Beating bowel cancer together

Victoria Hall, London

Victoria shared their story with us in 2022. Sadly Victoria passed away in September 2022. The following article was originally published in May 2022.

I was diagnosed with stage 3 bowel cancer in August 2021, which then became stage 4 in March 2022, at the age of 32.

My name is Victoria. I am 32 years old and I have stage 4 bowel cancer. If you met me, you would have no idea that I have had half my colon removed, nine months of chemotherapy, and that I am now technically in palliative care. Instead, you would see a young woman who looks happy and healthy; as if she had her whole life ahead of her. Well you'd be right – because I do; my life is just a bit shorter and more challenging than it would have been otherwise. For now, I am happy and healthy enough, because of the treatment I receive (thanks to Bowel Cancer UK and the Royal Marsden) and the support I have (thanks to my ever-loving mum and sisters, my rock of a boyfriend, my crazy but perfect friends, and my wonderful colleagues). Having said this, I will die young, and I dream of a time that no-one gets killed early because of this curse. The more we raise awareness and funds, the closer we will get. Until we get to that point, this is my story which I hope will help newly diagnosed patients, their friends and family, as well as the bowel cancer community. We are, after all, in this together.

On Sunday 8 August 2021 I took myself to A&E because I had severe abdominal cramps. They had been occurring intermittently for a couple of weeks. I had no other symptoms (as far as I was aware). In hindsight, I was a little bit on the skinny side and feeling tired a lot, which I put down to exercise and stress. I was also going to the loo a bit more than usual, which I put down to too much coffee and a high pressure job. I didn't think the cramps were anything sinister – period pains perhaps, or at worse, a stomach ulcer. But then I got a fever, and the pains were getting really sharp and happening every few minutes. I still wanted to ignore it, but fortunately I was encouraged to get it checked out.

The A&E doctor put me on antibiotics for a urinary tract infection and told to come back the next day. The next doctor said the UTI diagnosis was wrong, said it was probably gynaecological, and sent me to the sexually transmitted infection clinic next door. I knew it was neither, and I left the hospital frustrated that I was back at square one. Little did I know that this was just the start! Next, a gynaecologist diagnosed me with Pelvic Inflammatory Disease for which I was given different antibiotics and sent home again. Then the pains worsened, as did the fever, and by this stage I was struggling to eat. On my third visit to A&E they decided to keep me in as the nausea had begun as well. I was tossed between the gynaecologists and the surgeons. I remember in the ward overhearing someone saying 'I don't care whose problem she is, but she's not my problem.' They wanted to get rid of me because they needed the bed. I felt so scared, alone, and really, really sick. So I clambered out and begged them to help. None of them knew what was wrong, until an ultrasound on my uterus revealed an unusual amount of bowel gas. By the Wednesday I could not swallow even my own saliva without being sick. I had a CT scan on my abdomen that evening.

A doctor came into the ward in the middle of the night. She said that, for now, I needed to insert a tube up my nose which went down to my tummy to stop me from being sick and collect all the bile I was producing. She said that in the morning the surgeon would tell me what was causing the blockage and that I would have an operation. Cancer didn't even cross my mind. When I woke up, I was asked to call my family and ask them to come into the hospital.

'I am treating this as a cancer operation' was the first time we heard the C word, but I still didn't believe it to be true. At this point, the cause didn't matter, we just needed to get rid! I was told I might have a stoma, and I was told that it was probably too blocked for keyhole surgery. But after five and half hours of being under, I came out and gave my surgeon a high five. Keyhole, and no stoma, what a win! From this point onwards it has been hurdle after hurdle, and I'm sure I have many more to come.

My immediate worry when I knew I was going to have chemotherapy was my fertility. I had to get on with egg freezing straight away, which was difficult because I was still recovering from surgery and then the overly stimulated ovaries led to swelling and constipation (so severe that I ended up in hospital). But I managed to get fourteen happy healthy eggs out for the bank which was a great relief at the time. Three months (four three-weekly cycles) of CAPOX chemotherapy followed. It wasn't as bad as I thought it would be, and I was happy to keep my hair. Side effects included fatigue, sickness, diarrhoea, and cold-induced neuropathy (tingling) in my hands and sometimes my throat. Every morning I woke up as if I had a stonking great hangover only to realise there was no big night out which caused it!

