Beating bowel cancer together

Hannah Stead, Cambridge

My husband, Michael, was diagnosed with stage 4 bowel cancer in September 2018, aged 36. It’s really hard to put into words, just the kind of person Michael was. He was the most amazing husband, father, son, brother and friend. Loved by everyone he knew.

His smile and laugh lit up the room, like no one I've ever known before. His laugh was infectious, unmistakable and heard way before he was seen. He had a zest for life and loved nothing more than spending time with family and friends, exploring the world, enjoying great food and a cracking glass of wine (or bottle).

He loved spending time outdoors, whether in the garden (beer garden) out running, cycling or walking. When he wasn’t enjoying the fresh air – he could usually be found slaving over a hot stove, inventing some truly delicious and mouth-watering foods.

He had serious culinary skills, a true natural talent – one of the many reasons I fell in love with him and gained a few pounds!! 

We met properly in early 2013, at work. After a couple of dates, I knew that I had met my future husband. He was everything I had ever wanted in a partner.

He made me cry with laughter, he taught me how to love myself, he was very easy on the eye, had a similar outlook on life and he made me feel love like I've never known before. I could be myself around him, no pretentiousness. 

Feelings that I miss every single day since his death. He was my best friend and soulmate – and to me, utter perfection. The Yin to my Yan.

We got married in December 2015 and our son, Arthur was born in March 2016. Our life was pretty good together, we had lots of things we wanted to do; places we wanted to see, restaurants we wanted to sample. We wanted to do it all.

A year or so before his diagnosis in 2018 he had a funny turn at work. For Michael to be complaining or concerned about this was alarming. He was talking to me on the phone and said he felt dizzy, disorientated, things were blurry. Work called an ambulance but after a few tests they sent him home. 

A few weeks later, we were at home and Michael felt ill again, he was sweating heavily and his heart rate was very high. We went back to A&E, and he was diagnosed with anxiety.

We both believed that this was nonsense. Michael had never had anxiety before, and he had nothing to be anxious about. But like most, we went along with the “experts” opinions. 

In April/May 2018, he felt a hard lump in his belly button, after feeling it, I told him not to worry about it. It was probably nothing. Cancer was not on my list of potential causes for a healthy, active 36 year old. After a while, it started getting bigger and he went to the GP. On one occasion, the GP suggested it was simply a bruise, as our son had been poking him in the belly button.

The lump continued to get worse, and we went back to the GP and they thought it was some kind of infection, so they prescribed him with antibiotics. These obviously did nothing to resolve it and he went back.

This time the GP thought it could be a hernia, so he was referred to a specialist. Whilst waiting for an appointment, in September, Michael suffered with really bad stomach pains. He could barely get out of bed and if he did, he was doubled over in pain.

This lasted for a couple of days. He was unable to pass wind or go to the toilet. But like most of us – he assumed the pain would pass, and eventually after being able to go the toilet, the pain started to ease a little. 

In the meantime, he had a colonoscopy, and whilst we were waiting for the results, we had a weekend away to Slovenia with my family. He wasn’t feeling great during this trip as he kept getting stomach pains.

A day after we returned from Slovenia, Michael got the results of his colonoscopy. We went back to the hospital and we were told it was cancer, but we didn’t know any more than that, other than feeling like our world was starting to fall apart. 

Michael had Ulcerative Colitis (an inflamed bowel and rectum) which increased his risk (which I never knew until his diagnosis).

He was meant to have regular check-ups. However, he missed a few appointments and they never chased him up, and neither did he. 

Once they had the test results about the extent of the cancer, we met the oncologist. We were told the devastating news that his cancer was incurable as it had spread from his bowel, to his liver and peritoneum.

They couldn’t operate on him, as it was too dangerous and the surgery would have meant that he wouldn’t have been able to start chemo – which would target all of the tumours.

This was his only option. During this appointment, the Oncologist told us that he would have years rather than months to live, so we were holding on to this small hope and praying for a miracle. 

He started chemo in October 2018, which he embraced like a warrior, never moaning, just took it all in his stride. After three months of treatment and a period of not being able to eat anything other than soups or nutritional shakes, to prevent any blockages, he had his first scans. It wasn’t the news we were so desperate for. The chemo wasn’t having any impact on reducing the cancers. So, in March 2019 they changed the drug combination and he had a port inserted into his chest.  

Scans were done in early May and results received a week or so later. Yet, again the cancer wasn’t responding, with continued growth. However, they wanted to continue this treatment for a little longer to see if it just needed more time to have an impact.

I was running the Edinburgh Half Marathon at the end of May and a few days before we were due to leave, he had a pain in his anus. He rang the oncologist to try and get an appointment with a consultant, but there wasn’t any availability. So, Michael described his symptoms to his oncologist, who advised that it was probably piles and prescribed a cream. 

