Learning To Love Myself

I feel like I am under a constant storm of clouds right now, just trying to stay dry whilst chaos ensues around me. I’ve finally caught the cold I seem to always be on the edge of and I also have a chest infection so I’m feeling a little sorry for myself this week. I’ve been spending as much time as possible in bed, where I finished this post I’ve been working on for the past four days. Still, I’ve got a weekend away to look forward to which I am very excited about! I just want to feel well; like when I wake up in the morning I can tackle the day ahead, rather than struggle to get out of bed. Hopefully a dose of antibiotics will do the trick!

It’s been a year since I wrote my blog post Singles Awareness Day. As I am sure we are all aware, today is February 14th aka Valentines Day; this is a day when everyone focuses on love, relationships, red roses and pink heart shape gifts. Perhaps, if you are like me it makes you focus on the lack of the above.

The suggestion is always that one needs to be happy in themselves before looking for love. It’ll probably always be a challenge for me to learn to be truly happy and love myself (scars and all) before I can let my barriers down and let anyone else in. I need to feel better from the inside out, I’ve neglected myself a lot over the years and this needs to change. It’s not going to happen over night, but if I’m not happy in myself, I’m certainly not going to let a man get close to me. If I don’t feel proud of my achievements, how will anyone else? Self love sounds very cheesy, but if I cannot see the positives in myself others around me won’t either.

At 31, if you’re not settled down It appears as a society we question it. I think others must think there is something wrong with me, but there is! I have incurable stage 4 cancer! I still have single friends, but increasingly couples are settling down, moving house and starting families. Days like Valentines Day serve as a constant reminder I’m not at the same stage in life. My successes (staying well, managing to work full time) are not the same as my peers, these are a given for 90% of those around me, they are just ‘the norm’ for others. I’ve been told multiple times over the years that I am ‘not the norm’ and boy do I feel that now!

It’s time to stop being so harsh on myself, to stop judging; and stop putting myself under the microscope of never ending scrutiny. There is no point in comparing my life to that of my peers, we aren’t in the same place, and it’s not a competition.

It would be nice to feel like a relationship could be possible one day. As I always say, I would’ve liked the choice, but I feel its been taken away from me with my diagnosis. I know it’s even more unlikely if I don’t make some changes to my attitude. I’d admire the ‘like it lump it’ and ‘this is me’ attitudes of other cancer patients I follow on social media, but it’s just not me.

Perhaps I’ve met a man I could be with, but I’ve been too busy keeping barriers up and focussing on my health that I haven’t even noticed? The idea having a relationship still feels so unlikely; like a fictional version of my life that will never really play out into reality. Who knows! Despite how positive things are looking In terms of my treatment I feel deep down no one wants to be with a terminal cancer patient. In the back of my mind I feel I don’t deserve it because my cancer status doesn’t make me a worthy candidate.

To be honest, I wouldn’t even know where to begin. For the past nine years I’ve put my body through so much; including multiple operations and some brutal treatment options which have multiple side effects. Each leave their own harsh physical and mental scars and often it is too much to deal with.

In order to move forward I need to accept what I’ve been through, and hopefully learn to be happy in myself first and foremost. I am a huge worrier, I am am not sure I can be truly happy and content in myself when I often feel my body is trying to kill me.

Every day I panic things will take a bad turn again. Cancer has magnified fears I didn’t have before, however It’s goes without saying that it has also highlighted the strength I can find within to keep going. I must stop beating myself up over my diagnosis and worrying I could have changed things. In this instance it doesn’t always feel like time is a healer!

Here’s to waking up tomorrow and feeling more over the weather than under it! And a happy goodbye to the Valentines gifts and paraphernalia for another year.

“Self-love is not selfish. You cannot truly love another until you know how to love yourself”

Goals For 2019

I am not really a fan of new year, and setting resolutions, let’s be real, Its probably not going to happen, so why am I pretending! Like many years, I just hope I’ll be well enough to see the next one in! I have problems which I know cannot be solved, and trying to force myself to be someone new just because it’s a new year isn’t going to make those problems disappear.

