Lasting memories of my mum include seeing her with a wig on, often laughing, joking, or giving me a hug. Then, all of a sudden, she was gone.
She hid her illness well until the end, so these are all good memories – although now I think back it is more obvious what was going on.
I was just 12 when my mum died of breast cancer in 2000. She’d been unwell for a few years but everyone tried to shield me from her illness. My dad, Stephen, then 42, took early retirement as a postman so he could look after my older brother, Richard, and me.
There’s no right or wrong way to tell kids but I do think it’s important to talk about cancer, especially as being young doesn’t mean you are immune to it yourself. Which I’ve learned the hard way.
In 2015, my mum’s sister, my aunt Judy, also passed away from breast cancer -and, after tests, it turned out that I had the BRCA2 mutation. The BRCA2 gene produces proteins that help repair damaged DNA, and a mutation greatly increases the carrier’s risk of developing breast cancer and other cancers such as ovarian.
I was 28 and, instantly, I decided to have a preventative double mastectomy – surgery to remove both my breasts and decrease my risk. There was no way I wanted to face what my mum and aunt had. And, although my dad’s a man of few words, he agreed it was a good idea.
We also found out that my cousin, Judy’s daughter also had the mutation. She too decided to get the double mastectomy.
I had two procedures in late 2016. First you have tissue expanders (temporary balloon-like devices used to stretch breast skin and chest wall muscles) so that breast implants can be swapped in once you’ve healed. Everything went fine, other than the skin around my breasts becoming infected. Cream didn’t clear it up so I was prescribed tablets.
However, there was no improvement to the infection three months on, and I felt permanently exhausted – abnormally so for someone in their late 20s.
I decided to start eating healthily and get fit. After work I’d hit the gym but noticed I was never hungry. It was weird, I’d usually be ravenous after a workout, but I had to make myself eat.
One doctor bluntly explained that if I didn’t improve there was ‘nothing more they could do for me’
My skin was still infected at this point so my GP sent me for blood tests to investigate. Results showed I had very high liver function levels and I was referred for an ultrasound.
I wasn’t expecting anything sinister, I just thought the tablets to clear my infection were affecting me but it showed a ‘large mass’ on my liver.
‘Not to worry’, I was told. It ‘wouldn’t be anything serious because I was too young’. I really wish doctors wouldn’t say these things. Giving false hope doesn’t do anyone any good.
I’d spent years worried I’d get breast cancer, I didn’t consider I might get it elsewhere.
A CT scan showed I had a 12cm by 8cm tumour. They weren’t sure if it was benign or cancerous, but they knew it needed to be removed.
A bit like my dad, I’m not one for getting emotional. As soon as I was told I just wanted to know the plan; to prepare and sort it out – I’m organised, I’m all about action.
After it was removed, along with 60% of my liver, they ran a biopsy and doctors had another shock to deliver: it was malignant and tests showed I actually had bowel cancer.
‘The next step is a colonoscopy to find the primary tumour’, the consultant explained.
But that ended up being delayed as I ended up suffering a collapsed lung – the doctors never could explain why – and was admitted for three weeks hospital.
During this time, my dad came in daily, bringing the crossword and some much-needed normality with him.
Thankfully, I was discharged two days before my 30th birthday, in November 2017, but with my planned trip to Mexico cancelled, and cancer treatment looming, I felt far from in a celebratory mood.
Within days I finally had the colonoscopy. Doctors couldn’t see my bowel as the tumour was so big, but they were confident I could have surgery to remove it.
It was getting close to Christmas so they had said the operation would likely be in January.
Keen to know the next steps, I went in for a consultation, where they dropped another bombshell. Further study of the scan showed spots in my lungs – I was now inoperable because there was no point, the cancer had spread.
The specialist nurse looked at me and, although I hadn’t asked what it meant long term, she said, ‘this will eventually get the better of you’.
Totally blindsided, I was speechless. Medical staff are great, very knowledgeable, but they sometimes don’t have the best bedside manner.
My dad was beside me during that appointment, he was very stoic, but we both just wanted to get out of there. Taking the paperwork on chemotherapy, we left. Over lunch with my brother and my cousin Becky that afternoon we all sat and, every so often, just sighed: ‘What a load of s**t’.
Acknowledging how crap it was was important.
I didn’t know how to feel. My mum and auntie both died from cancer, and I used to look at them and think it was amazing they were so positive.
Then suddenly I was in that position, and I knew I had to just crack on – there wasn’t any other option. You can’t give up.
