Bowel Cancer Awareness Month - Barbara's Story

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

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

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.

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.