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.

***

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.

***

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.

*****

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.

words about cancer

The Power of Words with Maggie’s

 Around the time I was diagnosed with breast cancer in 2015, I wasn’t aware of anyone like me talking about their cancer experience in an open way. There were blogs and there were websites, but these were largely aimed at older women. I felt so far removed from the conversation these websites were having, I decided to start my own. I began blogging about my experience, not only as a way to come to terms with the treatment I was having and the things I was facing, but to open up that conversation that felt completely unlike me.

When you’re dealing with something that no-one really wants to talk about, it’s hard to find the words to explain things. Likewise, it’s hard for those around you to find the words to say what they really mean when they’re faced with things they can’t understand or don’t really want to think about. When it comes to cancer, the language used around the topic is incredibly divisive and it’s something every cancer patient I’ve spoken to has strong feelings about, regardless of where they are with their own experience. For me, I was staggered by the way people described me as “brave” and “inspirational” when all I had really done was go about the business of tackling the cancerous cells that had made their home in my right breast. And since I entered the world of cancer, the language people use to describe this world – from “battle” to “journey” to “suffers” and everything in between, has become something I am incredibly passionate about.

Research around this topic is becoming more and more important as more people survive cancer. We all know the stats. 1 in 2 people will be diagnosed with cancer in their lifetimes, but more and more people are surviving beyond the 10 year survival rates often hauled out to show how treatments are improving. In 2015, Professor Elena Semino, a linguist from Lancaster University looked at the ways people talk about going through cancer treatment. The research, which studied 1.5 million words showed that the most used metaphors for talking about cancer are “violence metaphors” – i.e “battle” “fight” “war”, and “journey” metaphors. Semino went on to explain that often, patients feel disempowered by these kind of terms because they feel “they aren’t given the right “weapons” to fight or that the doctors are “the generals” and they’re just common “foot soldiers” in the fight against cancer.

The research also added that while calling cancer a “journey” doesn’t create the opportunities for failure, it’s not necessarily better. It can provide comfort to think of others on the journey with you,  but  “for some other people, there is this idea of a reluctant journey. One person says ‘how the hell am I supposed to navigate this road I don’t even want to be on.’”

I never want to claim that I speak for all cancer patients, so I asked the network of people I have met during my own cancer experience for their thoughts – and wanted to share a couple with you…

Izzy told me: “I loathe ‘brave’. I’m not brave, I’m just me and you would be too in this situation. Also again with the implication that to admit you’re struggling makes you ‘not brave’. It’s so toxic”

while Harriet added: “I hate all the fighter stuff – it’s only used for cancer and not for other serious illnesses (heart disease fighter, diabetes fighter, MS fighter..!)”.

Jacob said: “I’m not a fan of the whole ‘fighter’ and ‘positive attitude’ tags. It invites unneeded pressure on cancer patients already going through so much. I mean try being positive when you’re a shadow of your former self with poison coursing through your veins with a medicated depression caused by prednisone. It’s completely unrealistic and would test anyone both physically and mentally.

Shelley looked at it totally differently and said: “I’m not a fan of people saying I beat it or I’m better now etc, defensively I take that as though I should be over it now when in reality I’ve found it harder mentally after active treatment than during.”

Joh added: “While I was having treatment I hated the term ‘fighter’ as it felt totally out of my control and that I was merely doing what was necessary rather than actively kicking arse. It was only afterwards that I agreed it was indeed a battle so the obvious term to use is fighter although I think soldier is more appropriate (semantics!)”

Zoe: “I personally like the fight talk but I don’t use it to people who don’t like it. I’m never offended if someone asks me not to use it as it’s a personal choice.

Sarah: “I got sent a document the other day by a well-meaning friend that had the phrase “cancer victim” in its opening gambit. Never considered that word before then.”

These are people who have experienced all different types of cancer and are at totally different points within their treatment plan. While the opinions differed from person to person, pretty much everyone I spoke to had some form of strong feeling about the language around cancer – proving what an emotive, divisive and difficult topic it is.

