The Cancer and Mental Health Equation

You might have noticed October is Breast Cancer Awareness Month. Perhaps you’re all too aware of the fact it’s breast cancer awareness month, because every month feels that way to you. You, like me, might have very mixed feelings about breast cancer awareness month. But before the calendar page flipped and turned from September to October, my pals at Breast Cancer Care launched an incredibly important campaign.

Because the thing is, they do this stuff all year round. They advocate for patients 365 days a year, like so many other amazing charities do. But this caught really caught my attention because it focused on the mental health impact a breast cancer diagnosis can have on a patient. It’s a report that explores the way people feel after going through 10 months, or more, of relentless treatment that strips you of your wellbeing, your fitness, your identity. Because that’s the thing. Breast cancer goes well beyond the tumour that grows in your breast. You know all this because of how much I talk about it – but this campaign from Breast Cancer Care, in partnership with Mind, goes to show just how far reaching these issues are and that I’m far from alone in this.

Over 8 in ten (84%) women with breast cancer in England are not told about the possibility of developing long-term anxiety and depression as a result of their diagnosis.

The research also reveals that 33% of the 3000 women surveyed experienced anxiety for the first time in their lives after their diagnosis and treatment, while almost half (45%) experience continuous fear that the cancer may return, which can severely impact day-to-day life. These figures aren’t really a surprise to me, but it’s pretty sobering to see them written down in black and white. That so many people live in fear or with heightened anxieties as a result of their cancer diagnosis probes that the support patients receive needs to continue long after being told they don’t need to come back to the hospital until their annual check up.

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Samia al Qadhi, CEO of Breast Cancer Care explained “We know people expect to feel better when they finish treatment and can be utterly devastated and demoralised to find it the hardest part. And though the NHS is severely overstretched, it’s crucial people have a conversation about their mental health at the end of treatment so they can get the support they need, at the right time.”

The body- mind connection is undeniable. The two are inextricably linked, and when one is put under pressure, the other naturally struggles too. Stephen Buckley, Head of Information at Mind, says:

“It’s understandable that being diagnosed with or treated for something as serious as breast cancer will impact someone’s mental wellbeing, even if they have never experienced a mental health problem before”.

And it is totally understandable. I spoke to a CBT practitioner at a festival a few months ago and she compared cancer treatment to falling off a cliff edge. You have hit every single branch on the way down and found yourself at the bottom of the cliff, battered, bruised, broken and completely dazed having fallen several hundred feet. But then someone comes to you and says “yeah – but you’re alive, time to get on with it!” but life doesn’t work that way. Because you can’t fall that far, hit the ground that hard and not need some time to process it.

I think the call for support from these two charities is absolutely crucial – but more pertinent to me is the reminder that those who do find it difficult to restart life after cancer, aren’t alone. There are many more of us who struggle beyond treatment than the world would have us believe.

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There’s another thing that I think we don’t really talk about enough – and that’s those people who have a history of mental health issues and are then diagnosed with cancer (and I talk about cancer here because this is what I know, but I feel the same about any illness). What about those people? How are they coping? I mean, I obviously ask this because I am one of these people, but while the conversation around mental health and cancer is unfolding, it’s important to ascertain this too. It’s important not to ignore this crucial part of the discussion. And that’s why I wanted to write my book.

We are getting so much better at talking about mental health but we’re still missing out huge chunks of the conversation – we don’t talk about the nuances of bipolar disease or about those who live with psychosis, even though we can talk openly about our experiences of depression. And we can talk until the cows come home about the impact cancer has on your mental health after the fact, but what about if you were already struggling to tread the tightrope before the diagnosis? Does that impact survival? Does that impact the severity of the mental damage that occurs afterwards?

The truth is, unsurprisingly, I don’t know the answers to these questions, nor how to direct the conversation around the less “fashionable”* side of mental health because I am only one person and only know the experiences of this one person well enough to examine. But I suspect there are different challenges faced by those who have already got health challenges to contend with.

1 in 2 people will get cancer in their life time. 1 in 4 people will suffer with mental health issues in their life time. There is almost certainly a cross section of these people who need to know they are supported. They need access to treatments that can help them put the pieces of their life back together after this, or any other serious illness bombards their lives. And this campaign from Breast Cancer Care is a start. A brilliant start to a conversation that could potentially change and save lives.

