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Battling through: exclusive interview with Amy Callaghan

Battling through: exclusive interview with Amy Callaghan

Just after 1.30pm, 10 June, Amy Callaghan rose to her feet in her own living room to ask a question in the House of Commons via Zoom.

Like us all, Amy was in lockdown and getting used to a new virtual way of doing parliamentary business from her big armchair in the front room of the home she shares with her partner, Sean McLaughlan.

The debate at Westminster centred on the Post Office Horizon scandal that had left Post Office sub-postmasters, up and down the country, wrongly convicted of fraud. Some sub-postmasters had been wrongly imprisoned, some had been divorced, others, unable to cope with the ensuing scandal, had taken their own lives. All were left broken and many destitute.

Amy first wished the Speaker a “Happy Birthday” before turning to the parliamentary Under-Secretary of State for Business, Energy and Industrial Strategy, Paul Scully, and demanded that he “stop stalling” and commit to a judge-led inquiry into the matter to help provide answers for those so sorely affected.

This was all about fighting injustice and it was a small glimpse of the steely determination and passion of a young politician who, just six months into the job, was finding her feet and determined to fight for those that had been maligned in a scandal not of their making.

She was assured, confident and committed to the cause. It was a taste of what was, hopefully, to come from the woman who, at just 27, had infamously beaten the leader of the Lib Dems, Jo Swinson, in the December 2019 general election, taking the seat of East Dunbartonshire back for the SNP.

But a few hours later, Amy was lying on her bathroom floor unable to move and with an excruciating headache. She had suffered a massive stroke causing paralysis down one side. Sean was out dropping off a birthday present for his mum at his parents’ home and so, alone and unable to stand, Amy desperately tried to reach her mobile phone which was in her pocket. Sean arrived home just after she had managed to call an ambulance.

As the first responders prepared to rush her to the Queen Elizabeth University Hospital (QEUH) in Glasgow, where she would undergo an emergency brain operation – the first of two during her four-month stay at the QEUH – Amy told them that she suspected what was wrong.

When she was 19 and a second-year student at Glasgow University studying politics, she was diagnosed with cancer and during that treatment was given an MRI scan which revealed that she had a congenital arteriovenous malformation (AVM) – a jumble of abnormal blood vessels connecting arteries and veins in the brain. And while she has been cancer-free since 2014, she had known in the back of her mind that there was a risk that the AVM could burst at any time. It was a timebomb that might or might not go off but was managed with yearly check-ups. As it happens, she had a brief consultation over the phone with the brain surgeon that then operated on her following the stroke, just 10 days before she collapsed. He had repeated to her then all the warning signs she should look out for, an excruciating headache being the major one.

I didn’t let myself think that this could be the end. If I’m honest, I just didn’t want to let myself go there

“I guess, when the pain in my head started, I did think that it was the AVM and I must have told the person at the end of the phone when I called for an ambulance because when the first responders arrived, they knew and they knew that time was of the essence.

“I kept trying to take a second out to think whether this was the worst headache you could ever have, because I had been told by the consultant that that is what it would feel like, so, I’m lying on the bathroom floor, trying to work out whether this was the worst, but the pain was so bad that I couldn’t think properly. It was penetrating every single part of me and I couldn’t think about anything other than how sore my head was and that this had to be it.

“I didn’t let myself think that this could be the end. If I’m honest, I just didn’t want to let myself go there. I was obviously really scared, I can’t pretend that I wasn’t, but I just kind of put my faith and my hope and my trust in the first responders and the team that were going to greet me at the hospital.”

Because of COVID, Amy’s family were not allowed into the hospital to see her but were warned that her life was in danger. She had emergency brain surgery and a drain was inserted in her head. It was the beginning of a hard four-month stay in hospital, during which she had a second brain operation, was in the high dependency unit for a week, and had intensive five-hour-a-day physiotherapy sessions when she had to learn to sit again before she could walk. She was eventually allowed home in October where her rehabilitation continues.

Throughout, Amy has put her faith in the medical team who she calls her “second family” and the experience has only reaffirmed her passion for the NHS and all who work in it.

Clearly, this was not the first time that Amy had put her life in the hands of the medical profession and she has a tangible resilience, borne of having had two bouts of cancer, one when she was 19 and again at 21.

