Beating bowel cancer together

Maryanne Smith, Kidderminster

My youngest sister, Megan, was diagnosed with stage 4 bowel cancer in January 2019.

For around 18 months before her diagnosis, Megan went to her GP multiple times with classic symptoms of bowel cancer. She was passing a lot of blood, she lost weight, her appetite changed and the last six months she suddenly became very poorly. Every time the doctor said the same thing, it was irritable bowel syndrome (IBS), piles, her lifestyle.

She even mentioned her family history of bowel conditions, I had surgery on my bowels in 2016, but again the GP still didn't refer her for further tests.

We're a big family, I've got three sisters and a brother, and we love nothing more than gathering on a Sunday for mum's roast dinner. We were all very concerned when Megan stopped eating.

My sister, Terri, went with Megan to the GP and when they said it was IBS once again, Megan broke down. She knew something was seriously wrong but they were dismissing her because she was only 25. They weighed her again, and when they saw she lost even more weight, they quickly referred her to a private hospital for a colonoscopy the next day.

The consultant couldn't even get the camera through her bowel as there was something big blocking it. They took a lot of biopsies but no one said anything about cancer, she was told it was likely to be Crohn's Disease and they sent her home with anti-inflammatories.

However a few hours later Megan got a call to say that she needed to come back to the hospital the next day for more scans. We were in and out of hospital for two more days, until we finally got the results of the biopsy.

On 2 January 2019, she was diagnosed with bowel cancer. We didn't know the stage or any of the details, but after that was just a whirlwind of appointments. We met Megan's oncologist who gave us the biggest blow – she was inoperable. The oncologist recommended that she start radiotherapy straightaway. She knew that this treatment could make her infertile, and there was no option to freeze her eggs. She was devastated as she's always wanted children and a big family of her own.

It was combined radio and chemotherapy. She didn't have too many side effects for the first couple of weeks but all of a sudden it hit her like a ton of bricks. She was in so much pain, she was rolling on the floor – it was like she was in labour, but it lasted three to four weeks.

Megan didn't want to know the details of her diagnosis as it scared her, so she gave her oncologist permission to share it with us instead. As a family we went to see the oncologist, without Megan and our mum, she said it was stage 4 bowel cancer and it was incurable and inoperable. We just wanted to do everything we could to prolong her life. She explained that there was Avastin, which helps stop the cancer spreading, however it wasn't available on NHS. It was our only option. We all made the decision to try it. Our dad said to us all as family no matter how bad this is, we need to face this head on as a family, be strong and do what it takes to save my little sister's life. Since then we have spoken about Avastin to other families who have been diagnosed with bowel cancer. We have always said never look down on anyone unless you're helping them back up.

I'm really proud of the family, how we've supported Megan and pushed for treatment. We never gave up on her. As a family, we've been through so much but we're stronger than ever.

We agreed to have it and we had to fundraise to pay £1,200 every two weeks. It made such a difference, but the side effects were incredibly painful. She was screaming so much that people passing by the house could hear her crying. She was on morphine and pain relief patches to try and manage it. We even tried cannabis oil. As a family we've always been against drugs but we researched a lot about it and we needed to try it.

From August 2019, she was in and out of hospital for five to six weeks at time, her longest stay was nearly three months. She developed sepsis, a fistula and a blood infection. She was so scared of being in hospital by herself, that the family took it in turns to stay the night with her.

A scan showed that the tumour had shrunk but it did perforate her bowel. It meant that she could have surgery. The on-call surgeon did my bowel operation, it reassured her that he was a good one.

By this point she was still in a lot of pain. The medical team wanted to move her to a hospice to manage it. The nurses said we were in denial about Megan, but we were scared that if she moved to a hospice that meant she was dying and we just so desperate to prolong her life. You never know, new research or a clinical trial may come available and she could try it.

The surgery was a success and they removed the tumour. She had drains to remove the collection of puss that was developing. She was still having chemotherapy every two weeks, the cannabis oil and the pain relief patches.

