Bowel cancer: the stories of four brave women
Over 40,000 people are given a bowel cancer diagnosis each year.
Bowel cancer, like many types of cancer, has a profound effect on a person’s life. This Bowel Cancer Awareness Month, we wanted to find out what it’s really like to have bowel cancer from people who have the disease, or who are in remission. Bowel cancer affects people of all ages, yet regular screening in the UK is only available from age 50 in Scotland, and age 60 in the rest of the UK. The four women we spoke to were much younger than this when they were diagnosed, being in their early to mid-thirties at the time. We asked Andrea, Kate, Cara and Beth all about their experiences of living with bowel cancer, and how it causes life to change.
Bowel cancer symptoms & diagnosis
One of the key symptoms of bowel cancer is noticing that bowel movements have changed, perhaps causing more diarrhoea or constipation than is usual. Early diagnosis of bowel cancer is crucial to improving the chance of successful treatment, but sometimes the symptoms are overlooked or dismissed as being related to other gut issues such as irritable bowel syndrome or an inflammatory bowel disease like Crohn’s or ulcerative colitis.
Early symptoms included changeable bowels, bleeding from my bottom, mucus on wiping after a bowel movement, vomiting after eating - Beth
Throughout 2016 I increasingly became more and more poorly. I had most of the usual bowel cancer symptoms: pain, bleeding, went to the toilet up to 20 times a day, my fatigue increased incredibly. The month or so before my diagnosis I struggled to eat and vomited after eating. However, I had another illness called ulcerative colitis (since I was 6 years old) which has similar symptoms to bowel cancer, so things were put down to that as well as work life being pretty busy and stressful - Andrea
I had a slight change in bowel habits - I was not as regular as I had always been and I had started to experience some intermittent cramps at various times. Something just didn’t seem right so I went to my GP to get checked out. Almost a year after going to my GP with some concerns I was finally diagnosed with bowel cancer in February 2016 - Cara
Being diagnosed with bowel cancer is likely to be a huge shock. Andrea had even been tested for bowel cancer a little while before her symptoms occurred, and her existing bowel condition was a smokescreen.
I had absolutely no idea it could be bowel cancer, neither did my gastro consultant. We thought I was having flare ups, especially due to the fact I had a colonoscopy at the beginning of 2016 which showed no signs of cancer/precancerous cells. Even the consultant who told me those dreaded words “it’s cancer”, said my cancer care team were in shock from the results.
Cara had a family history of bowel cancer, which put her at an increased risk of also developing the disease, but whilst she was aware of this, she never believed for a moment that her early symptoms were indicative of such a serious condition.
I went to my GP because I was aware my father had had early onset bowel cancer in his forties and I just thought something wasn’t right. I had a variety of vague symptoms so cancer didn’t cross my mind at the early stage, it was only as I progressed through various testing that it started to look a lot like my father’s diagnosis - the severe anaemia and then a sudden drop in blood count meaning I required a transfusion.
Extreme tiredness and fatigue is another symptom of bowel cancer which can often be overlooked, as Cara told us.
I was also suffering from severe fatigue as a result of anaemia but I didn’t recognise my ‘tiredness’ as a major symptom - most people I spoke to said they were exhausted too. The difference being mine was not relieved by sleep.
As experienced by Andrea and Cara, fatigue and iron-deficiency anaemia are also possible signs of bowel cancer. Anaemia may occur due to bleeding from the tumour, and this was the first trigger for Kate’s bowel cancer diagnosis as well.
I had no clue I was going to be diagnosed - it was a complete shock. I went to donate blood and ended up with a cancer diagnosis. Other than being tired, I felt fit and well. I was told that my iron level was too low to donate blood and that I should get a blood test. GP tests confirmed I had iron deficiency anaemia but I didn’t fit the obvious criteria for blood loss in someone my age as I didn’t have heavy periods. My GP suggested maybe I was losing small amounts of blood internally and it could be the result of a stomach ulcer.
The bowel cancer diagnosis process may take some time and often involves multiple procedures to ascertain that the disease is present. Colonoscopy is the most common, which involves a tiny camera being inserted into the bowel, through the bottom, to allow specialists to look inside. Sigmoidoscopy is similar, but only explores the lower colon.
In March 2018 I had a colonoscopy and that’s when the tumour was discovered in my bowel - Kate
I had been in hospital for two weeks after being admitted via A&E due to my symptoms. The tumour was found in a colonoscopy, where later biopsies and a CT scan confirmed it was indeed bowel cancer - Andrea
I ended up in A&E in April 2016 with suspected rectal prolapse. Three months later, I had a flexible sigmoidoscopy which found a large polyp. I was referred for a full colonoscopy and removal of the polyp and finally informed I had bowel cancer in September 2016 - Beth
Like all cancers, each case of bowel cancer is given a stage and grade, which indicates how extensively the cancer has grown and if it has spread to other areas of the body. People diagnosed with stage 1-2 bowel cancer are highly likely to survive the disease. Stage 3 tends to be survivable by around two thirds of people. Stage 4 bowel cancer is advanced, and means the disease has spread to other major organs. ‘TNM’ staging is an alternative way of grading the seriousness of bowel cancer, and refers to the size of the tumour, whether or not cancer has spread to the lymph nodes, and whether metastasis (spread to other organs) has occurred.