When Amy was 17, she had a small spitz nevus mole removed from her face that had been there since she was a child. It wasn’t considered dangerous but was a fairly rare mole for a young person to have and so Amy had regular, six monthly or yearly, check-ups which were always fine. But when she was 19, she was applying sunscreen and felt a small lump on her face where the mole had been removed. She was seen almost immediately and taken into hospital for exploratory surgery but believing it to be scar tissue, Amy wasn’t particularly concerned.

“I came around from the surgery and the surgeon, who is really the loveliest man you will ever meet, said that he thought things were a bit more sinister than he had initially thought. Those words hit me like a ton of bricks. I hadn’t even considered there was anything seriously wrong, so much so that we’d even told my dad to go home because everything seemed fine, so it was just me and my mum and we then had to tell my dad to come back.

“The doctor basically said there was a kind of cobweb of strands coming off this lump and going into the nerves, the muscle and the bone in my face and that they would need to test it and do the pathology to make sure what it was.

“That’s scary but you’re not there yet. You’re not at that point of the total despair and sort of destruction of what that would do to your life. It’s just a maybe at this point. I think, especially when you are young, you cling to anything and just think this isn’t really happening and you haven’t lived enough to fully understand what the impact could be.

“I also think because I’d woken up from the surgery feeling so well, so bright, it was easy to think that everything was fine. We’d obviously even said to my dad to go home. But then a couple of weeks later when the results came, I think it was three weeks later when the pathology results came through, and the consultant asked us to come up and see him at 6.30pm that evening, and this maybe shows my naivety at this point, I still didn’t even think there was anything bad about to happen. I didn’t even think that was a strange time for an appointment. But it was because he wanted to tell me before the weekend that it was not the outcome we’d been hoping for.

I could be totally flying, and everything was going great and then suddenly, I would just get really, really down about how I looked and how my scar looked

“He took me and my parents into a room and told us that it was melanoma. I felt embarrassed because I didn’t even know what ‘melanoma’ was and so I didn’t really understand and then I saw the tears in my dad’s eyes, and I knew it wasn’t good.

“I was 19 years old, and I was flying. I was in second year at university and having pretty much the time of my life and then this bomb was kind of dropped on my life and everything sort of imploded at that point.

“I think my major feeling was, how do I get this cut out so that I can get back to my life because like I said, I was doing great, and everything was going so well. That has always been my attitude, how do we make it better so that we can carry on and pick ourselves up?

“I guess, having a scar on my face at that age was probably the biggest issue for me, the absolute biggest thing. I already had a tiny scar on my face from when the mole was taken away when I was 17, and I remember my parents saying to me at the time, I needed to weigh up whether I wanted a mole on my face or the scar. And the surgeon said, it’ll only be a teensy little scar, you won’t even notice it, and I didn’t really, at the time, it was so small and insignificant. You know what you’re like when you’re 17, you think everyone is looking at you anyway and you’re so self-conscious, but I was quite content with how it was. But then at 19, the operation to take away the initial lump meant the scar probably doubled in size and I was quite upset about that, but then the surgery to take away the cancer kind of made it even longer, and then when I was 21, I had another operation to remove more cancer and that’s the scar I’ve been left with. Each time it happened, I got more and more upset and found it harder and harder to come to terms with.

“I could be totally flying, and everything was going great and then suddenly, I would just get really, really down about how I looked and how my scar looked. It would come at random times. I remember being at duty free in the airport going on holiday and you know, trying on all the different make-ups and thinking, I just hate my scar. I thought about it the whole holiday. It spoiled being away, really. And then you’re like, why did I just let myself get so down about that, I’m here, and that’s the attitude I am maintaining this time, just don’t let yourself get down about it. You’re here and things are going well and who cares if there’s a scar on your face?

“It actually annoyed me when people said that they couldn’t see my scar because I was like, of course you can, so why are you saying you can’t? You’re trying to make me feel better but it’s making me feel worse. Just be honest with me.

“I remember someone saying to me that you just need to accept it and I thought, that’s not really possible because you can’t just come to terms with it. I used to edit my photos in a sort of vain attempt to hide my scar because I was so embarrassed by it and strangely, it’s taken what I’ve been through this time for me to come to terms with my scar.