But there was one response which was largely unanimous. Every person I spoke to agreed that they did not like the fight analogy when it was associated with someone who had “lost”. The use of this phrase suggests that people who die as a result of their disease haven’t fought hard enough. That they didn’t win because they didn’t give enough to their treatment. I’m pretty sure the dislike of the term “lost their battle” is, for want of a better description, a hill which any number of cancer patients would die on.

This week The Guardian ran an article off the back of some research by Macmillan that explored the idea that “Pressure to stay positive may be a negative for cancer patients”. This is another point of view which was widely echoed by the people I spoke to. As Jacob mentioned, it adds unnecessary pressure to patients at a time when they are already facing more pressure then they know what to do with. They are living in a powder keg and giving off sparks. This is something I 100% recognised from my time in cancer treatment. I was scared and I was vulnerable and I was exhausted – but whenever anyone asked me how I was doing, I slapped a big smile on my face and told everyone I was “doing fine – all things considered”. My mum has always said “fine” means “f*cked off, insecure, nervous and exhausted” which at that time I think was totally accurate. The pressure to be positive suffocated me. It still suffocates me now. I remember reading an article that suggested those who were prone to depression before a cancer diagnosis were more likely to die of their disease because of the lack of positivity in their life. I have lived with depression for most of my adult life – this idea that positivity could affect my chances of survival was, and is, terrifying to me.

***

I think it’s important that every patient creates their own metaphor for their cancer experience. I read something that suggested that having cancer was a bit like seeing someone you’d rather avoid at a party. As far as you’re concerned, you just want them gone. They’re there, and there’s nothing really you can do about it, so you just have to co-exist together until the end of the party. I vividly remember the line “you eye each other furtively across the room” but you never interact. Then, when the party’s over you’ll go your separate ways. I’ve heard having cancer being referred to as having an unwanted house guest, but even prefixed with “unwelcome” or “unwanted”, “guest” makes it seem like they’re a bit welcome, or they might have been once. So during my treatment, I called my cancer a squatter. Unwelcome. Unwanted. Naming it in this way gave me some sort of control over a situation that was far beyond the realms of my grasp.

But no matter how the individual describes their cancer experience, we’re a long way from the media nailing how they do it, and doing it in a way that sits well with those who have a lived experience of the disease. Despite ongoing campaigns from charities to change the way the media speaks about cancer, they often still reach for the same tired old cliches, often without realising the impact this has on those who have had or are undergoing treatment for cancer.

Here’s a couple of headlines and quotes from news articles covering those who have died from cancer (bear with me, I know this is a bit bleak)


“Labour’s Tessa Jowell dies at 70 after cancer fight”

“Alan Rickman died in January 2016 at the age of 69 after a battle with cancer”

“David Bowie died Sunday after an 18-month battle with cancer”

“Patrick Swayze loses cancer battle at 57”

“Actress and singer Bernie Nolan has died at the age of 52, following a long battle with breast cancer.”

It seems like the media struggle to find anything other than lazy euphemisms to describe these people – when often their lives have been rich and full and surrounded by dazzling achievements. To see them reduced to a “battle” they have “lost” seems to diminish every other part of the their lives.

I think in the age of social media, the role of those who have or have had cancer as advocates for this and so many other things that affects us is essential for driving change. It’s so important to acknowledge that the way we talk about cancer as our first hand experiences can have a hue impact on the way others think and feel about cancer. The advent of social media has allowed us to open up the conversation around cancer in a way we never have done before, and in doing so we’re constantly reducing the taboo. We’re no longer talking about “the big C” in hushed tones, refusing to even use it’s name, like some kind of health related Voldemort. And opening up the conversation this way means that we’re spreading awareness. Awareness leads to education. Education leads to improvement. We can talk about problematic boobs that try to kill you, fannies that give you grief and the for want of a better word “shitty” symptoms you should be looking out for for bowel cancer. The more we do this and the more we humanise this disease which has been personified into a spectre of darkness and terror, the more we can drive the conversation forward. As we do this, we will be educating more people how to talk to their pals who have had cancer, and we can call on them to call out the media for clumsy descriptions of an untimely death.

