The Day My World Turned Upside Down

Today marks nine years to the day I was told the small subcutaneous lump I’d had removed form my right forearm a few weeks before was cancerous. It was the day my world turned upside down.

A few months before I found a the offending lump and was Immediately concerned, as it became painful and had grown over fairly quickly. When i visited my Oncologist in Oxford we decided that even though didn’t appear to be any real cause for concern, I would be able to have it removed if I wanted. I thought this was best as it was uncomfortable and unsightly.

Six months went by from visiting the team in Oxford to having the lump removed at Northampton General Hospital in September 2010. By this point I had graduated from University and moved to Windsor to start my first job as a graduate.  After I had the lump removed, I was told by the surgeon’s team that I would have to come back a week later. From my previous experience of having the cancerous mole removed from my neck five years before alarm bells began to ring. I gave myself a little pep talk and convinced myself it would simply be because i needed to have the stitches taken out. Looking back, I’m sure the surgeon who removed the lump could tell there was something wrong.

I’d had so many follow ups in clinic during the five years before that had come to nothing so I thought I knew what I was doing. The clinic ran late and when I finally got called in for the appointment I was asked to change into a hospital gown. I was on my own and the surgeon came in followed by a lady who I later discovered was a MacMillan) and I knew something was really wrong.

My memory of this meeting is a somewhat hazy. The surgeon examined my neck and arms for any other lumps. Looking back he was probably looking for any swollen lymph nodes. He asked if I had brought anyone with me to the hospital as I was on my own. I was told the lump was melanoma and it had spread from my original mole five years earlier. I was then swiftly booked in to an appointment with an Oncologist specialising in melanoma at Northampton General Hospital the next day. I’ve now been seeing the same Oncologist for nine years. That’s 3287 days!

Subsequent MRI and CT scans showed a single lung tumour and a single brain tumour. In the month that followed I went from being a seemingly well 23 year old graduate to a stage 4 cancer patient, registered disabled and unable to go to work, and facing the very real prospect of an imminent departure from the world. Talk about life throwing me a curveball

I am certainly not a statistic and me being alive and well and writing this post it as close to a miracle I will ever get. For me, September is a month full of various triggers and cancer related anniversaries, but October is just the same, closely followed by Christmas and Birthdays as well as Summer time, so in effect the whole year.

I have spent the past 14 years of my life as a cancer patient and next year marks a decade as a stage 4 cancer patient. Its a life sentence and some days I find the whole situation beyond comprehension. Being focussed on the now is much easier said that done with cancer demons floating above, ready to pounce at any time.

I was told upon diagnosis in 2010 that people with my type of cancer at such a late stage lived for an average of 18 months. There have been numerous points over the past few years when I truly thought that I wasn’t going to make it for much longer. It’s looked very bad for me numerous times and I know my family felt it too. I’ve been on sick leave from work and had to come to terms with the fact I might never go back.

Three and a half years ago I was in hospital, having had surgery to remove cancer from my bowel for the second time. I had hardly any hair of my own, and I was unrecognisable from my ‘old’ self. Now I look like the 2010 version of me, with a full head of hair and most of my cancer scars covered up. On the outside I look the same, but I am a whole new version of myself compared to nine years ago. My twenties were really exhausting and stressful, and I feel like I missed out of so much, relationships, work opportunities and generally having fun. So far the first 2 years of my 30s have gone better than the majority of the last decade. I am treatment free and my oncology appointments are currently kept to a minimum. I hope cancer continues to lay low and not dominate the next decade of my life. My world has been turned upside down but I’m living on the flip side and that seems ok for now. Keeping everything crossed for my scans in two weeks.

Dear 18-Year-Old Me

Within the blink of an eye another year has passed and I am almost 32! I am beyond grateful to have lived another year on this beautiful planet we call home. Who’d have thought I’d be happy about getting old?!  So far 2019 has been good to me, and my life has changed beyond recognition, having only stepped foot through the doors of Leicester Royal Infirmary a couple of times this year, for a PET CT scan and subsequent results. This is the stuff dreams are made of, and despite multiple daily reminders I am slowly getting used to being free from cancer treatment.

Over the last year I have been fortunate enough to travel a fair bit around America and Thailand; I also visited Cyprus in the autumn and have since been on a couple of city breaks Florence and Vienna, as well as various trips around the UK to Newcastle, Torquay, Nottingham and the Isle of Wight. Right now, it’s not all bad.

I’ve beaten the statistics in so many ways, I almost feel I don’t really deserve to be referred to as a stage 4 patient right now. Melanoma is being treated so differently to five years ago and currently I feel like I’ve been given a golden ticket and a chance of freedom.

