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!

Scan Results And Festive Freedom

Yesterday I received results from my last PET CT and MRI scans and I’m relieved to say that the results were good and everything continues to be stable.

After getting over the Scanxiety, I was feeling somewhat confident that the results would be stable, however the worry is never too far from my mind. Hopefully this means I can relax a little over the Christmas and New Year period.

I am fortunate enough to be having a chemo break and am not due back to see the oncology team at my hospital in Leicester for another six week. In my 2 and a half years of receiving Pembrolizumab this is a rare occurrence, and one I am especially grateful for at this time of year, fingers crossed this will be a blissful time of freedom over the festive period.

I haven’t written a blog post since The Truth About Depression three weeks ago. Part of me has been living in purgatory waiting to get my scans over and done with, and the other part has felt like I’ve not really got anything more to say. I haven’t suddenly snapped out of my downward spiral, but I am taking more steps to try and help myself.

I have now had my 41st cycle of Pembrolizumab and the fatigue seems to be hitting me more than ever. Lucky I have been working from home and resting which always helps, but powering through never feels like an option when it comes to post treatment tiredness. This is something I didn’t appreciate before I started having Pembrolizumab. A while back I wrote a post called Tired of Being Tired, which summarised my feelings on being physically and mentally exhausted. After reading it back, I feel the same as I did back then, annoyingly getting used to it doesn’t make me feel any less exhausted.

Exhaustion comes in waves, and when it hits it seems to affect my energy levels straight away. There is something about being in a hospital waiting room which makes me feel so sleepy, even with all the alarms and buzzers going off every few minutes. Having the treatment itself makes me become a total zombie, and I often struggle for a few days afterwards, making small things such as walking up the stairs or packing a bag seem like a huge struggle. I don’t trust myself to drive after chemo as my judgement certainly isn’t what it should be. I long to feel free and full of energy again, so perhaps having a treatment break over Christmas is exactly what I need.

A couple of people have asked me if I planned to celebrate my stable scans results. A few years ago I used to mark them as more of an occasion, but I honestly don’t think about them as a moment to jump up and down for joy. Nowadays I am too scared of what the future holds and I’ve been feeling particularly vulnerable over the past couple of months.

Of course I am so grateful to be in this position, even if living with cancer does take its toll, but I prefer to try and reset my mindset to one that isn’t in complete panic mode. I want to try and look forward to the next few months rather than just celebrate one moment. Hopefully I will feel less like I’m holding a poisoned chalice and perhaps as though I am holding a glass half full instead.

Fingers crossed for more good news in 2019. Until then I need to go back to sleep, rest and try to fight off a cold I think is coming my way as I’m a bit under the weather.

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.

The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

Loving The Skin We Are In

As I come to the end of relaxing few days away in Cyprus it’s dawned on me just how many people are dying for a tan, and will go to any lengths to get that sun kissed look all the holiday adverts suggest we should have. What happened to loving the skin we’re in and looking after it?

Last summer I wrote a post called Why Everybody Needs To Wear Suncream and for me these words will always ring true.

Wearing sunscreen on a daily basis is the best thing to do to keep skin looking youthful and healthy, but people do the exact opposite to get a tan, exposing it to the strong sunshine or tanning bed lights for hours on end. I know people who wouldn’t go out of the house without make-up and wouldn’t let their own children go out without sun cream on, however chose not to protect their own skin against UV radiation.

Sometimes It can upset me that people don’t take this seriously despite knowing about my Stage 4 diagnosis, particularly those who are close to me and have followed my journey. Strangers on sun loungers in Paphos can almost be forgiven, but part of me wishes I had a sign around my neck explaining why they should cover up. Something like, ‘Stage 4 skin cancer, spread to brain, lungs and bowel, dying to live, don’t die for a tan’. Might be a bit much though?

Our skin needs protecting just the same as the other organs in our body. We are all at risk no matter what climate we live in, but it’s certainly heightened when we holiday in sunnier climates. Just because someone has been wearing factor 20 or 30 all week doesn’t mean there skin is ‘used to’ the sun and they can then go without. By trying to tan quickly using a low factor SPF, people increase the risk of damaging skin long term.

My personal belief is that everyone should be wearing high factor protection. I didn’t get melanoma from direct sun exposure, and the desire for a tan, but for me wearing anything less than factor 50 would be stupid.

Over the course of the week I’ve seen so many people with bright red faces and bodies basking in the glory on the early October Mediterranean heat. Cyprus has been described as a year round destination, so I can see why people come here to get there summer sun fix, particularly before winter sets in. It’s painfully obviously that red skin is not a good look and doesn’t turn into a tan afterwards, it peels and flakes off and not to mention it’s painful too. I’m currently sitting on a sun lounger in the shade and can spot at least 5 people in my immediate vicinity with severe sunburn.

As someone who is fighting to stay alive I don’t understand why people see sun exposure and even getting a tan as so important. I’d rather been a pale Patsy than a red Ruth any day. But maybe it’s because I know how unpretty, heartbreaking and soul destroying a life with a serious cancer diagnosis really is.

A few years ago prior to my stage 4 diagnosis I watched a BBC documentary about people’s love of tanning with one of the signers from Girls Aloud called Nicola Roberts: The Truth About Tanning.

In the documentary, Nicola, a pale red head explore the culture of tanning amongst young women and men in the UK, and the extremes they will go to in order to obtain the perfect tan. She meets women whose love of tanning has become an addiction, using sun beds 5-6 times a week and someone who inject untested tanning-aid drugs bought online in the quest for the ultimate tanned body.

Even though I hadn’t had my stage 4 diagnosis at this point I remember crying to my mum whilst it was on television as It was far too close to home for me; one of the segments featured a mother who had a daughter who died from melanoma which had started as a result of frequent sun bed use. I cried as I told my mum that it could have been me that died from melanoma. Little did I know that my life would change forever as a result of the same disease shortly after.

Fake it, don’t bake it! Love the skin you’re in as the Oil of Olay (or Ulay) advert once suggested. You never know, protecting it might just save your life.

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…