Beating bowel cancer together

Katia Cole, Reading

My partner of 19 years died from stage 4 bowel cancer in September 2020, a week before his 37th birthday.

Chris and I met at school in Devon. We were together for more of our lives than we were apart. We moved to Reading together for employment and managed to buy a house after years of hard work. Nearly four years ago we started a family of our own and we now have two amazing children.

It was around the time of our daughter's first birthday in May 2020 when Chris' symptoms started. He was complaining that he was tired, quite achy and had indigestion. Due to the covid lockdown our lifestyle had changed: Chris was working from home and he wasn't used to sitting at a laptop all day. He would often be up early in the mornings sleeping awkwardly on the sofa with our daughter too. We monitored the aches and pains but thought they weren't surprising, considering. He did call 111 a few times as his symptoms weren't going away, but the medics just said these were quite common and he was just adjusting to a new lifestyle.

Sometime in July he phoned his GP, who attributed his symptoms to possibly the aftermath of coronavirus even if he'd never realised he had it. They referred him for a blood test, and the results came back showing some abnormality in his liver. He had more tests and investigations and a CT scan revealed that there were some lesions in his liver and a growth in his bowel. They did say that it could be cancer but that it could also be a whole host of less serious things. I thought it was unlikely to be cancer – how could it be when he was young and healthy?! It wasn't until he got the results of his scan that the tone of the doctors changed and he received a lot of focus and attention. Then, I began to realise that cancer could indeed be possible. He hadn't yet been given an official diagnosis but we started to take it very seriously and made sure he got all the rest he could.

Whilst he was waiting a week or so for a colonoscopy, Chris was in a lot of pain, in his shoulders, back and abdomen. It was worse at night where he would experience both pain and a sort of panic. I would try and make him as comfortable as I could, asking him what he needed and we tried to navigate what we could manage ourselves and figure out what we needed help with. Preparing for the colonoscopy was tough. Although an often routine procedure for some people, it was clear something wasn't right. He had always been fit and healthy. This was all so new and unknown.

After the colonoscopy they confirmed it was cancer in his bowel that had spread to his liver. A week later, just before we saw the oncologist, I had a long chat with a clinical nurse specialist. I found it really nerve wracking to be the main contact with the healthcare professionals now. I was desperate to take everything in and do everything I could to help Chris recover, while at the same time trying to making sure our children were being cared for with the help of our visiting families.

On 5 August 2020 the oncologist delivered the official diagnosis telling us the cancer was inoperable. I had already spent too much time on the internet googling about cancer spreading to the liver – I learned that it was stage four and what survival rates were. Chris wanted information in small manageable stages and I was careful to respect that and not to bombard him with my own investigations. I wasn't the one having to go through it.

The oncologist said he'd have chemotherapy straight away but it was for palliative purposes. As he was young and fit she wanted to 'throw the book' at him in her words but this had to be tempered with the extent and aggressive nature of his cancer. During the appointment Chris asked how long he had – this was information he needed for himself. The answer was that the best case scenario was a couple of years and the worst case just a few months. He was 36, a father to two young children – it was a huge shock! Everything hinged on how he took to the treatment but the facts remained the same. I held onto hope wherever I could and found stories of people still managing to recover who had been diagnosed the same.

After that appointment we just walked round in a complete daze. There were a lot of long pauses where we just stared into space. We didn't understand how this could be happening.

Chris wanted to focus on giving himself the best chance of recovery. It took all his power and strength to manage the symptoms he had. It simply wasn't time for a bucket list.

Due to pain and complications with a blood clot in his liver he couldn't start chemotherapy immediately as planned. After a couple of visits to A&E and another CT scan they increased his morphine dosage and he had to have daily blood thinning injections. The doctor asked me if I understood what palliative meant. Sadly I did but I never lost hope of his recovery.

He had three rounds of chemotherapy. After every round the side effects increased. We pretty much had to go to A&E every fortnight. The swelling in his abdomen from the cancer in his liver was pushing on everything and making him very uncomfortable. Fluid retention building up from his feet, ankles and legs to his belly increased over the weeks. Chris was due a scan to see if he was fit enough for more chemotherapy. He had been getting more confused, which was very unlike him and he had a little fall when he went to get his PICC line cleaned. Alarm bells were ringing but we focused on one day at a time.

When we next saw the oncologist we heard the now familiar tone of bad news. The cancer hadn't got worse but the chemo had had little effect. The fluid retention was increasing and now it was a priority to drain it. It was particularly hard when we were asked about what resuscitation decisions we wanted to make. We were told more urgently we should prioritise moving to Devon where our families were, unsure of when or if Chris should have more chemotherapy.

