What Could Have Been

Since writing my last blog post, Life Through A Lens, I had a week long break from social media, and I feel so much better for it. Now I am focussing on my summer rather than what other people are doing. In a few days I will be heading up to Edinburgh to enjoy the fringe festival. I went last year for the first time and had a great weekend.  Despite the fact that I am a Drama graduate, I had never been before, so when the chance came to go again I couldn’t turn it down. I have been pretty easy going about the trip and have left it down to others to organise, so am looking forward to sampling what the festival has to offer for 2017. I love to travel and the fringe combines a lot of my favourite things; travelling, theatre, sightseeing and eating out.

My first ever experience of the city of Edinburgh was during my failed attempt at starting university back in 2005, which I wrote about in my original blog post 11 Years. Since that disastrous week I went back in 2008 with a friend from University, and then again in 2016. I love the city, however being there last year struck a chord with me.  If It wasn’t for finding out that I had melanoma, I would have studied there for three years, and who knows where that path may have led to? It is a question I ask myself a lot, wondering what could have been.

Last summer, on my last day In the city I became very upset and tearful about my situation as recollections of what happened came flooding back to me. At 18, I felt that I had no choice but to have a gap year, since I only found out about my melanoma the day before I flew to Scotland, and I was nowhere near ready to be so far from home with a stage 1 cancer diagnosis hanging over me. I was lucky that one of my sister’s best friends from school had already been there a year when I showed up to study.  She came to see me, finding me confused and upset.  I clearly remember my lightbulb moment, I told her that I wanted to be at home with my family, without bursting into tears. Knowing it was the right choice, I returned to Northamptonshire after just six days, and eventually began the quest for finding a new job. I did not want to return to my previous job working at the cinema, after all people would be sure to ask me questions about the scar on my neck, and why I wasn’t in Scotland. As I had only been working there a very short time I did not feel tied to the job, or have a desperate need to return. I think I was only there for a couple of months.

I feel as though cancer has ruled my life since that initial diagnosis, and subsequently I have chosen paths in life that I wouldn’t have chosen had I been well. I get very upset and sad to think cancer will now always be a part of my day to day existence. It rules my life, rather than the other way around. When last in Edinburgh I felt angry that cancer dictated what happened to me as a young adult, and that impact will never go away. I feel as if it has taken away a lot of my freedom, and limited my choices in life: from where I live (I wouldn’t be able to live anywhere as far away as Scotland these days), to the type of job I have, and the prospects that it offers. Having a part time job means saving money is a non-existent luxury, so I feel limited. Perhaps this wouldn’t be the case if I were able to work more? Who knows?

I can’t help but think about what could have been if I’d been able to stay in Edinburgh to complete my degree. Would I have lived there afterwards? Possibly I may have performed at the fringe myself during my time there. One thing is for sure, it always seems a lot colder up there, so if anything, I guess, that is a bonus!

People often say everything happens for a reason, but I fail to see why this has happened to me. I will never understand why. I hope this year I will enjoy the festival and try not to dwell over lost opportunities and memories I didn’t get the chance to create.

Lastly, I wanted to say a huge thank you to those wonderful friends who contributed towards the  2017 fringe fund for me. My lovely friends set up a collection for my 30th birthday so that I could ‘go big’ at the fringe and it has paid for my all my tickets and spending money, I would have struggled without the funds people so generously donated. Absolutely amazing!

Life Through A Lens 

Recently I’ve been witness to how much of our lives are governed by social media, from Instagram, Facebook and Twitter to Snapchat and Instagram stories. More often we are living our lives through a lens and my guess is we are probabaly all guilty of oversharing at times, myself included. Sometimes I use apps like Instagram out of habit and I don’t even think about it, I’m not even going on there to look at anything specific.

I frequently enjoy sharing elements of my life online alongside my blog, and in doing so it’s helped me feel less like the odd one out, I’m not the only one living the lonely cancer life. Writing my blog and creating social media platforms has opened up a lot of new opportunities for me, from my television debut to writing guest blogs for Huffington Post UK and The Lewis Foundation,  as well as finding out about the work of other charities I wouldn’t have heard of before. I’ve also been in touch with other melanoma patients who I wouldn’t have connected with otherwise. I do however feel a temporary break is much needed.