I came across the below quote on instagram the other day and thought it summed up perfectly exactly what I should be focussing on over the next year and beyond.

“So, what if, instead of thinking about solving your whole life, you just think about adding additional good things. One at a time. Just let your pile of good things grow.”

2018 has been a year with some huge highs but also some massive lows. I think the whole ‘coming of age’ thing has been a huge part of my insecurities and I have really struggled with my mental health. As each year begins, I start to worry about the year ahead, and the challenges life may throw at me, both with or without cancer. It’s hard enough being a single 30 something trying to get by in life without having a serious illness to contend with. I have a GP appointment next week, followed by pre treatment bloods and then I am back in for chemotherapy mid-January. Although a Christmas break is much needed, it doesn’t take much for the focus to shift back to the dreaded C word. I’ve come up with a short list of things I am going to try and do to make life seem a little less daunting each day, just taking some time for myself to focus on non-cancer related successes or key moments. Not a resolution which will no doubt be broken, but key things to try and help me live my life as well and happily as I can.

Make regular lists of things that make me feel happy…and do more of them

This could be something small like going out for brunch with a friend or family member, calling a friend I’ve not seem or spoken to in a while, or going out for a walk and getting some fresh air. If I make a list then I hope I’ll put more effort into doing them again because i know they bring me joy. I used to be a huge theatregoer, having graduated with a drama degree before my stage 4 diagnosis, but I could count on one hand the amount of times I’ve been to the theatre (non work related) in 2018, and feel so out of the loop with what is happening in theatre land, even though I practically work in the West End. I need to put more of a focus on doing things for myself, no matter how small they may seem. I love the theatre so I want to try and add this as one of my additional good things over the next year. Not doing this seemingly obvious things makes me feel like I’ve lost my way slightly and in turn lost a bit of my personality. Do shout if anyone has any good theatre recommendations, both London and beyond.

Spend time with supportive people

It’s important for everyone to be around good people, or in situations where there is a lot of support. We need radiators and not drains in our life, a good friend of mine uses this analogy often and it really hits the nail on the head. Radiators are those who give warmth, those who gave something back to others. They naturally have their own problems and situations where they need support, but generally, seeing them, or interacting with them is a hugely positive experience. For me, these are the ones who lift me up and listen, those who make me feel better about the injustice of the world. Drains are the opposite; those who drain energy and take more from the friendship than they give and don’t always listen to others.

Be grateful

No matter how hard it seems we all have something to be grateful for, even on the darkest of days. I went on amazing holidays in 2018, which I am hugely grateful for. My trips in 2019 will be much smaller scale, but it was completely worth it and the experience will stay with me. Apparently those who take time to notice and reflect upon the things they’re thankful for can experience more positive emotions, it’s a no brainier really. Focus on the good! Being grateful doesn’t need to be reserved for big occasions, but simple daily activities that bring joy. Part of this also includes thinking more carefully about my use of social media, and be sure to use it for good, rather than comparing my life and my successes and failures to people online and feeling bad about it. I must remember I survived the last year and I am grateful for that. My ultimate goal is to stay alive!

Here’s to 2019!

Another Year With Cancer

Another year seems to have gone by in a flash! Christmas 2018 is upon us and I’ve been thinking about everything that has happened over the past year.

In some ways in been a quiet year in cancer terms, I recently had my 41st cycle of Pembrolizumab and all remains calm on that front. Luckily I have a break built in over the holidays and I am not due back at Leicester Royal Infirmary until mid January. Hooray!

My scan results in early December indicated all remains stable, which is fabulous news. It doesn’t mean I’m cured of cancer, or that I’m in remission, however it shows how amazing Immunotherapy is and that things are continuing to move in the right direction. I know my fourteenth year with Melanoma will continue to challenge and surprise me, but hopefully I can turn this in to more of a positive.

