Beating bowel cancer together

Chris Daniel, 54 from Merthyr Tydfil

"I met Rita 36 years ago when we were aged 17. It’s amazing to meet someone you love when you are that young. We met outside Samuels the jewellers as I worked there in the watch window. She used to hang around outside with a gang of girls and we met and we went out. We were married 33 years.

"We had our hard times like everyone does but you get through them. It was just starting to become our time and we had such plans for the future.

"When she was 48 Rita started to feel not quite right. At that stage we didn’t know anything about bowel cancer.

"Everyone knows about the signs and symptoms of things like breast cancer and prostate cancer but it isn’t the same with bowel cancer, we didn’t know the signs.

"It is so frustrating because Rita did everything right. There was some blood in her stool but we even think today that that was a pile or a haemorrhoid. But her doctor didn’t take the chance. He said he didn’t think it was cancer but would send her for a scan just to check.

"Rita always ate the right things; she ate salad, fish, everything that you should eat to be healthy.

"Her dad used to always cook a fry up and even then Rita would eat salad. She was healthy eating even before it got so popular.

"She didn’t smoke, was physically fit, wasn’t overweight. She didn’t have any of the risk factors.

"On February 10th 2012 we found out she had cancer. Just remembering it takes me straight back into that room. We cried all the way home, we were both completely uncontrollable.

"The next month passed by like a dream. It was just so difficult to come to terms with and it must have been so much harder for Rita.

"A cancer diagnosis hits everyone, it’s like dropping a bomb and the ripples touch everyone.  And the closer you are to the person that more impact it has on you. It changes you and affects you forever. It is the worst. Unless you’ve gone through it, you just can’t explain it. It is total devastation.

"Rita had a fantastic oncologist. He really was superb and he switched chemos back and forth.

"She was really unlucky in so many ways. It didn’t break through the tumour wall. In anyone else it would have been stage one but it was rare and had spread through the blood as it was close to her lymph nodes. She was diagnosed really early but it had spread to her liver and lungs. She had a PET-scan and it showed numerous tumours in her lungs and liver.

"Within one month we were finding out all about it. It was stage 4 already and people were talking about palliative care and that it can’t be cured.

"There were a couple of choices and there are no wrong choices.

"Rita said you need to walk a mile in my shoes to really understand. She was determined that she was going to fight through it. Rita survived four years because she was strong enough to take the treatment. Other people weren’t. Other people had made lifestyle choices which meant when they got cancer they weren’t strong enough. You can’t stop bad habits, you can’t suddenly change. You can try to but there are all the years of back up. People who should have survived didn’t. Rita was determined to fight it.

It was just so difficult to come to terms with and it must have been so much harder for Rita.

"We took the approach of marginal gains, something that is applied in professional cycling. We took that and adopted it into Rita’s routine. She always took gloves with her so she could wear them on things like escalators when you hold onto the hand rail. We would clean anything that other people’s hands had touched and went round with wipes on a regular basis and we were always washing our hands. It was the little things to cut down on infection and cope with the treatment.  Although it was palliative we had hope that we could keep Rita alive as long as we could.

"The twitter network was brilliant. It linked us with other people in a similar situation. It was so fabulous. It felt like weren’t alone and it was an incredibly strong network. It was often people at the worst levels that offered the most support.

"It really does make a massive difference to have someone to talk to.

"She wouldn’t focus on herself; she just wanted to raise awareness. She didn’t want people to face what she did. 

"We wanted to do things to raise money. To allow people to have the treatment they needed.

"I cycled in my 20s but only took it up again a year before Rita was diagnosed. I just got back on the saddle and started pottering. I started a 200 mile ride.

"For two and a half years out of the four Rita went through horrendous chemo and towards the end radiotherapy. It was horrendous. As soon as it ended each time she wanted to do things.

"After one year she had the tumour out. To avoid blood clots and help with healing you need to get out of bed and move. The day after her surgery she walked down the corridor with her consultant. That’s how strong she was.

"Chemo wiped her out. We used to walk out to get some fresh air, just a little walk no matter how ill she was. In the longer term it would help.

"After three months she wanted to go places – go on holiday, keep going, you need a quality of life.

"She was stage 4 and we went to Norway and she walked two miles up to a glacier and back down again. It was just absolutely incredible the strength she had.

"She also started to do sort of mentoring or coaching on Twitter and Facebook. It was amazing how many people got in touch, how many people she helped.

"So many people got in touch with me after Rita died. A girl in her 30s, her sister got in touch at 1am in the morning on Facebook and left a lovely message about how much Rita had helped her and reached out to her during the last year.

"It was a really difficult time. Rita’s dad also had prostate cancer and yet she was still a rock for him.

She didn’t smoke, was physically fit, wasn’t overweight. She didn’t have any of the risk factors.

"The ripples just keep going out with cancer. In a lot of ways Rita was actually supporting us. The strength of the woman was incredible. We kept thinking surely we’ll get a break.

"We went to Ireland and walked all around Dublin. Then when we came back she had radiotherapy and we found out in very rare cases it can go to the brain and Rita’s had gone to her brain. She ended up having stereotactic, like beam radiation which in pinpointed to within millimetres on her liver. This took out one main tumour. She then had normal radiotherapy on her brain. That was when it really started to get difficult.

"For example we were watching TV once and she could see a really bright light in the middle of the screen. That was partly from the tumour but also from the treatment.

"She lost her hair 3-4 times. The wigs were excellent but it was still very traumatic. She had to wear like a cold cap for two hours before chemo and two hours after. It did help save some of her hair but it was freezing cold, her head and hair would be covered in ice, her lips were blue. You can only use that for some chemo as well.