“It sounds ridiculous having these concerns and yet putting myself in the public eye. Your face is what you’re having to put forward – your public face, it’s what everyone’s seen, it’s what’s on the leaflets, it’s what you’re putting out there, your calling card. People would tell me that you couldn’t notice the scar, or my parents and Sean would say to me that the scar was part of me, a reminder of what kept me here. I would get upset and frustrated when people would say that because, of course, you could see it and knowing that the scar was a reminder of what had saved me didn’t really help when I looked in the mirror. It’s why I always wore my hair so long and over my face. But it’s taken having this brain injury, waking up not being able to move my left-hand side, understanding how precious life is, to put it all in perspective.

And while everyone kept telling me that the best outcome for teenagers with cancer was when you had your family around you, I saw him on his own. I had my family, and that shouldn’t be a privilege, it should just be a given in these circumstances

“I probably had about a third to half of my hair shaved off during the surgery, right down to the bone, and you know, neurosurgeons are not hairdressers, that’s not what they care about. But yeah, obviously, I had a huge scar on my head when I woke up and I thought, don’t let yourself get down about this one because this is what really saved you. This is why you’re here. And then, when I took a minute to think about that, I thought, why am I then upset about the scar on my face? It has always felt different. I’ve got scars on my hands and other places and I don’t care about them, it was always the one on my face that’s been different, but I feel really proud of it now. Quite accepting of it. It’s part of me and I don’t feel the need to pile on the foundation to hide that part of me anymore. I feel ready to present that part of me to the world now.”

Amy’s story of survival is extraordinary. But if what you are looking for is a rich political hinterland, it isn’t there. She’s still so young and basically went from school, to university, to working for an MSP, to being elected an MP. But it is what happened during that time on the teenage cancer wards, when she battled through, when she went through the pain of losing four friends to cancer, when she had girlfriends who were told their treatment had made them infertile, when she saw in real time the commitment of NHS staff to go the extra mile, and when she got a clear understanding how ephemeral life can be, which largely defines who Amy Callghan is and the politician she will become.

Yes, like many of her age, she became politically active during the independence referendum, she joined the SNP when she graduated, and she basically wants independence because she believes that it would allow Scots to live a better life. But it is that fundamental desire to tackle injustice, born from her own lived experience, that drives her.

It’s Amy, that 19-year-old cancer patient whose political awakening came on the Teenage Cancer Trust Ward at the Beatson in Glasgow where she met a young man, called John, from Skye, who was also being treated for cancer. John was completely alone because his mum couldn’t afford to take time off work and leave Skye to join her desperately sick son in Glasgow.

“It just broke my heart,” says Amy. “He was really sick and staying in the Pond Hotel next to the hospital all on his own for 18 weeks or so while he was undergoing pretty awful treatment for his cancer. It just made me think that inequality is everywhere. It was there, on the cancer ward.

"And while everyone kept telling me that the best outcome for teenagers with cancer was when you had your family around you, I saw him on his own. I had my family, and that shouldn’t be a privilege, it should just be a given in these circumstances.

"I just thought that that boy’s disadvantage, in terms of his health outcome, was baked in. How was he ever going to get the best outcome without his family around him? And yet his mum just couldn’t afford to give up her job and be on Universal Credit to care for him.

"That must have broken her as well as him. I just couldn’t stop thinking about it. My mum kept telling me to focus on myself, but I just couldn’t get John out of my head. I knew then that if I could do anything to make things better for people like John, whose circumstances put him at a disadvantage to me, then that is what I had to do.

“For sure, it felt like this was a political issue. All the benefits were reserved at that point – the majority still are – and I really felt in my gut that this kind of heart-breaking situation just wouldn’t be allowed to happen in an independent Scotland. We wouldn’t let it. That’s what flicked the switch in me. I wanted to do something about that kind of injustice that was just so unkind, so wrong.

“That’s what I want to get back to tackling and I don’t want to be what I call, the bracket after my name. The bracket after my name was, Amy (who beat cancer twice). And then the bracket after my name was, Amy (who beat Jo Swinson). And then it was a bracket of, Amy (who’s had a stroke). Now, after all this, and as I get stronger, I just want to be Amy – with no brackets.”

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