“With this book though, the thing you are actually holding in your hands, I wanted to let people know they are not alone. I wanted to offer Albus Dumbledore’s light in the dark. Not necessarily to insist things will get better, because I know that’s not necessarily what you want to hear – but to remind people that the human race knows a thing or two about both suffering and survival. I feel like with that in mind, it’s more difficult to feel totally isolated in your struggles – whether they’re related to mental health or cancer, or something completely different. Someone has been where you are right now. And while that doesn’t make your shitty situation (shituation, some may say) any less shitty, it suggests that survival is possible. Even if it’s just surviving one day at a time. One moment at a time. You’ve made it through every single one of your bad days until now – you can take whatever life throws at you. We are surviving even when we are just living through today and that is enough.”

Life, Lemons and Melons – Foreword

*this is a flippant use of this word. I hope you know I don’t think any mental health is “fashionable” but some is more socially acceptable to chat about than others

** If you’d like to pre-order Life, Lemons and Melons, you can do so right here. The first stage of edits is complete.

Life, Lemons and Melons – An Extract (3)

Over this week I have been sharing a chapter of my book Life, Lemons and Melons. Since October, I have been pouring my heart and my soul into a Scrivener document covering the last three years of my life. I’ve written about infertility, self confidence, chemotherapy, my exploding breast, notes from a mixed up mind and tonnes more. Earlier this week, I also saw the illustrations that my exceptionally talented friend Georgia is rustling up to be printed in the book and let me tell you, I cannot wait for you to see them. But without further ado – here’s a chapter of Life, Lemons and Melons. Pre-order your copy by dropping me an email here. Read Part One and Part Two here.

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But my medication was a salvation to me throughout all of this. And it continues to be. It means that those thoughts don’t linger as long as perhaps they would have done had I not been medicated. They mean that I don’t follow through when my brain is telling me I am worthless and that I do not deserve to be alive. That tiny tablet means the voice that tells me I should have been the one to die, rather than all the others I know who have had secondary breast cancer diagnoses and who have died as a result of this dreadful disease, doesn’t shout as loud or is easier to shrug off than it would be without the medication.

And I know I am lucky. I spend my entire life qualifying everything I say about my cancer experience with “I am grateful to still be here,” but the truth is, I might be, but sometimes my brain isn’t. Sometimes the cruel thoughts in my head tell me that I deserved to get cancer, that I deserved to die from it. That I still deserve to die from it. And it is only a matter of time before I do. And it is a process. It’s something that I am constantly working on rectifying. As I sit here now, overlooking the stunning bay at Port de Soller, watching the birds swoop over the crystalline sea, hearing the bustle of the streets below, wrapped in a blanket and writing about my experience, I am grateful. But I also know that it won’t be long until the dogs start snapping at my heels with their messages of self-destruction. And I think this is something that doesn’t get spoken about often enough, both in the world at large, and in the world post-cancer.

Citalopram has been a saviour for me. It doesn’t come without side effects. I’m heavier than I feel like I should be. I get a dry, metallic taste in my mouth if I don’t drink regularly. Perhaps it exacerbates the fatigue that I experience post-cancer. But when the darkness seeps in at the edges of my life, like a blot of a watercolour paint on a piece of parchment, spreading slowly across the page, Citalopram slows the progress. It makes the black less dense as it makes its way across my life. It doesn’t make the hole I am teetering on the edge of less deep or consuming or terrifying, but it makes it easier to escape from. Citalopram offers a rope to climb. It’s still a difficult journey that takes every ounce of strength and leaves my body and mind exhausted from the intense effort, but it makes it doable. It makes getting out of The Dark Place possible.

And I know there are people that say the longer I stay on medication the more likely it is to stop working. I know others argue that it has a placebo effect, that it doesn’t actually make any difference. Some believe that I will never be able to come off my tablets, but after the last three years and knowing my own mind as I do, I’m not sure I’d be comfortable coming off them anyway. I have fought long and hard to get to some semblance of normality and I still have a long way to go – so why would I give up the thing that makes it easier? I go back to the diabetes reference – I wouldn’t give up Insulin just because the newspaper said my “dependence” on it was problematic. I wouldn’t turn down the chemotherapy that would save my life. So why are antidepressants any different?

Living through cancer is a nightmare, in so many ways. I’m not saying that every person who experiences a cancer diagnosis needs a prescription for antidepressants, but what I am saying is as simple as this: we need to give our brains the same amount of attention we give our bodies when we are going through cancer treatment. We need talking therapies to deal with what is happening to us. We need counsellors to guide us through the hellfire and treat the internal burns that we get as a result. There is no part of your life that is unaffected by a cancer diagnosis and there is no shame in asking for a hand to grab onto at the scariest time of your life. If you’re going through treatment and you are struggling, ask for help. Talk to your medical team about counselling. They know that there is a disconnect between the physical and the mental treatment of cancer and there are conscious efforts being made to bridge that gap. So ask for help. You are not weak, you are not overly emotional, you are not letting the side down by not being positive all the time. You are asking for what you need and that is something to be celebrated.