But, from my point of view I think there are a few things that are important to remember. As far as the media is concerned, it’s more important than ever for the cancer community to take charge in holding them accountable for their descriptions. So next time you see a headline that says “lost a battle” – tweet about it. Write a letter to the editor (old fashioned but I reckon it’s worth a punt). Use your experience to empower others and educate to the best of your ability.

But I think when it comes to family, friends and well-meaning well-wishers, kindness and understanding is key. Remember the person you were before cancer and how you would have felt in the situation they’re facing. Remember when regular folks are talking about cancer, they’re doing it to the best of their ability. I know that I would have been guilty of succumbing to some of the cliched stock phrases people to turn to before I lived in the cancer world.

It’s key to remember that, most of the time, people are doing the best they can in the circumstances they face.

 

**This piece is a talk I gave as part of a Power of Words event at Maggie’s. Maggie’s offers free practical and emotional support for all people living with cancer, and their family and friends. Their centres are a home away from home tucked into corners of hospitals and NHS spaces around the UK. The centres all aim to be a place of safety and security for those experiencing a cancer diagnosis. I visited their Barts centre and they have created something truly wonderful for their service users. If you’re going through or have been through cancer and need some time, space or expert guidance, find your local Maggies.

My Grandma Constance

My beloved Grandma Constance died on 24th February, four days after her 93rd birthday. She was an incredible woman and I am exceptionally proud to have called her my family. Here are two pieces of writing that I put together before and after her death. The first, I read at her funeral, the second I wrote as she was on palliative care, towards the last days of her life. I saw her last on her birthday. The final thing I said to her was “I love you”. The final thing she said to me was “I love you”. I will hang onto that forever.

My Grandma Constance

My Grandma Constance was a tour de force. I have admired her for as long as I can remember. I don’t know if she ever realised how responsible she was for shaping me into the human I have become.

I have been moulded by her love of words and reading. This made me into a voracious devotee of the written word myself and an avid writer. She bought me my first thesaurus when I asked her what another word for “kerfuffle” was. I think I was about six.

Her intense attention to detail when it came to spelling and grammar made me a total pedant when it comes to accuracy. She taught me to spell and she taught me the right place to put a comma for both practical and poetic reasons.

Her insatiable curiosity fed my innate need to ask questions. I want to know more, to experience more, to live life in a state of constant inquiry because of her. I remember the time she read Harry Potter, because she wanted to know what all the fuss was about. She never got past The Prisoner of Azkaban, the third in a seven book series because the Dementors gave her nightmares. But her need to know meant she had to find out why everyone was talking about “this Harry Potter boy”.

Her baking taught me to love the attention to detail required to make culinary delights, but I carry it with me in my every day life too. I used to sit on a stool in the kitchen as she pottered around and watching her make delicious treats out of raw ingredients seemed like magic to me. That’s not even mentioning the results of her time near the cooker – my favourites will always be her Smartie topped chocolate buns and the crunchy, rich fridge cake she’d rustle up from a hand written recipe. I’d live on the fruits of Grandma’s labour in the kitchen until I turned 93 myself, given half the chance.

I have acquired her fiery streak, her sharp tongue, her cold hands and her warm heart and her love of daffodils. Chris jokes that I am going to bypass turning into either of my parents because I am already my paternal Grandma.

She was the very best of the humans. Kind to the core, compassionate, brilliant, determined, warm and fierce. She was stubborn and she was witty and she was effortlessly intelligent. I often wonder what she would have done with her brain had she been born 60 years later.

Losing my Grandma has broken my heart. But in losing her, I’ve taken some time for reflection, time that we’re all guilty of not granting ourselves often enough. I have sat back and looked at our whole picture together, a picture spanning almost 30 years. It is a beautiful picture. Full of love, laughter, joy, goodness – and chocolate buns.

I loved her very much. I love her very much. I will miss her immeasurably. But I am so very grateful for every single minute I got to spend with her.

Grief

I’ve spent a lot of time over the last three years grieving. Cancer takes so much from you that with every piece that is removed, there is a process of grief. I have grieved for my hair, for what my body used to be and all of the phases it has been, I grieve for the time when I didn’t worry about cancer reappearing in my life, and the times when I hadn’t confronted my own mortality head on. I grieve for the career I might have had, the things I might have achieved. I have become very familiar with grief in the almost three years since they told me it was cancer.