"She had such incredible strength.

"This disease is so appalling. It starts to strip away everything you hold dear. Watching it she was getting really frustrated. For example she couldn’t remember how to use some of the buttons on the Sky TV remote. The disease took over.

"She was an excellent cook, she loved cooking. But one year I had to make the Christmas dinner.

"When I did the cycle around Wales she wanted to be with me but she had to have chemo during the ride. But she even came and did a bucket collection even though she was going through treatment. Even though she had had chemo she came to the end. How on earth did she have the strength.

"Chemo was the most horrendous thing you can watch happen to someone. The treatment it sometimes worse than the disease. She didn’t have feeling in her toes, she lost her nails, her hands were affected, and she had pains in her bones. She had rashes and used different creams. There were so many side effects.

"Right the way through to the end she was helping other people.

"She went to hospital in April. In the end she couldn’t walk 100 yards. It would take it out of her completely. When you have radiotherapy you can’t have chemotherapy. After having radiotherapy for her brain she had to be well enough for chemo. It was building up in her lungs and she was having problems walking and with her coordination. She had down days but she was so strong, so resilient.

"We went to Ogmore one day and there were three benches 200 yards apart. We had a picnic and she said I’m going to walk between those benches. And she did.  It took nearly an hour and a half, maybe two hours.

"The next day was her birthday and we had a great time. We went out for a meal. We had seen the oncologist the following Wednesday and we said lets go for a ride, she said lets go and see my parents. We never did this when she was ill as she didn’t want to worry them. When we were there she started to feel really ill. She also thought she had upset her parents.

"We went to hospital the next day.  We thought it was infection, why she was feeling ill. Over the next few days each day she had various scans. She got to the point where she could hardly move but she still wanted to get into a chair to prevent blood clots and she tried to watch TV.

"The next day they found another brain tumour. We had to tell her that it would only be a few weeks. To hit someone with that, it was so difficult to copy with.

"Her sisters came and visited and she told them about what they should do in their life.

"She started to deteriorate in days rather than weeks. In the final few hours she had a syringe driver which helped.

"The more people that know about Rita the better. It puts into perspective why I do what I do.

"She was in pain and get scared at the end. She was frightened. When she was scared she never showed anyone else apart from me. But there was nothing I could do to help. The syringe driver gave her more peace. And then she passed away.

"She knew what we would be like afterwards so she had planned everything – her own funeral, she wrote her own eulogy and I read it out for her. The funeral was enormous. There were so many positive messages from people. Someone who actually worked at the church actually came out and said what a real celebration it had been. She wanted a celebration.

"A few days later I was looking for something and in the corner of the wardrobe found a little pink envelope. It was written four years ago when she first went into chemo. She said she was going to give it a really good fight. There were sealed letters for everyone.  I still read it now.  It said I want you to be happy, the disease will not beat us.

"She always thought about other people.

It rips me to pieces every time I talk about it but I need to do it to get the message across.

"In terms of my virtual round the world cycle challenge we both knew there was only two ways this would work, it would happen if Rita was well as I couldn’t do it if she was ill. I thought long and hard about it. I think in many ways she would have wanted me to stay at work around people but in reality Rita wanted to raise awareness.

"We had never used social media before Rita got ill. She had always said she didn’t want people knowing her business. I started first, I thought if I went on in might help and you get more connected will people.  We found Bowel Cancer UK. People started contacting me and then Rita set up her own Twitter.

"Deborah Alsina is so active, so committed, it really made the difference.

"Things grew from then. I would never have used it before. Social media is a great tool you can use. Look at the ice bucket challenge. There is lots of good on there.

"Deborah is an amazing woman, I don’t know how she does it. She doesn’t just talk to one person she talks to so many and gets close to them.

"One of the realities of the disease is that so many people you get close to won’t be here next year.  It gives so much comfort and support.

"It would be great for Bowel Cancer UK to have a presence in Wales. It is usually the worst for things. We need support in Wales, we need someone in Wales who will lobby. Someone who understands the Welsh contex,t and Wales. It would make an enormous difference and they could link into places like Velindra. The situation is not good enough here in Wales. For example if you get bowel cancer in mid Wales I’m not sure what you would do.

"It is incredibly painful every time I talk about it but Rita would have wanted more awareness. It rips me to pieces every time I talk about it but I need to do it to get the message across.

"Rita used to say chemo was like imagining you are riding up a really, really hard hill. There is a period where you think I can’t do this, you want to get off the bike because you are in so much pain and mentally you either get off or you do it. She said that split second of searing pain was what chemo was like for days or weeks afterwards.

"If she went through all of that, she might have wanted to stop but she wanted to raise awareness and money as she didn’t want other people to go through the same thing.

"I will do whatever I can for the rest of my life. I’ve given up my job. But I couldn’t live with myself if I didn’t. This ride is for Rita.

"Rita was always thinking about someone else. You see so many bad things but there are so many good people that were so good to us.

"The pain is still there when I talk about it. No one had a bad word to say about Rita. I have to think there is a reason why all of this happened to make sense of it and to help other people."

Chris is virtually cycling 18,000 miles around the world in memory of Rita who died of bowel cancer in 2016 to raise awareness and money for Bowel Cancer UK, Velindre Cancer Centre and Cancer Research Wales.

On Friday 1 December 2017, Chris started his challenge by cycling 100 miles on a static bike at Portland House, Cardiff Bay. Sponsored by TACX, the ‘TACX Virtual World Ride for Rity will take him six months to complete, cycling an average of 100 miles per day.

Follow Chris’ cycling challenge on his website and on Twitter.

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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