TWO big issues have haunted me since my treatment for bowel cancer in 2015 – insomnia and sudden urges to go for a poo at awkward moments!
The good news is trouble sleeping since my surgery and all the radiotherapy & chemotherapy is easing – thanks to finding the right balance of pills, potions and relevant bits of mindfulness and meditation to relax before bedtime.
Not so positive are my attempts to get to grips with sudden and urgent bowel movements – which many bowel cancer patients and survivors have to live with after treatment. This really restricts mobility and lifestyle and I’ve had to abandon several work-related trips to avoid mishaps while travelling.
If you are a fellow sufferer, I’ll outline my latest attempts to try to overcome this problem towards the end of this blog; but, first, I want to share my partial success in beating the bedtime blues.
I can’t say it has been easy and I know many people who have never had cancer have trouble sleeping.
So this might help them, too!
For me trial and error with various strategies and herbal remedies has been the key – combined with limited use of prescribed sleeping pills and off-the-shelf sleeping tablets (Tesco’s own-brand Sleep Aid is the best off-the-shelf medicine I’ve found at £2 for 20x25mg tablets).
Counselling and mindfulness
I’ve also been seeing a trained counsellor for nearly a year on my GP’s advice and joined therapy group sessions last year run for patients who may have survived cancer physically, but suffered emotional scars from the ordeal. The Trinity Holistic Centre, a charity linked to James Cook Hospital, Middlesbrough, ran these and gave me the chance to try to master mindfulness and meditation.
All in all it has probably taken 15 months before finally getting my sleeping patterns more or less under control and I can now go four or five days between taking a prescribed sleeping pill and limit myself to taking just take one 25mg tablet when I need to be up bright and early for something important and require a helpful little push into slumber land.
Mind over matter is part of the solution and I try to unwind from around 9pm onwards and stop work earlier. As a freelance journalist and PR adviser with uncertain hours this can be difficult, especially when deadlines are approaching. But it is worth aiming for! I also find reading reasonably heavy non-fiction for a chapter or two before bed takes your mind off daytime worries. Currently I’m learning what led to the outbreak of World War 1.
Rooibos herbal tea
Other tricks are pretty simple and include not drinking any alcohol at least two hours before bedtime. I also suggest a cup of calming herbal tea an hour before bed. My counsellor, Sarah, suggested naturally caffeine-free Rooibos and I’d recommend the herbal drink made from leaves of the South African shrub of the pea family. The name comes from the Afrikanns for ‘red bush’.
Sarah also encouraged me to persevere with the mindfulness and relaxation techniques, but don’t expect too much from self-meditation. And avoid watching sleep aid videos too late at night. They can increase your anxiety and the so-called ‘calming’ voices can be annoying, especially if it is an American slurring their words.
Clear the mind
What you are aiming for is the most appropriate way to ‘clear-the-mind’ and ‘park’ worries and concerns until the morning. It takes time to find what works, so don’t give up!
Putting the mobile phone on ‘Flight mode’ an hour or two before bed is another important part of ‘switching-off’ process. At the very least ignore emails until the morning and dim the display!
If you realise you are unlikely to sleep naturally, allow yourself a small 25mg dose of a sleeping tablet or Sleep Aid. Hopefully that won’t get you addicted if you use them sparingly – but they can help to clear the mind, especially if you believe in the ‘placebo effect’.
Regaining bowel control
The bad news is that I have not regained bowel control since my treatment for rectal (bowel) cancer. This is a common problem after bowel surgery and I was warned not to expect to expect too much in the early days, weeks or months.
But it is now two years since my operation in April 2015, which was preceded with a five-week daily blitz of radiotherapy and chemotherapy and followed by six months of chemo.
As mentioned in my last blog, my GP suggested I try a new daily regime whereby I take a 2mg Loperamide or Imodium tablet around breakfast time to prevent urgent needs to go to the loo during the day and then try to relieve constipation after my evening meal by taking Fybogel high-fibre or Normacol sterculia granules.
It gave mixed results. Normally you take Loperamide or Imodium when you want to stop diarrhoea and taking a tablet, or two, before venturing out gave me a few hours security and allowed me to go early morning swimming more often.
But my stools are usually quite hard – and not like diarrhoea usually – and I was getting constipation and suffering from a dry mouth and blocked nose! Then every three days or so I would need to spend several hours on the loo because of explosive and unpredictable bowel movements.
I rang Tracey, one of the bowel cancer specialist nurses at James Cook, for advice and she suspected I could be suffering from dehydration from taking Fybogel every day. Apparently you need to drink eight glasses of water daily while taking Fybogel, which I didn’t know! She also suggested a smaller dose of Loperamide – tricky as they are very small tablets.
Sudden, difficult-to-control, bowel functions were very common after bowel surgery, she said, especially when the colon had been rejoined in the rectum after the suspected cancerous area had been cut out.
To make matters worse, I had my gallbladder removed a couple of years ago, which could explain why I often need to go to the loo for a big poo about half-an-hour after eating.
Reducing reliance on toilet-control drugs
So, I’ve stopped taking Fybogel at night and I am now preparing to cut down my reliance on Loperamide, or reduce my intake – easier when you take it in liquid-form, which is difficult to get on prescription.
I still carry Loperamide or Imodium instant melts around with me – just in case!
I’ve also played about with my diet – from high-fibre to low-fibre and back again without much impact. I’ve cut down on red meat, increased the amount of fish and chicken I eat, and now avoid having fruit and fibre if I am going out in the morning.
And when I find a few days when I don’t need to venture far from the house, I will try going without Loperamide or other (toilet-control) medication to help discover what my ‘new normal’ function is. Then I’ll take again to the medics and nurses on how best to proceed. If it is a disaster I’ll only be metres from the nearest loo.
I’ll let you know how I get on in my next blog. Until then, look after yourself!
See previous blogs in my Cancer-talk archives.