But I had forgotten how it feels to grieve for a person. I had forgotten the all encompassing, enveloping heartache that comes with losing a person you love. I had forgotten the breath-snatching feeling of getting a call to say that someone you’ve had in your life, for your whole life, is fading. I had forgotten that even though you spend your whole life preparing for your grandparents not to be here, when one of them begins the process of leaving, a world without them in it seems inconceivable and ugly and harsh.

And while this falls under the same umbrella term of “grief”, the two are worlds apart. There are oceans between the feeling of losing yourself and losing a loved one. The number of capital cities between the two is overwhelmingly high – there are vast continents stretched out between the state of Self Grief and the feeling of saying “I love you” to someone for the last time.

I had forgotten what it was like to grieve for a person. But this week I am remembering as my Grandma lies and fades in a hospital bed, 53 miles away. But I am remembering her chocolate buns – my favourite baked treat, the fluffy Easter chicks on her April cakes, her jokes about feeding me boiled eggs, her insatiably curious mind, her warmth and her love of words. Her stubbornness and her fiery streak, her sharp tongue.  The blurry days of my childhood when she sang “I thought I saw Puddytat”.

I had forgotten what it is like to grieve for a person. But I had forgotten what it is like to sit back and see our whole picture together too. And what a beautiful picture it is.

(IN) Equality

Every 8th of March the same question is asked

“When did we celebrate International Men’s Day last?”

“It’s the 19th November” voices reply

But the questioners don’t notice, don’t bat an eye.

“Well we don’t make a song and dance” they say

“We don’t kick up a fuss in quite the same way

Why are you using your voices to make such a row?

Haven’t you heard there’s equality now?”

“Equality?” I think as I start raising my voice

Not when there are people who can’t help but rejoice

At a deftly created rape joke delivered with a smile

Because it’s all just banter isn’t it? Not vitriolic bile.

But then there are women being killed by their ex

Beaten and belittled because of their sex

Only six of the FTSE 100 have female CEO’s

And women who are raped “deserved it, those hoes”

Because their “skirts were too short” or they “got too drunk”

It’s their fault, isn’t it, not down to that punk

who took advantage, didn’t get consent

Thought he could do what he wanted without her assent

Yes we can vote, and yes we can thrive

As long as it’s in a way which doesn’t seem too contrived

“The PM’s a woman” the meninists decree

“And the Queen is a woman, so just leave things be”

But we “feminazi’s” can’t let things go

While the media picks out something else to show

Us we’re not perfect, not doing as we should

How skinnier is better and pretty is good

When trans women are told they’re not real women at all

And board members “belong in the kitchen chained with a ball”

As women are ejaculated on on the tube

As we’re felt up and catcalled and harassed by some dude.

“Equality?” I think as I start raising my voice

We are feminists, we do not have a choice

But to stand up for our sisters and others as well

Every woman we know who has been going through hell

While being battered and damaged and kicked and destroyed

raped and murdered and belittled by boys

Underpaid, overworked, judged and harassed

Nothing more than a pair of boobs and piece of ass

So every 8th of March when the same question is asked

“When did we celebrate International Men’s Day last?”

I’ll stand with my sisters, intersectionality first

And say we know #NotAllMen are the worst

But tell them we have a long way to go

That the patriarchy is still very much in full flow

We’ll stand our ground and fight for the day

When women and men are treated exactly the same way.

No Cure for Heartbreak

I have been watching a lot of Grey’s Anatomy recently. I discovered it was on Amazon Prime and I started watching it from the beginning. Some people say it’s depressing but in those early days, the dialogue was quick witted, sharp, moving and funny, while the storylines pushed the boundaries of medicine and beyond. You’d think given the amount of time I’ve spent in a hospital over the last three years, and given the fact that my own hospital gives me palpitations every time I visit, that I’d want nothing to do with a medical drama. Sometimes I don’t. But as with most things I find comfort in the familiar and the old storylines and well-worn characters offer me some kind of safe space. A space in which I can exist without my mind for a while. It’s chewing gum for the brain with a heart.