In January 2020, she became very poorly and at 4am mum phoned me to say she was taking Megan to hospital. She had really bad sepsis from the collection of puss that wasn't draining properly. She wasn't strong enough to go into theatre to properly drain the puss, so they put her on a ward. They gave her anti-biotics, fluids and even though she felt sick after eating, we encouraged her to eat what she could so she could build her strength up. It was the first time I thought she was actually going to die.

She reacted really well, her blood markers came down and she was able to go into theatre. She had a scan and the number of nodules in her lungs had decreased. We were all hysterical, crying happy tears. Megan wanted to visit the Costa Coffee in the hospital, the nurses couldn't believe it that we were wheeling her downstairs. She just looked like a different person.

Also in January, our dad was diagnosed with aortic aneurysm – where your aorta swells. It can be fatal if it bursts. He was a lifeguard when he was younger, and he used to cough up blood. There was asbestos in the swimming pool where he worked and a number of people that worked there or swam in the pool also have this condition. He was really poorly with it, but luckily the asbestos was just in the lining of his lungs so he was able to have surgery. He's made a good recovery since.

At one point, dad was in one part of the hospital and Megan was in the other. When dad came round from the surgery was in intensive care, he was a bit confused and started getting out of bed to see Megan.

After Megan's surgery she had recurring fistulas. It meant that she needed to have a break from chemo so it could heal. When she went back on the same chemo regime, she had a horrendous allergic reaction to it. The oncologist kept lowering the dose but it wasn't making a difference. She put Megan back on the first chemo she had but still alongside Avastin. After a few months she had a scan and there was more spots on her lungs and a small nodule on her liver.

She was running out of NHS options so we did some research. We found a clinical trial that she would be eligible for in America. A lady with the same mutation as Megan took part in the trial and it nearly cured her. We just had to try it. The oncologist agreed that we could pursue this.

We contacted the clinic and for all her care and medication it cost us $150,000. My brother PJ and Terri had to do a lot of research to get her to America. A few oncologists advised her not to go but we didn't give up as a family. Megan is one of 20 people in the world that is on this clinical trial.

We set up a crowdfunding page to raise the money and we agreed that we would pay it in installments, and Megan was due to fly out in the next week or so. The day before the flight, the clinic rang and said they needed the $100,000 up front. We were devastated as we didn't have all the money. Megan broke down, she was hysterical, and all the family tried desperately to sell everything they owned and remortgage our houses to raise the cash quickly.

Luckily they agreed we could pay the money in installments, and we continued to fundraise whilst she having treatment. We booked her another flight.

The evening before she was due to fly out, she got into the bath and suddenly she started screaming. She was hallucinating, there was spots on her eyes and her eyes started rolling backwards. We got her out of the bath and put her in the recovery position. I thought she was going to die and I would have to perform CPR.

We rang for an ambulance and at the hospital she had a lot of scans and tests. I thought she had a stroke but there was no evidence of this. All the results came back clear.

We spoke to the clinic again, and rescheduled her flight to America for the next day. At the time of writing this, she's in America.

We're trying to get her dog out there with her. The puppy was born at the same time she was diagnosed, and she really bonded with him. He really helps to calm her down.

When she was having chemo she would often do some painting by numbers. One of her paintings was a lion and the nurses framed it and put it on the wall.

The fundraising is going well. I've been really proud of everyone, our nephew who's only 12 ran 13 miles and raised £1,700, whilst my niece encouraged her school to pick her aunt's fundraising page as the chosen charity for her school's pyjama day, which raised £300-400.

Megan has always worked long hours looking after adults with autism and learning difficulties. She's always enjoyed helping others and making a difference in people's life. Even when she was really poorly and in horrendous pain she would still look after others in hospital by chatting to them, making them laugh, calling for assistance if they needed the nurses. She is a qualified hairdresser and even went back to work around her treatment to try and help fund her treatment.

I'm really proud of the family, how we've supported Megan and pushed for treatment. We never gave up on her. As a family, we've been through so much but we're stronger than ever.

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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