That night he complained about pressure in his ears, and was very restless. At 11pm I phoned the 24 hour nurse helpline. He was due to go to hospital in the morning to drain the fluid and I was just told to sit tight; that we shouldn't go to A&E as we'd be waiting hours. He was making less and less sense and I was gravely concerned about him. I was just so grateful the kids were fast asleep. At 4am, I rang the helpline again. They said the same thing; perhaps a bed in the cancer unit could be ready at 7am but if I chose to go to A&E that I could lose the bed or just be left waiting. I was now quite scared and felt powerless.

Soon after, Chris murmured something like nee-naw, I knew he meant ambulance. I rang 999 and thankfully they came quickly. They put him on oxygen and his blood pressure was very low. By this point our one year old daughter was awake, waving her daddy off in an ambulance. She had no clue what was going on and just wanted to look at the wires and buttons. Chris, even at this moment was still checking if we were OK and whether our son was up and not disturbed that he was being treated.

An hour or two later, I received a call from the hospital to say that I had to come quickly and should alert the family. The doctor explained that it could be premature but there was every possibility that Chris would die in the next few days. I went as soon as I could. We saw another oncologist who said Chris's situation was very unfortunate – which seemed a ludicrous thing to say!

Throughout all his time in hospital Chris was so polite and grateful to all the staff. I don't know how he did it. He was in a quiet ward, he was chatting a bit but he was slipping in and out of consciousness. They were draining fluid but it was not improving his situation. By the time his family arrived, we had to see him one at a time. We were given a family room where we could wait. I felt closer to them more than ever and am so grateful they came so quickly.

I stayed in hospital overnight with him, whilst they were draining fluid still. He was panicky at times and he tried to get out of bed, fighting to stay with us as much as he could. He wanted to get moving and make a plan! This was typical Chris. However he didn't have the strength to get up. I comforted him by holding his hand, chatting a little, adjusting things so he was comfortable. Just little things to let him know I was there. We were often quietly content with each other's company so it made sense to retain this. I thought if I was chatting all the time I'd annoy him! I talked to the doctors about what it felt right or strange to do and they reassured me there is no right or wrong. You find your way through, focused on your loved one.

On his final day the whole family gathered round his bed together for hours. We were chatting about his childhood and what he was like at school. You could see how quickly he was comforted by having his family with him, listening to all the stories we were chatting about. Chris was never one to be the center of attention, but he loved conversations going on around him. The staff made room for me on the bed with him and I am so grateful they did as knowing I could comfort him meant so much on that day.

When you realise that your loved one is going to die, there's no speech or letter that's been written that prepares you or is waiting for you. It's not like it's portrayed in films. Chris absolutely loved his family and he knew that we adored him too. We can't change what happened, but I am grateful that we were all in no doubt of how much love we shared.

He died on 25 September 2020. Although the worst possible thing to happen, it was beautiful, which sounds strange but it's true. He was comfortable, pain free and infinitely loved when he took his final breath.

Right now, it feels like someone has taken half my oxygen. We had a really solid relationship. We have children, we're a family. There's now a massive void that won't ever be filled but I'll have to learn to live with it and find a way to manage it.

One thing I wish I could to do is to talk to him about what it was like to be caring for him whilst he was going through bowel cancer and even to see him die. I want to know what it was like from his perspective too. We've gone through a huge life changing experience and it's so odd that I can't talk to him about it like we normally would have. Having a de-brief with Chris' oncologist really helped to go over what had happened. She reassured me I can still ask questions at any time.

Of course I also miss him as a parent to our children. It's utterly devastating that they won't have their own memories of their dad. They'll never truly understand what they've lost but we will surround them with our precious memories as much as we can. We've had some amazing support from Winston's Wish for advice on how to support the children with their loss. They will be closely monitored and it's recommended they have colonoscopies in their early 20s. Education on preventative measures and early testing will be such a high priority for us.

Our whole family will do all we can to support Bowel Cancer UK in the hope that we can learn more about how to prevent and combat bowel cancer in the future.

But we're improving access to treatment and care for advanced bowel cancer

Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.

We're determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:

  • increasing survival rates and improving holistic support for patients and their families
  • reducing inequalities in access to potential life-saving liver surgery
  • improving access to cancer drugs based on clinical need and not postcode
  • providing better communications and support for people with palliative and end of life care needs.

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