Bowel Cancer Awareness Month - Barbara's Story

4 minute read time.

This month is Bowel Cancer Awareness Month. Volunteer reviewer Barbara writes today's guest blog about her experience of bowel cancer. She writes about how telling her family helped her cope and about why it's important to see your doctor if you see signs of bowel cancer.


Twenty-two years ago I had bowel cancer.

I had no pain, and no piles but I lost a stone and a half very quickly, without trying. I knew something was very wrong when there was quite a lot of fresh blood in the toilet bowl. It was Christmas, and I had to wait a few days before visiting my GP. 

Having nursed long ago, I suspected that the bleeding without pain was serious. Therefore I needed to see a doctor, and probably have treatment. If I guessed right, I could be out of action and hospitalised for some time. So, for me, it was logical to tell my husband that I had a GP appointment and why, and then to tell the rest of family and friends after diagnosis.

At that point I told my family about the possibilities, and of course they were all very upset. But I felt it was only fair to tell them, as they would inevitably be affected in various ways. Also, if I hadn’t told them, then my daughter wouldn’t have told her friends, and then I wouldn’t have been provided with the information that proved vital in my choosing the best treatment for me.

Apart from all this, we have a good relationship and I think they would have felt hurt if I hadn’t told them. Our children were in their early twenties at the time of treatment.

My GP referred me to a general surgeon for a check-up, and a small biopsy was taken. Meanwhile, a family friend gave me a phone number for another surgeon who did a different operation. I phoned the number and was able to attend early the next day before their regular clinic. I saw a surgeon who could perform an operation, and didn’t expect to leave me with a permanent colostomy.

Cancer was confirmed at my next attendance with the first surgeon my GP referred me to, and that surgeon suggested a permanent colostomy. So, I got back in touch with the second surgeon, and things got under way. The treatment would involve a big operation with part of the small bowel taken out and used to make a new rectum. I went up to London for the operation, and back to our local small hospital to recover.

The temporary colostomy was removed after a couple of months, and the process of getting back to normal began.

It was difficult at first, and for quite a while later, to sort out my diet. Too much fibre, and I had diarrhoea, but this slowly improved a bit. Imodium® proved useful, but needed to be taken in moderation, as it was easy to go to the other extreme and become constipated, when straining would cause piles.

This was all twenty-two years ago, and I realise how lucky I have been. The cancer being low down made it very obvious that I was passing blood, and so I could seek help in good time.

I would encourage anyone who has any of the typical symptoms (see the image below) to seek medical advice quickly, and tell family and friends why. It will also make it easier for yourself, as you may ask for help if needed, to attend appointments etc.

For me, not telling my family in particular might have caused unhappiness. I didn’t want them to think that I considered them unimportant. And, if results of tests turn up a less serious reason than cancer, then everybody can rejoice with you.

This is an image which shows the location of the bowel in the body. It also has a list of common symptoms of bowel cancer. These may not be caused by bowel cancer, but it's important to visit your GP to get them checked. The symptoms include: Blood in, or on, your poo. A change in your normal bowel habit, such as diarrhoea or constipation, that lasts longer than three weeks. Unexplained weight loss. Pain in your tummy (also called abdomen) or back passage (or rectum). Feeling that you haven't emptied your bowel properly after pooing. And unexplained tiredness.

To see what else Macmillan's cancer information team has been blogging about, please visit our blog home page! You can subscribe to receive our blogs by email or RSS too.

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Anonymous
  • FormerMember
    FormerMember

    I made a blog

    I was diagnosed with stage 3b bowel cancer in August 2016. I had a tumour in my lower colon, and two abnormal lymph nodes. I’ve had radio/chemotherapy, surgery and six months of chemo. I’m now in remission, waiting for the final surgery to reverse my ileostomy. 

    My tumour was discovered when I finally had a colonoscopy, after 6 months of changed bowel output. Early tests didn’t show anything, until I was finally booked for a colonoscopy. I thought this would just be routine, and went with a friend who lives near the hospital. So my family found out I had cancer by text.

    After my scans, I waited a week to meet the consultant. This was probably the hardest time of all. Your team meets to decide on the best course of treatment, and for me, that meant a last-minute change of plan. No surgery (4 days before I was due to go in), but radiotherapy with chemo instead. And a wait of 2 months, because there’d been a surge of patients needing treatment. Cuts or kismet? I was never sure.

    Many consultants use medical jargon – that’s the world they live in. If you’re going through this now, check out the MacMillan and NHS websites before your meeting if you can.

