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.

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Anonymous
  • FormerMember
    FormerMember

    So glad this you're speaking about your past & not present. 

    I've been dealing with all of these symptoms for a year now, besides bloody stool. I actually get sick about once a week and throw up, a couple of times I've found blood clots in the toilet but I've brought my bowel problems up with 2 different doctors several times and they seem to be more worried about putting me on a new antidepressant and me getting in to see a therapist. I have a very small bowel movement maybe once a week and even then I know it's barely anything. About a year ago, I started having really bad lower back pain and a doctor got me xrayed and came to find out I was literally full of sh*t and presumed that was causing the pain. Ever since then it's been laxative after laxative and those no longer work. I don't know if it's super serious but I'd love to defecate normally again and I don't know why I can't... I've changed my diet and many other things. There's only so much I can say to my doctors about this just to be ignored. 

    So as of now, I'm just living with it and would hate to find out it was something serious like bowel cancer. 

    Xoxo

  • FormerMember
    FormerMember

    Good evening.  In 1995 at the age of 51 i was diagnosed with bowel cancer.  I had been back and forth to the gp and told every time it was IBS due to stress and given repeat prescriptions of valium and colofac. One day i just collapsed and was rushed into hospital for major surgery. I had a complete blockage where the cancer had grown and had all but 20cm of my colon removed and the ileum joined to the rectum (anastomosis). No chemo. Like others i spent a lot of time on the loo but it did settle and here i am at 74. Unfortunately last week i lost my husband of 46 years to oesophageal cancer which is a real nasty. It was inoperable but he made nearly three years before it metastasised. He was diagnosed really quickly after losing weight with no other symptoms. So really in this day and age the medical profession should listen to us a bit more as we know our own bodies better than anyone else.  I was disgnosed with stress because 18 years earlier i had post natal depression and it seemed that my gp couldnt see past that. Lesley

  • FormerMember
    FormerMember
    I was diagnosed with rectal cancer after about 2 years of going to the toilet more frequently than usual, and my stools being broken up and small. In my case there was no blood present, and at the time my doctor kept telling me it was IBS, and treated me accordingly. Annoyingly all the adverts on TV were saying if you see a change in bowl movements, this could be a sign of cancer, pity my GP had not seen the adverts; or was it the cost of investigation he was trying to avoid? Finally I went privately and had a colonoscopy which revealed a T2 tumour in my rectum. This was removed and I was given a temporary ileostomy. I was told this would be removed if possible after about 9 months. Unfortunately it had spread to 1 lymph node out of 15 they had taken out of me. This meant I had to have chemo. The chemo lasted 6 months and then a few months later the bag was removed. After that I had chronic diarrhoea for 3 months constantly spewing out of me up to 20 times a day. Not very pleasant and it depressed me at the time, as I was told this should not be happening. Thankfully it did get better and 2 years on now I am pretty well and happy. I was left with about 2cm of rectum which means I cannot form large stools as normal and consequently have to go to the toilet many time a day, which I have now grown used to and can manage. There is a lot more to my story and if there is anyone out there who wants to talk, being worried about their condition and what the future holds, then feel free to contact me. [Edited by Admin].

  • FormerMember
    FormerMember

    Apologies for my longest ever post, for reasons that may be apparent I’m always unsure which forum I should be posting on but this is my bowel cancer story which seems familiar. That is difficulty in getting a diagnosis, side effects of chemo but thankfully after five years, safe harbour.

    I was a blood donor, and in 2011 on three occasions I was declined due to ‘low iron’ and told ‘nothing to worry about’. In February 2012 I submitted samples to the National Bowel Screening Program, the results were negative. In April 2012 I went for a cycle ride with my wife, we tend not to cycle in winter, and found I could not keep up with her!

    As a consequence I went to my GP and after a blood test was found to be anaemic. Referred to a haematologist, he gave me a physical examination and found a painful lump in my abdomen. With hindsight I think he knew what he had found. He referred me for a CT scan and ordered two transfusions, which were given in the chemo ward, a location I was to become quite familiar with later.

    The scan identified lesions on my kidney and liver, I had no idea what a ‘lesion’ meant. Referred to a urologist, at the consultation I was asked ‘Is anyone with you?’, clearly not, thought to self, ‘why are they asking me that ?’. Anyway, very business like the urologist advised there was a cancerous tumour on my right kidney. He recommended keyhole surgery.

    I know this is supposed to be about bowel cancer but be patient, I was. No bleeding, screening negative, not found on CT scan any fatigue put down to age, still blissfully unaware. He told me the tumour on my kidney would not be causing my anaemia.

    Referred back to gastro-enterology, the liver lesion was thought to be an haemangioma, ‘good news’. Then referred for endoscopy and colonoscopy, fortunately in that order. A hiatus hernia found with the former. I’d previously had a colonoscopy four years before when a non-cancerous polyp was removed. This time was different, initially good humoured, it suddenly went quiet. As the sedative wore off I could see the doctor pacing up and down outside while we waited for my wife. When she arrived we were told it was cancer, but it was treatable, ‘snip - snip.’

