The Truth About Depression

The truth about depression is that there is no one size fits all approach, it affects people in different ways; young or old, male or female, the experience differs for everyone. I have been experiencing depression in some form for a number of years and I can say with 100% certainty that cancer is the major reason why I feel the way I do.

As a society we tend to define happiness by some key factors; health, work, location and relationships. The idea is that if a person has all of these plates spinning at the same time, they will be content and happy, however if one falls that person becomes unbalanced.

I feel I live in a constant state of flux, only having stability in some areas means I’m loosing focus on what is good in my life, and small changes can feel like the icing on top of the cake, like all my spinning plates are crashing down and breaking into pieces all at once. On social media I keep reading the phrase “When life gives you lemons, make lemonade”. Turns out I didn’t get any lemons, but instead got given a pile of shit, and what do I make with that…a shit sandwich?!?!

As a cancer patient I need options, and I need hope that things will get better, and living with terminal illness has meant I’ve been frequently deprived of these, halting my ability to try and move forward with my life. I feel I am frozen in time, like I’ve heard there is huge storm coming but there isn’t anywhere I can run and hide for shelter. I am not asking for the world, just some hope that my life will get easier. I don’t aspire to look like the Instagram influencers I’ve never met online, likewise I don’t want to be paid a lot of money to travel from country to country documenting my life. I only want a life to live in the first place. I just want to be happier, I don’t think that is asking a lot.

Depression isn’t about feeling down for a few hours when I wake up in the morning, It’s the constant cycle of highs and lows and it becomes more obvious when I start having more bad days than good ones. A lot of changes recently have made me feel I am going through a particularly dark stage and last week I burst into tears because the warning light came on in my car and I only had an MOT and service a couple of months ago. Out of the blue something small acts as a trigger and I fall apart over and over again, but each time I put myself back together I am missing another piece. Of course, it’s not really about the car, however it becomes another issue that has to be sorted out, another reason why I feel I am failing. Depression is one extreme to another, I’m either high with happiness or feel like I am falling down and no one will be able to catch me. I believe the voice in my head telling me negative thoughts and leaving me feeling hopeless for days at a time.

Some days are better – for a split second I feel that maybe, just maybe I will start to feel human again one day. Depression is serious and ugly and affects so many people from all backgrounds and walks of life, it doesn’t just disappear when you’ve had enough, but manifests over time. I am not going to wake up tomorrow morning and decide not to feel hopeless because that isn’t how it works.

I’ve read books where people have said they have a new appreciation for life since they were diagnosed with a serious illness, that the small things in life become more significant. I don’t jump out of bed every day grateful to be alive singing happy tunes at the top of my lungs, and no one else does it either! I am constantly told I’ve been lucky so far, so feel I should be eternally grateful. It goes without saying that of course I know it could be much worse, but I don’t see others celebrating in some special way just for being alive. I’d be fine with my lifestyle and accept the all things I can’t have if I felt I had some element of control, and could potentially live a long and healthy life. It’s not easy to believe everything will work itself out when I’ve been fighting fires for the last eight years.

Currently It’s not one particular thing that makes me emotional, it’s the whole process of being a terminally ill patient. It feels like everything and nothing at the same time. I am an outsider in a world full of insiders and It’s no coincidence that cancer has affected the way my life has panned out thus far, and I’ve failed because of it and I’m constantly trying to look for answers in a world where they don’t exist. It has changed every single aspect of my life and each day there are multiple reminders thrust in my face which only serve to highlight exactly why I am depressed. It could be seeing my scars in the mirror, using my Freedom Pass or Please Offer Me A Seat badge to travel, my constant blood tests, GP visits, the struggle it takes to get myself out of bed and go to work, and the antidepressants I take when I wake up each day. I have been having what I like to call ‘mini-breakdowns’ over the last 4 weeks so I feel an adjustment of my medication is needed.

I am now at an age where 85% of my peers are getting married, having children and buying houses. Cancer aside, when I was in my twenties I felt I had a lot of close friends and allies doing similar things to me, but now I am the odd one out. It doesn’t feel so bad being in a group, but nowadays It can feel isolating. It’s so difficult not to compare myself to other people when I’m surrounded by what I am missing out on every single day, and I feel like I am a failure in comparison.

