasting evenings. On others, I could do a kettlebells class. Of course, on many days I was a 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. Without one, reaching a diagnosis can be 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.’

Dr Jane Spurgeon, a GP in Berkshire, and a 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).

The vital details to log 

Note, a diary is not suitable if you have acute symptoms — seek medical attention.

Track each day and time the symptom occurs.

List triggers or patterns for each symptom (e.g. does it occur after eating a type of food, changing sleep pattern or stress?)

Describe the symptom — what does it feel like? (e.g. if it’s pain, is it sharp, achy, pulsing, radiating elsewhere?)

Describe the severity and impact the symptom has on your life.

After two-four weeks, take your diary to a doctor.

 

‘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. Her periods became heavier and more erratic, she had occasional night sweats, and from there, hot flushes.

‘The pattern suggested she was going into a slightly early menopause. This was something she hadn’t considered at her age.’

Symptom diaries have helped Dr Spurgeon diagnose diabetes, too. ‘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 the important information to record is the time (when symptoms occur and how long they last for), detail (what the symptom feels like) and triggers (what happens before the symptom begins).

‘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? What does it feel like? Is it pulsing? Aching? Sharp?’

Diaries are particularly useful for abdominal pain, when a cause is not always clear. ‘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? Is it on one side? Does it happen when lifting? Does it radiate down your legs or tummy? 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.’

Dr Hummerstone says a symptom diary actually saves time in appointments. ‘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.’

But as the pandemic has made people so fearful of their health, could a symptom diary fuel more health anxiety? Dr Hummerstone says the benefits outweigh the drawbacks.

‘One of my patients experienced breast pain. She thought it was present all the time. 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. Approximately 185,000 people in this country experience them every year, even out of pandemic times, according to figures. 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.

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