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.

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.

Singles Awareness Day

It is that time of year again, January is over, the new year is in full swing, resolutions have been broken, everyone has been paid again following Christmas, and it finally starts to feel like winter might not last forever after all. Valentines Day is the next celebration on the list in a couple of days. For some it’ll be a big deal; It’s a time when shops are filled with red and pink love hearts, fluffy cushions and chocolate themed gifts, because nothing says I love you more than a box of Cadbury Milk Tray.

I find it odd that somehow as a society we have started to measure love by how much affection or generosity one shows another on a particular day, instead of perhaps showing love in more simple ways all the time. Why does it have be once a year? If you are single like me, then messages everywhere are saying that this day is only for certain people. There is a reason we’ve all heard of the M&S ‘Dine in for Two’ and not one.

I recently heard of another phrase coined Singles Awareness Day, so thought I would take a moment to blog about relationships and cancer. Over the years I have struggled a lot with the idea and feel like the future has been stolen from me, which is particularly problematic when in comes to relationships. Cancer is a catyclysmic event at any age, but if you haven’t settled down with someone it makes that idea seem beyond impossible. I didn’t meet my Mr Right at University and was diagnosed with stage 4 cancer shortly after graduating, which has made relationships pretty much non existent. I am now 30 years old, I still have single friends, but increasingly people are settling down and starting families, and days like Valentines Day make it more and more apparent I’m not at the same stage in life and Cupid hasn’t done right by me so far.  I’m not desperately single or angry and bitter about it, but it would be nice to feel like a relationship could be possible one day. I would have liked the choice.

When I featured in the BBC documentary A Time To Live last year a clip of my interview was posted on the BBC News Facebook page. The clip showed my thoughts on dating and was subsequently viewed online 1.2 million times. You should be able to view the clip here. I still stand by what I said back then, why would anyone want to take on someone with incurable cancer? Imagine falling for someone you know there isn’t a future with; I have some much baggage it wouldn’t be fair on the man in question. I don’t like to think about my prognosis, my immunotherapy is working well, but I know ultimately the outlook isn’t good and I’m on borrowed time.

Dating feels like minefield at the best of times, so with a cancer diagnosis on top of the usual woes it becomes even more difficult to deal with. The thought of trying to go out and meet someone makes me feel physically sick. I don’t even go on nights out as it is! How do you tell a man you’ve only just met you have a terminal illness? It isn’t the chat someone brings to the table on a first encounter. Even with new friendships I worry about how much to tell others, should I tell them my cancer is terminal? Or that I can’t have children? Do I reference my scars before they notice? or do I casually mention I’ve already written a will and thought more about having a funeral than a wedding?

All of these questions are extremely hard to think about in day to day life, I can’t imagine being in that situation with a potential male suitor. Even without cancer, I am not sure a person shares everything about themselves so early on, but perhaps it’s easier to lay all your cards on the table from the start. I know it’s not a persons place to know about my situation, however cancer is such a huge part of my life, and that won’t ever change. I often wonder that as I’ve no control over my circumstances then maybe I shouldn’t be trying to keep people in the dark so much. I am not ashamed that I have cancer, but of course if there was one wish I could have in the whole world it’d be to change my diagnosis. I fear having the ‘I know, I don’t look unwell…but I am actually really ill’ conversation with everyone I meet.

In reality, I can’t be the only person out there of my generation in this position, and I often wonder how others have navigated through illness and dating. There is no one to tell you how to talk about cancer when you’re trying to form a new relationship or meet new people. I know my friends would say I should put myself out there to meet someone, as I know it is unlikely won’t happen if I don’t look out for it. It’s 2018, we are a generation where online dating is the new normal and I’ve been told I’d be a great candidate for First Dates, I’ve definitely got an interesting back story, but I wouldn’t want that to be my key selling point. How do you introduce yourself and explain you are dying? I know I don’t have as much to offer as a healthy person with their whole life ahead of them. Would the suggestion be to find a man with similar odds to myself, maybe someone who has also experienced cancer in the hope that they will understand the situation more? Sounds a bit weird to me.

I am not sure if the right man is out there, I’ve never been good at meeting people, so how could that possibly improve? Perhaps dating is a bit like going to job interviews, having to put on your best front with someone you don’t know and convince them you are what they’ve been looking for. A life limiting illness isn’t exactly a positive selling point. I think that cancer and dating are almost entirely incompatible, I don’t think I can I possibly factor my illness into future relationships. Often I don’t have much energy to see friends and family, let alone going out to meet a person I hardly know.