I was advanced stage 3 (I had a T4 tumour, meaning it had grown through the bowel wall) that was thought difficult to operate on at diagnosis, so I had chemo prior to surgery to reduce the tumour burden. Unfortunately, following surgery and further chemo it progressed and secondary cancerous growths were found in my liver. I had more chemo and surgery, eventually leading me to being classed as NED (no evidence of disease) - Cara
I was initially stage 3c but have progressed to stage 4, graded moderately differentiated - Beth
Bowel cancer treatments
Treatment for bowel cancer will often involve surgery to remove the tumour, but may also involve procedures to remove sections of the bowel and chemotherapy to reduce the size of tumours pre-op, or to ensure that all cancerous cells are removed. Some people need a colostomy or ileostomy operation, which connects the colon or the ileum (last part of the small intestine) to a hole in the stomach (called a stoma). This requires the patient to wear a stoma bag to collect faeces, which can have a huge impact on daily life and takes time to come to terms with.
I found the emotional effects of the formation of the ileostomy very tough because I was not adequately prepared for this by my team before the surgery as they had stated it was unlikely. The colostomy was my choice in the end. I found this much easier emotionally because I was allowed to discuss all the options with the surgeon and come to a fully informed decision that I felt was best for me rather than being told what was going to happen - Beth
I had surgery in April 2018 to remove all of my bowel apart from my rectum (a ‘subtotal colectomy’). I started chemotherapy in June 2018 and completed six cycles over six months - Kate
I have had various treatments such as a right hemicolectomy (removal of the right portion of the colon), bowel and liver resections (to remove the cancerous parts) and multiple chemotherapies - Cara
My large colon was removed along with my tumour and an ileostomy was formed, which involved the end of my small colon being brought out and attached to my stomach, resulting in me having to wear a stoma bag. I had 7 months of chemotherapy - Andrea
Naturally, undergoing such serious surgery is challenging, emotional and stressful, both on the lead up and when coping with the aftermath.
It was hard to go through major surgery but I knew I needed it to save my life. I recovered well and the scars are small. Adapting to life without a large bowel has been a challenge emotionally and physically. My body doesn’t work how it used to and I got depressed that certain foods I used to love eating now upset my stomach or cause pain or bloating. Over time it’s become easier and I’ve learnt what foods I can’t tolerate. Fingers crossed, I won’t need more treatment, just surveillance - Kate
The thought of surgery was petrifying! I was anxious, there were a lot of thoughts whizzing around my mind. However, I had a few weeks between being told I needed surgery to the surgery date itself, so I was able to talk it over with family and my boyfriend, as well as my clinical nurse specialist and stoma nurse. I do need to have further surgery to remove my rectum, which is currently sewn to tissue internally - Andrea
I see surgery as short term pain for long term gain and find this physically and emotionally easier than other treatment. Physically, I have recovered fairly quickly from the surgeries. It is very likely I will need more treatment in the future - Beth
Chemotherapy is often a gruelling treatment and has a huge physical impact on the body.
My chemo days were long, I used to arrive in the day unit at 8.30am and it could be 6pm before I finished depending on the infusion rate. My second line chemo was similar although I was able to wear a cold cap in during this to try and reduce hair loss- that was quite the experience!! Day to day, I learned to allow my body to just rest and not beat myself up if I spent the day after chemo in bed or watching movies. Without my mum helping me to cook and clean - I’m really not sure how I would have got through it. During chemo, I was unable to do some of things that I loved to do previously because at times walking to the front door was exhausting - Cara
I had chemo every three weeks. I would go on a Monday to hospital and have IV drugs then take oral chemo drugs at home for two weeks and then a week off before starting the next cycle. For a few days following that, I was very sensitive to the cold so had to wrap up even in the summer, wear gloves to go in the fridge and all my drinks had to be lukewarm as the drugs narrowed the larynx and cold drinks would cause spasms. I would rest as much as possible and family helped with the kids the fatigue was awful and the tablets caused stomach pain - Kate
The importance of friends and family
All our women emphasised just how important it is for a person with bowel cancer (or any cancer) to feel supported by those closest to them, and that living with the disease affects relationships in both positive and negative ways. Many also found that developing new networks and connections with others who are living with cancer was also a fundamental coping strategy for them.
