A bowel cancer diagnosis can have a devastating impact on everyone involved; not only on the patient but their family and friends too.
Research by the charity Beating Bowel Cancer has highlighted the hidden anguish of loved ones– leading to sleepless nights, fear, loneliness, guilt and even family break-ups.
Related: How to support someone who is caring for a loved-one with bowel cancer
Paula Madden, colorectal nurse consultant at Beating Bowel Cancer, said: “Cancer is not just about the patient. It does affect the whole family in some way or another.
“The closest person is usually the partner or spouse and it can appear that they are doing well because they are getting through each day, doing the washing, sorting the bills out. It appears that they are coping. But the emotional level hasn’t even been touched because they haven’t had time to deal with that side of things.”
As part of the research, family members of people with bowel cancer were asked to keep a diary. The honest accounts of the issues they face are painfully revealing, with spouses and close relatives struggling to cope. One of the recurring themes from the study is that feelings of helplessness, panic and isolation can be all consuming.
Steve Guy, 53, who lost his wife Wendy to bowel cancer at the end of last year, said: “It’s a very lonely place because you really don’t know what to expect and there isn’t much help and support for partners at all.
“I didn’t get any support, I think all of the stuff that I found out about bowel cancer and what my wife was going through I had to find out for myself. It’s like a waking nightmare most of the time.
“Nobody is talking to partners, nobody is taking you aside and saying this is what’s going to happen; this is what your loved-one is going through or anything like that. No one is looking after us.”
Rose Jelley, 64, from Kibworth, Leicestershire, had only known her husband Tim for six months when he was diagnosed with bowel cancer. “This was a very new relationship. We’d just bought a new house and I remember when he was diagnosed looking out through the window and thinking, ‘well, will he ever do the garden here?’
“Emotionally it was devastating because there was this fit, healthy man in his early 50s. We were embarking on our lives together and this great big wham came along and you really didn’t know how to cope with it.
“I think sometimes it’s worse though when you’re not going through it, when you’re not the patient because you can only look on from the side-lines.”
Many people find it difficult to get help and support for themselves – and thinking ‘what about me’ can seem perverse when your loved-one is going through so much.
But in fact looking after yourself and seeking support will be beneficial to the patient too, says Paula Madden.
“If the person going through cancer knows that the closest people around them are being supported it will help them to have a more positive and calm approach as well.”
If a loved-one has recently been diagnosed with cancer or a serious illness there are several ways you can help yourself, and those around you.
- Ask for help with day-to-day tasks. Paula Madden says: “It is very easy for the closest person to the cancer patient to get caught up in lots of necessary physical tasks, which then takes away the time they need to actually reflect on what has just happened to them as well as their partner. Always accept help from whoever offers it. People do feel appreciated and if you say no once they may not ask again.”
- Allow yourself time: Try to carve yourself some ‘down-time’. Paula Madden says: “You need time to grieve for the life you thought you were going to have and re-calibrate for the future.” Plans for the future can still be creative and positive.
Simon Hawkins 59, from Winchester, was diagnosed with advanced bowel cancer in 2010. His partner Penny helped to looked after him throughout his illness and went to great lengths to make him healthy food that he could enjoy – one of the side-effects of chemotherapy is that it affects taste. The meals she came up with were so successful for Simon that she developed them into a book called The Chemo Cookery Club for other bowel cancer patients (see the foot of the page for more details).
- Be honest. Paula Madden says: “It’s ok to say to your partner or family member ‘I’m finding it tough’. You can cry together and talk together. Crying releases anxiety – holding it in is not good for your body.
- Do consider a support group or therapy. Paula says: “Whatever you think about them, try and keep an open mind. And go not just once but two or three times because it could be the second or third time before you get something from it. Whatever your judgement is before, when you’re in it it’s a completely different ball game.”
- Reach out to people who have been through something similar. Rose Jelley’s husband Tim has now been given the all-clear. She says: “I think I’m quite a strong person but there were a few times when it all just got too much for me – I didn’t have anyone with the same sort of experience at the other end of the phone to say yes it will get better.” Now Rose is that person: “Because of everything I have been through I am able to help others.”
- But make sure you find something that works for you. A support group may not work for everyone. If you find a walk in the countryside helps you, then do that instead.
For more information on how you can get support, whether you are affected by bowel cancer directly or indirectly, visit www.beatingbowelcancer.org. Or call Beating Bowel Cancer’s helpline on 020 8973 0011 to talk with one of the nurses about any concerns you may have.
April is Bowel Cancer Awareness Month. The majority (95%) of bowel cancer cases occur in people over 50, but it can affect anyone of any age
Each year in the UK around 41,000 people are diagnosed with bowel cancer and around 16,000 people die of the disease. But despite such alarming statistics, the good news is that bowel cancer can be successfully treated in over 90 per cent of cases if caught early.
Related: Learn more about bowel cancer symptoms
Symptoms of bowel cancer
Anyone experiencing one or more of these symptoms for three weeks or more should go and see their GP:
- Bleeding from the bottom or blood in your poo
- A persistent change in bowel habit, especially going more often or looser stools
- Abdominal pain, especially if severe
- A lump in your tummy
- Unexplained weight loss or tiredness
Beating Bowel Cancer is the support and campaigning charity for everyone affected by bowel cancer. They provide vital practical and emotional help – on the phone, digitally and face to face.