People Your Age don’t normally get leukaemia

This post was originally published as an article in the Scottish Review on 28th September 2021.

There’s no normal way to feel when an email drops into your inbox from the haematologist who treated you for Acute Myeloid Leukaemia (AML). It’s probably quite a specific mix of recognition and spine-tingling terror. However, when your eyes flit to the subject line and there’s one single word there, it’s quickly replaced by intrigue.

I have a non-typical relationship with my haematologist borne from my non- typical patient profile. I was a lot younger than your average AML patient, treated in a general haematology ward in Dundee as I was just six-months too old to go to a specialised Young Person’s Treatment Facility. I was also technically a colleague, having started a job in the very hospital I was treated in just six weeks before diagnosis.

My path to diagnosis is a story I’ve told many times before, which will also be eerily similar to leukaemia patients across Scotland. Fatigue, sky-high blood pressure, lots of infections that just never seemed to clear, and six visits to my GP in five weeks begging them to take me seriously. Your mileage may vary on the last point, as that’s probably dependent on your GP, and whether they’re likely to tell you post treatment that they were as shocked at your diagnosis as you were because ‘people your age don’t normally get leukaemia’.

My treatment as an inpatient grows less and less memorable with each glorious day of remission that passes, but most of the conversations with my haematologist remain etched in my memory, remnants of a more traumatic time when I would pore over every word, mannerism and perceived twitch of an eyebrow to try to determine whether my chances at survival had increased or decreased from the day before. I was like some poker player trying to figure out the tells of everyone in the room, while not really understanding the rules of the game.

Thankfully, these ridiculous attempts at trying to divine my chances from the cards were wholly unnecessary. The information was always provided for me clearly so that I could understand my choices and make informed decisions, even if the information was difficult to hear.

This meant that as time passed, I was discharged from the ward and into the outpatient arm of the Ninewells Hospital Haematology Team. As my health recovered and my remission endured, the tenor of our conversations changed from specifics of my health and experience into broader conversations about the nature of cancer treatment, what gives people better chances than others, and whether he could tell me exactly what drunken cigarette had caused my leukaemia. It turned out he couldn’t answer the last one, surprisingly enough.

There are, after all, only so many times you can tell a consultant that your situation has remained completely unchanged since your last visit three months before.

This non-typical relationship has its upsides and downsides. On the one hand, I live in constant fear of my haematologist catching me with an illicit chocolate bar on the hospital concourse and judging my lunch choices when I’ve put on a bit too much extra lockdown weight. On the other hand, when I receive an email from him asking for a favour, I’m inclined to help in whatever way I can.

The request was simple enough.

I have recently published an article on the effects of socioeconomic deprivation on AML treatment to raise awareness amongst clinicians and would be grateful for your thoughts.

It was a topic we had discussed a few times before, and one which had always intrigued me.

I opened the article with equal parts trepidation and interest, and after briefly scanning its contents found that it was an article looking at deprivation in different areas of the world, and the challenges faced in those areas. One of the areas was my own little city of Dundee. I would be lying if I said that I didn’t check that part first to see if I was the patient being discussed.

It was a sobering and difficult read. I had long known that the intense familial support I had received had been my ace in the hole, if that’s even a thing in poker. When I developed a phobia and started to hide under a mentholated tissue whenever the hospital food trolley and accompanying smell rolled onto the ward and afterwards couldn’t eat, my family stepped in and started cooking food to bring to the hospital for me every day. I know how spoiled that makes me sound, and I remain grateful for it every day. It was heartbreaking to read about people who, for a myriad of reasons, didn’t have the same support. My luck and privilege were reaffirmed yet again.

Even people who live in the same city as me can’t depend on the same support.

Whitfield, the area in Dundee I hail from, and indeed still live in, has parts which are amongst the 5% most deprived in Scotland, and the picture across Dundee is not much better: 72 areas of the 188 which make up Dundee in the Scottish Index of Multiple Deprivation (SIMD) are in the top 20% most deprived areas in Scotland, with Linlathen and Midcraigie, both areas a stone’s throw from my native Whitfield, ranking ninth in the top 10 most deprived in Scotland.

The link between deprivation and health outcomes has long been established, but what I hadn’t quite appreciated was the difficulty in trying to address the root cause of the issue. Health promotion, as it’s called in the business, struggles to make inroads into deprived areas for reasons I don’t quite understand. The people who would benefit most from health intervention are often those least likely to engage with it, waiting instead until some unseen internal tipping point is reached.

One approach that has been successful in the past, and indeed was part of the approach that led to NHS Tayside and partners being the first region in the world to effectively eliminate Hepatitis C, involved a layered approach which included placing key workers in the local community to almost advocate on behalf of the NHS and help direct people to the health interventions available.

It’s an approach mentioned by my haematologist as we discussed his article and its larger implications, and one he thinks could be immensely helpful. However, as with many things, he is aware that it’s not going to change things overnight. Ever the doctor, he was quick to mention that the damage done by a lifetime of surviving deprivation cannot be undone with the flick of a switch or the prescription of a pill. With treating Acute Myeloid Leukaemia, every day that treatment is delayed can be the difference between life and death.

