Ali Howell is a mother-of-two living with stage 4 bowel cancer. At the end of Bowel Cancer Awareness Month, she explains how her goal is to find the joy in the everyday – and how attending Big C’s walking football and support group has become the highlight of the week
Before Ali Howell was diagnosed with stage 4 bowel cancer, the mother-of-two led a busy life, working as a speech and language therapist four days a week and running four times a week. The 42-year-old who lives in Horstead with husband Tom and children Oli, 14, and Esmae, nine, says: ‘I used to run the training team and go out to schools and other settings and do training for teachers and parents.’ Then the Covid pandemic started and everything went online.
She was diagnosed in June 2021, ‘pretty much at the end of the second wave – two days after my 40th birthday.’ Looking back at what had led to the diagnosis, Ali says: ‘I was probably more tired and had lost a bit of weight but in Covid times everyone was stressed and tired. And I was doing a lot of running in lockdown – that’s what got me through – so I put the weight loss down to that. Then I had some blood in my stools one day and thought ‘that’s probably not normal – maybe I should get that checked.’
Ali went to see her GP and had the Faecal Immunochemical Test (FIT) which looks for blood in a stool sample. ‘That came back showing something’, says Ali, who found herself on the cancer pathway, although at that time she felt optimistic that cancer would be ruled out. ‘I was booked in for a colonoscopy, and I remember sitting in the car outside and saying, ‘I’m using up this appointment on the NHS and it’s just such a waste of time’. However, as she came out of that procedure she was told that they had found something. ‘Everyone else was directed to a room with tea and biscuits and I was left thinking ‘this is a bit weird – why is everyone else going that way?’ Ali was taken to another room where her husband Tom was waiting.
‘They then obviously referred me on for further tests from there. I had to have CT and MRI scans and then saw a consultant about three weeks later. I was told it was bowel cancer and it had spread to my liver. At that point I was told that they couldn’t operate treatment because of where the tumours were in my liver and so treatment wouldn’t be curative but would keep things at bay as much as possible.’
She recalls: ‘You feel in a bit of a dream at that point (a nightmare is actually a better word for it). You can’t process things. It’s an odd disconnect between your body and your head. I didn’t feel ill, but somebody was telling me that I’m quite seriously ill. That’s a strange one to get your head around.’
First-line chemotherapy treatment started in July 2021 and involved weekly visits to hospital. Ali continues: ‘I actually managed to get on a clinical trial at Addenbrooke’s for my second-line treatment which I’ve been on until just recently.’ This involved fortnightly trips.
Ali has returned to the Norfolk and Norwich University Hospital for treatment, but this time she is taking one of the drugs she was taking before in tablet form, which is offering some ‘respite’ from the hospital visits. ‘I pick tablets up every three weeks, take them for two weeks on and then have a week off. Hopefully there will be a little more normality in that. We’ll see.’
During the trial, Ali was on three drugs, ’one of which is known to be a strong chemo drug.’ Fatigue was a ‘massive’ side effect for Ali. ‘Chemo has completely changed my quality of life and what I’m able to do in a day, activity-wise,’ she says. ‘About nine months into treatment they reduced some of the drugs, so I started to feel more human.
‘I’d just lost all my energy and fitness. One of the biggest things for me was the impact on just being able to go for a walk or walk the kids to school – the things you take for granted. I’d walk round the block and go home to sleep. I then reached the point where I thought ‘I’ve got to try and somehow get some of that strength back’.
When Ali was first diagnosed and got treatment, Norfolk cancer charity Big C was closed because of Covid. When it reopened, Ali went along to one of the support centres and found out that various wellbeing activities were either being reintroduced or introduced for the first time. One of them was the Tackle Cancer walking football and support group which takes place at the Football Development Centre, Bowthorpe Park every Wednesday. ‘I thought, ‘I can’t do that…I can’t play football’,’ recalls Ali. But then she realised: ‘it was a way of having something regular that I could do and was also a chance to meet other people perhaps in the same situation.’
Ali needed to pluck up the courage to go to that first session. ‘I’d lost so much confidence, to be honest, having not done anything particularly active, and it’s always hard going into new groups anyway. I think it’s a lonely place to be when you’re going through cancer treatment and stuff. Walking into a space and not really knowing what was going to happen; who was going to be there; whether I was going to be able to do it; how vigorous the exercise was going to be…I can remember almost forcing myself to get in the car and just do it.’
