Post-traumatic Stress Disorder

A couple of weeks ago I had my second PET CT scan since adopting a ‘surveillance’ approach to my stage 4 cancer in January this year. I am now playing the long waiting game and am not due to see my consultant for another two weeks.

I have so many reservations about this, but I know deep down (or at least I think I do!) that if there were any hot spots coming up on my PET CT scan I would be called in earlier to see my oncologist. I’m now an outpatient, so currently not seeing my oncologist and his team nearly half as much as I have done in previous years. It feels strange to have let go of the stability of having the hospital on speed dial and trust that the people who have been keeping me alive for the past decade are still doing the right thing.

I almost feel abandoned now that my appointments are few and far between. It feels like trying to ride a bike without stabilisers for the first time without any instructions. The anxiety and fear around this will never leave me, but hope in time it’s easier to cope with. It’s become apparent to me that I am suffering from some PTSD, aka post-traumatic stress disorder since I found out I had stage 4 cancer.

I haven’t officially been diagnosed, but I think that most of people who have a cancer diagnosis must suffer from PTSD at some point; life changing events such as surgery and chemotherapy are bound to have an effect. Some of the side effects induced by particular treatments might lessen in time and become less severe, but even the diagnosis itself can be earth-shattering and seems like the perfect place for PTSD fester. I know I have suffered with this for a while, even prior to my Immunotherapy finishing. Thanks cancer for giving me something else to deal with!

I am still in disbelief that I am not on treatment right now. I’ve had trouble coming to terms with this, even though I hoped and prayed for it for years it doesn’t feel like I expected it to. It would seem that cancer is the gift that keeps on giving!

I’ve been open on honest on this blog about my struggles with anxiety and depression over the years, and have only come to recognise this fully more recently. I kept kidding myself that I should be grateful my cancer is treatable despite being stage 4. Living with cancer, palliative or not is one long nightmare!

Over the years I’ve noticed the increasing number of PTSD triggers I have that I can’t seem to control. I’m never going to forget I have melanoma; but some sights, smells and sounds remind me of the multiple hospital trips and specific events such as major operations. My mind is constantly taking me back to moments that will be etched on my memory forever more. Certain triggers cause me to suffer vivid flashbacks that are often deeply distressing and sad. Not a day goes by that I don’t think about my diagnosis and the impact it has on my life.

There are so many misconceptions when it comes to PTSD. People reading this might suggest that I should move on and try to get over what has happened. But I’ve suffering from anxiety and depression around my illness for so long and having PTSD isn’t a choice. I can’t ‘just get over it’ when it impacts my life so much.

Back in 2010 when I got told I had brain and lung tumours I suffered emotionally in private, I wasn’t ‘out’ on social media like I am today. I deleted Facebook for almost a year and didn’t use any other social media platforms back then. Over time I’ve tried to stop feeling guilty about the way I feel as I know have been through a lot, it’s pointless and detrimental to me to pretend I haven’t and that its not been a struggle.

Talking about my situation helps immensity, but in the past I have often kept things quite from family and friends because in some ways only other people who have had cancer can fully understand. I don’t want to make others sad or reminded that they could be next, so for a long time I suffered in silence and put on a front.

Sadly a life with cancer doesn’t end when treatment ends. I can’t wait to gt my scan results out of the way and hopefully my PTSD symptoms will die down for a while and I’ll have some space to breathe.

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.

Blue Monday

According to reports, a combination of bad weather, post-Christmas financial struggles and failed new year’s resolutions make today the most depressing day of the year, aka Blue Monday. This is the day when we as a nation are supposedly the most miserable; the nights and long and the days are dark, and its still a week until pay day! Understandably, all these factors contribute to feeling a bit low at this time of year, however I read that the term was originally made up by a travel company as a gimmick to sell summer holidays a few years ago. Interesting!

As my treatment cycle takes place on a Monday, I’ve had my fair share of my own Blue Mondays over the past few years. My low feelings are not dictated by a formula, or specific date in the calendar so I’m not sure Blue Monday is as legit and some make it out to be, however it can only be a good thing if it encourages people to talk about feelings and therefore acts a chance to break down stigma and in turn raise awareness of mental health issues. I’ve made no secret of my struggles over the past few years, but more specifically over the last 18 months.

I’ve not written a blog post since the start of January, mainly because I haven’t felt like I’ve got much to say, but I’m also consciously trying to cut down on my technology and social media use, particularly during the working week. While social media is an incredible tool, sometimes aimlessly scrolling through apps doesn’t help my my mental state, and I am sure I am not alone in that. It’s certainly not one to help on a Blue Monday! As I wrote my previous post Goals For 2019, I am trying to shift the focus to doing more of the things I enjoy, such a cooking and socialising.

