Beating bowel cancer together

Marina Edwards, Hampshire

I met Dan when I was 16 in 1998, we got married in Hawaii in 2007 and welcomed our only child, Claudia in January 2012. We were together for 19 years. Dan worked as a mechanic since he was 15 years old, he absolutely loved cars.

He didn’t have any of the classic symptoms of bowel cancer but I remember him mentioning a small niggle on the right hand side of his lower stomach in January 2018. Being a typical bloke he downplayed this and didn’t want to see his GP, so I booked one on his behalf as I was concerned it could be something – certainly not cancer though.

I’m pretty sure that he downplayed the pain at his appointments, so understandably there was no urgency from the GP either. The pain didn’t go away, he had blood tests that came back inconclusive and he was tested for IBS (Irritable Bowel Syndrome) and coeliac disease – nothing that screamed cancer. The GP was drawing blanks so did refer him to a gastroenterologist which was originally for May but got moved by the clinic to June 2018.

Things progressed quite quickly from February. He now had severe back pain in his lower back. I booked another GP appointment as he was in agony. Again, I don’t think he was very truthful to his GP and downplayed his pain and was prescribed pain killers. He had no other physical symptoms.

By April, his back pain got so bad that he couldn’t lie down, he would have to sleep upright downstairs on the sofa, and was struggling to walk. The pain meds were not even touching the sides. We were due to go on holiday but he felt that he could not manage the trip so at his request my daughter, my mother-in-law and I went to Great Yarmouth for our holiday and he went to A&E. This was the start of the rollercoaster.

Dan went to A&E on his own, he had an ultrasound, MRI scan and it was discussed that he could have lymphoma – blood cancer. I was phoning him regularly for an update and he mentioned that he was being sent for a PET scan.

I know from working in a GP surgery that when a person has a PET scan, cancer is one of the things they are looking for. I knew it was a significant sign, but Dan was being very cagey. I just felt sick and anxious to get home.

We got back from our holiday, and Dan was still being very selective with what he was telling me and just kept telling me to stay positive and not to say anything to his friends. From what I read and in talking to GPs lymphoma is very treatable. In my head I was still scared but positive we would get through this.

It was agony waiting for the PET scan and my anxiety increased. About a week later, we received a call from the radiologist. They wanted to do a biopsy ASAP so we went to the hospital that evening to get more information. There was no mention of a tumour but they had found enlarged lymph nodes in his back. Within a couple of days the biopsy was done and we would have to wait up to two weeks for the results. The waiting was torture.

We are now at the end of April and the pain in his back was unbearable. Dan had been given the number of the haematologist registrar. He phoned her and explained how much pain he was in. Dan was asked to urgently go to A&E where the registrar would meet him.

I was at work when he phoned me to say he was going to hospital. He said there was no urgency to join him as his dad was there and it is likely they’ll just be doing more tests and I should come after work. I trusted his judgement and finally left early at 5pm.

I arrived at the hospital and was brought into the cubicle he was in. His dad looked very upset. Clearly something was wrong. Dan was sat on the bed very clearly and calmly said to me that he had bowel cancer.

This was a huge shock to the system, I went numb. I didn’t know what to say or think and he wasn’t showing any emotion.

He was kept in the hospital overnight to manage his pain and was going to be seen by a colorectal nurse specialist (CNS) and his surgeon the next day.

I walked back to my car in a daze. I had a gut feeling that this was far worse that Dan was making out. I made calls to my family and work to tell them the news. It felt like something out of a film, that it wasn’t happening to me. 

Work were incredibly supportive.

I managed to get through the night and I turned up at the hospital at 8.30am. We are now at the beginning of May and heading into the bank holiday. I was hoping to catch the consultants doing the rounds and when I got there the CNS had already started talking to Dan who had a terrible night and was in pain and very grumpy.

With his dad on one side and me on the other I listened to the CNS. When I asked her questions, she was incredibly vague. I’m not sure if this is because he told her not to divulge any information to me, or if they’re airing on the side of caution, I just knew there was more to it.

The surgeon came round before midday and explained that they could not just cut the tumour out because the cancer had spread to many lymph nodes in his back. The recommendation was chemo first and then to see how the tumour responded.

The oncology team who were based at a local cancer hospital had clinics every Monday in our local hospital, but due to the bank holiday Dan’s first oncology appointment would be delayed an extra week. Another waiting game and still Dan refused to let close friends or our own daughter know.

The appointment came through for 14 May.

Now we had a diagnosis, I noticed a big change in Dan. He was actively losing weight, he was in immense pain and was getting tired quickly. He had been signed off work and continued to try and remain positive and carry on as normal.