Having cancer places a very severe burden on a potential partner, I know couldn’t put that on someone else. Last time I checked I was still playing a tug of war with cancer, most likely to die a slow, debilitating death with the odds are all stacked against me. It’s not the sort of message to write inside a Valentine’s Day card. Or how about ‘Do you want to be with me until I deteriorate too much that we can’t cope?’

Rather than solely celebrating couples as such, I’m going to take this day to tell my family and friends around me that I love and appreciate them, because perhaps I don’t say it often enough.

My Fifteen Minutes Of Fame

Since A Time To Live aired on BBC Two last month I have been overwhelmed by the response from family and friends as well as members of the general public. I’m really glad I took part in the documentary and feel all the stories were really well thought out; it was joyful and touching at the same time, and remained true to life throughout. I hope it may help others who might be in a similar situation to me.

A short clip of my story appeared on the BBC News Facebook Page shortly after A Time To Live aired, and within 24 hours it had been viewed a staggering 1 million times. Yes, 1 million! Currently the viewing figure stands at 1.2 million. It’s crazy to think my story has been seen that many times and shared by total strangers all over the world. The feedback on the whole has been overwhelmingly positive. As I mentioned in one of my last blog posts, Not An Average Morning the decision to take part wasn’t always easy, and isn’t something I would have considered this time last year. Personally I believe that in some ways part of a healing journey and a great step forward for me, helping to distance myself from a lot of negativity surrounding my illness.

I originally decide to start writing about my experiences with Stage IV melanoma for the following reasons.

1) Many people that I know said I should, because it may be therapeutic, and help me to be less angry and upset about the situation I am in.

2) There didn’t seem to be many other people out there doing the same thing.

3) I had never encountered a single person of around the same age who has the same type cancer as me, or even any form of cancer.

4) It would a great opportunity to raise awareness of melanoma.

In the six months since I began writing and filmed my part in the BBC documentary I am proud to say that I have achieved all or part of the above objectives. I’ve had various messages from people over the past few weeks, from old school friends to complete strangers. I’ve had emails, handwritten letters, Facebook messages and telephone calls. I even had a delivery of flowers to my work from a local lady who wanted to wish me a happy birthday. She said my story touched her and wanted to tell me I was inspiring. I haven’t done anything specific, I’ve just been honest about my feelings to a big audience. The kindness of strangers is incredible, and its great to feel my story has resonated with so many others. Last week I was leaving work a lunchtime and a woman who past me in the street stopped me and said she’d recognised me from the film, and proceeded to tell me how great I was. I’ve never received so many compliments, it has been a glimpse of what it must feel like to be famous.

Prior to the film airing I had been feeling very nervous, however I’ve now had my fifteen minutes of fame, and it wasn’t nearly as scary as I thought it would be. Actually, it has been pretty cool. I’m no one special, and there are plenty of other people having an equally rubbish time, but with all the madness happening in the world right now it is nice to see something having a positive impact. Thank you from the bottom of my heart to everyone for the lovely messages of kindness and support, apologies if I haven’t got back to anyone directly, it has been a hectic few weeks. I want to take this opportunity to send love to all those reading this, weather you have been personally affected by cancer or not I really appreciate it. I  honestly cannot put it into words exactly what it means to feel such love and support.

Back in the real world I have a PET CT scan coming up in a couple of weeks so I am hoping for stable results. There will never be a time when I don’t worry and loose sleep about this, I am only human after all. This is the bit that gets no easier not matter how much times passed. You’d think that after nearly seven years as a Stage 4 patient I would be used to it. I am trying to not to loose my mind whilst I wait for the next few weeks to run their course. I have another European adventure panned and plenty of work activity to keep my mind occupied, I also went on a long walk this morning to get some fresh air and am feeling better already.

Not An Average Morning 

This week has undoubtedly been one of the strangest weeks of my life. I began with treatment in hospital, part of my normal routine. Tuesday was followed by a live interview on This Morning on ITV with none other than Holly and Phil, and a double show day at the theatre. The BBC docoumentaty I participated in, A Time To Live aired on Wednesday evening on BBC2. I flew to Prague on Wednesday morning to visit friends prior to the film going out, so all in all it’s been a bit of a whirlwind. 

After filming my interviews for A Time To Live last October I put all thoughts about it on the back burner, and they only resurfaced a couple of weeks ago when the air date was confirmed. In a way I’m glad that I was out of the country, as I might have found if difficult watching with others. My section features cameo appearances from both my work colleagues and school friends, but I’m glad I watched it on my own, seeing the whole thing come together felt like a really big accomplishment.