Yesterday I made two dishes for the week; a leek, potato and pea soup from a recipe by Jamie Oliver, and Deliciously Ella’s warming winter curry recipe. My week feels more manageable if I’ve done some prep which means I don’t have to come home and think about what to cook for dinner. I find the working week tiring enough! I’ve enjoyed doing a bit more baking recently and I also made some very questionable looking (but very tasty) cinnamon rolls. Baking was about the only activity I took part in when I was living back at home after I had my first operations to remove an brain tumour and lung tumour around eight years ago. It was something creative I could do without the need leave the house. Encouraged by my family, baking a cake gave me a goal to aim for and I found solace in this solo activity. The first recipe book I was a given was the Hummingbird Bakery Cookbook and I’ve gather a collection of books over the years, from Mary Berry, 15 Minute Meals to Part-Time Vegetarian to name a few. For Christmas I was given two new books, New York Cult Recipes and The Little Swedish Kitchen.

As well as being organised for the week ahead I’m going to go for a walk this morning to go to a local cafe on my way to the gym before going home to work. Nothing says Happy Monday more that a nice little treat too start the week. I know there will be plenty more Blue Mondays and down days to come, so making the most of the good days when I feel well in myself is really important.

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.

Facing The Chop

I’ve been lucky enough to have my own hair (minus a wig or extensions) for almost 9 months. I can’t get over how much it’s grown, it feels like the old me, circa 2008 is back again. Now I’m 10 years older but quite possibly not any wiser.

Since my regrowth I’ve wanted to let my hair grow and not touch it at all, and I’m faced with a huge anxiety about facing the chop. Why would I want to cut my hair when loosing it meant I had so little confidence? I spent countless nights crying myself to sleep and moaning to my friends about my lack of hair and subsequent ‘cancer patient’ hair styles that it seems like cutting it would feel like going backwards. I now have a full head of thick hair but the confidence is still hugely dented. It’s one of the many things around my illness which causes me anxiety.

When I initially started systemic treatment four years ago I was told to my relief I wasn’t going to loose my hair. After various changes in treatment I did end up loosing the majority of it, with what was left turning into a frizzy afro texture.

First I had to get used to the fact I was having treatment but didn’t look conventionally unwell, then I had to get used to obviously looking like a cancer patient. I finally did this and managed to embrace wearing a wig, after all I had straight, neat hair for once in my life so tried to see that as a bonus! I also lost all my eyebrow hair so got tattoos so I could feel ‘normal’. Then, with more hair changing I got extensions, which aren’t as easy to manage as one might think. Now I have to get used to the ‘old me’ making an appearance, only I’m not that person anymore, I’m a completely new one still undergoing treatment, however to a another person in the street I look 100% healthy. It looks much harder than it seems.

When my hair started to fall out I wasn’t mentally prepared, I didn’t expect it so I was really shocked. I thought it might just be a little bit, but when the bath plug hole was so blocked the water wouldn’t drain properly I knew I was in trouble. In one way I thought if I really believed my hair wouldn’t fall out then somehow it would all be ok. Given the original advice given I failed to buy a wig in advance in preparation.

During some of my worst times I used to dream about having long flowing hair again; and being able to tie it back. I’ll never take that for granted but now I have it I really don’t want to let go.

I now have more than enough hair to colour and cut into any style I want, but I can’t face it! My hair could do with a little refresh and a couple on inches off the bottom but it feels like too much too soon after my original trauma, it took so long to grow back after all.

At the moment, I feel ok that it’s a bit of a mess because it’s all my own hair, I’m never going to get a medal for best hair style, but I really don’t care. I know I’ll have to face getting it cut in the not too distant future, but I want to hold onto the growth; to this moment of success within my treatment journey, it’s a small win, but it’s a win all the same.

Has anyone else felt the same about hair cuts post chemo growth, or is it just me?! Perhaps in the future I’ll change drugs and it’ll fall out again, so I want it for as long as possible. I know it’s slightly illogically, completely irrational and silly of me, but having cancer does strange things sometimes!

Confidently Speaking About Cancer

It seems that for the most part I can write blog posts about my feelings, even speak on national television about my cancer journey, but often when It comes to smaller settings, or even a one-to-one, I clam up and become emotional. Having cancer has affected my confidence in so many ways, it varies each day depending on how I am feeling.

