Sophie Hughes, Brighton

Soophie shared their story with us in 2021. Sadly Sophie passed away in March 2021. The following article was originally published in January 2021.

I was diagnosed with stage 3 bowel cancer in July 2020, which progressed to incurable metastatic bowel cancer by November 2020.

We went on an amazing family holiday to Thailand over Christmas in 2019. In the new year, I got back to a busy life in London working, going to the gym, seeing friends and dating. Everything was normal and I didn't think 2020 would be any different to other years. However, whilst I was staying with friend for a weekend in March, my mum rang to say that my dad had had a hemorrhage in the night and he'd died. It was so sudden and completely unexpected. Me, my sister and her family rushed to Brighton to be with mum so we could grieve together. A few weeks later, the country was in lockdown.

Towards the end of March, I started getting lower abdominal pain, stomach cramps and constipation. I'm fortunate to have private healthcare insurance and had a telephone consultation with one of their GPs. They thought it was irritable bowel syndrome related to stress and I should try changing my diet to see if my symptoms eased. This seemed to do the trick for a few months.

However, around the end of May, my symptoms came back but this time it was much more intense. I was in a lot of pain, using pain killers and constipation relief sachets every day, and my lifestyle was starting to be affected. I got in touch with the same GP to see if there was anything else they could offer. I was also speaking to my GP in London, where I lived. They were still saying IBS, manage the symptoms with diet. Conversely the low fodmap diet was irritating my bowel even more around the tumour.

At the beginning of July, I was asked to go back to work after being on furlough since April and worked from my mum's house for three days. That Sunday night, there was blood in the toilet bowl and my poo when I went to the loo, and at 11.30pm after advice from 111 my mum drove me to hospital.

I collapsed at A&E and they admitted me straightaway. A bowel surgeon (Heena Patel) was doing the rounds on the ward and suggested I have a colonoscopy. They didn't think I had bowel cancer due to my age but they wanted to rule it out. That was the first time cancer had been mentioned. Fortunately, my private healthcare covered this procedure as the NHS had stopped all colonoscopies due to Covid at that point. I was ringing up the surgeon's secretary every day to get the colonoscopy referral organised.

Whilst I was waiting for the colonoscopy the pain changed from lower abdominal pain to upper abdominal pain. I told my surgeon this who was worried and organised for me to have a CT scan immediately. I had to wait a few days for the results, but when the surgeon phoned me I knew straight away that it was bad news. She said it was very likely to be bowel cancer because of where the tumour was (at the ileum in my small bowel) and the size of it. She organised surgery for a few weeks later.

It seemed like one of the worst outcomes. The tumour was large and most likely cancerous. I was in shock, but the tumour was operable and I was having the surgery soon. They were going to get the tumour out of me so I tried to focus on that, instead of being diagnosed with bowel cancer. I thought this surgery is going to save my life and it's been caught in time.

The operation was successful, they removed the 8.5 cm by 5.5 cm tumour, 10 lymph nodes and my appendix. Everything the surgeon could see that was potentially cancerous was removed. I was aware a stoma was a possibility and when I came round from surgery, she told me that she had to form a stoma but it was temporary to allow my bowel to heal. Before the surgery the stoma nurse explained where it would go. It was really hard to get my head round it, I don't know anyone with a stoma. However, once I did a bit of research, I found loads of people living a normal life with one. It was really positive to see, so that made me feel a bit better. It also helped that it was going to be temporary.

I was in hospital for 10 days recovering in mid-August, but because I was in a private hospital my mum was able to be with me. I was really grateful for that and I don't know how I would have coped with recovery without her being there, or since. My mum, sister and family, boyfriend and friends have constantly supported me through this whole process and I am beyond grateful for all they've done.

In May, I had met my now-boyfriend online, and he knew I was having symptoms. We spoke and video chatted every day but I hadn't actually met him by July due to Covid. I remember vividly, ringing him up to say I have cancer and was having a major operation, and asking if he still wanted to be with me.

He was so amazing, very compassionate and really understanding from then on but he says it was the easiest decision he's ever made. We met in person for the first time, four weeks after my operation in my mum's garden. We've gone from strength to strength since then – he's definitely my highlight of the year and we are very much in love.

During August and September, I was recovering really well from the major operation. Doing yoga and going swimming in the sea and managing my stoma well five weeks on from surgery which I didn't think possible. I was starting to feel stronger, making plans for the future and thinking the worst is over.

I knew that I needed to have chemotherapy but before that I wanted to make sure that my eggs were frozen. I don't have kids at the moment but I wanted that option for the future. My surgeon was quite instrumental taking that forward with the NHS. Six weeks post-surgery I was having hormonal injections and just before the egg collection I had an ultrasound where they found a mass in my left ovary.

My oncologist said it was unlikely to be cancer as a previous CT scan didn't reveal anything and such a large mass wouldn't have grown that quickly. Eggs were removed from the right ovary only to be safe. After the procedure you're meant to bounce back quite quickly but I was in an extreme amount of pain in my back and kidneys. I was so poorly that I couldn't start chemotherapy. Something wasn't right.

