Jos’s determination to defy terminal diagnosis and help other people with breast cancer through song
Jos was diagnosed with secondary breast cancer in her early 40s and was given only a couple of years to live. Here she tells her story of defiance and how writing a song has inspired her breast cancer journey and will help other people like her.
I’m 45, which I’m proud to say. I know a lot of people don’t want to admit their age, but I am proud to be 45 because I was told a couple of years ago that I wouldn’t be here today. So that’s a really good thing that I am actually 45.
During the first Covid-19 lockdown I had been experiencing a pricking pain in my breast and when I googled it a lot of the websites said that it was just a hormonal thing. Then I started getting a burning sensation in my breast. I thought this definitely wasn’t right. I also started to notice dimpling in the skin, and my nipple started to invert. I phoned the GP and I knew that if I said enough trigger words she would put me straight through for a referral to the hospital. And that’s exactly what happened.
I was seen fairly quickly at the hospital. I didn’t think it was cancer. I thought they were going to say we can’t see anything. I thought I’d be gone in an hour and a half, two hours, but as the afternoon progressed I started thinking maybe this isn’t what I thought it was.
By 6:00 o’clock they brought me into a room and said that they were 99% sure that I did have breast cancer. They said that it was stage 2B and that they felt it was treatable. They were going to put together a plan for me, I would come back in a week and we would talk through what that would look like.
Staying positive during chemotherapy.
They were recommending chemotherapy and a full mastectomy on one side, then radiotherapy and more chemotherapy after that. So around a year’s worth of treatment in total. We did extra scans to see if there was anything else in my body and they couldn’t see anything. So I started the chemo in July 2020.
In October I came home from work one day and I was feeling really breathless. I laid on the sofa and watched a movie. By the end, I was feeling like I’d been running, even though I’d been lying still doing absolutely nothing. I’d also for about a day had this pain in my spine, and nothing was making a difference.
They sent me for a CT scan which showed two tumours in my spine. They needed to do more scans to check the extent of these, but they felt that the tumour had spread to my spine and that it had probably been there from the start. The chemo had been damaging the tumour in my spine and that’s why it had suddenly showed up and why I was getting this pain.
I had to wait about another week, had some more scans, and then I had to go back for them to tell me the cancer had spread. So we’re now looking at it being stage four – it’s treatable, but it’s not curable. I remember asking the consultant, how long have I got left. He said one to two years.
I said no, I see your one to two years and I raise you at least 10. I said I am not going anywhere. 10 years felt like a really long time in that moment and felt like defying what they were saying.
After this, I went onto treatment which were originally two infusions. But these two infusions were then put into one injection because they didn’t want to bring patients who were immunocompromised into the hospital because of COVID.
I now do a three-weekly injection at home called Phesgo, which is a monoclonal antibody and is designed to block the cancer and prevent it from spreading.
All I do is pop into the hospital to pick up the injections. I go in once a month to have a blood test. I have phone appointments apart from twice a year when I go in to look at my scan results. Apart from that, I don’t feel like I’m a patient anymore. I feel like I’ve got my life back.
At the doors of Abbey Road Studios.
I’ve always been into music and singing. I wrote my first song, ‘Dying to Live’ as a way of processing the change of my secondary breast cancer diagnosis and my refusal to accept it, I wrote it as my therapy. I wrote it sat on my dining room floor next to my keyboard one night and I started thinking, maybe this song is bigger than me, maybe this might help some other people who have been in a similar position.
I found an event at Abbey Road Studios, which was celebrating their 90th anniversary, and I got a place on a session with songwriters on the panel that I wanted. Part way through the session they said they wanted to do some questions now. I got the mic and I explained: “This is what is happening with my health, I’ve written this song, what do I do with it?”
They gave me some really great advice and at the end of the session, all these different people kept coming up to me saying they wanted to help. One girl in particular, Mariela Silva, asked me to send my song to her boyfriend, Liam Narrie. I ended up going for dinner with them that night. A few days later I sent Liam the roughest demo in the world, and he came back straight away and said, love it. Can you come to London at some point to record?
On the morning of the recording he sent Mariela to get me and we got in a taxi and she said to the driver, don’t tell her where we’re going. Then we arrived and I found myself standing in front of Abbey Road! Liam was there. He had previously said “I’ll get you to play a bit of piano and sing and I’ll do a bit of guitar.” I walked into the studio and he had an entire band, which was just incredible. We recorded the song and I released ‘Dying to Live’ in July 2022.
I then signed up for something called The Songwriting Academy, and they offered a year-long mentorship. A lot of it was online, so you could have mentors from all around the world who were singers, songwriters, producers, engineers, all sorts of experts. I got to be mentored by someone called Shelly Poole, who used to be in the band Alisha’s Attic. She helped me have the confidence to finish what has become ‘The One Thing I Would Do’ that I’ve just released in January 2024.
In the recording studio.
I’ve had lots of other mentors as well. I also got to go on some songwriting retreats in Malaga in Spain. I’ve written with other people and I’ve written some songs by myself. The first two songs I wrote purely by myself, but I think I’m on 43 songs since then, co-writing with other people. There’s also one guy that I’m writing with one day a week and we’re trying to get our music into television, adverts and movies.
From one little thing, me sitting on my dining room floor, writing something to help me process my diagnosis, it’s just snowballed into this huge, amazing thing that I just absolutely love doing. I hope that some of what I’m doing will help other people. The majority of the other songs are not about my health and not about cancer. They generally have a very positive outlook because that’s who I am. I have re-found this passion for writing music that I wouldn’t have had if I had not been diagnosed.
If you Google the stats about my diagnosis, they are not cheery. But I am not a statistic. I am me and my body is its own body. It’s not someone else’s DNA makeup. Even if we all have the same cancer, we’re all different. So I’m not looking at any of that. I’m looking at how do I live really well and how do I get the most out of my life and help people and enjoy it while I’m here.
You can listen to and purchase Jos’s two singles below. Please also consider donating to support Jos and her music – all funds donated will go to Against Breast Cancer – and taking part in our ‘The One Thing I Would Do’ campaign. You can also see an interview recorded with Jos below.
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