I was diagnosed in December of 2011 with a tumour in my bowel. My symptoms leading up to it and diagnosis (or misdiagnosis) could be classed as 'interesting'.
Late in 2010 I took a friend's dog for a walk on the Dunstable downs. The job I held at the time had a component of it which meant I tended to walk a minimum of 11 or 12 miles each day, so I was fairly fit.
On the fateful day I took the dog for a walk with my wife, I walked up a small incline and by the time I got to the top (30 yards perhaps?) I was out of breath, panting with a pain in my chest. My family has a history of heart disease - my eldest brother's had a quadruple bypass, my father, his brothers and mother all died of heart disease, so I felt I was probably suffering from angina.
I had had a bad cold (man flu) a few weeks before so didn't go see my doctor immediately, it could be the after effects of that, I felt.
By march I was still getting breathless for no reason so went to see the doctor. He listened to my story and decided to treat me for angina, giving me a spray to use under my tongue when I felt breathless. The first time I did I used the spray and I have to say, the headache it induced instantly was unbelievable. It didn't seem to help my breathlessness either so I tended not to use it.
When I went back to see him he asked me if I had been using the spray and I said no. He (rightly) tore a strip off me telling me that this would help him know whether I really was suffering from angina or not. He gave me an ecg but I felt this was a waste of time as this measures the heart at rest, when it was working fine so I managed to persuade him to send me for a stress test. This was the day of the royal wedding at Easter time, if you remember.
On the day I got on the treadmill and after around 30 seconds I was told to get off, I could hardly breathe but they told me my heart was fine. Then while I was still there the cardiology nurse took my pulse, listened to my chest and so on and then told me to hang on - she thought she could hear some regurgitation. I then was given an echocardiogram and they discovered I have a small hole in the heart and a leaky valve. The cardiologist then decided I needed a bed - even though this was the day of the wedding, followed by Good Friday. He was taking no chances as he thought I may have a dissected aorta.
On the Monday I was discharged after they discovered my heart was OK but that I was suffering from anaemia. I saw my doctor who gave me iron tablets. After a few months when my iron levels were OK I asked him what to do. He told me to come off the tablets. Within two weeks my iron levels had dropped through the floor again. I pressed him as to a reason for my anaemia and his reponse (enlighted I thought) was, 'some people just get anaemia'. I saw him farily regularly until I persuaded him i needed more tests. He arranged an endoscopy and this revealed a number of gastric conditions, including gastritis, hiatus hernia, eosphagitis and Barrett's Eosphagus. I asked the endoscopist if the latter could be responsible for the anaemia and he said no. The lesions were too small to account for the blood loss that was causing the anaemia.
So back to my doctor who persisted in the 'some people get anaemia' response.
I again persuaded him I needed more tests and in December of 2011 I finally had a colonoscopy where bowel cancer was diagnosed.
L&D reacted very quickly and late in January 2012 I had a right hemicolectomy to remove it. The surgeon, Mr Gurjar was very positive and I found him to be very personable, very informative, direct and most importantly he gave me great confidence in his capabilities. I admire him very much.
After the surgery, he told me he was confident that he had removed everything and he was confident he'd 'got it all'.
Since then I've felt much better, haven't had the ongoing symptoms I've read about, I rarely feel the need to rush to the loo I read about from others that have had this procedure so count myself lucky although in the 18 months since my op, I can say I've felt the urgent need only twice. And that has been very recent.
I have had a number of CT scans since, as well as a colonoscopy and endoscopy (which is for other conditions I have to do with the upper GI tract). After a recent CT scan I had a word with a colleague of my coloretal nurse as mine was on holiday. She had a look through my notes and said she thought that everything was OK - see me in six months.
Before I move on to the next part, I probably should share my mental state with you.
When I was diagnosed I wasn't at all worried. I'd read about the various stages that people who are given the happy news they have cancer supposedly go through and can honestly report I didn't go through any of them.
At the time I was in a job I hated so when I was given the news I went through a very quick mental process which I use when working on any project; which is: I asked myself what the best possible outcome would be - complete 'cure' and the worst, dead in 6 months. Knowing that every project I have ever worked on has always fallen somewhere between the two, I accepted that it probably wouldn't be the latter. However, knowing that this was the worst case I thought about what I'd do if that was the case. It was obvious to me. I wouldn't accept either radiotherapy nor chemotherapy as I don't think an extra 12 months of suffering is something I'd like to do. No. I'd give up my job and spend as much time relaxing and on holidays with my other half and really pack as much in to the time I had left.
So, I underwent the op, and afterwards knowing that no surgeon can give you an unequivocal response but receiving as close to one as possible I felt that actually, I had (for want of a much better phrase) 'beaten' it. I was going to live out beyond the 5 years that we hear so much about.
After my recent CT scan and conversation with the 'wrong' nurse; I received a call from the 'right' nurse to inform me that they'd seen something on the CT scan that was indistinct and they wanted me to have a barium follow through to have a better look.
I had this last week and have to report that I am now mentally in a much worse place than I have been at any time during my (for want of yet another better word) illness.
Why? Easy. I reported to X-Ray and was given the barium drink - lovely (actually much less unpleasant than I'd expected) and given instruction that they would take an x-ray, lie me on my side for 15 minutes, another x-ray, another lie on my side for 15 minutes then a third x-ray after which they'd let the doctor have a look and take it from there. It may take 3 to 4 hours for the barium to coat my entire small bowel.
After the three x-rays the radiographer went to talk with the doctor - the radiologist who came in. This is when things started to go wrong for me. He asked me what it was they were looking for. I told him I didn't know, didn't he have notes informing him of what he was trying to find? He then asked me what symptoms I had. "None", I said.
He had a quick look at the three xrays taken and I heard the radiographer inform him that the barium had traversed the small intestine completely. This seemed rather quick to me as I'd read it could take up to three or four hours - 30 or 40 minutes seemed inordinately quick to me. Why was it so quick? No one told me if this was either normal or abnormal.
He then came back to me and told me he'd perform some real time x-rays, and put on what I assume was a lead lined glove. He lay me on my back and positioned the x-ray system. He prodded me a little, moving my bowels (I assume) into a better position for the x-ray.
After a few minutes he said 'All done, you can go home now' and that was it.
Walking back to my car with my wife, we had a brief chat which went along these lines: me - 'I guess that with him being so quick they either found something and got it on screen very quickly, or they found nothing very quickly'. My other half 'yes, you've either got something quite severe or you're OK'.
But which? And this is the part that's killing me. The complete indecision. I rang the colorectal unit yesterday (Monday) and was told that my nurse wouldn't be back in the unit until Thursday so she'd ring me then. But frankly, I feel that if they hadn't found anything, they'd have had to do a lot more x-rays to confirm everything's OK. So this makes me feel that there IS something there.
So, my mental state now is this. I had prepared myself for the absolute worst and accepted it. I had my op and everything was positive and I felt I was getting better (although still breathless for no reason but I am not anaemic) so I could see beyond five years and have a new job and feel good about life again so am looking forward to a long life when suddenly I feel like someone has pulled the rug out from under me. Now I think I have small bowel cancer, or crohn's disease or something else that's not good and it's simply that I am being left out of the loop in terms of information.
Yes, I will be informed, but not in a timely fashion, it's the indecision that is dragging me down mentally.