I was lucky enough to be asked by the BBC press office if I’d be interesting in taking part in an interview on the This Morning sofa with Holly and Phil with Annabel, another participant from the documentary. Certainly not an average Tuesday morning activity! 

It’s true, the prestenters are lovely in real life and made me feel at ease despite my nerves. I can’t believe I actually went on live television, I was panicking I would get tounge tied and say something wrong. One of my friends joked that I should make sure I let the presenters get a word in! I can talk a lot but I don’t think television interviews come naturally, this is why I am not a performer after all. It could be that,  or maybe it’s the lack of talent. 

Having been to TV studios before for work it’s something I’m familiar with but I’m always impressed with the organisation of everyone to keep things running so seamlessly. Usually I am the person arranging interviews for others rather than being interviewed myself, so I’ve experienced the other side of the PR industry. It was a nice treat to get my makeup done before my big moment, I wouldn’t mind that more often. 

Sue Bourne from Wellpark Productions and her whole team have created a beautiful film about living on borrowed time and I am really proud to have been a part of it. The reception has been great, people have sent some really lovely tweets and messages which is surreal but also amazing to know that it’s had an impact on others. It seems a lot of people have found comfort and positivity in watching it. I know if I wasn’t part of it, the film would be the type of documentary I’d watch. 

If you missed it, A Time To Live is now available to watch on BBC iplayer in the U.K. 

Thoughts On Turning 30 With The Big C

This blog post, Thoughts On Turning 30 With The Big C was originally written for Huffington Post UK and posted to coincide with the release of BBC documentary A Time to Live

This month marks a very special occasion, my birthday. Not just any birthday: I turn thirty towards the end of the month. Although some people of my age may shudder at the thought of leaving their twenties behind, I am truly grateful to be able to experience the next decade. There were several points over the past few years when I did not think that I was going to make it. At one point my 25th birthday seemed unlikely to occur. Of course like most twenty-somethings, I am not going to pretend that it has been an easy ride; these have been the most challenging years of my life. Let us just say getting cancer wasn’t on my top of my ‘Top Things To Do Before I turn 30 list’, and as the years progress it is unlikely that life will get any easier. I was initially diagnosed with stage 4 Melanoma in 2010. Since then, I have had tumours removed from my lung and brain as well as two from my bowel. For the last two and half years I have also been the recipient of various different types of systemic treatment. 

A diagnosis such as this means that I can never be cured. It is a case of having treatment to try and alleviate any symptoms and stay alive for as long as possible. I will never be cancer free. My family and friends have had such a significant impact on my recovery, as have the many extraordinary health care professionals who have kept me alive for so long. I believe one of the main reasons that I am here today is because of my positive attitude and that of other people around me. 

In one sense I feel that although I am turning thirty, I am missing out on the whirlwind of mortgages, marriages and typical adulthood. I am not hitting any of traditional milestones expected at my age, I am certainly not the leader of the pack in that domain. Whilst my friends continue to be busy getting engaged, married or having children, I will be spending the first year of my thirties doing the same thing that I have been for the past six and a half years, fighting Melanoma. 

I have my up and downs, there are times when I cannot help think about what could have been, and how my life might have played out, but the truth is I am just happy to be getting older at all. Having cancer means there is no pressure on me to achieve the same objectives as my peers. I have not been travelling or settled down, and I have zero money in savings, I do not work full time, but that is fine since I have cancer to deal with, which is a time consuming job in itself. One that nobody wants.

People have asked what my plans are for the big day, and whether I am going to throw a party to celebrate. The truth is that since my diagnosis I have not really been interested in drinking, dancing, late nights, crowds, loud music or close personal attention, so I do not think it is really for me. I was probably never a fan of those sort of events anyway, and fatigue is a huge issue, so at least having cancer gives me grounds for a good excuse rather than saying ‘it’s just not my thing’.

For me, there are some very different events that have been a cause for celebration, such as the development of new drugs that might help fight Melanoma, and in turn give me the opportunity for more candles on a birthday cake. It is often about the personal successes, such as getting my driving license back after being revoked on medical grounds, a quick recovery from major bowel surgery, or a stable PET CT scan result. It is not a midlife crisis that I am about to hit, in fact it is the opposite. According to headed hospital paper, I am doing really well and I hope that may continue well into my thirties. It might not be what the teenage version of me predicted, but I make do with what I have got. 