Obviously watching Greys, you see a lot of surgical scenes. You see amputated limbs and gore and loss and the medical terminology washes over you like a second language you’re almost fluent in. You hear talk of scalpels and defibrillators and “apis” and sutures. Sutures. That’s the one I have become fixated on of late.

When I had the tiny cyst removed from my left breast when I was 19, I remember asking them how many stitches they had used. There were eight of them, I think. I’d never had so much as a cut really, before then. Nothing more than a papercut. So I was fascinated by the idea that these little stitches had been put in my body to tie up the loose ends of my skin and help them knit back together. Now, obviously, I have had my fair share of sutures. I have been cut open and sewn back up eight times in the last three years. I have had little stitches over little holes and lots of bigger stitches over bigger holes. I have had the soluble type and the ones my surgeon has had to pull out and discard. I no longer know how many stitches they have put into me. I stopped asking that question once cancer was part of the equation.

But these sutures have helped my scars heal cleanly and tidily. The scar across my breast is hair thin at points – an absolute credit to the man behind the cutting and the teams behind the stitching. My chest is a battleground and the sutures were key in helping to rebuild the damage that cancer had left behind.

But there are a lot of other places I could do with some sutures. Some little stitches to help do-up the other scars that cancer has left behind. And the wounds that I leave behind on myself as a result of harsh words or criticisms or unreasonable expectations that I apply to my life. The places where I feel I am ripped open again and again – where the fear slips in and the heartache begins or where the old wounds are failing to scab over, but continue to come unstuck. There are so many parts of life that can be fixed with carefully applied medicine – sutures, or chemotherapy or radiotherapy or a hysterectomy or an appendectomy or a dose of antibiotics – but there are so many parts of life where you can’t apply a sterile dressing and walk away. Where the sutures will not hold. Where a surgery cannot remove the thing that is trying to kill you.

So what can we turn to when medicine isn’t enough? Today, I baked bread. I left the house. I had a shower and tried to wash all the negativity and bad feeling and tears and emptiness away. I tried to find my own sutures for the cuts and scrapes that life throws at us. It’s funny because the emotional turmoil of cancer doesn’t go away, long after the tumour has gone. If you’re lucky enough for the tumour to go. The emotional turmoil of cancer lingers longer than most people realise. Than I realise myself a lot of days. Sometimes I feel like I am moving forwards, sometimes I feel like I am no further ahead than I was the day my treatment finished. I am still in need of sutures, because the emotional and mental wounds that cancer left behind keep on reopening. They reopen with every surgery, every hospital appointment, every lump or bump or cough or ache. Every dose of bad news. Every loss.

The wounds are healing but they never get the chance to recover completely. Because life and death and everything in between happens and we are expected to buck up and carry on and keep getting up and keep going and be the best that we can be in this world so that our lives are not wasted. So that this chance we are given, this one life we have, can be the absolute best we can possibly make it.

No amount of sutures can heal the cuts that run much deeper than the skin and the tissue and go beyond the body. But we do the best we can.

We will get up every day and keep doing the best we can and hope that it is enough.

We do the best we can and hope that it is enough, because as of yet, there is no cure for heartbreak.

Perfection Paralysis

My Dad has always told me that “procrastination is the thief of time”. It’s something he told me a lot when I was growing up, and something I think about often in my working life. I’ve always been guilty of procrastinating. I often put things off for as long as possible, waiting until the absolute key moment to get things done. I’m the typical journalistic type in that I work best when I have a deadline, because then there’s no dallying. And it’s best if that deadline is set by someone else, rather than me. Because if it’s set by me, I’m much more likely to put it off. This sounds like a terrible quality for someone who works for themselves and is expected to figure out and control their own workload, but I actually think that’s part of the reason being self employed works for me.

But I’ve had a revelation recently. I don’t know if it’s because I’m getting older or because I’m more self aware or a combination of the two, but it seems that I have quite a lot of these revelations these days. You see, as well as being a procrastinator, I’m also a perfectionist. You might not think it if you were to see the way I bake or the presentation of food on my plate, or the disarray of books next to my bed, but when it comes to my work, my writing in particular, there’s a strong part of me which feels that if it’s not perfect, it’s not worth doing at all. So often I find myself with something to write or an idea that I need to pitch and I stop. I end up paralysed by the idea that I’ll never be able to make anything as perfect as I’d like it to be, so why would I bother even beginning? Obviously, I’m able to give myself a kick up the backside more often than not (ALWAYS if there’s a client or a work project involved) – but there are definitely things, primarily ideas I have, that linger by the wayside as I procrastinate them off my agenda.

