What A Difference A Day Makes

I had a very busy weekend, with a much anticipated theatre trip to see both parts of Harry Potter and The Cursed Child followed by a day trip to West Sussex on Sunday to walk from Amberley to Arundel with some friends.

I’ve been pretty busy over the past few weeks, including during the weekends, and felt like it all came to a head yesterday after I had my PET CT scan in Leicester. My body felt exhausted; I guess It was a mixture of aching from the walk, lack of sleep, lack of food as I was only allowed water prior to the scan, and a recently shoulder injury. Luckily, desipte not being able to be cannulated via my portacath the scan went ahead as planned.

I got worked up and anxious when I was told a nurse wasn’t available to cannulate me via my portacath. Previously I had been sent away from a PET CT scan after two unsuccessful attempts to put a cannula in my arm and had to come back another day for the scan to take place. At the time it was very distressing as I travelled to Leicester on my own for the scan, thinking I knew what I was letting myself in for. I’ve learnt that with cancer I never know what I am letting myself in for!

Over the past couple of years my portacath has been my saviour and I’ve not been to a scan on my own since. Fortunately, one of the radiographers managed to put a cannula in my arm on the first attempt so the radioactive tracer could be injected into my bloodstream. Considering how many times my veins have failed me I was pretty impressed. Now I have to arrange another visit to the chemotherapy suite for my portacath to be flushed (never a dull day!)

After the initial hiccup my scan went smoothly, I did my usual hour long wait once I’d had the tracer injected and then spent 45 minutes being scanned form head to toe. I am due to see my consultant for the results in the next month. Each scan comes with its own level of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago. As the months pass and I learn to live on my new ‘watch and wait’ routine I can’t help but feel like my world could fall apart again at any moment.

I felt really unwell after my scan on Monday and had to go back to bed when I returned to my mums house. I slept solidly for almost three hours, and it just goes to show what a difference a day makes.

Twenty-four hours earlier I was waking through fields with my friends, feeling energised without much worry, and within such a short space of time I felt like an invalid. When I tried to get out of my dads car when I got back I felt like I’d suddenly aged 40 years – walking seemed so difficult and I felt sick and exhausted. All I’d done is lay there in the scanner but it took so much out of me! It felt as though I’d just come home from treatment and my body was drained of energy.

I don’t often share the moments when I physically struggle online, because I want to focus on the positives, but also because ‘dear diary, I was exhausted so spent the day in bed’ doesn’t have the same ring to it. It hit me hard, but I need to keep my head up and keep going.

That ever changing 24 hour period was a harsh reminder of how fragile life with cancer can be. I am slowly beginning to feel better, after some research, Dr Google suggests I might have a trapped nerve which is causing shoulder and neck pain, so have booked in for some more acupuncture in the hope that the symptoms will be alleviated. I know I should really google me symptoms either!

A cynical voice in the back of my mind is linking the pain to disease progression, but I don’t want that negative energy to impact me. I haven’t had any other worrying symptoms over the last few months. Another part of me thinks my oncology team would ensure I get the results much quicker if there were any red flags from their end.

The next few weeks are going to be testing, and I really hope Scanxiety doesn’t kick in. It’ll be easier once I know where I stand so I can breath again.

Of Mountains And Minds

I was recently fortunate enough to to be invite by the lovely Caroline McKay to be a guest on her podcast Of Mountains and Minds.

Caroline began the podcast to help shift our culture to talking more about struggles and stigmas. She has interviewed a number of people who have been through/are going through major challenges in life. Conversations on the podcast have included depression, addiction and grief as well endurance challenges like Everest. You can listen to Caroline’s podcast on Soundcloud or ITunes.

The great thing about this podcast is that It’s not intended to send a message that after navigating major challenges everything is healed and happy-ever-after, which I highlighted In my last post. The idea is to highlight the difficult, messy and inconvenient realities of trying to move forward after something so life changing.

Caroline asked me to to talk to me about the everyday realities of my cancer diagnosis and carrying on with life both during and after treatment, as well as my experience with depression, all of which has been well documented on my blog. I’ve never been a guest on a podcast before, so I can now tick that off my list alongside tv appearances and magazine interviews which would never have happened without melanoma.

I will post again when the podcast goes live in a few weeks.

Trying To Live My Best Life

It’s well documented how hard a life with cancer can be for those going through it, however what seems to be less recognised is how hard life can be post treatment, not just from a mental health perspective, but emotionally and physically too. The past couple of weeks, for whatever reason, have felt especially challenging.

I am desperate to get on with my life and try to move forward, but having to balance this out with the expectation from others that I am doing amazingly makes it harder and harder to navigate. I’m forever living in an ‘in-between’ state from scan to scan. I am doing really well, but it’s not an instant ‘fix’.

Now I’ve been drug free for over six months I am slowly finding out what a life away from being a cancer patient is really like. I went to the GP yesterday for the first time in weeks, which feels strange considering my life revolved so heavily around doctors and hospitals appointments only a few months ago. Whilst this can only be a much needed and welcome change, it’s also been tricky to adjust to. I feel traumatised from the last 14 years of my life so it might take me at least another 14 to begin to move on.