And remember, despite what the tabloids might say, if you and your doctor believe you should be on medication to deal with your mental health, cancer diagnosis or no, there is no shame. That’s a decision between you and your medical team. Ignore the people who don’t know what it’s like to live with a  gremlin in their heads. Ignore the splashy, attention-grabbing headlines. Ignore the people who bash others down on Twitter. You know your brain better than anyone else. So trust yourself. Even if the gremlin and the media are telling you differently.

Life, Lemons and Melons – An Extract (2)

Over the next week, I’m going to share a chapter of my book Life, Lemons and Melons. Since October, I have been pouring my heart and my soul into a Scrivener document covering the last three years of my life. I’ve written about infertility, self confidence, chemotherapy, my exploding breast, notes from a mixed up mind and tonnes more. Earlier this week, I also saw the illustrations that my exceptionally talented friend Georgia is rustling up to be printed in the book and let me tell you, I cannot wait for you to see them. But without further ado – here’s a chapter of Life, Lemons and Melons. Pre-order your copy by dropping me an email here and read part one here.

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That’s not to say that choosing to take medication has been a fix-all for me, or that it was an easy process to begin. I felt like hell on earth for the first two weeks on my “happy pills”. It was a while ago now and I’ve had chemotherapy since then so my memory is a bit mushy but I vividly remember feeling like the whole world was falling down around me in those early days. There was a day when Chris wouldn’t leave the house because I had woken up crying and couldn’t stop. At the time, I thought he just felt bad leaving me because I was in such a state, but I know now that he felt like he couldn’t leave because he wasn’t sure if I was a danger to myself. I have no idea if I was a danger to myself but I felt like I my chest had been ripped open and I didn’t know how to stem the intense emotion that was bleeding out of it. When I wasn’t crying, I was lethargic, confused and numb. Without a doubt, the antidepressants initially worsened my symptoms before they made them better. But I was lucky. I had a long-suffering partner who was able to support me as I found my feet and I was well cared for by a stretched but determined primary care system where I had appointments every two weeks in the early days, and every month thereafter until I had settled into the medication.

Not only that, but before I said yes to medication, I said yes to talking therapies. After a few weeks on a waiting list for CBT, I found myself at a session with an incredible specialist called Steve. Together, we began trying to unravel my thought patterns and determine what made my brain tick in the destructive way it did. I began to learn how to combat the voice that told me I was a failure, the one that convinced me I was useless and would never amount to anything. I began to question whether my brain was serving me a thought or a fact. When I told myself that I was worthless, I began to weigh up whether there was any evidence to back up that accusation. Could I, in fact, prove that I was worthless? Or was that just the bully in my brain talking smack? Unless I could provide evidentiary proof, that would stand up in a court of law, I was able to tell myself these weren’t hard facts and I started to pay less attention to them, when I could.

Much like medication, CBT doesn’t work for everyone, but I was so lucky that I was able to go and see a practitioner in the flesh so we could not just talk about strategies for keeping depression and anxiety at bay, but to discuss the things that were on my mind. The human interaction of my CBT was hugely beneficial to me. My therapist never made me feel like I was an inconvenience or a fraud or I was wasting his time – all things I had convinced myself he would. And as I moved through the process and learned more techniques and got used to the medication I was on, I slowly started to feel more human. I was finally figuring out who I was with depression and how I could deal with it so it didn’t impact my life too much. I had begun to recognise the signals, my triggers, the little notes I left myself to suggest that a dark wave was on its way. But then, to quote Joan Didion, life changes in an instant.

It was just as I was finishing my CBT that I found out I had breast cancer. In fact, I went along to my final CBT session two days after I’d been told. At the start of every session, I’d sit down with my therapist and he’d ask me that open-ended question “How are you?”. And his asking of this question was not the perfunctory greeting we so often offer up to those we meet. It was more loaded, a “how are you – really? How is your brain? How is your mood? Have you thought about killing yourself this week? Have you thought about hurting yourself this week? Have you felt at risk at all this week?”

And for the first time, I didn’t answer him with a breakdown of what had affected my mood or exacerbated my depression that week. We didn’t break down, day by day, things that may have triggered a feeling of lowness. I told him what had happened two days previously.

“Well, Steve, I’ve just been diagnosed with breast cancer”.

That was not what he was expecting to hear, but then again, neither was it what I was expecting I was going to need to say.