This is something I have really found with Life, Lemons and Melons over the months since the Kickstarter finished. This is one of the easiest things to procrastinate off my agenda that I’ve ever worked on. It’s a balance for me, at the moment, between doing work that I’m making a living from and work that is essentially going towards a passion project, not to mention the fact that putting a massive piece of my heart and my soul on the line feels like a gargantuan step. How on earth am I not going to screw this up? I suppose it’s no surprise that I hold incredibly high standards for myself. I have done for a very long time in pretty much every aspect of my life. I must be the best daughter, sister, wife, employee, writer, cancer patient, survivor, mental health patient I can be – not being those things, and the pressure I put on myself to do them, is a big part of what sends me into a tailspin that results in my prolonged periods of low mood.

Procrastination, perfection and paralysis are three words that sit together very well, and not just because they are alliteratively pleasant – but because one often leads to the other. When a hearty dose of self doubt is thrown into the mix (and everyone has at least a dollop of this thrown into their genetic makeup), it’s easy to see why people find themselves in a vicious cycle of trying to get things done, freaking out that they won’t be exactly how they want them to be, aborting the thing they’re working on and then repeating the whole cycle when they try to confront the task at hand again. It is exhausting. For such a long time I thought I was just lazy, but it is SO not true. I mean, I obviously am lazy sometimes (what would Sunday mornings be without a lovely long lie in?), but I’m not lazy when it comes to my working life – just sometimes I am incapacitated by my urge for everything I put out into the world to be perfect. Do you know how many half written blog posts I have saved on the back end of this website? Too many. Do you know how many half-written pitches I have for features I’ve been considering and then suddenly decided they’re definitely not worthy of sending? Countless. I have a whole spreadsheet. I have semi-written stories, opening paragraphs of stories and a notebook full of wild and wonderful ideas that may never actually see the light of day unless I break this habit. And I’d bet my bottom dolla that I am not alone.

So what can we do when Perfection Paralysis strikes? That’s a bloody good question my friends, and something I think Liz Gilbert touches on perfectly in her book Big Magic (if you’re at all creative and haven’t read it, beg, borrow or steal to read it).

I keep coming back to Big Magic in times of creative distress . She describes her creative journey as a “road trip”. Those present in the car are Gilbert, her creativity and of course, the unavoidable Fear, who’s main purpose appears to be to tell us that what we are doing is not enough. She goes on to describe the welcoming speech she gives to The Fear before the trip gets underway. She accepts that fear is coming along for the ride – but she sets out definitive rules for it if it insists on coming. She says:

There’s plenty of room in this vehicle for all of us, so make yourself at home, but understand this: Creativity and I are the only ones who will be making any decisions along the way“.

Gilbert goes on with the analogy which perfectly nails what it is to be a creative person who is trying to combat The Fear. Her closing words to The Fear?

You’re not allowed to touch the road maps, you’re not allowed to suggest detours. Dude, you’re not even allowed to touch the radio. But above all else, my dear old familiar friend, you are absolutely forbidden to drive“.

I’ve learned a lot about acceptance over the last few years – I’ve had to accept my body as it is now, I’ve had to accept my experience of cancer and I’ve had to accept my brain for the gifts it gives me. I suppose combatting this Perfection Paralysis is just another part of that – accepting my brain for the gifts it gives me, but not letting it run the show.

And here’s the thing. What is perfect? Who decides what’s perfect? And why do we put so much pressure on ourselves to achieve that unrealistic standard? As with most things, it’s time we gave ourselves a break. So I’m creating a new mantra for myself: “imperfectly finished is better than perfectly unfinished”.

AND HOORAY! I’VE BEEN THINKING ABOUT WRITING THIS BLOG POST FOR ABOUT 6 MONTHS AND I’VE FINALLY DONE IT. It’s not perfect, but it’s DONE!