I have been trying my best to take it easy, but also live life to the fullest as much as I can, and the two seem to juxtapose each other. It feels like I’ve been given a second chance in life I never thought possible but I’m not going to be skipping down the street in the rain anytime soon.

My friends would say that on the whole I am very positive, however it takes a lot of hard work to put my game face on. I still feel as though my life is restricted and will be short lived. I’m waiting for that lightbulb moment where the switch in my brain goes off and I start thinking otherwise, however I don’t know if it’ll ever happen, or if I’ll be able to find said switch.

I try my best not to think too much into the future, no one ever really knows what’s in store for them, and no future is ever mapped out to perfection. Recently I overheard a conversation on my commute with two people talking casually about future plans, which honestly made me feel scared for what may lie ahead. I still have the fear that I won’t be alive. I feel like I don’t know who I am without the cancer patient label. I attempt to push these thoughts to the back of my mind but it’s so hard, particularly when discussions such as this are frequent and often. The fear is what takes me to a dark place.

Over time I have learnt that nothing can ever be planned out like one would hope. I certainly don’t have a five year plan, It’s more like a five day plan to try and get through the working week and remain as sane as possible

A few weeks ago I finished my last counselling sessions and I currently don’t have any follow up lined up. I’m feeling ok right now, however I’m concerned about not having that outlet where I can fully speak my mind and not worry about judgement or upsetting others.

The phrase ‘Living My Best Life’ is thrown around so often, but for me this is it. This is the best it’ll get and it isn’t an Instagram worthy hashtag showing photos of me drinking cocktails on a beach. I feel like I am trying to balance on a unicycle, and if you know how challenged I am in that department when it comes to riding a bike, you’ll know just how difficult that is. Hopefully I’ll find a way to balance soon.

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!

A Spring In My Step

Over the past ten days I’ve started to notice a major change since the end of my cancer treatment. After approximately six months of being free from Immunotherapy, I’ve finally started to feel less fatigued, or at least I think I have!

I recently had a couple of weeks off work, which allowed for some much needed down time; it culminated in a trip to the Isle of Wight to see one of my friends get married. It was a fantastic weekend, full of sunshine and dancing and on the evening itself I didn’t get to bed until the early hours! I couldn’t tell you the last time that happened, and I’m not sure I could’ve done that a few months ago! The day after the wedding I felt exhausted, but in a different way to after hospital treatment. I felt really tired, but it certainly felt different to the extremely fatigued, glazed over sop-you-in-your-tracks feeling that I have been so used to. It was a great realisation that perhaps the long term effects of receiving cancer treatment might be fading slightly, therefore allowing me more room to breathe. Once I’d caught up on sleep, I felt really happy I’d danced the night away.

Despite feeling as though I have more of a spring in my step, I still feel broken by everything I have been through, and I know that feeling will never go away (or at least not easily). Over the past two years I’ve seen three different counsellors, had CBT and now take regular antidepressant medication and I am not sure my mental health will ever truly recover.

No matter how hard I try, I still have days where I am completely exhausted by the whole process of just living my life. It’s hard to navigate in this new world I’ve suddenly found myself in, I’m still baffled that I haven’t been to go to the GP in the past month. It’s literally blown my mind! This must be what other people feel like?!

I still live in constant fear of disease reoccurrence and I have frequent dreams about my demise, include finding out I have another brain tumour, or being in constant abdominal pain due to another bowel tumour. Sometimes I wake up and It takes me a moment to two to realise it wasn’t real after all. I don’t want cancer to define me, but it has been such a huge part of me that I am finding it hard to separate my life with cancer and my new regime without treatment. This is what I have dreamt and hoped for, but it’s much more difficult than I ever imagined it would be. I hope that in time I can start picking up the pieces of my shattered existence and start taking small steps forward again.

I haven’t written on much on my blog recently as I’ve been trying navigate in the new world I’ve recently found myself in, and hoped a blogging break  would help me to feel less like cancer is still ruling over my life. I do think it has helped, but I also find writing is a little like therapy, and helps in a similar way to my counselling sessions. 

I have a busy month ahead as I am due to celebrate another birthday in a couple of weeks. All birthdays are milestones for me, and I am very happy to be turning the glorious age of 32. My situation has changed beyond comprehension in my 31st year. Having been diagnosed with stage 4 melanoma with metastasis in my brain and my left lung at 23, it was a shock I made it to my 25th birthday, let alone my 30th a couple of years ago. I also never thought in a million years I’d seen the younger members in my family grow up, but two are about to enter into the adult world, and we had a new addition join our family at the end of last year, which has been life changing. These are life events I never thought I would be alive to see, and when I think about it, this makes me the happiest. I know I need to keep reminding myself of how far I’ve come and try to use this to my advantage.

I hope my energy levels continue to increase and get more plentiful as time goes on. I’ve already got the date for my next PET CT scan in July, so I am hoping and praying i continue to reap the rewards Pembrolizumab has offered me so far. 

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 highs (trips of a lifetime, new family members) and some 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.