My friends and family have been amazing. It definitely shows you who your true friends are and for me there were also some people I didn’t know that well who have really helped me through it. I’ve made many new friends who are also in the same situation - having that peer support has been invaluable - they just get it, and they also understand that the impact of cancer doesn’t just go away when you finish treatment - Cara
My family and friends were amazingly supportive during treatment and I couldn’t have done it without them but sometimes it’s easier to talk to other people that have been through it as they have a better understanding. I have found that since I’ve finished treatment people have drifted and don’t check in as much. This has been quite hard at times as the time after treatment is often worse emotionally. Talking to others I’ve met through Bowel Cancer UK has helped me feel that I’m not alone - Kate
If anything, bowel cancer has brought me closer to family and friends. There are times that family forget what I'm dealing with and expect me to do things that I just can't, which can be tricky - Beth
Some people I hadn’t spoken to in years or who were really just acquaintances were fabulous, and others who I thought were good friends disappeared, some still to this day. A big thing that has made a difference to me, is finding a community. After surgery, I actively went on social media and found people who were or had been through similar. I now chat and meet with these people regularly and can say many of them are my close friends. It’s great to talk to people who understand, who get it; you can share advice, stories, moans and laughter. You have that extra support system and help each other - Andrea
Being able to talk, share and be open about their experiences of living with the disease is key to these women and, as Cara points out, the way that other people approach the topic of bowel cancer in conversation is really important.
I’ve appreciated when people have listened to what I’ve had to say about how I am feeling and don’t just throw clichés around. I’m happy talking about my cancer and whilst there are things that make my eyes roll when people say it, I’d rather they talk to me than be scared to say the wrong thing.
How life changes when you have bowel cancer
Life inevitably changes the moment a person is diagnosed with a serious, chronic condition. Any type of cancer will play a huge part in a person’s life and future, but at the early stages, they may feel that life will never be the same again. We asked our contributors how their life had changed since their diagnosis.
Living with cancer has changed my ability to plan my life - the impact of fatigue can be debilitating and you never know when you will hit that brick wall. I’ve had to learn to listen to my body and what it can do - Cara
I am managing to do everything I did before, I work and exercise and socialise but I have to be careful what I eat and drink and I’m always scanning places for the nearest loo! - Kate
I am slower than I used to be, but I have learnt to listen to my body even more and take it easy when I need to. My diet has changed due to my stoma. I still have fatigue. I have arthritis which has spread since finishing treatment and I have a delightful pain in my rectum! However, this doesn’t stop me, I still try to smile through it and carry on. I go to the gym a couple of times a week. I am back at work, I meet with friends, I may watch far too much Netflix at times. I also have a dressmaking hobby. I went for a relaxing holiday to Spain to celebrate ending chemotherapy and will be travelling to New York soon. Things may change but you can still be you and do things you would like to do - Andrea
I can still do most of the normal things I used to do, but I just find I can't do them for quite as long. I have recently started riding my horses again but my lung capacity is now reduced so I can't ride for as long or as energetically. I feel tired more quickly so I often head home earlier from social events than I used to. At the moment my good days outweigh the bad ones. I have been off work for some time due to treatment but I am currently looking at the possibility of returning to work once my current course of chemotherapy is completed - Beth
‘The fear’ and the future
Many bowel cancer patients, even when they are clear of the disease, have to have regular checks and live with the fear of cancer hanging over their heads.
I am currently in remission and being monitored every three months with bloods and scans. At this point I don’t need further treatment but, having advanced disease, there is a high risk of reoccurrence. Right now I feel so grateful that my treatment has been successful but I am fearful that my cancer could return at any time, like it is looking over my shoulder able to strike at any time. I was also diagnosed with Lynch Syndrome, a hereditary condition predisposing me to cancer, which means I will be under surveillance for life. I will also need to consider pre-emptive surgery to reduce my risk of endometrial (womb)/ovarian cancers - Cara
So far I’m feeling positive about the future but there is always the voice in my head saying what if it comes back but I think that’s normal for anyone to feel like that after cancer. In the meantime, I’ll make the most of living! - Kate
The future may feel uncertain for our women, but in living through bowel cancer and its extreme physical changes, they have found that their mentality and attitudes towards life have changed drastically too.
I have a new perspective thanks to cancer, life is very precious so I try not to sweat the small stuff and make the most of opportunities - Kate
Living with cancer has changed my priorities and outlook on life, I value the small things so much more and focus on family time and experiences. I am hopeful for the future, but in all honesty try not to think about it too much because it is out of my hands, so I focus on the now and making the most of that - Beth
The future may be uncertain. I do think about the ‘what ifs’. I think about my next surgery and what may change with that as well as thinking have I missed the chance to have children, will my cancer return. These things will always niggle away but I do try to live my life as much as I can in the now, as cheesy as it sounds my view in life may have changed. I try not to sweat the small things, try not to get sucked in with my work life, I try to surround myself with good people, I listen to my body and I hold those people I love close to me. Life is pretty special so you’ve got to live it that way - Andrea
We are extremely grateful to Cara, Kate, Beth and Andrea for sharing their personal journeys with us. If you, or someone you know, has bowel cancer and would like to talk to other people living with the disease, Bowel Cancer UK provides an online forum.
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- May 13th 2020