The use social media seems like it’s at an all time high, gone are the days of hotmail email accounts, MySpace and MSN messenger,  being part of the millennial tribe means that everyone is quick to share photos and videos of their lives at a click of a button. I’m also guilty of this, I mean who wants the FOMO?! (aka the fear of missing out for those that are less social media savvy). When I was diagnosed with a brain tumour in 2010 I took myself off Facebook for almost a year, and  didn’t have any problems staying in touch with friends, so it might be nice to go back to basics for a few days. The more I think about it the more I am glad to have grown up on the cusp of the social media revolution. 

It would seem that doing multiple activities in a day is commonplace when I look over Instagram profiles. It could be that it is partly the profiles I chose to follow, but I don’t want to be made to feel guilty that I’ve eaten copious amounts of maltesers, or that haven’t made every meal I’ve eaten during the week from scratch because I’ve had treatment that week. Even on a regular week I wouldn’t be cooking every night. I feel like what I see on online is often unrealistic, unless being a blogger is your full time job it just doesn’t work like that. Social media can make me feel like I’m doing something wrong, and the pressure to be part of the crowd and be constantly active can feel too much. I don’t want to be made to feel like an outsider if I have had a few duvet days and not bothered going to the gym. This pressure comes in waves and I’m sure it’s something which like others I will continue to experience now and again, but I would like to create some sort of distance. My lifestyle is not picture perfect by any means, but I still have a really good life. Even if my life isn’t going to be a long one I know that I’m fortunate to be well at the moment, perhaps I should focus on that whilst on my way to my next day trip destination rather than mindlessly scrolling through Twitter and not paying any particular attention to what is on the screen.

Over the past week or so I’ve spent the best part a whole day in bed watching trash tv, and another full day receiving treatment at hospital in the chemotherapy suite, but who really wants to know I’m doing absolutely nothing? Social media tends to focus on the highlights, but not every day is the same. I chose not to show images of me in hospital for a number of reasons; it makes me feel uncomfortable and I don’t want a lasting image to remember it by, It won’t be something I forget easily. My immunotherapy is ongoing therefore I won’t be posting a picture of myself holding a sign declaring my final treatment has been completed, or one declaring how many years I have been in remission. I’m happy for those that do experience that, it must be an incredible feeling. I can’t help but feel sad when I look at these images, because it will never be me.

Having a break doesn’t mean that I am quitting anything permamently, just a temporary break to help refocus and allow me to take back some control of my life and think about other positives I have going on. I hope that a break will help me get things in order, such as my sleep pattern and overall productivity. I can certainly procrastinate if I want to, so I’m going to take a step back from posting online for a week and see how I feel afterwards. Wish me luck!

A Never Ending Cycle

I was fortunate enough to get stable scan results a couple of weeks ago following my most recent PET CT scan. It goes without saying that this is of course fantastic news, but I’ve not been feeling on top form for a little while. Having good scan results doesn’t automatically take away any of the pain or treatment side effects I’ve been experiencing, If anything, it probabaly feels worse.

I’ve had an annoying cold for about nine weeks, which has been really frustrating, but I’m hoping I am now rid of it thanks to a course of antibiotics.

My emotions have been very up and down, this weekend marks the start of a very busy summer, including hen do’s, weddings, short trips away and various other birthday celebrations. I love hanging out with my friends, however sometimes it can feel overwhelming. On the surface it seems as though everyone around me has a perfect and exciting life with a huge future ahead of them, and it’s all around me at the moment. It’s a horrible situation as I feel like I don’t have that, we’re not all running the same race, and I feel like life has let me down.

I’ve been feeling low and generally unwell which is difficult. On the surface it seems as though everyone around me is on cloud nine and I’m gloomy all the time, but I can’t help it. I’m feeling a bit sorry for myself at the moment, so need to shut myself away, but there is so much going on I haven’t had any time.