Here’s a song by Fairground Attraction. When it comes to love, perfect is pretty nice

Future Islands – Brixton Academy, Review

While the lead singer of Future Islands, Samuel T. Herring, looks distinctly like a GP with his sleeves rolled up in preparation to perform a prostate exam, the sound that spreads through Brixton Academy from his voicebox and the collective sounds of the band are quite different.

Future Islands do not look how they sound. Quite the opposite in fact – the cool demeanour in their sound is not represented by their image. Had you only heard these guys on the radio, you’d be surprised to see the four men standing on the stage in front of you. They look more like they’re about to teach a geography lesson than rustle up a heady collection of songs that set Brixton Academy alight with a thrumming atmosphere and make feet tap to the rhythmic beat of the heavy drums and synthy keyboard sounds. And this is something which only seems to add to the magic of their live shows.

The intensely feeling lyrics, such as “People change, You know but some people never do, You know when people change, They gain a peace but they lose one too” from the hit song Waiting on You, enable Future Islands to balance dreamy, futuristic riffs, guitar sounds and the haunting language of the songs with meaning that lingers long after the song has finished. There’s something about their lyrics which speak to the millennial audience gathered. The crowd is hooked on both the sounds and words of each song as if it is an addictive drug, but rather than seeking nothingness from its clutches they are seeking guidance from the wisdom of the song lyrics and escape from the real world with the harmonious melodies. Every song can be related to the real lives of the audiences – we all hear a part of ourselves as Herring performs, throwing himself dramatically around the stage and giving attention to every word he sings.

Herring is a showman like no other, eliciting the full spectrum of emotions from the audience looking on to his performance. From the guttural roars of his low-end vocals to his theatrical, crowd-pleasing dance moves, dazzling high kicks, Cossak moves (yes, really) and overwrought chest thumping feeling of the lyrics, it’s as if every moment of the show is an exercise in exorcising his internal demons. Were it not for his regular interaction with the audience – singing directly to those crammed in at the front of the stage to expletive laden messages about how awesome the rowdy crowd are – it would almost feel voyeuristic to watch the man in front of you come undone and piece himself back together in every song, especially as the band’s latest offerings have become somewhat bleaker, exploring themes of depression, death and loss with in amongst their pithy electrobeats. His energy levels are similar to that of an over exerted toddler on a frenzied high before they crash out into a deep sleep or an exhausted tantrum. Just how much he exerts himself is evidenced in the way his characteristically cleanly pressed black shirt becomes a sweat-sodden memory of a shirt within the first 25 minutes of the show.

Future Islands sound like no other band of the present or from history and the album of this tour The Far Field (released in April 2017) is a rip-roaring success amongst those who require their music to have as much theatre as it does feeling. And boy do these guys know how to put on a show as they edge their way towards the curfew with no hint of winding down anytime soon. When the gig finishes, Future Islands leave behind a feeling reminiscent of the moments just after a storm – an electric atmosphere still hanging in the air and the sense that you’ve just witnessed some of the realest, purest magic the world has to offer.

food

A Love Letter to…Food

When asked what my favourite food is, it’s practically impossible for me to choose just one thing. I can’t even pick one meal, let alone one ingredient. I love the flavours of my go-to recipe, a delicious pork and bacon lasagne while the scents of a Sri Lankan chicken curry can drive me to distraction as it simmers away on the cooker. When I was in treatment for breast cancer, sometimes plain pasta and peas with a knob of butter and a grind of black pepper was the only thing worth crawling out of bed for. A light, fresh and vibrant stirfry is my favourite thing to tuck into when I’ve been a bit overindulgent and there’s really nothing better than a Sunday roast and all the trimmings, whatever day of the week it is. Put a block of cheese in front of me and I’ll happily nibble away at it, whether it’s cheddar, Wensleydale, Applewood smoked or, even, if the mood strikes me, a Babybel. Food, to me, is life. And I find solace in pretty much everything I eat – not just the classic comforts of Shepherd’s Pies and chocolate bars. In a perfect world, I think comfort can, and should, be found, whenever you transfer something from fork to tongue.