As I have grown older I have realised that I need more help that ever before. When I go to hospital for treatment, I get upset and agitated and often regress about 15 years, turning into a stroppy teenager. At least I will always be remembered for being young at heart.
Until you have known what it is to stand at death’s door, and looked over your shoulder to visualise the past, you have not really experienced what it is like to really appreciate life.
It has been difficult to find the words to describe how grateful I am for the life I have been given. I am still here, and I hope for many more celebrations to come. 

Don’t they say life begins at thirty?

A Time To Live 

In October last year I was one of twelve participants interviewed for a documentary about people living with a terminal illness. The documentary, A Time to Live explores the question​ of​ what would you do if you were told you had a terminal diagnosis and may only have months to live?

​For so long I’ve had to face the uncertainty of a Stage 4 cancer diagnosis. I often wonder Why me? Why now? Did I contributed to this? Did I do something wrong? Is there a way I can change the final outcome?

​I haven’t yet fully accepted my diagnosis, and I don’t think I ever will. For me, this something that is an ongoing struggle to accept, but I’m determined to take something positive from it all. This is partly why I started a blog after all.

Blogging is ​a process which ​has helped me be more open about my feelings, and I believe it has also helped my friends and family have a clearer understanding of how I feel about my life ans all its challenges. I also hope my writing has helped other people who may be in similar shoes. For such a long time I thought I was on my own, it turns out thanks to the World Wide Web that I am not. There are plenty of other people, both young and old going through an equally challenging time who are also living their life to the fullest. Isn’t that what you would do?

During the filming I talked about my thoughts and feelings on having cancer and how I deal with the knowledge I have a limited time left on this earth. At 29 It is often hard to believe that my impending death will be much sooner than others. I have no control on the outcome and when that might happen. Do I wish I didn’t know? Yes.

A few years ago I would never have dreamed of being involved with a charity such as Trekstock or being part of something so public as a documentary​. Participanting in this  has allowed me to talk about my diagnosis in such an open way. I may have a drama degree but I am very much a behind the scenes type person! I spend my time organising interviews for others rather than being the one who gets interviewed. My friends and I frequently send documentary recommendations to each other, so it feels bizarre to on the other side of things, Its the sort of thing I would tune in to watch​! alongside programmes such as 24 Hours in A&E, Child of Our Time and anything Louis Theroux does (who doesn’t love a bit of Louis).

The documentary crew filmed me having my eyebrows tattooed and hanging out with some of my friends as well as filming me at work. Its these seemingly ordinary activities which have helped keep me sane, especially since starting active treatment in September 2015. Cancer has became my whole life, not just an inconvenient visit to the hospital every three months, but something that effects my life every single day. I am however a glass half full person, and I hope this comes across in the film.

On that note I’ll shortly be heading away for a few days to Prague, while I still have time to live! Please do tune in if you can, I’m sure it’ll be interesting viewing. You can watch my TV debut A Time to Live on BBC2 on Wednesday 17 May at 9pm. There is also extended footage available on The Open University website.

Huge thanks to Sue and the amazing team that put it together.

Before I Kick The Bucket

I’ve just finished watching a documentary by BBC Wales presenter Rowena Kincaid who sadly passed away from Breast Cancer a couple of weeks ago. Before I Kick the Bucket: The Whole Story has been shown again on the BBC in Rowena’s memory. I found her documentary so touching and her story really resonated with me. She describes her thoughts and feelings so articulately.

I often lay awake at night thinking about cancer, how it has affected my life and all the things I’m yet to achieve. I hate the cancer has control of my life, like a ticking time bomb just waiting to explode.

People say when a person is first diagnosed they go through 5 stages of grief:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

I feel as though I jump from one to the other on almost a daily basis, perhaps denial is healthy? Surely its always easier to pretend things aren’t happening than deal with the consequences?

Over the past few years I’ve often thought about the things I want to achieve before I die, and before my quality of life decreases dramatically. I tend to block these thoughts out after a while in fear of falling into a state of depression.

Each day I feel I’m getting closer to death, in honesty I’m dreading my health going down hill and having to rely on help from others 24/7. Even though I know it’ll be soon I don’t feel like its become any easier as time has moved on. I’ve been constantly receiving some form of treatment for over 2 years now, but I know I cannot stop as its what is keeping me alive. Nowadays I am in a position where surgery is no longer a viable option, my cancer has spread to multiple places in my body, I simply cannot sit and do nothing.

The bottom line is I have a terminal illness, there is no Stage 5. Medical advances and new treatments are being developed, but I’m not sure how much longer I can stay one step ahead of this race.

I need to figure out what I want to do Before I Kick the Bucket.