From there, it became a whole other ball game. I dread to think what kind of position I would have found myself in after hearing the words “you have” and “cancer” in the same sentence and relating to me. If I hadn’t had that CBT and if I hadn’t already been on those antidepressants, I genuinely believe that my depression at that moment would have been a bigger threat to my existence than the cancerous tumour growing within my breast.

What was going on in my brain quickly began playing second fiddle to the things I needed to do to prevent the cancer from getting any worse. I quickly slipped into cancer mode and everything I learned about maintaining my own mental health fell into a massive ditch at the side of the treatment road I was hurtling down at alarming speed. I no longer had time to think about the shitty things my brain was telling me, because it was full up with cancer-related thoughts. Was I going to die? Was the cancer going to spread? Should I have a mastectomy? Can they take both my breasts off? Am I a carrier of the BRCA gene? What will that mean for my family if I am? Am I going to die and leave Chris on his own? How will chemotherapy make me feel? What is going to happen?

Before I really knew what was happening, everything I’d learned in CBT evaporated. It was no longer a priority. My focus swiftly shifted to surviving. The self-care of checking my thoughts and their patterns felt superfluous when I had something actively trying to kill me growing in my body. For a while there I didn’t give my brain anywhere near enough of the attention it needed, when it probably needed it most. I went from combining talking therapies with medication to relying solely on my medication to keep my brain in check. About half way through treatment I found myself really struggling. Christmas 2015 saw me undergo my fourth chemotherapy session. I was exhausted in a way I can’t even begin to explain to you. My spirit was broken and I felt like I was losing myself. It was during this period that I hit below rock bottom. I hit sub-zero. I got so low, I could practically feel the heat of the earth’s core licking at my feet. I had, as I think most cancer patients do, been questioning whether the treatment I was undergoing was worth it. I wondered if it was worth losing my breast and losing my hair and feeling like hell and being poisoned. But for me, there was something else too. I’d gradually gained a grip on my depression as I worked through my CBT and cancer had made me forget what I had to do to stay alive. What I had to do to make sure my negative thoughts didn’t consume me, didn’t take over my life and begin to dominate my waking thoughts. It’s something that I hate thinking about now, but at the time I remember wondering, not only was it all worth it, but did I really want to live in a world after cancer? On more than one occasion I have thought to myself, “If only I had left that lump for longer. If only I hadn’t been in the habit of checking myself, then perhaps it would have spread, and perhaps I wouldn’t be forced to deal with the complex aftermath of surviving this disease”. I hate that I thought that. I hate that there are still times when I think about it.

Because I have wanted to die in the past, and now, post-cancer there is a reason why I might. Sometimes now, I don’t think about killing myself, I think about cancer coming back and doing the job for me.

 

Next part of the chapter coming later this week!

Life, Lemons and Melons – An Extract

Over the next week, I’m going to share a chapter of my book Life, Lemons and Melons. Since October, I have been pouring my heart and my soul into a Scrivener document covering the last three years of my life. I’ve written about infertility, self confidence, chemotherapy, my exploding breast, notes from a mixed up mind and tonnes more. Earlier this week, I also saw the illustrations that my exceptionally talented friend Georgia is rustling up to be printed in the book and let me tell you, I cannot wait for you to see them. But without further ado – here’s a chapter of Life, Lemons and Melons. Pre-order your copy by dropping me an email here.

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When I was a kid, I struggled a bit with asthma. It seems that if there’s a weak spot in my the historic health of my family, it’s our ability to breathe well under duress. Any one of us in the Purkiss clan who gets a cold ends up with a hacking cough – you know, the sort that people move away from on the bus. The sort that makes people glare at you on the tube. Or one that once upon a time earned me the filthiest looks I have ever received when I had the audacity to have a chest infection whilst attending an event at the Royal Albert Hall. But when I was a kid, I was given inhalers to deal with my problem. I dutifully took my brown inhaler every day to prevent the symptoms. I took the blue inhaler when I needed instant relief, or when I wanted to look like I needed to stop running in cross country, which, truth be told, was often.

At age 13, I had horrible problems with my periods. They were heavy, full of clots, and often left me completely washed out, a weird white-grey colour and regularly unable to hold my head upright. I went to the doctors. I was given tablets. I tried these tablets. They didn’t work. I tried other tablets. They didn’t work. Eventually I was put on the pill. Every day, I took this little tablet to try to control my periods. I stayed on the pill for about ten years and the problematic periods faded to being pretty manageable. Well, as manageable as periods can be, given that a large portion of the population finds them utterly hellish. But the medication helped.

