The words echoed inside my head, ‘BOWEL CANCER’, ‘MALIGNANT’. The whole room seemed to collapse inwards. I could see his mouth moving now but I couldn’t hear anything other than those two words. It was November 2015.
As I write this I cast my mind back and try to figure out how I survived the most extreme, extended and most undesirable journey I have ever embarked upon. Two colonoscopies, CT scans, MRI scans, a mountain of letters from the NHS and leaflets about bowel cancer from my Colorectal Macmillan Nurse. Oh my god, I’ve even had my own Macmillan Nurse. Once the initial shock had dwindled, I was left with the spectacular realisation that this was a bit serious.
I made sure that my insurance and local government pension were sorted if the worse happened. I just needed to tell my family. My Mother is well into her 80s and a widow so this was a worry. I never seemed to get a proper opportunity to tell my younger brother. November is his birthday so naturally I didn’t tell him then nor when I was with him at the football because a football crowd probably isn’t a sensible place to say “hey bro, I’ve got bowel cancer” so I ended up telling him over the phone unfortunately.
I was at work on a Friday when I got a phone call from my Macmillan Nurse to tell me that they had just had a multi-disciplinary team meeting and I would have to have surgery to remove the tumour which was very low down in my rectum. This meant I would have to have a permanent stoma. I was absolutely delighted because this was the light at the end of the tunnel. Until this phone call the only light at the end of the tunnel had been an oncoming train! “Great but what’s a stoma?” I asked. “After bowel surgery, you will have an opening on your tummy wall to pass poo through. This is what’s called a stoma. A bag over the stoma collects poo. Yours will be permanent and your rectum will be sewn up.” “So no more doing the crossword on the loo for me then” I heard myself replying. My dark humour will get me into trouble one of these days, perhaps it’s not appropriate BUT for me it’s what keeps me going. She also said that if you were stood in a room full of people no one would know that you had a stoma. To be honest they could sew the stoma on my forehead if they wanted to, I was just delighted that I had a way forward.
On the way back from an appointment with my surgeon with my daughter Lisa, my granddaughter Sami and my wife Carolyn, Sami looked at me and said “I read that one in three of us will get cancer so Granddad has taken one for the team”. We all burst out laughing so yes, humour is important.
My Surgery date was scheduled for7th January 2016 so Christmas was a little bit strained. I remember my granddaughter Abby saying “Are you frightened Granddad?” “Yes Abby”, “you shouldn’t have told me that” she said as the tears welled up. I felt a bit rotten telling her that but I made a point of being open and honest with everyone. It’s important to be honest and not put a front up. Having bowel cancer is enough of a burden without adding to the pressure by lying. Being honest about my feelings was good. It’s important that my family and friends realise that it’s okay to be upset and afraid, it’s natural and nothing to be ashamed of.
Everyone came to our house on New Year’s Day and we put cancer on the ‘back burner’ and had a good family gathering. I couldn’t help feeling that this may be my last one so I had to put that little demon back into its box. I suppose the rum & cokes helped.
I went into hospital the day before the surgery was due. I planned to watch Manchester City V Liverpool on the TV but just as the match started the Nurse said “okay John, it’s time for your laxatives now” Needless to say I was running about for a while and never got to watch the match. They wouldn’t let me out after the surgery until my stoma was productive (their words) so I ended up being in for about 4 days. Just as I was about to get cabin fever my daughter in-law collected me. She insisted I use a wheelchair. “I walked in so I will walk out” I bravely said, “No we will use the wheelchair” she said. I had forgotten that she was a Matron at the same hospital, so knowing my place I did as I was told and was wheeled out. On the way home we went via the chippy I was really looking forward to pudding and chips in a tray with gravy.
My first night was a low one for me. I had to stay on the sofa for a few nights as our stairs are pretty steep. Whilst changing my bag I found that it had leaked. My poo was running down my leg and my wound where the tumour was taken out was dripping with some blood. I thought ‘is this it, is this my life from now on?’ My Dad used to say, “In the land of the blind, the one-eyed man is king”. Yes, dad you’re right, there is always someone worse off than me. I snapped out of it and never got that low again.