I’m inclined to trust him, even when it comes to chocolate bars, but I just can’t shake the feeling that surely there’s something more that can be done.

I’ve been filled with these thoughts before, and they’ve spurred me on to great heights in the name of raising awareness. My first solo exhibition of artwork in 2018 was based on my experience of a ‘Young Person With Cancer’, a moniker I wear with pride even as I see the incredulous glimpses of those who know my real age. However, I can’t help but feel that even as I ‘raise awareness’ with every article written, every blog post published and every pithy comic tweeted, that I might just be preaching to the converted. If you’re spending every day dealing with severe health inequality, the chances of you taking the time to read my blog post are slim. And honestly, I don’t blame you.

What I’m left with is an impotent feeling, vague ideas of starting an art club in my local community centre, which I wouldn’t even know where to start with, and a poorly written email to my local MSP with an empty list of demands sitting in my drafts folder.

In researching this article, however, I found that I wasn’t the only one who didn’t seem to know what to do. Leukaemia Care UK and MacMillan both had no results on their websites when a search for ‘deprivation’ was performed. All Cancer Research UK had to show me was page after page of cheerful mortality statistics for every possible type of cancer, where I could helpfully filter that information on a deprivation gradient.

When, at my haematologist’s suggestion, I performed searches for ‘health inequalities’ at the sites above, I was able to find more information but none of it seemed to give the concrete answers I was hoping to find. Instead, I found the similar refrain that I’m sure we’ve all grown used to hearing. Suggestions of funding smoking cessation, tackling childhood obesity, and the unicorn of ‘increased funding from the government in the next spending review’ were aplenty, but nothing mentioned of the difficulty of health promotion teams in making any headway into the communities where the sharp edge of deprivation’s knife were felt most keenly.

Cancer Research UK were able to give form to the problem, with statistics proving that people in the most deprived communities were less likely to be able to access medical care at a time that suited them, less likely to identify the symptoms of potential cancers, more likely to smoke and more likely to experience childhood obesity. But the problem didn’t stop at diagnosis. The people from our deprived communities are also more likely to be diagnosed at a later stage, through an emergency route like A&E, which gives them fewer treatment options and a higher risk of overall mortality.

The statistics are there, replicated again and again, and after reading the paper my haematologist worked on, are replicated around the globe. However, for the clearly defined shape of the problem and its causes, what I couldn’t put form to was the shape of the solution.

It’s possible this information exists, and is on the desk of some important person with the power and ability to effect change, and not on the internet for this lowly artist to find. I would sincerely hope that is the case but there is a cynical part of me that suspects the opposite. It might be due to living in Whitfield and working a day-job on the front lines in the NHS: I see the deprivation up close and like a boiled frog have become numb to it. I have been the person who has called my GP’s office hundreds of times at 8am, been unable to get an appointment, and have been resigned to trying again tomorrow. I have been the patient presenting with symptoms of an acute leukaemia I didn’t recognise, and have been sent home with a prescription for antibiotics and told I was suffering from stress.

Since I last wrote about my experience of deprivation in Dundee, the situation has become increasingly polarised. The waterfront development, launched with the opening of the V&A and now expanded by a new man- made urban beach with plans for an eco-attraction, ‘Eden Project Dundee’, as well as updates to the famous Discovery Point (home to the famous RRS Discovery) paints the city as a boom economy, and for many in the creative and scientific sectors this remains to be the case. However, the manufacturing sector in the city has been particularly decimated by the closure of the Michelin plant in the last few years.

Judging by the National Statistics Annual Population Survey, the unemployment rate in the city does appear to be dropping, showing a long- term improvement, sitting at 5.5% for the year 2020, however, this positive picture is painted against a backdrop of empty retail premises making up 13% of Town Vacancy Rates, a figure which has remained static since 2018.

It would also be a mistake to fail to mention the drug deaths in the city. Dundee has the highest drug death rate in Scotland, and drug use across the country is 17 times higher in the poorest areas compared to the wealthiest. Problematic drug use is more prevalent in areas with higher deprivation, where there are limited opportunities in employment and education.

None of these statistics are news to me, instead, they have provided the background to my life. When I was in high school, our claim to fame was the highest teenage pregnancy rates in Europe. Around the time of my diagnosis, the Michelin factory venting their fumes into the air; the local incinerator burning waste less than a mile away, and the persistent rumour of Whitfield being built on a toxic waste dump, have all been touted as causes for the cancers in the area. Lacking access to Dundee’s equivalent to Erin Brockovich, these mysteries have all gone uninvestigated, but the more upsetting truth might be that we are not all that special.

Facing that, if it is indeed true, leads me back around this cycle of feeling desperately that the interventions we are relying on currently are not doing the job our friends in deprived areas need, but also feeling like the answer

lies on the tip of my tongue, frustratingly out of reach. If I only knew the location of the office where the easy answers lay, I’d be banging on the door asking what I could do to help.

That office with the easy answers lies down a dark hallway in a building I can’t find, and until I can find directions to it, all I can do to feel like I’m helping is to keep raising awareness. Does anyone have a map?

This Article was Originally Published in the Scottish Review on the 28th of September 2021. It is reproduced here for archive purposes.

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