May 14 arrived - it was time for the first oncology appointment. The clinic was running behind and it felt like we had been waiting hours. Dan had to be weighed before he went in. When we finally got to see someone, it was the registrar. I was shocked. It threw me. I was expecting it to be a consultant. I later found out this was normal practice.

The appointment felt like a box ticking, administration exercise. They asked questions like do you understand your diagnosis, family history, describing the different types of chemo. There was no real discussion about Dan’s diagnosis or how he was feeling. They explained that Dan was on palliative care, I questioned did they mean end of life to which the registrar categorically said no. At this stage Dan was on palliative care because they weren’t sure it could be cured. If the chemo worked and it could be removed it would be classed as curative. We were told that Dan would have six sessions of chemo followed by a scan to review the cancer and then another discussion about next steps.

Then the consultant finally came in for all of five minutes. Her demeanour was incredibly hard-nosed. She was dry and emotionally unattached. It felt like she had no interest and I had no idea about the questions I should be asking.

The only question I could think of was would Dan be OK living with our daughter due to his immune system? She’s six years old and like all children, a breeding ground for germs. However she explained that often they’re resistant to their own children’s germs so it’s not a problem.

I asked when Dan was then due to start treatment and was told in a couple of weeks. Dan was quiet, listening, not mentioning the pain he was in. We walked out of the appointment in limbo. We knew he was due to have chemo, but not sure when it would actually start.

I encouraged him to go to his GP to get more pain medication for his back. They were fantastic, and recommended seeing another GP in the practice who’s an expert in palliative care. Dan didn’t want me to come with him to this appointment, and was still very much trying to do everything on his own.

I spoke to the GP after his appointment and asked the GP if he had shared with them exactly how much pain he was in, and that he had not slept in a bed for four months. He hadn’t. It was incredibly frightening that he wasn’t being open and not letting me help him.

That night at home I sat on the sofa with Dan. I just wanted to be close to him and have an open discussion about what was happening. I got very upset and he just turned to me and said "I don’t need you to cry, I just need you to be positive".

I was so angry and felt he was dismissing my feelings, the ‘what ifs’. I explained that I understood his need to remain positive but it feels like he is burying his head in the sand. I was on the outside looking in. I am the one who will be looking after him and if he doesn’t make it, I’m the one who has to pick up the pieces.

He went silent and that was the end of the conversation.

Dan was still reluctant to discuss things in detail with friends or tell our daughter. She’s too young to understand I was told. She is one clever little girl who I’m sure knows that something is very wrong and we owed it to her to be honest.

He really didn’t want to tell our daughter despite me pushing. In the end he agreed I could tell her. I sat her down at the table - just me and her and explained that daddy had bowel cancer. I explained what was happening to his body and that he needed to have special medicine to help fight the cancer. The only question she asked was if daddy was going to die. I simply said that he was having special medicine to try to make him better but we didn’t know. She just accepted it.

There were no other questions, no tears, no anger - just acceptance. It felt a relief to tell her but I was devastated having to tell my only child that she might lose her daddy.

Two weeks had passed and still no appointment letters had come. Despite regularly chasing the cancer hospital, they were very blasé and just said they would be in the post. We kept chasing and on 29 May we finally had a verbal nurse led appointment for 8 June.

On 30 May we received a call from the CNS nurse to check that we would be attending the appointment for the PICC line insertion and first treatment. Dan advised her that we had not received any letters to which the CNS was now concerned at this. Fortunately she knew the date. It was on the 11 June.

The 8 June came and we met the nurse. She again went through the side effects and red flags. I duly pointed out at this stage that Dan’s personal details were incorrect – particularly his registered GP and gave the amended detail form we received with our letters and was told that this would be rectified. The 11 June came and off we went to the hospital.

Dan was still managing to drive at this point, but he was still in an incredible amount of pain. We arrived at the hospital a little late due to very bad traffic. Fortunately the nurse was so lovely. Dan had his PICC line fitted. Next he had his first session of chemo and came home with a pump, to pump the remaining chemo through his system for a further two days.

We were told a district nurse would come at some point to remove the pump. Dan couldn’t get his head round the fact that we weren’t given a specific time and date the district nurse would attend so he asked me to phone the DN’s the next day to confirm.

They hadn’t even received a referral from the hospital. I was very angry and worried. I phone the cancer hospital, and they were immediately on the defensive.

They had faxed the referral to the wrong DN team because they hadn’t updated Dan’s GP details despite me pointing it out. I had to give them the email address and contact number of the correct DN team because they did not have it!

When I questioned why the details were not changed, the nurse said that they get hundreds of details to change and they simply don’t have the time.