I feel like the chance at a future has been taken away from me, which is a major issue when in comes to relationships. How do I find ‘The One’ when I feel there won’t ever be anyone for me? Nobody could take on the burden of my illness, I don’t want someone to care for me, just about me, I want someone that can help pick me up when I am down. Having not settled down with someone in my early 20s I can’t give a man the future they deserve because I believe I wouldn’t be enough, and quite frankly feel I don’t deserve it. In reality my life is far from the disney fairytales everyone seems to hope for. The thought will always in the back of my mind that If I take a turn for the worst, would someone want to be there with me side by side until the bitter end? Not exactly the opening line of a dating profile. What I do know is how precious life is. It is fragile and uncertain, I know what it’s like to be told that cancer is in multiple organs and what it’s like to spend hours attached to a chemotherapy drug pump fighting for my life. I can’t bring someone in to that life.

I’m not angry at friends for being settled and having children, but am I sad for myself I can’t do that? yes 100%. I am only human after all, and although I don’t blame anyone for my sorry excuse at adulting it is extremely hard and unsettling right now. However, I don’t think of other peoples problems as insignificant to mine; I know people have awful times too which I could never relate to, and they aren’t less valid because they don’t have stage 4 cancer.

Being upset doesn’t mean I don’t want to see people and their children. However I have to acknowledge it is a challenge because my options are non-existent in comparison. I feel like an outcast when I compare myself to others, and I often need to do some self preservation, but I know it’s not other people’s fault. It would be easier to try and blame someone, however my life a series of unique and entirely unfair circumstances that I cannot control. Right now I am emotionally, mentally and physically exhausted and feel I can only pick myself back up again so many times before I collapse into a heap on the floor.

Cancer has a lot to answer for and sometimes I feel worthless, as though I’m running around in circles trying to catch up with my friends; but we are not even in the same race! My path is going on a different route to that of my peers who all seem like they are running alongside each other. For years I’ve been held back because of my diagnosis, so I guess It no coincidence that I don’t fit in. I only want a fraction of what other people have, just some stability and options in life. I don’t feel like I am asking for much. It is unsettling and frightening standing in my shoes without options, like being given a series of multiple choice quiz questions with no answers to pick from. 

Cognitive Behavioural Therapy

I recently came to the end of a counselling programme which focussed the talking therapy Cognitive Behavioural Therapy (CBT) to help me manage my depression and anxiety. I wrote about starting this journey in an earlier blog post, The Rough And The Smooth a few months ago.

I was initially referred for this treatment at the end of 2017 and I have been attending regular CBT sessions since April in order to help me manage my emotions and thoughts around my cancer diagnosis. It’s not easy to rewire your brain to think in a completely different way, but it’s helped me a lot, and I’m hoping I’ll be able to continue using the techniques I’ve learnt so that I don’t fall back into a negative thought cycle.

Over the past few sessions I’ve practiced various different techniques used in CBT,  one I’ve found particularly useful so far is Thought Challenging. This technique allows a person to look at a situation from alternative angles. By doing this I’ve started to consider things from a more objective point of view, rather than just assuming that my negative thoughts are the complete facts, so not necessarily about just thinking positively in a negative situation, which is often a particular challenge!

A simple example of this may start with a friend cancelling dinner because they’re busy at work. My irrational brain tells me that I am not important enough and worry they think I am boring or I’m constantly talking about my cancer diagnosis or my own issues, therefore I am not a good enough friend to them and they don’t want to see me. So many thoughts run through my mind about the reasons why they cancelled. Keeping a Thought Challenging diary has allowed me to weigh up the for an against and come up with an alternative thought. Now I can be more rational and recognising we’re all busy people, particularly when work comes into play. In the grand scheme of life its simple to reschedule for another time. It’s key for me to remember I am important and that I am lucky to have a lot of people around me who are always there to listen no matter what, even though some live thousands of miles away!