I can struggle to express things to friends and family, often just opting for telling people I am ok, but I don’t mind frequently sharing my thoughts online for anyone who wants to read. I don’t quite understand why I react in this way. Perhaps because some forms of sharing feel like the are more for the ‘greater good’, and could help others as well as myself, so somehow feels more worthwhile. In some ways I feel more detached from my story, but if an individual asks me about my hospital visits, even if I know them really well, I start forming tears almost instantly. My confidence levels can change daily, I certainly don’t feel confident when I am having my treatment on the chemo suite surrounded by lots of other unfortunate people. During one of my recent visits I had what I would describe as a breakdown moment. sitting in the chair waiting for my drugs to arrive I became overwhelmed with negative thoughts and burst into tears. Life is unfair, it really is, I needed a good cry that day, but no amount of crying will change my situation. One of the nurses kindly pulled the curtain around the area I was sitting (not that a flimsy blue curtain is at all soundproof) and went to get and get my mum who was in the waiting room.

A friend asked me a few months ago if I had considered filming a blog or starting a podcast, but the idea scares me much more than writing things down. With a vlog or podcast it is different; I feel I would be judged in so many other ways, and feel as though I wouldn’t have anything new to say. What if no one watches it except my parents, and, if people do, I fear it won’t be interesting or engaging enough. Vlogging or creating a podcast seems like a bigger investment somehow. Who really wants to know what I did on a day off? I also don’t like the sound of my own voice; it is my voice however, and it isn’t going to change, so I should just be comfortable with it. I also have a lot of scars, including a particularly huge one of my neck form my original melanoma site, so the thought of creating a video where I am the subject feels strange to me. When Sue Bourne and he team filmed me for A Time To Live they followed me around for a few days, I got to know the small crew and felt secure with them. I still think I look odd and slightly uncomfortable on camera though!

If someone was asked to describe me I’m not sure what they would say; in some ways I’m confident, but in other ways I feel cancer has crushed my confidence and I can’t move forward. On the outside I seem fine, but on the inside it can be a different story. My fear with vlogging would be that others would be hoping to see a happy person or hear encouraging words on how to be powerful and strong and brave, but I often don’t feel that way. People want to see positive stories, but what if I can’t give that? Not every day is a good day, I try to muddle though as best I can.

I’m often happy with my own company, or having the house to myself for a night, but cancer is a lonely place, and I don’t think I benefit from having down time, as it’s gives me too much room to think. Towards the end of 2017 I felt I was in a dark place and was prescribed antidepressants which I’ve now been taking for over six months. This has helped take the edge of and feel like I can still get through a day unscathed. Often, if I am around people I trust and love I can be the most chatty person in the room, but put me in front of  new people and it is a different story all together and my confidence is non existent. Ultimately I am just me and I should accept it, but cancer has changed me forever in so many ways, and I can’t go back to the younger, carefree, drama student version of myself.

The Struggle Is Real

The never ending struggle of living with stage 4 cancer is very real, and sometimes it appears that I am coping really well, even when I am not. Recently I have had to accept that I need a bit of help as I haven’t been doing well over the past few months. Late last year I felt I was in a dark place and was prescribed antidepressants by my GP.

Being surrounded by positivity and wonderful people helps a lot, but it’s ultimately not a solution. Cancer is lonely and isolating, which means I struggle with my diagnosis daily. As I’ve mentioned in previous blog posts I frequently feel very lonely and I am not ashamed to say I cry about my situation often. I have points where my judgment is clouded and I struggle to see the positives, as they hugely outweighed by the negatives. Who wants to wake up in the morning thinking about their impending death? Melanoma is a death sentence which I cannot change.

No longer having the typical visual side effects of cancer and holding down a job may sometimes mean people don’t realise how much I am struggling to get by. I think I often make it look easy, I look well but I don’t feel well. This is by far the hardest thing I have gone through, and will ever go through during my lifetime. Unless you’re in my shoes it’s hard to truly relate. Of course, I do have good days where I feel like I’m powering through, and they feel great, but increasingly they are few and far between.

It’s my priority to feel well in myself, but sometimes my lack of control means that isn’t always possible. I try to try forget my woes, even if it’s just for five minutes in a day. I have a new job, and am starting to focus on my new challenge, the Lake District 5 Peak Challenge with Trekstock in April. I have been making the most of being in London and having down time, rather than trying to do too much, which I wrote about in my last blog post Finding My Focus. I have made an effort to go to my favourite local places, go to the cinema, or listen to my current favourite music (The Greatest Showman and Hamilton soundtracks are amazing!).