At this point my anxiety is through the roof, it was a very stressful time. I was trying to stay positive, keeping the family together, carrying on with life, continuing to work knowing that he has an aggressive cancer.

After the first round of chemo, he was continuing to lose weight and his feet were swelling. He struggled to wear shoes and couldn’t walk too much at all not to mention the fatigue and diarrhoea. I was having to prepare his medication, meals, drinks, wash and help dress/undress him. The day after his pump was removed, Dan developed a hideous chesty cough.

I tried to phone the advice line. I left a message and when they called back. I was out and Dan picked up. I’m not sure what conversation they had, but Dan just said they were going to monitor him. As the day went on, he got worse and by the evening he was struggling so much, to clear his chest and could hardly breathe. 

I drove him straight to A&E where he was diagnosed with pneumonia and was very quickly moved into the cystic fibrosis ward. I could not believe my luck. Things just seem to be going from bad to worse.

I had a conversation with the respiratory consultant as nobody was telling me how bad it was. Dan had been hiding letters, the consultant confirmed his cancer was stage 4. He was getting very ill, very quickly.

Dan didn’t want to know if he was dying or not. I had a gut feeling that if he made it to Christmas, it would be a miracle.

Monday came and whilst the oncology team were doing the rounds, they couldn’t even be bothered to come into the room. They relayed a message to the registrar and that was it. There was no discussion, no further treatment plan. Nothing!

Dan was miserable, and in pain. He didn’t want to speak. It made it harder for me. He was in hospital for about a week and he was deteriorating quickly. He now had thrush in his mouth, struggled to eat and was going up the stairs with his hands and feet. He needed 24 hour care but he wouldn’t let outside carers in. He insisted it was friends and family. I started to discuss with work reducing my hours so I could look after Dan more. I was now his carer first and wife second.

Tuesday 26 June arrived and we finally had an appointment with the oncology consultant. He couldn’t walk more than a couple of feet and was wheelchair bound. I drove him to hospital. He was already physically exhausted.

We met with the consultant and the CNS. I was getting upset about the way we’ve been treated. The consultant was very defensive. The consultant was not very forthcoming and still not telling us how bad he was. She just wasn’t listening and she was very patronising to us.

They explained he was too ill to have the second round of chemo. They were concerned about his weight and that he needed to put more weight on. After the appointment, I wheeled him to the pharmacy as we ended up waiting for an hour for more medication.

We got home, and it just felt this was never ending. We had no clear information, no support and I had to be very careful what I said to Dan. It was very overwhelming to see how poorly he was, and he just wasn’t talking to me.

We still hadn’t had a conversation about what if he dies. The only person willing to tell me the truth was the GP. He explained that if Dan couldn’t have chemo he was going to die very quickly. It was the first time anyone had said something like that to me and confirmed my thoughts.

Dan’s sister-in-law is a district nurse and understood the situation. She explained to Dan’s parents that he was dying. They refused to believe it and rang the hospital for clarification. I remember receiving a call from the hospital asking if they could share his prognosis with his parents. They were told that they were happy with Dan’s progress and rest assured he was on the best treatment. I was mortified. It made me look stupid and untrustworthy.

Two days later on the 29 June, he passed away in our house whilst I was on my way home from our daughter’s sports day.

Our daughter was sat on the sofa with my dad and as I walked round to speak to Dan I knew instantly he was dead. I just blurted it out. I phoned an ambulance and performed CPR until the paramedics arrived. Thinking of that day still feels so surreal. Everything was happening in slow motion.

Dan was only 38 when he died from bowel cancer, two months after he was diagnosed and two months before his 39th birthday.

I believe he had been hiding his symptoms for about a year. Afraid to admit he had a problem, afraid to go to the doctor.

The last 18 months has been incredibly hard for the whole family. I am still adjusting to being a single parent and losing my soulmate and there are many days that I struggle. I’ve been on autopilot trying to distract myself from reality. Keeping myself so busy so I don’t have to think about what’s happened. I managed to plan a charity ball to remember Dan and to celebrate what would have been his 40th birthday in August 2019.

We have got through two Christmases without him and my daughter has celebrated two birthdays without her daddy. I particularly find her birthday the hardest day to get through. It’s a stark reminder of just how much she has grown. Another year Dan has missed and then all the future years he will miss, and it breaks my heart.

Bowel Cancer UK have been a great help following Dan’s death. They are extremely supportive not to mention the online community. They also gave me an opportunity to create a Star of Hope fund, which helps me keep his memory alive and a place for friends and family to go to.

Sadly our story, as you have read, is not a positive one and highlights just how much more research is needed. More NHS staff and support for our GPs in diagnosing. We also need to remove the taboo/stereotype about how emasculating it is for men to discuss their feelings.

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 are 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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