Three years ago I was in hospital, having had surgery to remove a tumour from my bowel for the second time. I managed to get discharged the night before my birthday, but the celebrations passed me by that year. Five years ago I also spent my birthday in hospital, at the time I was admitted to St George’s Hospital in Tooting, South London for suspected appendicitis. It turned out to be my first bowel tumour, and I remained in hospital for ten days before being admitted to Leicester for emergency surgery. In July, once I’d recovered from the operation I began receiving Pembrolizumab in hospital every three weeks.

Who knows how the next year will go? At the moment it feels very promising, but nothing will ever be certain. With it also being Melanoma Awareness Month, I started to think what advice would I give to me pre cancer 18-year-old self if I could write them a letter about what was to come over the next 14 years.

Inspiration for this letter is taken from the 2011 video ‘Dear 16-Year-Old Me’ by the David Cornfield Melanoma Fund.

Dear 18-year-old me: A letter to my younger self.

Congratulations for making it this far! This is a big year; far bigger and more challenging than you will have ever known before. Some fantastic things will happen this year; you’ll pass your exams, your driving test (at last!) and go on a fun girls holiday. Despite this, you’re going to have a lot of shit to deal with other the next few years, so don’t sweat the small stuff.

When you hear the words ‘you have cancer’ and find out It’s stage 1 melanoma, please don’t panic. Its not nearly as bad as it seems (for now anyway). Melanoma is a type of skin cancer, It develops from skin cells called melanocytes. The mole you had removed from your neck was melanoma – A key piece of advice – don’t ever go to hospital appointments on your own again!

The next 12 months won’t work out the way you would have liked, you must remember not everyone’s path is the same. I know a gap year seems like the last thing you want right now, but it’ll all work out in the end. You didn’t want to go to university in Scotland anyway! Stop comparing yourself to your peers, it won’t help. All good things comes to those who wait, right?

The small scar from you mole removal will become a lot bigger, and more prominent. People will ask you about it; but don’t let it get to you. They won’t know how to react to your story and this won’t really change over the next decade. Embrace university life, believe it or not this part will be the calmest and least stressful of all.

You’ll find out you have stage 4 melanoma at 23, but you can handle it. You’re tougher than you think. It’s not an immediate death sentence despite what you’re told.

You will recover from major brain surgery, and lung surgery too. It’s a lot to take on, but your vision won’t be affected permanently, it’s always been bad anyway! Once you’ve had you lung tumour removed it’ll be seriously painful, but you’ll be able to breathe and walk properly again. A short post-surgery cropped hair cut will actually suit you. Thank Emma Watson for the hair cut inspiration!

Your life will be so so mentally draining and physically tough, but you will get there. Listen to your body and be kind to yourself.

Your friends won’t disown you because you are ill; it turns out this brings you closer together. You’ll still laugh with them like you did before cancer stole your freedom. You’re driving licence won’t be revoked forever, it’s not the end of the world. You will drive and have your own car again in a few years! Your friends will visit you when you are unwell and give you an excuse to get outside. Eventually, you will go back to work; you could’ve done with a bit more time off but you were being stubborn. Remember, part-time work is the way forward, don’t be fooled, only stupid people work full time!

Embrace your down time, you’re going to need it. Post brain surgery chronic fatigue will plague you for two years, but you will eventually get a handle on it. All will be relatively clam for the next few years and despite what it seems, your oncologist is capable of giving you good news as well as bad.

You will make a lot of new friends over the next few years who don’t care that you have cancer. It’s not what they see when they look at you, so please make sure to keep reminding yourself of that.

Like a boomerang, melanoma will come back again, this time in your bowels. Sadly it felt inevitable and you knew that. Try to embrace your scars, they tell you story of survival. You must remember that you cannot blame anyone or anything, it’s not your fault you have cancer. Anyone who tries to tell you differently can do one because they aren’t worth knowing.

When you start systemic treatment you will loose your hair, much of the confidence you’d built back up will be lost again. People will treat you differently now they can see you’re unwell. It won’t last forever, other treatments are been developed and believe it or not you’ll only wear a wig for two and a half years before you hair grows back. It sounds like a really long time, but just like your driving license it’s not forever.

You’ll feel close to death numerous times. You’ll write your will because you are sensible; cancer didn’t change that. You’ll have a lot of different treatments over the next four and a half years and by some miracle you’ll survive. You spend time  learning about treatments and how to pronounce words you’d never heard of  before. The NHS is incredible, be thankful. Always.

Eventually you’ll find the strength to tell you own story, and not feel so ashamed. You’ll write a blog, and be interviewed in magazines and on television to help raise awareness of skin cancer. Your story will inspire others so keep going. Talk to someone when you need to, its not a sign of failure or weakness. Just do what you need to do to get through the days / weeks / months and years living with this illness. Do all you can to raise awareness of melanoma and the important charities that have helped you along the way.

Stop worrying about what other people think and be yourself. You’ll make it to at least 32 and be alive for so many moments you thought you would miss. Tell people to cover up in the sun, repeat it over and over again and don’t stop; never ever apologies for it.

Just Live!

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”

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. 

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.