In the last twelve months there have been some huge highs (trips of a lifetime, new family members) and some massive lows (feeling overwhelming sadness for the life I feel I’ve lost, getting major FOMO, feeling left out and generally feeling not good enough for others). The stability of my mental health has been hugely challenging, and there have been multiple times where I’ve felt I had control of life; only to realise that I couldn’t be further away from feeling in control and it actually feels as though my whole world has come crashing down around me. Even as recently as last week! I haven’t felt as bad as this since I was first told I had a brain tumour over eight years ago. With another year looming I’ve began to worry about the year ahead, and the challenges living with cancer might throw at me. No amount of therapy or medication will make this disappear, but it’s slowly making things a bit easier. I know that I will have to continue combating my anxiety and depression in 2019 no matter what life throws at me.

In truth, I’ll never quite get my Christmas miracle of a cure for stage 4 cancer, but I can still dream. Deep down what really matters is spending time with family and people I care about during the holidays. Last January I started a full time job alongside chemo, and it’s meant down time has been less of a feature in 2018. That crazy thing is. I did it! I held down a full time job whilst having treatment for twelves months and I am determined this will follow through into next year and beyond. Often I don’t feel as that I have many ‘successes’ so to speak, but If I had to pick something I am most proud of in the last year, that would almost certainly be it.

As ever I’m apprehensive about the next 12 months and hoping it’ll be peaceful and calm.

Wishing everyone a Merry Christmas and a very Happy New year!

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. 

Living With Scanxiety

My next PET CT scan date is looming and my major fears about the future have reared their ugly head once again.

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to an imaging scan, during the scan and whilst waiting for the results to check for disease progression. I’ve read about the term a lot over the past few years as it’s frequently referred to within the cancer community.

Over the last eight years I’ve had countless scans; MRI scans, CT scans and PET CT to name a few. Each come with their own levels of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago! I spent the night before Christmas Eve in hospital as a result and it’s fair to say the day itself passed me by and I only woke to eat and went back to bed again as soon as I could. It wasn’t such a Merry Christmas after all. Now I am contrast free and go for PET CT scans every three months, which eliminates the use of contrast, instead using a radioactive tracer which I’ve so far had no issues with.

My anxiety levels have increased over the past few weeks, I’ll go from feeling fine to the brink of bursting into tears on the short walk from my house to the tube station on my way to work each day. I keep having nightmares about my diagnosis; being told Pembrolizumab isn’t working and there isn’t any more treatment that can help me, or loosing my hair again.

When you have cancer, all the focus is on physical health and trying to keep disease at bay. The constant cycle of treatments, particularly with invasive chemotherapy and Immunotherapy appointments over the past four years has meant its my full-time job. I worry often that my mental health suffers as a result, and it’s only in the past year or so I’ve really focussed on trying to get myself mentally stronger. Lately I’ve been feeling as though I am having a bit of a midlife crisis, and dealing with cancer daily is more than I bargained for, more on that in a future blog post!

Despite me being a ‘lifer’ in cancer terms it seems I would be used the routine but in reality it doesn’t make the multiple appointments any less worrying. The ridiculous thing is that regardless of me loosing sleep or not, the outcome will still be the same. What will be, will be after all! What I know is that it is something that consumes my mind from the moment I wake up until I go back to bed at in the evening, there is no rest.

I have been feeling sick and suffering from headaches, which I’m sure are a sign of the worry and stress, or maybe I just need to eat breakfast when I wake up. My experience means that my mind jumps from headache to deadly brain tumour in a instant. I know all the signs because I’ve been there before, so have had a couple of acupuncture sessions in the hope some tension will be relived.

The next few weeks are going to be testing. I’m wishing time away again so I know where I stand.

Seeing Scars

The clocks have gone back and right now I’m feeling grateful for winter coming our way. I don’t want it to be freezing cold all the time, but like many people I’ve started feeling the need to hibernate as the days get shorter and it gets dark so early. The colder days give me a good excuse to say no to things without being questioned. After work I want to get home as quickly as possible and hide under my duvet and escape from the world.

