Beating bowel cancer together

Angela Stoddart, Pembrokeshire

I was initially diagnosed with stage 4 bowel cancer in August 2012, aged 37.

It was a shock. At 37 I felt invincible but looking back, there were signs. In 2008 I split from my husband and partner of 15 years. We had a two year child at the time. I started a new relationship which had a challenging beginning and it took its toll on me. I was frequently upset and tired and I remember thinking to myself I couldn't continue in this unhappy state, I was going make myself ill.

Then in December 2011 I found out I was pregnant. I always wanted my son to have a little brother or sister so this felt like something really positive and the three of us became very excited. Unfortunately, at the 20 week scan, we were told that the baby was showing signs of severe spina bifida. We were told that the child would be severely disabled with a limited quality of life. We made the heartbreaking decision to terminate the pregnancy, which involved giving birth to her at 24 weeks pregnant.

This was a difficult time. I was at a low point, feeling tired and lethargic and I had also for some time been experience blood in my stools, when I mentioned it to my midwife prior to the termination she said that it was most likely pregnancy induced hemorrhoids which made sense to me. In August 2012 the symptoms hadn't cleared up so I went to my GP. He performed a rectal examination and referred me to the hospital for further investigation. I had a strong suspicion that this was not good and I was right. I was immediately referred to the endoscopy unit and a flexible sigmoidoscopy confirmed that I had a cancerous tumor in my lower colon.

I subsequently found out that the tumor was invading my cervix wall and that because of my age and that fact that I was again pregnant I would be referred to a team of pelvic specialists who were based with a neighboring health board. When I met with the team in Swansea, I was told that I needed to have surgery and that because it was a locally advanced tumor it needed to be as soon as possible. I was told that it would be unwise to proceed with the pregnancy and that as part of the operation, I would need to have a full hysterectomy and reconstruction of my vaginal wall and that I would have to have a permanent colostomy. I was also told at that point that I would not be able to have children in the future. This was a lot to take in but for me it was a no brainer, my priority was my son, who was seven by this point and I needed to have the operation, remove the cancer and get well.

I started swimming every day to prepare myself for the operation. I talked to my nearest friends and colleagues about what was happening. There was a lot to get my head around but people started to come out of the woodwork to share their experiences with me – one person in particular had been suffering with bowel issues since the age of 18 and an ileostomy bag was a massive relief for him, and helped him to live life normally. This was a great help because I could see that he had a full life, and he was just getting on with it and that's what I wanted for me and my son. On the day of the operation, I was told that depending on what they found during the operation it was possible that I would have to have a bladder bag as well as a colostomy!! By this time, it was too late to think about that on top of everything else. I just wanted the operation over and done with and the cancer removed from my body.

The operation went very successfully and was completed in half the time that they had hoped. They managed to give me a reversible ileostomy instead of a permanent colostomy; they preserved one ovary and I did not require plastic surgery on my vagina. They managed to remove the tumor with clear margins. They also said that everything inside me looked good to the naked eye. I was delighted on so many levels and was looking forward to going home and starting the healing process. Six weeks later I had a follow up with my consultant who told me that the cancer was subsequently found in over half of the lymph nodes that were removed and that for this reason I would need to undergo six months of chemotherapy. I took time off work to go through the treatment and started chemo. My son was seven at the time and it was difficult to tell him. I didn't want to hide it from him, but I also wanted to protect him – it's a difficult balance to get right.

Being home from work, having health visitors visit on a weekly basis and going through the cycles of chemo whilst also recovering from major surgery was difficult and my partner was finding it particularly difficult – dealing with the loss of two unborn children and also now the ability to have children all together. It led to further relationship difficulties for which we sought support from the Macmillan couples counselling service.

Medically I was getting better. I healed well after my surgery, completed chemotherapy, scans were showing that there was no evidence of disease and then in August 2013 I had my ileostomy reversed. I went back to work and returned to a level of normality. However, in the immediate 18 months following this period, I worried about every ache and pain. I frequently sought advice from my GP. It was evident that I was anxious. The best advice that my GP could give me was that it was normal to be feeling the way that I did and that my son and I should get on our bikes, get outdoors as much as possible and have fun! And so that's was I did. I worked hard and I played a lot with my son, football, bike rides, swimming in the sea, whatever he wanted to do. Meanwhile my partner and I were drifting apart. Attempts and exploring the option of surrogacy reached a dead end. The wounds for him were too deep, whereas I saw the world differently, I saw life now as a gift that I was determined to make the most of despite the heartbreak and trauma that got me to this point.