Joining Bowel Cancer UK's Chat Together group of other stage 3 patients helped me hugely. It was somewhere to discuss both the physical and emotional side effects of chemotherapy. When you get cancer, no matter how much love and support you have from your friends and family, you feel really alone. With initiatives like Chat Together you needn't, because there's an amazing community out there, and having a sense of community is everything when you feel alone. I already felt really inspired by other sufferers and volunteers. Meanwhile, since I couldn't run the half marathon I had been training for, one of my best friends ran it for me and we managed to raise over £2,000 for Bowel Cancer UK, and that felt really cool.

In December (when I thought I was coming to the end of chemotherapy), a more detailed analysis of my biopsy revealed that my bowel cancer was not genetic, and that I had the BRAF mutation; a very aggressive kind. My oncologist said we needed the 'kitchen sink' approach to this cancer, which meant another three months of chemotherapy. Even though it was only going to make a marginal difference, and came with high risk of permanent neuropathy in my feet (being young and sporty, this has been hard), I had no choice. Because of BRAF, my oncologist wasn't hopeful that my cancer would stay away, but I still had hope and was determined to beat it.

I organised a Quizmas fundraiser at home with the help of Bowel Cancer UK. And while making mince pies straight after Oxaliplatin was a challenge, hosting my lovely friends and family who helped raise money for such a good cause made me feel alive again. During the following three months, I kept active, I made the most of my 'wellness weeks' between cycles, even managing to get to the mountains and a holiday to the Caribbean. I had to try and live life to the full at every opportunity, an attitude I still maintain.

Throughout the chemotherapy, the CEA markers each month appeared only to be going in one direction: upwards. We decided to bring my scan forward before my final cycle because I knew the steady rise of CEA from one to nine couldn't be good news. Being in limbo about whether it had spread or not was probably the worst part of my journey so far. I was so nervous, knowing that this scan was the moment which determined whether I could cling onto the hope of a return to normality, or whether I would have to live with cancer until the end.

On 16 March 2022, a date I will never forget, the PET and CT scan revealed metastases in my peritoneum. I didn't even know what the peritoneum was. The only words I heard were 'it's not good news. I'm sorry Victoria, your cancer has spread. It's not curable.' What? How can that be? 'From now on, it's not about getting rid of the cancer, it's about managing it.' This totally turned my life upside down – all my plans for having children, starting an awesome new job, all the things we strive for when we assume a long life – scuppered, just like that.

But we came up with a good plan for the next steps. And that's what we have to do now – just take one step at a time. I'm lucky enough to have been put on this great new drug (Cetuximab and Encorafanib) which is only recently NHS-approved. It is less intrusive than chemotherapy or surgery and should keep the tumours at bay for a bit. Who knows what's next, but we have options, and I'm ready for all of them.

So now I have been trying to just live for the moment and be grateful for every good day I have. And there are lots! I took part in Step up for 30 which kept me active and smiling, and importantly, raising money for bowel cancer! I'm getting a lot of value from awareness building and fundraising, but the thing that has kept me going the most is the support I get from my loved ones. Sometimes I think it's worse for them than it is for me. They have been through every scary appointment, and every tear. But importantly, we've still been able to laugh together. Whether it's the most perfect cup of tea brought to me in bed, being whisked off by my girlfriends for a spa weekend, or simply saying 'I know this is sh*t, and I'm so proud of you', they have kept me feeling warm and safe, so thank you team!

It may seem like a sad story, but this is not where the story ends. I am going to fill my story with lots of new and exciting chapters. I'm organising a big swim in the sea in the summer which has raised over £4,500 already https://www.justgiving.com/fundraising/thebigbathe. I am also planning a concert in London in the autumn (watch this space for details!). I can't wait to make a success of these and raise more money for the wonderful things Bowel Cancer UK are doing. I want to raise awareness so more people catch this early, and importantly, I want everyone to live well. So let's do this. Let's put two fingers up to cancer and rise above it with pride.

Sadly Victoria died in September 2022. Her friends and family are organising another Big Swim in West Wittering in Victoria's honour, after more than £68,000 was raised in 2022. The Big Bathe 2023 will take place on Sunday 10 September. Tickets are available here.

Access our support

Thanks supporter

Thanks for signing up for this great campaign. To complete the setup of your JustGiving page you need to first create an account for myemail@domain.tld, please enter a new password to use below. Alternatively if you already have an account and would like to use it just click here.

Thanks supporter

Thanks for signing up for this great campaign. To complete the setup of your JustGiving page you need to login to your myemail@domain.tld account, please enter the password for that account below. Alternatively if you have a different account you would like to use just click here.

Forgotten password

Hi supporter, do you want to send a password reminder?.

JustGiving Login

Hi supporter, please enter your JustGiving login details below and we'll handle the rest.