Beating bowel cancer together

Leigh Game, Essex

I was diagnosed with stage 4 bowel cancer in February 2018, aged 35.

I first noticed my symptoms in October 2017. I was feeling bloated (particularly after food), experiencing feelings of fatigue, was taking extra trips to the toilet and having abdominal pains. However, I put this down to stress and anxiety. At this time, my husband Tom, our two children (Elouise, who was five years old and Alfie not yet 2 years old) and I were moving house, renovating our new home, and I was about to start a new job which I’d hoped would eventually lead into a new and satisfying career.

It was only when the pain intensified and I started getting spikes in temperature, that I thought something was wrong. I first saw my GP in January 2018 and I must say, both doctors I saw were faultless. They listened and ran blood and stool tests. I felt as though they were taking my concerns seriously and investigating to the limit of a GP’s capacities.

The results of the tests didn’t show up anything particularly significant. The GP prescribed some pain killers and advised that the best course of action would be to investigate further by a colonoscopy procedure. At no point was bowel cancer ever mentioned. The GP thought it was most likely to be IBS triggered by stress and anxiety - I had previously been diagnosed with postnatal depression shortly after the birth of my son, and I was already on antidepressants.

The GP was all set to make the NHS referral when I mentioned that I was very lucky and had access to private medical care through my husband’s work. I promptly organised an appointment to see a gastroenterologist privately. The appointment was scheduled for a week later, but I never made it. Within days of arranging my appointment, the pain had become unbearable and I was advised by ‘111’ that because I was experiencing abdominal pain along with a high temperature, that I should go to A&E.

I had been in Addenbrookes hospital approximately two days when I heard the devastating words that no one ever wants to hear - “you have cancer”. Another two days passed, and I was having an operation to remove the 7.5cm tumour in my sigmoid colon. The tumour had ruptured my bowel, meaning that I had pockets of infection in my abdomen and the onset of sepsis. I also had a stoma created at the same time.

Several weeks later I was told my cancer had spread outside of the bowel and there was evidence of disease in or on my liver, deposits on the peritoneum, and a nodule in the pouch of Douglas. It was stage 4.

Since then I have had the following treatment and procedures:

1) Six cycles of FOLFOX chemotherapy plus Avastin – April 2018

2) Dithering about in Basingstoke meant I was off treatment for 5 months…

3) Aborted liver resection at Basingstoke hospital due to significant disease progression. I was opened up but only biopsies were taken – November 2018

4) Told treatment would now only be palliative and I should start to prepare for the worst – December 2018

5) 12 cycles of FOLFOXIRI plus Avastin – January – July 2019

6) All scans showed excellent response to chemotherapy with both growth reduction and disappearance of tumours (particularly in the liver). My oncologist at the time was still sceptical about surgery being back on the table but offered to write to Basingstoke with the latest scans for an opinion.

7) What my oncologist wasn’t aware of was that I had met up with the inspiring and lovely Beth Purvis, aka ‘BowelWarrior’ a few weeks prior to my completion of treatment scan. She had been mentioned to me by my local stoma nurse who suggested I get in touch with her as she was local to me and was going through a similar predicament. Beth kindly shared her story with me, and she made me realise that if you want to get things done, then sometimes you must take matters into your own hands.

I was determined to get to NED (no evidence of disease). She told me how she had done all her own research and about getting a second opinion. Her help, combined with the advice and support of the ‘Living with stage 4 bowel cancer’ Facebook page and Bowel Cancer UK’s forum had me looking for my own second opinion. I found it with the amazing bowel surgeon Jamie Murphy, who in turn introduced me, Mr Charles Imber, liver surgeon and miracle worker.

8) I had a mammoth 16-hour surgery at the Princess Grace Hospital in London. Surgery included having a liver resection, full hysterectomy, gall bladder removal, HIPEC and cytoreductive treatment and creation of an ileostomy in the hope of re-joining the bowel back together further down the line.  I had four surgeons, Mr Imber and Professor Massimo Malago working on clearing the liver, with Mr Murphy and Mr Antonio taking on the rest - October 2019

9) Surgery was a great success and they were able to remove all visible signs of disease. Hurrah, I’d made it to my goal. NED! I was NED!

10) I am now under the care of Doctor Daniel Krell at the LOC in London who I feel offers a fresh pair of eyes to my ongoing care. Plus, there is the advantage of keeping it all in house, in the off chance that I would need Mr Murphy and Mr Imbers expertise yet again.

11) On 5 December 2019 I had baseline scans in preparation for adjuvant chemotherapy. Prior to the results of the scans, it had been agreed with Dr Krell that I would go onto ‘maintenance’ (Capecitabine and Avastin) chemotherapy on a three-week cycle. Yes, I thought a bit of reprieve.