Through this process I’ve learnt that I tend to think in a very black and white way, (know as All-or-nothing thinking) which has had a significant negative impact on my self-esteem, happiness and relationships over the past few years. I’ve tried to overcome this by keeping a list of my negative thoughts and writing down different ones. I have to remind myself that this thought is extreme and in turn come up with one that is more balanced. Another example would be me calling someone and them not picking up the phone; I’ll start to panic that something really bad has happened to them, even though they’re probably just busy at that time. Similarly, if someone says they need to go to the doctors my mind will automatically worry they might have a serious health problem and I constantly fear awful things will happen to my loved ones

During my life with cancer I’ve been taking everything one step (or one PET CT scan) at a time. I’m often surprised I’ve not had a breakdown over the last eight years. Sometimes I get emotional and feel like I’m in full on mid-life crisis mode (I am now in my 30s after all) so CBT has been a great way to try and combat that! I’ve yet to try and revisit my youth, or buy a sports car,  so perhaps I’ve not had a my own crisis moment just yet! I always feel like cancer means ‘I can’t’ do things and there are so many other things ‘I should’ be doing. Thinking in this was is unrealistic and therefore I put too much pressure on myself.

Staying alive is on the top of my priority list, and despite all the challenges that have come my way I’ve succeeded so far. Although difficult at first, CBT has been a lifeline as it has helped me find was of copying with all the negativity my illness throws at me. I am now waiting for a referral for another type of counselling that I hope will help me move forward further. In my last CBT session I wrote down my future goals for the short, medium and long term and I’ll need to keep looking back at it to make sure I’m following my own advice. My first goal over the next six week is to try and maintain a more positive outlook, my recent promising PET CT scan results have been a huge factor, so here goes…

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.

The Rough And The Smooth

I used to find it so clichè when people described having cancer as being on a rollercoaster, but at the moment, it feels like one of the best ways to easily articulate daily life living with stage 4 melanoma.

In my previous post I mentioned that amazing news that my last PET CT scan results were stable. Despite this, I have felt very up and down over the past three weeks. Sometimes I find living with the side effects of cancer treatment can be harder that having the treatment itself.

Sadly the results don’t mean all my side effects from taking Pembrolizumab disappear over night, it’s probably quite the opposite as somehow I feel more aware of my body than ever before. Living with cancer has so many ups and downs, it’s mentally challenging and know from experience that the good news can change to bad very quickly.

Last week I dreamt I had five brain tumours, not one, but five! Negative thoughts like this will always haunt me, and dark clouds will follow me around wherever I go. I worry so much, particularly about getting a brain tumour. I had one removed when I was initially diagnosed with stage 4 cancer in 2010 so for me this isn’t an irrational thought.

Over the past few weeks I have been attending regular CBT sessions in order to help me manage my anxiety surrounding my diagnosis and the depression that comes with it. It is hard to accept that having been labelled as terminally ill it essentially means I am dying. It might not be today, or tomorrow, or in a month or perhaps even a year, but one day cancer will get the better of me. For all those people who suggest I could get hit by bus tomorrow and die instantly so I shouldn’t worry; trust me it is not that same thing. At the moment I’m taking each day as it comes, taking the rough with the smooth so to speak. When I’m in a negative spiral it can often take a little longer to ride out, even though I try to be a positive as possible.

According to the NHS website, Cognitive behavioural therapy (CBT) is a type of talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat depression and anxiety, and is based on the idea that negative thoughts and feelings can trap a person in a vicious cycle. The therapy aims to help people deal with problems that feel overwhelming in a more positive way, by breaking them down into smaller parts. Essentially learning how to change negative patterns and become more positive, looking for practical ways to improve a persons state of mind.

Through my experience so far I think CBT has been beneficial, however as I write this I am mid hospital appointment, having just broken down in tears. A hospital is the last place I’d ever want to be, but I don’t have a choice about coming to have treatment. Sometimes it’s all too much, even if the appointments are running to time. It’s not one particular thing that makes me emotional, it’s the whole treatment process. A classic example of a day which had been pretty unstable; I feel like I’ve experienced so many emotions in one afternoon. Hopefully tomorrow will be a better day and the CBT will continue to help me move forward living with cancer.

This July marks two years on current wonder drug Pembrolizumab and 7.5 years of living with stage 4 melanoma. Any tips on helping manage emotions would be much appreciated.