There are times in the past when I could have taken antidepressants, such as when I had surgery to remove my brain tumour eight years ago, but I just focussed on getting through each hospital appointment. These tablets ultimately won’t make a difference in terms of how Melanoma affects me, but they have started to help me feel less like bursting into tears every five minutes. The injustice of the world upsets me often, and it all comes back to my lack of control or choices I have in my life. This is one of the reasons I choose to raise money for charity when I can; often unless something touches someone’s life personally they may not think about trying to raise funds, but I’ve seen first hand gaps in the support system for patients, and the astronomical costs of life extending cancer drugs on the NHS.

When you look at television adverts or posters, cancer patients are often seen in a positive light, overcoming illness and defying expectations. I guess this is meant to reassure us that cancer can be beaten by everyone, but it is often hard to comprehend the true reality. So far, taking antidepressants has made a significant shift in how I feel; I still struggle every day but the sadness and frustration feels less overwhelming. It seems there can be a stigma surrounding taking antidepressants, but It is clear that I need a little help at the moment.

I have been feeling depressed for several reasons. The most prevalent feelings being that I am scared my cancer will no longer be stable, and I will suffer immense pain and die. I also know it is such huge factor in my life an there is no ‘putting it all behind me and moving on’. After all, I am still  having treatment and getting scanned every three months, and will never be cancer free, it will always be part of my life. I am not trying to be attention seeking, I am just trying to be honest about the realities of life with a terminal cancer diagnosis, its important to know that the struggle is real. Very real.

The Season Of Good News

Following a recent report from Macmillan, there have been a series of articles in the news over the past few weeks stating that there are now thousands of people in England who have the most advanced cancers, and that they now surviving for several years after their diagnosis. There has been a lot of coverage in the news, for example on the BBC and Guardian websites.

The research, revealed at the National CancerResearch Institute Conference in Liverpool is based on data from England’s national cancer registry. The data captures people who were diagnosed with one of ten different types of cancer between 2012 and 2013 and were still alive at the end of 2015. For me, this isn’t really breaking news so to speak. Two years doesn’t seem like an awful lot of time to me, but its better than nothing, and who knows what the future will hold. It is of course good news! The data shows that new and improved treatments such as immunotherapy mean some cancers can be more manageable, similarly to that of other long term chronic illnesses. Sadly, this is by no means a cure. I still have a terminal illness, and I am still dying, but at the moment the disease progression is slower than I have been predicted in the past.

At my last appointment with my oncologist in Leicester I was told that my most recent PET CT scan was stable, there are no signs of disease progression at present. I ultimately can’t change the path my life has set out on, but I am always so happy to hear those words.

I have been a cancer patient my whole adult life, and stage 4 patient for over 7 years. Last May, after my second bowel surgery to remove melanoma one of my surgeons suggested I should think about giving up work altogether, given my diagnosis. Although that person was clearly incorrect, moments like that really hit home, and are a terrible reminder of how cancer has changed my life irreversibly. It bought me back down to earth with a huge thud. Life isn’t as simple when melanoma is involved.

My friends and family often comment on how brave I am, and suggest they wouldn’t be able to do the same in my shoes. I just try my best to get on with my life, I have no other choice. There is no other way to deal with the situation, so it’s actually pretty simple, despite my life being overly complicated. I would be lying if I said it wasn’t mentally and physically exhausting to get out of bed every day and carry on like there is nothing wrong; but there is no other path I can take, no alternative route. I feel unwell and exhausted a lot of the time, more than most people realise, but I just have to get on with it.

Lately, I’ve had many more down days than I have done previously, there has been a lot of late night crying in bed. I need to keep positive, but its those moments when I am all alone and more vulnerable that I think too much. I’m not finding baths as relaxing as they give me too much thinking time! When the door is locked it feels like a gateway to my emotions opens up and everything comes flooding out. I am trying to be kinder to myself and allow a few melt downs or sad moments which I otherwise would have brushed off. it is worse to bottle everything up, but emotionally it drains me of strength and energy.

I am still the same person inside, however I am just overly emotional at the moment. I’ve cut down on a lot of social activities in the lead up to Christmas and December is upon us. I am finding sometimes it’s just too much for me, particularly with the seasons changing. It’s so dark and cold outside, I want to go home straight after work and sleep. Sometimes this can be detrimental, as it gives me more time to dwell on negative feelings.

The positive news about my PET CT scan is something good to focus on, as well as all the exciting events in the lead up to Christmas time. It might be dark and cold but T’is the season to be Jolly! Perhaps this is the season of good news.