    Cancer smashes plans and expectations. It rips apart the old you, and creates one or more new versions of yourself. This new self has to face up to major physical and emotional changes, often more than once over the period of treatment. I’m now married, I’ve made a will, and put things in order. 

    I’ve had to give up control of major parts of me – my body most obviously, but the self that thought it could be independent and self-reliant. I’ve said goodbye to cycling 16 miles a day on my daily commute, as I’ve retired early from my job as a college lecturer.

    I’m a middle-aged man who holds things back by default. In the early days of diagnosis and treatment, this was especially true. I felt a duty to keep a tight rein on my emotions, and to reassure my family and friends that things were OK.

    After a cancer diagnosis, there is no right way for you to feel. It’s difficult for you, and people close to you, to deal with your emotions. A common reaction is to mask your true feelings.   

     

    My drawing project became one way to open up to people, because I had to keep so much inside. A big part of the blog I created is about sharing coping strategies, through drawing as much as through words. It's about living with cancer: not how to fight it, but how to deal with it. How it feels, and how to cope with those feelings. 

    A lot of the time, you’ll feel like you’re on your own. Only you have the cancer., but you need others to get you through. You lose control: in the past, you might have been self-reliant. Now you have to give up control, and that’s not easy.

    So many people judged me by how I looked on the outside – my personal front, while the effects of cancer are often on the inside. Inside, my body had been bombarded by radiation, giving me diarrhoea. OK at first, but it steadily got worse. The chemo made my nose and mouth bleed, and gave me mouth ulcers. I had regular throat convulsions in the night for up to five hours. My feet and hands were burning, and sensitive to the cold (neuropathy). My skin was hyper-sensitive to the sun. Part of my colon has been removed, and I have an ileostomy bag instead. 

    As for the rest, I’ve written about some of it in my blog, as a way of sharing and remembering. Remembering, because it’s hard to believe you’ve been through all the treatment, once it’s over.

  • FormerMember
    FormerMember

    My story begins at Easter 2009. My son and his wife bought me a very large Easter Egg and stupidly I ate it in one sitting watching a Sunday afternoon movie. The following 2 weeks at work , I found myself visiting the toilet more and more with diarrhoea. I visited my G.P. And she immediately referred me to a consultant who arranged for a Colonoscopy. The date was June 12th 2009...the date is etched in my memory because not only was I made aware of “ something nasty “ growing inside my bowel but it was also the day I quit smoking. After years of trying its amazing what fear will do ! I was 52 years old. Not one cigarette since that day !

    After the initial shock my wife and I attended a meeting with the oncologist and her team. I was given a very clear treatment path of initially radio and chemotherapy concurrently for 5 weeks each weekday with weekends off , then a months holiday , and then surgery. They were extremely positive that the cancer had been caught early , which helped me in turn to inform my family with equal positivity. I cannot praise the oncology staff at theRoyal Surrey Hospital highly enough.

    After surgery and some ups and downs whilst in Hospital the colostomy bag which I was told may have to be permanent was approved to be reversed in Feb 2010. I returned to work a month later.

    In the 9 years since I have had ongoing issues with my digestive system....sometimes ok , sometimes bad , sometimes very bad. I think you would have to be extremely fortunate to escape cancer problem free. The legacy it left with me , is daily Imodium from 2-5 capsules , having to watch what I eat very closely...anything which is slightly dodgy can lead to days of diarrhoea , having to know where the nearest toilet is in cinemas , theatres etc and sitting somewhere with easy access .

    I still have regular appointments to try and resolve those issues , but live now in semi retirement relatively peacefully . I am almost at the magic 10 year cancer free period and will forever be grateful for the prompt action of my GP and subsequent care at the RSCH.

    Good luck to all fellow bowel cancer sufferers.. I hope my story is of some comfort.

    Colin

  • Hello everyone,

    Wow. Thank you all so much for taking the time to share your stories. The Online Community is a wonderful place to read, share, and talk about your experiences. We hope you find it a source of support. We have two bowel cancer groups on the Online Community you may wish to join if you haven’t already. The Bowel (colon and rectum) cancer group and the Small bowel cancer group.

    Please remember you can always call our Support Line for practical and emotional support, or just to have a chat. We’re open Monday to Friday, 9am to 8pm and calls are free. Call 0808 808 00 00.

    We also have an online Ask an Expertservice, which may be of some help if you have questions.

    Thank you again for your comments, 
    Liza