The winter months mean its easier to cover my many scars from surgery and cancer treatments with high necks and warm layers, which I am very grateful for. My scars tell a story, a huge narrative within my life, often they are scars that no one else sees or notices, but I know they exist and they get me down a lot. I have multiple scars all over my body, including a large one on my neck form my original melanoma site. Often, when I tie my hair up I worry other people will notice and stare at it, or ask questions about how I got it. My scars make a feel vulnerable and despite being 13 years old, the one on my neck is still prominent, and its the last thing I would want to talk about.

As human beings we are a curious bunch (aka nosy) and over the years there have been a few incidents where I have been asked about the scar of my neck by total strangers. Needless to say I’ve not been impressed by this! Another memory that sticks in my mind when I saw someone from school on a night out when I was back from university for the summer, they saw me and said; ‘what the f*** happened to your face?’ I’m not quite sure I knew how to react, but one of my friends quickly jumped in and told the person in question where to go! Firstly, It’s not my face, its my neck! Secondly, what a way to make someone feel terrible about themselves and shatter the little confidence they had left! Years have passed and I’ve not seen that person since, but the memory is still vivid. Clearly they weren’t taught tact and manners growing up – who does that?!

My hatred of my scars will always be there, during my holiday to Thailand in the summer I noticed some spots of vitiligo getting progressively worse; this is one of the side effects of taking Pembrolizumab, so I know I shouldn’t let it get me down, but it becomes another reason to dislike what I see, and it’s something else I cannot control, like all the other ugly marks on my body. The majority of my vitiligo is on my torso and my thighs and legs so it isn’t easily spotted by others, but I know its there and it certainly has an impact on my confidence and what I choose to wear.

I try to overlook my scars when I look into the mirror, but they’re not easily missed, I am able conceal some, but others are too noticeable or in too much of an awkward place to hide. In some ways I should be proud because they tell a story of everything I’ve been through to stay alive, they should be constant reminders of how strong I am, but the person I now see in the mirror is totally different version of me. In reality I hate my scars and the story they tell.

I’ve been thinking about getting a tattoo for some time, possibly over my portacath site. I got one inserted two years ago after numerous issues with my veins meant it was getting more and more challenging for nurses to successfully cannulate me for chemotherapy.  Despite being discreet and easier to manage than the other options, my portacatch protrudes slightly from my chest which I find ugly. When I have dark days I wish I could rip it out of my chest, like the scars and vitiligo it is another physical reminder of my diagnosis. I am not sure what tattoo I would have, it’s just be an excuse to cover up something I hate. Maybe I’ll become addicted and get them all over my body! I had my eyebrow tattoos done around two and a half years ago and it was one of the best decisions I made at the time.

All the scars remind me there is an unwell person staring back at me and I constantly have to dig deep for the strength to keep going. I don’t want all the scars to define me, that’s not who I am, but sometimes its hard to get past. It’s more than just the physical effects, but it’s the psychological ones too. Cancer has changed every single aspect of my life and the scars are a permanent reminder of my lack of control.

The various systemic treatments I’ve received over the past 4 years have shattered my confidence, made me loose my hair and eyebrows, made my skin itch and become sensitive, made me sick to my stomach, hardened my veins and kept me awake with fear and worry for hours and hours on end. They have fundamentally changed me as a person. My scars will always be a reminder of just that. I need to learn to embrace them, right now all I feel is sadness each time I catch my reflection in the mirror. All I see are my scars.

Standing Up To Cancer

Friday evening saw the annual Stand Up to Cancer telethon air on Channel 4. The night is a televised fundraising campaign between Cancer Research UK and Channel 4, that aims to bring people together to speed up progress in life-saving cancer research. Stand Up To Cancer donations help to fund research, which takes developments in the labs and accelerates them into brand new tests and treatments for cancer patients.