I’m only 33. There’s still so much I want to do
So began a gruelling cycle of two different kinds of chemotherapy – first CAPOX, then FOLFIRI.
One of the drugs in CAPOX (Oxaliplatin) affects the nerves and I suffered quite badly with peripheral neuropathy, which makes your hands and feet feel numb, tingly and very sensitive to the cold. You can’t drink anything cold, or touch anything cold, for at least the first week of every treatment cycle.
As well as that, the treatment would knock me out for a good three to four days afterwards, so I’d spend a lot of time on the sofa, before gradually perking up.
With FOLFIRI, I was quite lucky and didn’t suffer with many side effects, just the standard fatigue, which was a little worse around treatment.
But, just before Christmas 2018, I had to stop chemo because it wasn’t working – the tumour had grown, causing bowel blockage, and I had to stay in hospital while an emergency stoma was fitted.
At this point, my potassium was very low and nothing was improving, I could barely move – and I’d put on five stone in water retention. I had literally ballooned.
In my head I was very determined to get better but the hospital staff seemed to think I was a goner. One doctor bluntly explained that if I didn’t improve there was ‘nothing more they could do for me’.
Kept in hospital over Christmas and New Year, I managed to walk again, with a frame. All the nurses were all gobsmacked when I pulled through and was discharged that January.
Within a month, eating protein-rich foods, I lost the water weight and returned to ‘normal’. In February 2019 I was able to start another chemotherapy (FOLFOX). This kept me stable for almost seven months, but then it stopped working.
Fortunately, I was then eligible to join a clinical trial in Manchester’s The Christie for targeted treatment. This worked – it held the lung tumours in place and even shrunk a couple. In short, it felt like a gift – it bought me extra time I didn’t think I’d get.
Only, then, a scan showed a new tumour on my liver, which meant I couldn’t stay on the trial. That was really hard because as far as I was concerned, the treatment was working.
In January 2020, I started taking Lonsurf – the last chemotherapy option available to me on the NHS.
This kept my tumours relatively stable but, just after starting my fifth cycle, I was accepted onto a new clinical trial, which combines two drugs: Ceralasertib (a new targeted drug) and Olaparib (an existing chemotherapy used mainly for ovarian/breast cancer, but that’s also effective on patients with the BRCA gene mutation).
The first few cycles worked well, but at the same time I’d started getting headaches, and so I had a CT scan that showed the cancer had spread to my brain.
Again, I tried not to think about my emotions. Of course I felt scared, but I kept focused on the action plan.
In November 2020, I had Gamma Knife radiosurgery to treat the four lesions in my brain, and then resumed my treatment on the trial. I was convinced that this was the end, as the tumours progressed. But things did stabilise.
Only, I’d been getting leg pain, and in May, 2021, I found out it had spread to my bones. I’ve recently had a hip replacement, which has helped me a lot. And I’ve had radiotherapy in the area, as a precaution.
The drug combination trial stopped, and I went back on Lonsurf chemo.I did two cycles of this, and had a scan, which unfortunately showed things were progressing again.
I worried I was out of options. But then, another clinical trial came up at The Christie, for a new targeted drug for the KRAS G12C mutation.
I have my first scan in two weeks, and will find out just before Christmas if it’s working. I have everything crossed.
I try to live with my cancer, but there always seems to be something new to deal with. It’s so important to support research, because each new treatment is a lifeline for someone like me.
I’m only 33. There’s still so much I want to do.
Now travel looks likely again, I’ve made a list of things. I don’t call it a bucket list, I call it the ‘f**k it’ list.
I want to go to Tokyo to see the cherry blossoms, to do a road trip in America, and to have a flying lesson in a Spitfire. I used to be scared of flying but, since my diagnosis, I got a big ‘stuff it’ attitude. Why be frightened?
This last year’s been hard, especially with Covid-19 to navigate, but I didn’t think I would still be here so I’m cherishing the time I’ve been given.
It’s important to realise that bowel cancer isn’t just an older person’s condition. And, if it’s caught early, it’s treatable.
When people talk about cancer they clam up as it’s just horrible but it’s so important to discuss symptoms.
It doesn’t have to be that you instantly feel depressed when cancer gets mentioned – it’s a fact of life and it is a threat we have to face head on.
I am sharing my story to raise awareness and also raise money for research – which means trials. They have without doubt given me more life to live.
Time is money but money is time – and ultimately, that’s everything.
The Institute of Cancer Research, London is working to improve access to clinical trials to give people like Kate more options. To find out more, visit: ICR.ac.uk/TrialAccess
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