Older People Living with Cancer

Peer advocates supporting older people affected by cancer

Tom’s story

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September 2010. I’m 62. I’m fit, healthy and happy. I’m due to fly to Nepal next month to go trekking with Lyn my wife but……………for about 3 months my bowel motions had been changing, becoming looser, sometimes very urgent. Nothing else. I suppose I’m just denying it but my wife notices blood in the toilet bowl and one could say the shit hits the fan!

So same day I am seeing my GP. He asks me the normal questions, answer is no to all of them. Then it’s “tum and bum”. I know there is no lump or pain in my abdomen. Then it’s fingers up my bum. He apologises for his rugby player’s fingers and tells me I have a lump in my rectum and he is certain it’s cancer.

I’ve been there for about 5 minutes!!!!! My life changes in an instant. My immediate reaction is that bowel cancer = death, I remember the blokes I have known who have died in the previous 18 months. I don’t think that I’m going to die, just that if you have bowel cancer it means you die if you can understand what I mean.

My GP spends the next 50 minutes with me (I often wonder what happened to the patients who were due in after me!) carefully explaining to me it’s about me not about others, what bowel cancer means, what’ll happen next, printing stuff off the Internet for me.

He was great.

Then it’s time to tell my wife – it was almost worse telling her we couldn’t go to the Himalayas than that my GP thought I had cancer.

3 days later I’m seeing a Registrar at the QE, a dead nice young lad who seems about 16. More fingers up the bum and he tells me that I don’t have a lump and he knows more about these things than my GP, but I don’t believe him.

The next Wednesday I have a Colonoscopy (for those who have never had one, taking the Piccolax preparation beforehand is an absolutely unforgettable experience!). It’s going fine, I’m chatting to the staff listening to relaxing music on my headphones. The doctor doing it says “almost finished now” and then “yes, we’ve got something here”. I look at the screen and it’s filled by this great big bright red, bloody thing which looks angry. I ask the doctor “Is that cancer?” and she says ‘It’s cancer”. There’s no talking after this but I feel strangely at peace. I know what it is and I know it can be dealt with.

I’m now part of the system. I’ve got a key worker and everything starts to happen. I have a CT scan 2 days later and then a MRI (another very memorable experience).

During all this time I was getting info off the Internet and contacting Beating Bowel Cancer so I knew everything about treatment but not what my stage my cancer was and so what the treatment and my prognosis would be. This changed when my GP phoned me on my mobile when I was taking the dog out in the woods at 8am. He had just been able to access my test results. It was GOOD GOOD. I was approx. Dukes Stage 2 (I can explain what this means), I would only need surgery and the prognosis was very good.

I have to have an Endoanal sphincter scan to give the surgeon the rest of the info he needs.  Now that’s not something I would like to have again!

So everything’s great I’m booked in for surgery – a resection – but it is very major surgery.

I have my pre-op assessment on the 10th Nov and everything is fine except I discover I will have to have an Ileostomy i.e. a stoma sticking out of my abdomen with the bag to collect my faeces, while I heal up and I should be able to have it reversed at a later date when I have healed internally. Approx. 120 people in Gateshead get a stoma every year so it’s not uncommon.

So it’s into the QE and the great day is the 15th Nov. I remember very well getting wheeled along interminable corridors thinking “what are they going to do me?” I wake up after 7 hours of surgery with tubes all over the place, an Ileostomy bag and feeling like I had been run over by a bus. Everything went absolutely to plan, pain relief was excellent but my surgeon did give me a bit of a shock next day when he told me he had so little rectum to play with he almost wasn’t able to do a resection but he was determined to do so because I was so fit and active and he wanted me to continue to do so.

Seeing my stoma for the first time and changing the bag was quite an experience. Although I had seen the photos and used the “test kit” nothing quite prepares you for the real thing.

Any way after 2 days (pretty good as I had been told I would be in for a week), it was home to recover from major surgery and learn to live with an Ileostomy.

Recovery was pretty quick but I was surprised at how knocked out I was and how long this persisted.

I saw the stoma nurses weekly for 8 weeks while my stoma healed. Tracey and Heather were great. The problem with managing a stoma isn’t in your abdomen, it’s in your head. It so different, you feel abnormal. Tracey and Heather simply helped me feel normal again. No problem.

I was told my chances of 5 year survival were 77%. Pretty good, I can live with that. But then I was offered Chemotherapy which I was told would increase my 5 year percentage by 5%. After 2 meetings with a very nice Oncologist, internet research and talking to friends who had had chemo I decided not to have it. The Oncologist himself said that in my position he wouldn’t have it.

So I accustomed myself to life with an Ileostomy and got fit and back to normal.

Tests showed that I had healed inside and I had the reversal surgery on the 25th May. Much less invasive surgery but you lose even more bowel. My surgeon had told me I would hate him for 4 weeks afterwards. I didn’t but life was very difficult and painful. Managing a stoma was much easier but I have no regrets. You are given no preparation for life after reversal. I will never have a “normal” bowel function again, but it is slowly but surely getting better. The internet tells us it takes 3 months to 2 years to get to its optimum and I had assumed it would be 3 months for me because everything had gone so smoothly before. I was wrong.

So 2 years after initial surgery where am I now? I am very fit and well (and I look it). I have my 3 monthly checks and blood tests and everything is normal. I had my first CT scan and a colonoscopy which were clear. I am cancer free and I am enjoying life.

South of Tyne Health asked me to participate in training sessions that they were doing about Bowel Cancer Awareness in September. I really enjoyed working with their trainer talking about my personal experience and giving a personal perspective to the information she was giving out. These sessions were aimed at professionals who were working with or in contact with older people. Alan Davison from Age UK was at one of the sessions. I hadn’t met Alan before. He was very complimentary about my performance, told me about the new Advocacy Project working with people with cancer and invited me to its launch.

At the launch, I was really impressed at the work that has been done in getting the project off the ground, how well organised it is and how committed and enthusiastic the volunteer advocates are who have gone through the training scheme. Speaking about my experiences and my beliefs felt like it had a good fit with the ethos of the project. I’ve met with Alan since then and I am very keen to assist with the development of the project. I hope to work as a “Champion” promoting and developing the project, assisting in the evaluation which is being carried out and making positive contributions not just from my cancer experiences but also from my work experience both in local government and in the health service.

You may remember that at the beginning of this story I was due to go trekking in the Himalayas, it had to be cancelled and how awful it was telling my wife. Well in November just gone it finally happened – we got there! I can’t describe how wonderful it felt as the plane came into Katmandu. We had an absolutely wonderful trip. I fell in love with the country and the people and we are planning for an extended trip in February 2014. Now that I have done this I really feel that a chapter in my life has been closed and I can get on with the future – but I also feel that I want good to come out what has happened to me and to help others so I look forward to working with Age UK’s Advocacy Project and other work.

Tom Kyle (January 2013)

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Author: Marie McWilliams

OPAAL's National Development Officer

2 thoughts on “Tom’s story

  1. what an inspiring story! I am so pleased to hear that you are cancer free and that you are able to live your life in such a positive way. It is amazing to hear that you are now using your experience to help others. Good luck and thanks for sharing your story!

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  2. Thank you, Tom, for sharing your experiences so well. Another aspect to your story is the amazing skills of the medical team and the way they explained everything – hospitals get a lot of criticisms these days, it is good to remember the incredible skills they need.

    Like

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