I was off work for about 5 weeks or so. I had problems sitting down due to the wound where the tumour was taken out. Getting in and out of the car was tricky and I often had to stand instead of sit. It was sore but I made sure I walked to the shop and was taken for a coffee a few times. After a few weeks I had a call from my Macmillan Nurse who informed me that they had taken a good look at the tumour and the decision of the Oncologist was that I would have to have 6 months of chemotherapy followed by radiotherapy. Work were great about it. I explained that I would have to go and have my bloods done and then have chemo every other week. My contract was coming to an end so they said they would extend it by another 6 months.
I had my first appointment at the world famous Christie hospital. I decided that I didn’t want anyone coming with me as I was of the firm belief that I didn’t want to be dragging anyone around. The Oncologist said that they had a look at the tumour and didn’t like it one bit. I told him that I wasn’t too struck on it myself either. He said if I didn’t have chemotherapy there was a 50% chance of it coming back.
The next few months are a bit of a blur. I was lucky though because I wasn’t sick with the chemo and I kept myself fit by walking. Half way through I decided to go on a week long trip to the WW1 battle fields and cemeteries in France & Belgium. The trip was arranged through the Rochdale Fusiliers Association of which I am the Vice Chairman & Vice President. I had already paid for it prior to all this cancer business and was determined to go. My Oncologist said it wasn’t an ideal situation but we would be able to sort it.
We had a hotel booked in Belgium and the use of a coach for the duration. It was the first time I had travelled with a stoma so it was going to be interesting. I laid a wreath at the Thiepval memorial on the Somme in France as it was the 100th Anniversary of the battle. My great Uncle was killed there in 1916. I also laid a cross at the village where he was killed. I certainly needed a break and was glad I went as the issues associated with chemotherapy are cumulative. At first it isn’t too bad but the fatigue and other issues tend to kick in half way through.
The Christie hospital is excellent and is world renowned and rightly so. I felt very lucky to be under their care. I had to have some of the chemotherapy sessions put back because my white blood cell count was too low which can make you more vulnerable to infection. On one occasion I was taken in overnight as I contracted an infection that went to my lungs. They pumped me full of antibiotics and released me back into the wild after 24 hours.
The months wore on. I live quite away from the Christie so I managed to get the last 6 of my 12 chemotherapy sessions at one of their outreach locations. It is a converted lorry that visits several sites each week. Mine was in an Asda Car Park. I know you can get just about anything in a supermarket but to be honest I didn’t expect bowel cancer treatment.
My granddaughter Chantel and her husband Ryan had a baby boy, Brook, on 6th June 2016 and I was delighted that his middle name is John after me. I feel privileged to have a wonderful family and it makes me realise just how lucky I am.
Finally at the 12th and last session the nurse said “don’t take this the wrong way John, but I hope I don’t see you again” So I’m not the only one that humour works for.
I was due to have radiotherapy everyday for about 6 weeks but after having CT Scans they eventually told me that my small bowel had dropped into where the tumour had been and they felt that radiotherapy would do me more harm than good. They eventually said “Congratulations John, you are cancer free”. It’s now 2018. I had follow up scans and a colonoscopy in the last half of 2017 which were clear and apparently, I’m not due anymore for another five years.
My son-in-law’s friend had recently been diagnosed with bowel cancer and I was asked if I could email him and let him know how I coped with my diagnosis. This is what I sent to him:
After my diagnosis my imagination was my enemy but I came to realise that if I can’t control what my body is doing, I CAN control my mind which is after all who I am.
I focused on what is good in my life, my family, my friends and my ability to beat problems that life has a way of throwing at me. Such as:
It’s a matter of perspective, I could have been killed three times over at the age of 20 but I’m 64 in April 2018. I’m still here!
It is difficult but it’s important to maintain as normal a life as possible. Go for a drink, go out with your mates, go for a run…It worked for me. I went to work all the way through chemo. I even went to work and the football match with a small chemo bottle attached to me.
Don’t hide anything, be open about it if you want. I think we can condemn ourselves if we try to hide it.
To help me focus I said some words to myself that inspire me (particularly at night when the devil came for a visit): The Devil whispered in my ear “you will not be able to take the storm that’s coming to you”, I said “go away, I am the storm”.
Finally, I can either live my life worrying about cancer coming back or I can live my life. I have chosen the latter.