I tried to encourage him not to come with me to Edinburgh, but he really wanted to come and show his support. His actual response was “I will never see Edinburgh again”, this broke my heart. Who was I to stand in his way?

So that Friday we got the train up, despite his obvious discomfort. When we arrived, he could barely walk, he was in so much pain. It took us an hour to walk the mile to our hotel. The pain got worse, and on the Sunday, he woke up with a huge, angry lump in his perineum (near his anus). It was hot to touch.

We took him to A&E. The lump turned out to be a very severe abscess. During surgery, they discovered the infection was so bad that it was killing off his tissue and muscles, turning them black. Due to the severity of the abscess, they couldn’t just drain it, but had to cut out most of the muscle around his sphincter.

If he had left it any longer, he would’ve died from sepsis. Due to the extent of his surgery and sphincter muscle loss, he was left with no other option then to have a stoma bag fitted. How much more could this man take??

I cried for him, I cried for myself, I cried for our family and I cried for our future. As Michael’s wound would take several weeks to heal, he was unable to restart chemo. Yet another devastating blow – as we knew that without chemo the cancer would continue to grow.  

At the end of June, Michael was best man for one of his best friends. He was determined to be there, despite the obvious pain, and make it the best day possible for them, smiling throughout. He delivered the most emotional and moving best man speech anyone has ever heard.

Not a dry eye in the crowd, yet he didn’t want to make the day about himself. He just wanted people to cherish their lives, loved ones and not take anything for granted. The most selfless man - I have ever met.

It was clear that Michael was deteriorating – the onset of jaundice had begun. But we tried to remain positive, which was proving very difficult as our options were disappearing. We just hoped he could restart chemo soon.

After a phone call with his oncologist on 15 July 2019, Michael pleaded with him to offer him some kind of treatment that would prolong his life - as he felt like he was fading away. He was incredibly jaundiced, very thin, not particularly eating, sleeping a lot and vomiting.

He wanted, as did everyone, some glimmer of hope, something to cling on to. But there was nothing, no more drugs, no more trials, we were clinging, desperate for a miracle. We were numb, motionless, angry and distraught.

On Monday 22 Michael woke up extremely agitated and disoriented. He had barely slept that evening, up every hour and was extremely confused. He was even hallucinating about fixing an aeroplane that had crashed in our hallway.

I took him to the GP where he continued to hallucinate, about parking the car in the waiting room. I was so scared of what was happening to him, I knew that I had lost him.

That day I took him to a hospice for treatment, where I believed that he would spend the next few weeks getting treatment so I could talk to him again, look into his eyes, and tell him just how much I love him.

However, after a discussion with the doctor, I found that this wouldn’t be the case. His kidneys were failing and his body was shutting down. I was never going to hear his voice, listen to that laugh, look into his eyes or reassure him that things would be ok. 

On Tuesday 23, I watched Michael take his last breath. We didn’t even get to say goodbye. I had lost the only man I had ever truly loved and my whole world completely fell apart. 

I’ve cried every day since Michael got diagnosed. There are so many emotions; scared, angry, devastated, shocked, helpless, anxious, guilty, confused, but completely and utterly heartbroken!!

I’m telling our story, because, despite how difficult it is to relive, I want people to look out for early signs and symptoms; any changes in toilet habits, blood in your stools, any hard lumps in your belly, unexplained or unusual stomach cramps. 

These are key to early detection and hopefully saving lives. Push your GPs harder, you know your body better than anybody – if you don’t think they are right, get a second or third opinion; get them to rule out cancer first, not last.

If it is cancer, request details and information on clinical trials available, so you know your options.  Also, if you have existing medical conditions make sure you get them checked regularly – don't miss appointments and think “it’ll be alright.” 

You never think it will happen to you, you think it just happens to other people; the elderly, the smokers, the overweight, the unhealthy, but it can happen to any of us, and your entire world comes crumbling down. You are never too young or too healthy!

Most importantly, Michael would want anybody reading our story to know that regardless of the prognosis, NEVER give up hope, NEVER stop fighting. New drugs are being researched and marketed all the time – one day we can hope for a cure!! But from this day on, make the most of life, fulfil your dreams.

Spend time with loved ones, doing things that help you connect and appreciate each other. Do the things that you love the most, that make you happy, that make you smile. Life is precious, don’t take it for granted!! 

Life is a struggle without him. I miss him every day. The pain is still raw. They say time is a healer...I know that I will never be healed from the loss of Michael. All I can do is live life like he would want us to, raise awareness of this horrible disease and ensure that we keep him alive by talking about him every single day.

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

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