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Steve’s Story

“A diagnosis of stage 4 bowel cancer doesn’t have to be the end of your life, it can be the reason to start living it”.

“I hope that my experience since diagnosis helps to show that cancer, even advanced cancer, is becoming more of a long-term condition which we can live with.”

I’m in my late 50s and blessed with lots of great friends. I’m an active person who enjoys exercise including yoga and I run a small business.

Aged 49, I was diagnosed with Stage 4 colorectal, or bowel cancer (T3 N0 M1) in May 2013 and had fast-growing secondaries in my liver (3 mets) and both lungs (8 mets). I had an operation to remove the large primary tumour and then intense chemotherapy for 6 months which was very successful, after this my liver and one lung were clear, the other lung had just three small spots. My intensive chemo was called FOLFIRI plus bevacizumab, I was “in the chair” for almost 8 hours and had a bottle of chemo attached to me for a further 2 days. The planned surgery for my lung metastases was cancelled following the success of my chemo. I’m very lucky.

I started on long-term maintenance chemotherapy (also called palliative or lifetime chemo) in January 2014 which has helped keep things under control, I’ve been told I’m on this for life. I have a CT scan every 3 months as I’m on active treatment. My maintenance chemo is a bevacizumab infusion followed by capecitabine tablets. Over the years we have reduced the dose and in creased the gap between treatments – maintenance chemo is all about finding the right balance so that I can get on with living my life while keeping the cancer nicely controlled.

In October 2016 I had a recurrence in my lymph nodes which was treated by chemo. In May 2017 the next recurrence, a lung metastasis was successfully treated with radio frequency ablation (RFA).

Initially, whenever I asked my oncologist about my prognosis he always said it was hard to see beyond the next 12-18 months, I viewed this as a target to beat and I’ve kept beating it. I know the stats for my diagnosis were pretty bleak, with only 4-7% surviving to 5 years and the median survival being just 18 months. But I never saw those stats as applicable to me as they weren’t about me!

I’ve just passed the 10-year mark proving that the stats aren’t predictors of individual survival! My oncologist is much more optimistic about things now and thinks I can look forward to a long future!

I’m looking forward to a long and fun-filled life, and I’ve drawn up a bucket list to making the most of my time by enjoying ticking things off the list with my friends and family.

Throughout my treatment I’ve tried to maintain a positive outlook and my chemo nurses reckon that’s made a big difference to my response to chemo. I’ve also tried to continue living a ‘normal’ life – working, socialising and also traveling a lot! I’ve travelled throughout Europe and been to the US several times since I was diagnosed. I’ve even been into the Arctic Circle, to Bali on a yoga holiday and travelled into the Borneo rainforest to see the orangutans and sun bears!

I’m keen to help other patients as much as I can. As well as running Strive for Five, I’m proud to volunteer with several organizations:

  • Cancer Research UK as a Campaigns Ambassador and speaker;
  • Bowel Cancer UK as a Patient Voice, campaigner and fundraiser;
  • Bowel Cancer Intelligence UK as a Patient Public Group member;
  • Bowel Research UK as an advocate and advisor;
  • Association of Coloproctologists of Great Britain and Ireland as an Expert Patient.

I’ve become a Patient Advocate and am involved in a number of initiatives to help improve patient care for stage 4 cancer, more of which you can see in the activities tab.

“I truly believe that a diagnosis of stage 4 cancer does not necessarily mean the end of your life, it can be the reason to start living it.” 

You can watch and listen to more of my story in the VIDEOS and PODCASTS on the resources page.

Steve’s Achievements

Here are some of Steve’s achievements since he was diagnosed. These are included here to emphasise that being diagnosed with Stage 4 bowel cancer doesn’t have to mean the end of life, far from it!

  • Came through major bowel surgery
  • Managed the intense stage of chemo bang on schedule
  • Launched a new company whilst on intense chemo
  • Developed much better relationship skills – closer than ever to friends and family
  • Adopted his lovely dog Pippa
  • Acted as father of the Bride at my niece’s wedding
  • Survived getting hit by a flying Porsche and the two major surgeries that followed
  • Recipient of the Beating Bowel Cancer Annual Achievement Award, and the Communique Healthcare Communications Advocate Award
  • “Enjoyed myself doing nothing (especially having cuddles on the sofa with Pips of course)”
  • Trained and qualified as a Yoga Teacher
  • Passed his Red Belt in the Budokon Mixed Martial Arts programme
  • Attended two House of Commons receptions on behalf of bowel cancer patients, and a House of Commons back bench debate for CRUK
  • Got involved with the charity Beating Bowel Cancer (now Bowel Cancer UK) – volunteer moderator on the patient forum and Patient Voice to raise awareness of the disease. Given numerous talks and had articles in the local and national press and mags
  • Became an active Campaigns Ambassador with Cancer Research UK
  • Met with the Home Secretary (and future Prime Minister) to discuss the needs of cancer patients accessing medicines
  • Represented patients at a number of key events, notably as part of an expert panel (alongside two professors) at the European Society of Medical Oncology in Paris
  • Lived an ‘extra’ TEN years … and counting!
  • Raised over £35k so far for Beating Bowel Cancer
  • Travelled throughout UK, Europe and America multiple times as well as the Arctic Circle, Bali, Borneo and Vietnam