The charity telethon concluded late Friday night with the public in the UK having raised an incredible £24 million for cancer research and support, this is a huge £8.6 million increase on the £16 million raised two years ago. What incredible figures! It’s certainly shows the power of television and social media in raising awareness. Some of the patient stories were very emotional and hard hitting, it’s often to strange to think I am one of them, with my place in the stage 4 cancer club fully cemented.

The evening also saw TV appearances from You, Me and the Big C podcast hosts Debs (aka Bowelbabe) and Lauren (aka Girl vs Cancer). It’s great that they are continuing to break down barriers around cancer and the way it’s spoken about. I’d highly recommend the podcast they created with Rachel (aka Big C. Little Me.) for anyone who is unfortunate enough to be going through something similar.

I am debating taking on another hiking challenge next year, and watching parts of the Stand Up to Cancer programme has made me more determined to continue to raise funds and awareness despite my current injury. I have tendinitis in my right heel (most likely triggered from previous challenges including my most recent half marathon). The next trek isn’t until April 2019 so hopefully I’ve got plenty of time to get treatment on my ankle and get fit in preparation to take on the Jurassic Coast trek with Trekstock. Now I know what to expect from the last challenge I’ll need to take on some serious training this time around, perhaps some personal training and HIIT classes as well as waking. Anyone want to join me?

Although I participated in regular walks last time I don’t think anything could have prepared me for the reality of how mental and physically tough the whole weekend climbing the Lake District 5 Peaks was. I was a complete wreck! Still, time is a healer and I am ready for something new. I am determined to keep on standing up to cancer and carrying on as best I can.

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 Results Are In

I have now been sharing my story via my blog for almost two years, and luckily in that time have also remained stable on my latest Immunotherapy drug, having had my last major surgery in the summer of 2016.

This week is also very significant as it marks exactly 13 years since I was initially diagnosed with stage 1 malignant melanoma via a mole on my neck when I was only 18 years old. I have now been living as a stage 4 patient for almost 8 years. I was told back then I may not make 25 and now I’m 31, struggling sometimes but I keep picking myself up again. Cancer has been with me my whole adult life, which is something I don’t think I’ll ever be able to accept.

In some ways my stage 4 diagnosis seems like a lifetime ago, but in others not much had changed. Not long after I had started recovery from surgery to remove my brain tumour and lung tumour I moved to London and went back to work. I’m still living with friends in the capital city and attempting to navigate the working world as best I can. Around three years ago I moved form South West to North East London, so it almost feels like a new city, having discovered parts I would never have seen before.

I still get caught up in the moments when I feel well, and then book in too many activities, so last weekend I spent a lot of time relaxing and napping in preparation for the week ahead. I had a chest infection and needed antibiotics, which I think have since cleared everything up. I need to be on good form for the Northampton Half Marathon on Sunday to raise funds for The Lewis Foundation.

I had a PET CT Scan last week and travelled to Leicester to get the results yesterday. I am delighted to say my news was all very positive and takes the pressure off over the next few months.

However, no matter how many times I’ve heard positive news over the last two years there is always the fear my world will fall apart again at any moment. In some ways it feels like I’ve been given a golden ticket, but tomorrow I could find out it’s actually fake after all. I am of course relived, but the fear doesn’t disappear over night.

I’m now very used to the three weekly routine and cycle of my treatment, in way it has become staple part of my life up until this point. Travelling to and from the hospital gets me down, it’s mentally stressful and physically exhausting, but it’s nothing if it means I have a functioning life the rest of the time. I need to try and shift my attitude so that I am ‘living with’ cancer rather than all the negatively that plagues me about dying from it.

Here’s to LIVING!

Wishing I Was Anonymous

As I come to the end of my two week holiday I’m looking forward to getting back into a routine. As much as I love being away and exploring new places there comes a point where my fatigue kicks and I am ready to rest in my own space and sleep in my own bed.