12) Results showed reoccurrence in the liver. I had been NED for eight weeks.

13) Treatment was then delayed further as I had a wound in my abdomen that hadn’t healed as it should have after my surgery in October. I had to have a Debridement procedure first and wait for the wound to fully heal before starting treatment.

14) More baseline scans January 2020 have shown further disease progression in the liver, disease is now in the lung and diaphragm. So my shoulder pain wasn’t just tension caused by scanxiety after all, but it is in fact disease related referred pain.

15) Currently, I’m back on FOLFOXIRI plus Avastin. The plan is to do more scans after four cycles. If chemotherapy is working, I will continue the same regime. However, Dr Krell is currently working on getting me access to the Beacon drugs on compassionate grounds through the pharmaceutical companies as an alternative option if the FOLFOXIRI does not work again.

Because of my young age and the fact that they removed several polyps at the time of my first surgery, I was offered testing for Polyposis and my family (two sisters, mother and father) were offered referrals for a colonoscopy screening. To date, only my elder sister has taken up the option of screening and thankfully was given the all clear.

The heart-breaking thing for me is that, just prior to being diagnosed, I was beginning to come out of the post-natal depression fog. I was seeing a counsellor and thinking about coming off the anti-depressant medication.  For the want of sounding corny, Id felt like I was finally starting to find myself. The counselling had given me confidence and the self-belief that I never knew I had. Which is why I had decided to leave my job of nine years as a sales executive and take the plunge to work towards a career that I would truly love.

This, I had realised, was going to be working with early years children, hopefully in a primary school setting. I had my sights set on becoming a teacher. But first, I would need that degree! I had never been to uni and I didn’t even have any A-levels. I decided that I would start at the bottom and work my way up. I secured a job at a local primary school working as a dinner lady, my thought being it was a foot in the door, plus it had the bonus of working perfectly with my children and the demands of my husband’s travelling for work.

 Alongside gaining gradual work experience, I was going to start an OU online degree in History. I had been in my new role for approximately four to five weeks when I got my diagnosis, and my world fell apart. The rug was totally pulled from underneath my feet. My first thoughts after diagnosis were of my two children. How was I ever going to tell them that their mummy was seriously ill and probably not going to be there much longer and see them grow up? My husband a widower, left to look after two young children alone.

For a few weeks we were all in shock. Completely dumfounded and speechless. My prognosis was shocking, and the statistics were petrifying, I was to expect to live for two years if I was lucky.

During the Christmas after my failed liver resection, I started to assemble memory boxes and wrote letters to my children for things I would want to say and tell them when I wasn’t there. I even typed them my ‘Memoirs’ – a document telling them all about me, including the things I like and love, the things I don’t  like, what kind of food I was into etc, along with some anecdotal stories about me growing up and meeting their daddy. With each story, I assigned a song which means a lot to me. With the lyrics of that song resonating or reminding me of the story or memory.

However, as my poor enduring husband, family and friends know, I am a belligerent cow, that does not know how and when to quit! So come this February, I would have outlived my initial diagnosis.

I have not taken cancer lying down and whilst on treatment, I have successfully participated in and passed two-degree level online history courses with Oxford University’s department of continuing education. The results of which can be put towards a full degree qualification. I have also been volunteering at my daughters’ local primary school when I feel up to it.

This is perhaps not exactly what I had in mind, but counselling has taught me to focus on what I can do, not what I can’t.

I am living my life regardless and not holding back. I no longer put off meet ups or doing things that I’d always wanted to do, but felt I never had time to do. I try the best I can to live for the moment and find positivity in every day. It’s not always easy though!

There is no way in this world that I am going to let cancer take me away from my children, husband, family and friends.

And it is the effect on them that hurts me the most. I hate the fact that sometimes I have to be a back-seat mum whilst I am on treatment, that my husband has to run around like a headless chicken, holding down a full-time job (which is no 9-5) along with looking after the children and me. Yes, I hate what this disease is doing to me, but I really hate what it’s doing to those I love dearly.

It is because of this that I want to share my story and raise the awareness of bowel cancer, particularly amongst younger people.  If I can stop just one person going through this, it would be a job well done.

My family and I would also like to raise as much money for Bowel Cancer UK as we possibly can in order to help support people like me. Therefore, my sister Helen is running the London Landmarks for Bowel Cancer UK to show her support for me and this amazing charity. She has been and continues to be an amazing pillar of strength to me and I am so incredibly proud of her determination and commitment.

 You can help Helen raise money for this great cause by donating directly to their fundraising page.

But we’re leading change

Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.

What are we calling for?

  • Improved clinical guidance and practice on bowel cancer in younger people
  • Improved identification of people with genetic conditions and access to surveillance screening
  • Improved information for younger people on bowel cancer symptoms

 

Back to younger people with bowel cancer  Share your story

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