    It was decided both tumours would be surgically removed using open surgery. The operation, on October 31st, took seven hours, not quite ‘snip snip’ but ‘ quite hairy at times’ according to the brilliant, life saving surgeons. The kidney tumour was stage II, and synchronous so no further treatment. The tumour in my bowel was apparently ‘as big as an orange’ and had spread to one of twenty lymph nodes, Dukes IIIA. So six months chemotherapy, I remember looking forward to the week off at the end of each cycle, it wasn’t too bad though. However on the eighth cycle my feet were red and sore, as were my fingers and the nurses refused to give me the last IV cycle. Rather than feeling relieved I was rather cross, but eventually sent home with my tablets. I still have neuropathy in my feet and fingers.

    So five years on, in March this year I was finally signed off, officially a ‘survivor’. Along the way, an orchidectomy, ‘because of your history’, fortunately benign, though I have discovered ‘because of your history ‘ is, thankfully a hypochondriac charter. A week in hospital in 2016 with a nasogastric tube following a bowel obstruction, and a couple of post operative hernias. I still find it difficult not really knowing how I should feel, life just goes on as before, no spectacular ‘bucket list’, no marathons or challenges. Simply enjoying the company of family and friends and walking the dogs, in fact little seems to have changed apart from the constant reminder in my feet and I never really felt sick apart from the chemo.

    Sadly two years ago my beautiful, supportive wife was diagnosed with IIIB lung cancer. We are still cycling together and keeping up with each other. Our first target, shared with her oncologist is our Golden Wedding next April.

  • FormerMember
    FormerMember

    David’s story

    My husband was diagnosed with metastatic colon cancer in May 2016. He didn’t have any symptoms apart from feeling tired and a bit run down on holiday the month before. On returning home the bowel cancer screening kit that the over 60’s get every two years was waiting for him. He did the test and sent it off. He got a letter a few days later to say that there was an abnormal result and another kit with it to repeat the test. My husband went straight to his gp who referred him for a colonoscopy.

    At the colonoscopy the doctor could not get the camera past the sigmoid colon due to ‘stricture’. He took a biopsy. The colorectal nurse sat us down with the doctors report and he had stated that there was a large tumour in the bowel which in his opinion was highly likely to be cancerous. The nurse took us through the next stages saying that he would have a ct scan, the results of which would be discussed in a weekly team meeting and would then be referred to the bowel surgeon and the oncologist.

    We waited just over two weeks for the scan and then waited to hear from the surgeon. This didn’t happen so I rang the surgeons secretary to try and find out when we would get an appointment. She arranged for us to see the surgeon on the ward the following day. When we got to the ward no one was expecting us and the nurse had to page the surgeon. He eventually came to see us and said that the tumour was confined to the bowel and he would be able to operate. We went home feeling very positive but got a call from the nurse later in the afternoon asking us to come in the following day. We assumed this was for preoperative checks.

    Unfortunately the news was very bad. The surgeon had got my husband mixed up with someone else and didn’t have his notes when he saw us. My husbands cancer had spread to the bones in his spine and pelvis and extensively throughout lymph nodes. We were devastated. David was admitted to the ward and had colonic stents put in his bowel to push the tumour to one side and prevent obstruction.

    After a PET scan we saw the oncologist who went through the extent of the spread. He seemed visibly upset, and after delivering the news left the room for a few minutes. The only treatment on offer was palliative chemotherapy.

    David soon started to experience severe pain in his back and legs due to the bone cancer and within a few weeks could not walk very far. He also collapsed a couple of times and couldn’t get back up so ended up with several trips to a&e and admissions to the oncology ward. The fortnightly chemo made him feel really ill and we were given a wheelchair.

    The first ct scan after 12 weeks of chemo showed shrinkage in the bowel tumour but no changes in the bone cancer and some lymph nodes were clear of cancer.

    David’s condition deteriorated despite another round of chemo, which we didn’t get to the end of. By Christmas he was very weak, weighed just under 9 stone and spent most of the day sleeping under the influence of morphine.

    I took him into hospital one morning when I couldn’t rouse him from his sleep. He was admitted and a ct scan showed the cancer had reached his brain. The doctor wanted to get him into the hospice and the Macmillan nurses set about getting him a bed but unfortunately he had contracted a bug called c-difficile which was infectious and caused him to have severe diarrhoea. So the hospice could not take him.

    David died on 10 January 2017, 8 months after diagnosis. He was 64.

    It’s very difficult to catch bowel cancer early if you don’t have the obvious symptoms such as bleeding or noticable changes in bowel habit. I also can’t help thinking if the bowel cancer screening test was annually rather than every two years, he may have had it detected earlier - but who knows. The tests he did at age 60 and 62 were clear. I would really like to see more screening tests and check ups for over 60’s available locally. I know they are now talking about getting cancer screening services up and running in some areas where you can drop in for checks and tests, like a walk in clinic.

    Ours was a pretty hopeless situation from the start but I know many other cases where bowel cancer is treated successfully and the treatments are improving all the time. The Macmillan nurses and all the staff in the oncology clinic were absolutely fantastic and so dedicated to caring for their patients. At the heart of it is early detection and more awareness of what symptoms to look for.