One of the best things about being on holiday is being anonymous. I travelled alone for seven days after my friends wedding; a whole week where nobody I encountered knew anything about my personal life, to them I was just an ‘ordinary’ person travelling alone, but for me the trip meant more than that. I didn’t have to feel the need to explain myself wherever I went, which was a welcome break for me. I’ve spent the last year worrying that my illness would mean that somehow I wouldn’t make it on to the flight. When I first booked the trip I kept thinking that if I die in the next year, would my family be able to get the money back I’d paid so far?. Morbid but true!

This holiday helped my realise I need to try and stop letting cancer define me. Like it or not it happens to me every day. I can be who I want, sometimes it isn’t always possible, but there are occasions when I can be completely anonymous and free from the poison chalice that is my terminal diagnosis. Even if it’s for a few hours it feels so nice to feel I fit in to the crowd. Looking well is a huge bonus in this situation as there are no questions asked. I enjoyed being a typical tourist exploring a new city.

For the first few days of my solo trip cancer was very far from my mind, however a few days in I received an email confirming my next PET CT Scan at the end of the month, so I am back in purgatory for the next few weeks whilst I play the quarterly ‘will or won’t my cancer be stable’ waiting game. You’d think after almost 8 years since my stage 4 diagnosis and approximately 4 years of active treatment I’d be used to this, but I’m not!

During my trip I noticed some spots of vitiligo getting worse, which I think could be down to overall sun exposure whilst away. Although I wear sun cream constantly I spotted a new area appear on my neck which made me feel really low. This change in skin pigmentation is a side effect of my treatment. Most of my vitiligo is in my torso and legs so not easily spotted by others, but the new area, along with the huge scar on my neck from my original melanoma is much more obvious. I also had a couple of nose bleeds, but I think this is likely to be down to the huge head cold and sore throat I got whilst in Chiang Mai.

When I look in the mirror I see I scars or marks of cancer treatment at every angle, the mark on my neck is another to add to my collection. I have scars on every part of my body from different operations, some more obvious than others; I have a protruding portacath for my immunotherapy treatment, vitiligo, raised scars, tattooed eyebrows and a slightly lazy eye. I had the last eye as a child but it got progressively worse again a couple of years ago so I had it operated on for the third time. The surgeon told me he thought it was very divergent considering I’d already had surgery twice, and the shift could be down to optical nerve damage that may been cause by my brain tumour a few years before. Although this is not necessary why, I can’t help but feel my tumour had something to do with it, because nothing is ever simple in my world. My left eye still remains slightly lazy, another reminder of all the crap I’ve had to go through. I so wish these things didn’t have an impact and I didn’t care, but I really do.

I should look in the mirror and be proud of my body, I know this because it has been so strong and fought back at every opportunity, but there are days when its difficult. The last few days have been hard, with no one there to help distract my thoughts about plans for the day or if the breakfast in the hotel will be good.

I really try not to let cancer define me, not to let it win, and It’s certainly not going to destroy me. When I feel low and depressed its not necessarily one particular thing that I can put my finger on, but a combination of the whole living with cancer package that throws me into turmoil. It’ll be something seemingly small, such as spotting the vitiligo earlier which will push me over the edge and then makes me feel down again.

All the scars and marks remind me there is a extremely unwell person staring back at me. That person is asking for the magic cure to fix everything. I have to dig deep for the mental strength to and carry on, only wishing I had the answer my reflection is looking for.

Being positive and picking myself up each day isn’t always simple, I try to see the good in situations and hope one day I’ll have the answers. I want to feel happy but it isn’t always the case. It goes without saying I’ve had an amazing couple of holidays over the last few weeks, I had a chemotherapy break, so when I go next week it’ll be the first time in six weeks, which is a rarity. America and Asia have been so much fun, but my reality is still the same as it was a few weeks ago, and it’s always hard come back from a good place mentally knowing it’s going to be a bumpy ride.

Can I go back to being anonymous please?