In early 2016, I left my partner and as much as the relationship had become very difficult, the breakup was difficult too. It took two and a half years to disentangle our lives and despite that fact that Rohan and I were happily living on our own, there were very low periods of loneliness and high levels of stress as we went through the lengthy process of splitting up. Meanwhile, I was doing really well at work and received a promotion to a post that I absolutely loved. I bought a house that we love and feel totally at home in and life was feeling really good. My checkups were happening annually, and it was getting close to five years cancer free.

I met someone and we were having a nice time together. His wife had died two years previously of bowel cancer. He had two children and they were a similar age to my son. I was happy and it felt nice to be with someone where we both had an understanding of what the other had been through. Shortly after meeting him, I started to get some lower back pain. I thought it may have been a running injury as I was training for a half marathon, but it was persistent. I also had a couple of UTIs within a short space of one another. My five-year scan was coming up and I had that niggling feeling in the back of my mind again. Immediately after the scan I was called in. The cancer had come back in the pelvic area and there was a tumor pressing on my right ureter which resulted in an inability for my kidney to drain properly. The images were also showing that the cancer had spread to both of my lungs. Systematic treatment required (chemotherapy) and a stent required in my ureter to help the kidney to drain. I was in total shock. 12 months earlier I had been told by my consultant that I had the all clear. My life was just starting to get back on track. I had just taken on a mortgage on my own. I was devastated, however, my view was that I'd fought this once. As impossible as it seemed I would fight it again.

The stent procedure failed so I had to have my kidney drained externally via a bag. I had four sessions of chemotherapy and felt better, no lower back pain. I really felt like it was working and then I went in for the fifth session to be told I wasn't to have any more and that my oncologist would explain further to me the following week. I was absolutely gutted. I felt so well, how could it be that it wasn't working. My oncologist confirmed the same, I wasn't responding well and that overall, there had been disease progression. They were going to try another drug. I was in bits. I needed to have a different conversation with my son.

Out of the blue one evening the nurse in charge of the oncology unit turned up at my door. She told me that there had been a big mistake and that the radiologist had compared the wrong scans and that I had actually had a very good response to the treatment! What a rollercoaster. Again, another thing that I couldn't get my head around. I was delighted but I was also so appalled at what had happened to me that I complained and in the process of uncovering exactly what had happened there was a realisation that my four year scan had been misreported and that there had in fact been evidence of recurrent disease in 2017 but it had been missed. My cancer recurrence was only spotted a year later after it had had all that time to progress and to cause irreparable damage to my right kidney.

A PET scan in January 2019 revealed that I had had a complete response to chemotherapy which was a wonderful outcome. I then had radiotherapy in my pelvic area for five weeks. I worked throughout this whole process, had two fantastic skiing trips. I've been getting on with my life – it doesn't just stop because you have cancer. You've still got work to go to, look after your family, pay a mortgage. I could never envisage myself dying from cancer. Instead, I have focused on my health and wellbeing. I have made sure to eat well and I've got a personal trainer, I walk a lot, do strength building exercises with my personal trainer – I keep working hard to feel as strong as possible (mentally as well as physically).

Life has been incredible since January 2019. I was on my own whilst on treatment throughout 2018/19 and that was difficult at times. Early in my treatment I realised that it was all too much for the man I was seeing, it brought back too many difficult memories and we gradually stopped seeing one another altogether. Family and friends were incredibly supportive but it's not the same as having the support from someone with whom you share your life. My son had become a teenager now, and so much more independent. We decided to get a dog, a beautiful little working cocker spaniel called Jet. She has become such an important and healing part of my life and my excuse to get lost in nature for walks as much as possible.