Afterwards, she recalls: ‘I felt good. It’s such a lovely group. Everyone was very welcoming and friendly and there’s no expectations or sense that should be fit or be able to play football. There’s none of that. Everyone does what they can and you come away thinking ‘I did something that I hadn’t done for a long time’.’
A core group go every week. ‘It feels like a safe space. It’s funny because we don’t talk a lot about our diagnosis and treatment. We ask each other how we are doing and sometimes conversations come up, but there is an understanding that everybody is in this world they don’t want to be in but that doesn’t define us and that’s not what it’s all about. We have such a laugh.’ The people who attend are from all walks of life. ‘They might be people you’d never come across in life but actually it’s quite nice in a way.’
Ali went to the second ever session and soon roped her dad along. Her parents, Graham and Linda Rushby have had a holiday home in Mundesley since Oli was a baby and, after Ali was diagnosed, they regularly made the journey from their home in Essex to Norfolk. ‘Then they decided they wanted to be here permanently and bought a place in our village just round the corner, which is amazing,’ says Ali, ‘because they are around and help out with the kids when I’m not having a great day.’
It’s the highlight of the week because we get to meet people we didn’t know but do now. And from our point of view, watching her doing stuff, such as exercise and playing football and all the rest of it, is a good thing to see
Graham, Ali’s dad, on Tackle Cancer walking football and support group
Her parents have become regulars at Walking Football. Ali says: ‘I think it’s good for them as well – I hope it is – they certainly seem to enjoy it.’ Tom and Esmae have also been along to a couple of sessions. And Esmae recently completed a ‘whatever-the-weather’ walk, raising more than £550 for Big C. ‘We’ve got amazing, supportive people around us who have donated money – it’s been brilliant,’ says Ali.
What would she say to anyone in a similar position to her, thinking of trying Walking Football for the first time? ‘I would say “just do it”. There’s always a reason not to do stuff, but when you get a diagnosis and life changes you process a lot of things around what that means for the future and you realise that you get to do stuff. I don’t have to come here but I get to come here and that’s a choice. That has become my mantra. When I get up and think ‘I can’t walk Esmae to school’, I don’t take it for granted because actually there was a time I couldn’t do it. What a privilege it is to get to take my daughter to school…and what a privilege to have a group like this to come to and feel accepted and just enjoy hanging out together. The benefits are huge, physically but also mentally, and just getting out and doing something in the fresh air – whether that’s walking football or whatever group activity – is so important.’
Ali doesn’t know what the future holds for her – and doesn’t want to know. ‘When I was diagnosed, they said the prognosis was 18-24 months. That was the last time I asked that question because what difference does it make if I know or don’t know. It will be three years in June so I’m still going.’ At the moment, Ali is defying expectations. ‘Thankfully the treatment so far has worked. When this treatment stops there are a couple of other options, but realistically I’m not going to be here long term.’
Ali very much takes things one day at a time. ‘Today is today. I do worry about the future, of course I do – I’ve got children – but you have to ground yourself in the day and think ‘this is today, we get to do this today and we’ll worry about tomorrow when we get there’. Three years ago, if someone said to me ‘you’ll be here and you’ll be back walking and doing all these things’, I don’t know if I could’ve believed or understood it.
‘Very early on, to keep myself grounded, I started a blog called ‘Reasons to be thankful’, completely for myself, and it’s just carried on, so I started putting it out on Instagram like a journal: being accountable each day. I’m up to reason number 500 and something.
‘Some days it’s as simple as ‘on Sunday we went for a walk and saw some bluebells and took some photos and acknowledged that it was lovely’; on other days it’s a bit deeper and picking up some of the themes doing on in my head and getting it out there. Lots of people say they find it helpful and encouraging – and that’s a bonus.’
And the weekly walking football continues for Ali. ‘The people are amazing. Everyone has got their own individual things going on but somehow the connection is huge, and it makes a big difference.’
Tackle Cancer is a weekly walking football and support group for people affected by cancer. The sessions take place every Wednesday, from 11am to 1pm, at the Football Development Centre, Bowthorpe Park, NR5 9ED. The programme is led by FA qualified coaches and a Level 4 Cancer Rehabilitation Practitioner – and is suitable for anyone aged 18 years and over who has been affected by cancer in Norfolk and surrounding counties. To find out more information or register your interest, please call 0800 092 7640 or email support@big-c.co.uk. Visit big-c.co.uk/tackle-cancer. Also, visit @reasons_to_be.thankful on Instagram
Featured images, by Folk Features
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