I had another ultrasound and it was cancer in my left ovary. In October, I was referred to the Hampshire Clinic at Basingstoke as I had Cuckenburg syndrome where the bowel cancer had spread to my ovaries and there was specialist surgeon based there. I got even sicker and went into full bowel obstruction. My Macmillan nurse managed to get me admitted to the Hampshire Clinic despite the strict lockdown and a few days later on the 17th October, I was having surgery and HIPEC chemotherapy under specialist colorectal surgeon (Mr Faeez Mohamed). There were tumours all along my small bowel, disease throughout my peritoneal cavity, both my ovaries and my uterus. During the surgery he removed what he could and flushed my body with chemotherapy. The side effects were awful, I was vomiting all the time and was very nauseous.

I just couldn't believe that I've now had two major operations within three months. The cancer was growing at an incredible speed. I was in intensive care for a few days recovering when the surgeon came to see me. They weren't able to remove all the tumours in my small bowel. It meant that I needed more chemotherapy.

The recovery from the HIPEC and surgery was really hard. I was so worn out from two major operations and my emotional capacity was exhausted. My mum being by my side and the nurses at the Hampshire clinic got me through some very dark nights. I had a turning point after 10 days of vomiting and being fed by tube, and instead of going home after three weeks, I was able to go home after two weeks and two days. I was desperate to be back at mum's house and felt my strength improving.

I really struggled psychologically at home. I just didn't know when this was ever going to end and the prognosis was not clear. Me and my mum met with my Macmillan nurse, and she explained that I was going to have to have treatment for life. She moved up the appointment with my oncologist and he explained that my cancer is very aggressive and fast growing because I have the BRAF mutation. It causes the cancer to spread rapidly. Prognosis was one to two years.

I went really numb. I just didn't have the capacity to think about it. People say that you'll get through it but when someone shortens your life by so much, all your coping mechanisms don't fit. I went through a period of trying to make a sense of it, and I wanted to know what it would look like towards the end. I was adamant that I wanted to make the most of the time that I had with the people I love. The oncologist wanted me to have treatment that meant I could still have a good quality of life. It seemed surreal in that first appointment to discuss travelling but that is one of my great joys and I wanted to do more of it – Covid allowing.

I was trying to be as positive, and yet realistic, as I can. Telling the people you love is one of the hardest things but they want to support you and share some of the burden if they can. I've found people worry about you less when they can see how you are really feeling and talking honestly although painful is invaluable.

Whilst I am focusing on enjoying my life I keep hope that I may be able to access a new clinical trial that I may benefit from. I have up and down days, but I find that when I'm physically well, I'm mentally stronger. The more times you feel awful and then feel better after medication changes or time you realise it's possible and your resilience improves.

I found out that Deborah James (aka BowelBabe) has the same BRAF mutation and I find her really inspiring. She's able to lead a relatively normal life and she was diagnosed four years ago and given less than a year. I look at her and think that perhaps I can defy the odds too. I've found social media useful in finding out about day to day life on cancer treatments from other people experiencing it.

I had PET and CT scans in November and they found more small tumours in a lymph node at the front of my heart, between my uterus and my right kidney and on one of my wound scars. I needed to have chemotherapy straight away and started five weeks after surgery rather than the 6 recommended.

I'm now on my second cycle of Oxaliplatin and Irinotecan, Flurouracil and Bevacizumab, out of six cycles. The first round I had severe vomiting, so much so that I was admitted to hospital and had a blood transfusion. Feeling physically ill really makes me face mortality so it was a low point. For the second cycle, my oncologist and chemo team reduced the regime and gave me a different set of anti-sickness tablets. This time round is a lot better, I'm not vomiting but I am still nauseous and I do have fatigue. The first night I had the second chemo, I was admitted to hospital as a precaution but I was fine – I didn't need to be there.

I'll be able to have the BEACON trial drugs, I would've had access to it anyway as I'm a private patient but it makes it a lot easier now that it's been approved for the NHS too.

I'm fortunate to trust my medical team and to have had high quality care throughout my cancer. I'm aware of different treatments and we discuss them openly, I'm very involved in my own care.

Cancer, especially something which has developed as quickly as mine, can feel like you are swept along by a tide but know yourself and your body and advocate for yourself. The systems aren't perfect and you have to fight sometimes but there are so many wonderful people trying to keep us alive and give us good quality of life. That certainly gives me hope for the future whatever it holds for me.

This year has taught me the strength I and my family have. I have a rock solid support network and always say I'm from a family of warrior women.

I would say to other people that you have more strength than you know and that even through the most difficult times, if you focus on what you value most and you have that, you can find joy.  

I've just been away to a cottage and I'm planning to go to New York and Venice. It feels like these things are possible. I walk on the beach as much as I can and every time I laugh I make sure to savour it.