There was a time when I regularly got migraines so severe that the right hand side of my face would droop. I actually looked a bit like I’d had a stroke. It took a while for these migraines to bugger off, with my symptoms often lasting for four or five days. I saw a neurologist who put me on a preventative tablet. I took this every day to “break the cycle” of the migraines, which were clearly linked to my menstrual cycle (sorry for mentioning periods twice in two paragraphs, but women bleed out of their uteruses around once every twenty eight days and I’m a woman, soooo, buck up Bronco). I was on these tablets for over a year, no questions asked.

So why is it then, when a doctor suggested to me that I went on medication to combat the crippling depression I was experiencing, I resisted? Why did I think that my brain not working quite as I would have liked it to, was any different to my lungs not working quite as I’d like them to? Whilst not quite as useful an excuse to skive out of PE (perhaps that’s a discussion for another time?), it was still a problem for me. By this point my depression had begun pervading my life in a noticeable way. If it had once been a cloud lingering over my shoulder, it was now a surrounding fog that refused to budge. I was struggling to make even the simplest of decisions on a daily basis. If I managed to drag myself out of bed, get dressed and leave the house, the question of which shoes to wear for a day in the office often left me crippled on the doorstep. Deciding what to have for lunch became such an ordeal it was all too easy to skip lunches. I had begun to feel completely numb and consistently felt as though something awful were about to happen. I lived in a state of anticipating impending doom, a disgusting and suffocating case of “low mood” and a paralysing anxiety. But still, I felt that taking a tablet to help was a foolish step. I think part of me saw it as an admission of weakness, of defeat. I felt like I should be able to handle everything the rest of the world was handling. When a GP pointed out to me that if I was a diabetic, I wouldn’t turn down insulin, I realised that perhaps I had been affected by external perspectives on what taking antidepressants means.

It’s interesting isn’t it? Because more and more people are talking about their mental health on the regular these days. Thanks to the internet, the conversation has opened up and continues to do so exponentially. As a result, the stigma surrounding discussions of a sensitive nature seems to be fading. But from where I’m sitting, this stigma has relocated. Most people no longer judge others quite so harshly for having issues with their mental health (I’m not arguing that this has completely gone – we’ve a long way to go on that score) but society is distinctly less forgiving of those who take antidepressants, God forbid they should need to do so over a long period of time.

I’m writing this in 2018, but sensationalist headlines like “A Nation Hooked on Happy Pills” are still splashed across the front page of one of the biggest selling newspapers in the country, while previously disgraced journalist Johann Hari has just released a book which begins by throwing doubt on the efficacy of antidepressants. While I’ve no doubt that Hari genuinely believes the claims in his book it’s my firm belief that claims such as these are seriously damaging to huge numbers of people. I wish my antidepressants were happy pills that made me as perpetually jolly as the characteristically named Green Giant but they aren’t. They help me to be functional some of the time rather than just a shell of a person all of the time. They don’t stop me from arriving at The Dark Place, but they do usually mean my stays there aren’t as long-lasting or as terrifying. They mean I can usually find my way out of that shit hole. They’re the map that means I still have to find my own way, but they are also a light in the dark that helps me figure out what I need to do to escape.

I know that medication doesn’t work for everyone, but I also know what a massive difference a small dose of a tablet makes to my life – and the lives of people I love and care about – on a daily basis. As a result, I’m able to recognise the impact of the kind of blasé statement that lambasts people for taking potentially lifesaving drugs. There will be people who read things like this and think they’re doing something wrong when they take their little tablet every night after they’ve brushed their teeth. Even though I absolutely believe that taking drugs like this is right for me, there are times when reading a scathing headline or a review of a book which suggests “everything I know about depression is wrong” will make my resolution falter. If I am in a bad way, I can doubt my decision to take 30mg of Citalopram every single day. I wonder if I’m making a terrible mistake and come dangerously close to convincing myself to come off them. And I am resolute in my belief that this medication makes my life better. So what about those people for whom medication feels like accepting failure? Or those whose lives are being saved by medication but they feel shamed because they need support from a tablet. This rhetoric puts people like this at genuine risk.

There’s a reason the National Union of Journalists bans this kind of colloquialism in reporting – because it is dangerous. Would you ever see a headline that says “A Nation Hooked on Chemotherapy”? No, you would not. Come to think of it, ever seen a colloquialism for chemotherapy used in the press? No. Because people who have chemotherapy are not demonised by the rags who run these types of headlines about mental health problems.

Next part of the chapter coming later this week! If you’ve already pledged to the book via Kickstarter and you don’t like this chapter…well…it’s kinda tough I guess. NO REFUNDS.