Cooking too, is somewhat of a salvation for me. Our little kitchen doesn’t have room for fancy gadgets, nor does it have room for more than one person to be in there at any one time, but the process of taking ingredients in their constituent parts and creating something that makes my mouth water has always appealed to me. When making meals, I so often seek new recipes for inspiration and then find myself thinking that I know better than the chef who wrote the recipe and end up freestyling. I’m an absolute tornado in the kitchen – often throwing not only food but pots, pans and bottles on the floor in my haste to whip up a taste sensation. Surfaces represent food war zones and the cooker top is splattered like a Jackson Pollock work of art but where his colours are varied and vibrant hues of paint, my works of art are made up of slices of leek, splatterings of tomato puree and sprinklings of herbs and spices decorating the cooker top as they miss the pan. If I’m baking, you can expect to find floury footprints on the carpet as I’ve spilled on the kitchen lino and proceeded to absent-mindedly trample it through the house. I once managed to get soy sauce on the ceiling, something I consider to be an accolade. I am never clumsier, nor more sweary than I am when I am in the kitchen, but the experience still has some kind of meditative quality about it. My camera roll is filled with poorly captured photos of dishes that I created that tasted incredible but which I could not translate to film.

At the start of my Boobettes talk, in an effort to introduce myself to the audiences and position myself as a real person, I share a few facts about myself. The line that always gets a laugh, or a slight smile of agreement is one of the most honest statements I can possibly say about myself. I tell them “I love food. If I’m not hungry, I’m thinking about being hungry. And if I’m not eating, I’m thinking about what I’m going to be eating soon.” And I really do love food. I love everything about it. From deciding what to eat (though admittedly, sometimes this flummoxes me more than it should), to carefully selecting the ingredients from the supermarket, to chopping and slicing and cutting and grinding and adding and stirring and tasting, to the slop of a saucy dinner as it is transferred from spoon to plate and the sitting down, knife and fork in hand, taking a moment or two to admire whatever I’ve created. Then I adore the way I can dismantle each mouthful to pick it apart with my tastebuds and identify the tastes and flavours of the ingredients I took in their raw, individual form and made into a meal. The way food brings people together is one of my favourite things about the human race. Family meals on mundane Mondays, everyone crammed around a too small table on Christmas Day, trying a new restaurant with old friends, meeting new friends at an old favourite. These are the details that make up the tapestry of my love of food. There’s nothing I like more than inviting a friend around for dinner and feeding them a home-cooked meal. It is, in fact, probably my only maternal inclination (I have come to realise that I may well be lacking in every other department, genetic or societal, for what it takes to want and to be a Mum – but that’s a story for another time).

But so often women are castigated for an open love of food. A passion for pastries can lead to a squishy stomach. An often fulfilled craving for a casserole can result in rounded edges. A big appetite can lead to a loss of abs. And we are told that these things are not good things. We are told that women should be slender and perfect and not gluttons who eat too much food and need to learn some damn restraint. Far too many times I hear or see women withholding food they want, the food they deserve, from themselves because they don’t want to put on an extra few pounds here and there. They restrict their access to, what I believe is one of the purest pleasures in life – the taste of an indulgent pudding on the tongue; the warm fulfilment and comfort offered by a bowl of pasta, that no other food can offer in quite the same way; the satisfaction of giving into a craving every now and again, because it’s your body’s way of telling you what it needs right now. And it is that want that is important. They are choosing not to eat what they want because society is telling them that they shouldn’t.

There is so much darkness in the world and it feels to me like food is a light that we shouldn’t hold back from ourselves, for fear of us growing spindly and yellow like a plant growing in a dark box. We need to seek out light and joy wherever we can find it, and I genuinely think one of the first places we can find a bit of that light and joy is in the kitchen, at the bottom of a tin of soup, or even under the chicken breast on an empty plate at Nando’s. And we should, if we can, allow ourselves that joy, despite what society tells us we should be doing.

This piece came about as a result of a conversation on Twitter about the incredible food writing of former Bakeoff star and all round food hero Ruby Tandoh and other female food writers. Check out Ruby’s latest piece in the Guardian here and the conversation it led to here.