Then, out of the blue I met with a friend from a previous life. We went on a few dates. I was very open about everything I've been through and my illness after a couple of weeks and it didn't affect how he saw me or how he felt about me. In May 2019 he asked me to marry him and on the 24 August we got married. A whirlwind of a romance but two years later here we are. We've been through three COVID-19 lockdowns; cancer rollercoaster ups and downs. Yet we're in it together and we're happy and active and well and always looking for adventure. When I was diagnosed with the cancer recurrence, I went from feeling non-viable as a potential partner and now I'm at the centre of someone else's world. I never thought that would happen to me again. I'm incredibly lucky and grateful to have him, Rohan, Jet and Andrew's dog Toby, as well as our extended family and friendships in my life.

In December 2019, as I was about to commence with more chemotherapy, I started to think about my options re work. I felt as though I was probably pushing myself too hard to juggle everything, so I looked into retirement on ill health grounds. I had worked in local Government for 20 years. Work was incredibly supportive and I formally retired in June last year. I've always kept very busy and had the mentality that if I was busy, I was moving forward but actually I needed to slow down. It's odd saying out loud that I'm retired, but I've not looked back. My days are full, but they are full with things that I WANT to do and I don't feel any pressure to do any particular thing to deadline.

After having a treatment free summer in 2020, my CT scan showed that there had been disease progression and that I had developed a level of immunity to the drugs I was on. It was time for a change and that meant losing my hair. There was also a chemo related issue with my liver that required consultation with the liver specialist prior to commencement of chemo. This is always the worst part. Waiting for the specialists to talk with each other and finally get your date for treatment. It's so difficult to navigate your way in the NHS – my main oncologist is in Cardiff; the treatment needs to be signed off and delivered locally by a different team and I also see many different professionals. Communication between them is often slow and I feel like I am the coordinator which can be quite stressful. I would say to anyone that is going through NHS treatment to be the driving force in your own care and treatment pathway. You're the expert in your own body and the only person that has a vested interest, but also make sure you keep on top of your appointments.

Instead of sitting around and waiting for my treatment to start, I decided one day that I wanted to walk the Pembrokeshire Coast path – 186 miles in 12 days. Four days later, having set up a fundraising page for Bowel Cancer UK, we set off from Amroth with all our kit and two dogs for 12 days hiking and camping. On day one I found out that my chemo start date was the 9 October, so we had 12 days to complete our trek and I would be starting the following day. It was an incredible trip. I was feeling very anxious and I was starting to ache, but actually as soon as we spent a few days in the outdoors, I felt like a totally new woman. All that anxiety and niggles just went away. On top of that we managed to raise over £5,000 for charity. We had a fantastic following on social media. I think that they were quite impressed that our sunny start turned into a battle with Storm Alex!! It was the first time that I had shared my story with people through the fundraising page as I am quite a private person, but I was overwhelmed by the amount of supportive and love that I had received.

We completed the walk, averaging 18 miles per day and the next day I started chemo. I'm five sessions in and at the end of December I had a CT scan to check the treatment is being effective. Whilst writing this I have been waiting for a scheduled telephone call from my oncologist. The process of writing this has helped with the anxiety of waiting and has actually been quite cathartic. I am glad to draw to the end of this story on a positive note. My oncologist told me that so far, I have had a 'brilliant' response to treatment and that there is nothing visible on my lungs. The forward plan is to continue with the next three sessions and then have a well-earned break from March onwards. I am delighted and cautiously celebrated with a glass of red wine last night.

I have had so many strategies over the last eight and a half years: eliminating sugar, juicing every day, various supplements, keto diet, meditation, regular exercise, keeping busy through work, letting go of negative relationships, journaling, chill swimming, wim-hof breathing, generally being out in nature, plant based medicine and more. Some of these I still use in different combinations but above all else my key strategies, which you can't buy, are acceptance, love, gratitude for every fit and healthy day, eliminating stress, listening to my body and resting when it tells me I need it, and above all hope. Hope that there will be new treatments, hope that I remain fit, healthy and well, hope that I can defy the odds.

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.
 

Back to younger people with bowel cancer

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Angela Stoddart and family out on their bikes cycling

Angela Stoddart after losing her hair but still smiling

Angela Stoddart and her partner walking the Pembrokeshire coastal path to raise funds for charity Bowel Cancer UK

Angela Stoddart on her her do surrounded by friends

Angela Stoddart smiling on her wedding day

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