Everyone around me seems to have their future mapped out for them, and in total contrast I have serious lack of direction in my life. I am failing at living a grown up life. The only thing that’s certain for the future as it stands is that my treatment will continue in order to keep me alive. Thinking about that long term gets me down. If it stops then that signals the end, and I’m scared about what lies ahead. Yes, my scan results were good but I still have a relentless cycle of treatment every three weeks. In six months it could be a very different story, it is something I panic about when I’m lying in bed late at night and I end up having broken sleep and headaches. The ‘What If’ scenarios are very scary, they aren’t actually irrational thoughts which is the most difficult part. I have so many questions that nobody has the answer too. I am due to go abroad on two major holidays next summer but every time I get excited another part of me worries more and more and all the changes that could happen over the next 12 months. I am scared to think about plans unless there are about a month in advance because I don’t want to let people down.

I’m petrified when I think of the future, but I know it’ll pass. I feel like I just get used that things and then in a flash another theee months fly by and I will be worrying about my next scan.

Someone once suggested to me that I have a treat every three weeks when I go for Immunotherapy so I have something positive to focus on rather than worrying about having the treatment. It could be something like getting my nails done or going to the theatre, or even just buying myself something nice. I’d most likely do some of the activities anyway, but could be a good way of shifting my focus to something more positive.

On a brighter note I had hair extensions fitted last weeks and they look amazing, just like my own hair used to look. Such an amazing feeling not having to wear a wig.

Letting My Hair Down

It has been almost a year since I began taking iv drug Pembrolizumab to help keep my cancer at bay. When I first began systemic treatment back in 2014 my hair and eyebrows fell out and then my hair took on a new afro like texture. I documented this expereince last year in my blog posts Eyebrow Tattoos and Hair Envy.

Since I began Pembrolizumab exactly one year ago my hair has started to grow back slowly, this is because hair loss isn’t a side effect of this particular drug, but after having covered up for two years, next week marks my (hopefully) permanent departure from wig wearing. I am currently sporting an unruly short hair style somewhere between pixie crop and a graduated bob, but I decided to take the plunge and am due to have hair extensions fitted next week. The texture, colour and thickness have all come back,  I just need to add to the length. I have a short hairstyle once before after I had a crainitomy to remove a brain tumour in 2010, it did suit me, but I really miss my long hair. Wearing a wig for hours on end, particularly in the summer months can get really uncomfortable, so I am really excited about the freedom hair extensions will give me. I can’t wait to wake up and not have to think about my hair.

The heartache of loosing my hair is something I wasn’t prepared for, or even something I will get over anytime soon. Having to wear a wig has become part of my daily routine however, it also completely striped me of my confidence, despite being my new normal. Although growth has made it easier over time, I still wear a wig in public most of the time and would never consider going to work without covering my head. As a female loosing my hair was one of the worst  things that could have happened, because it made me feel the exact opposite, unfemale. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. It has made me stand out (not in a good way!) and feel ugly.

I know that getting hair extensions doesn’t mean I am suddenly going become self assured and confident about my appearance, there are no photographs of my bald head or short chemo affected hair in existence, which I think speaks volumes about my feelings on the matter. Most of my friends know I used to love taking photos when out and about, but this experience mean my outlook has changed. Paying a visit to the hairdressers marks another key step forward for me in dealing with my diagnosis, and perhaps over time I will be letting my hair down once again and not worry about what others think.

Sometimes it feels as though people think that because I am facing cancer that for some reason I no longer care about seemingly small or trivial things like what they think about the way I look. If anything it has made me more anxious, angry and upset.

I’m sure there are some women who would be comfortable and confident with having a bald head, however I am guessing there is a tiny minority who would be ok with hair loss from cancer treatment. I know I am not one of them. The past two years have been a mental and emotional journey, I tried to rock a shaved head and a variety of headscarfs but my locks were part of me, so losing them was a horrid experience. Yes, It is a small price to pay for life extending treatment, that goes without saying, but it doesn’t mean I should be happy about it!

Oddly, I am now feeling anxious about ditching the wig altogether. People may wrongly assume that treatment has come to an end and I am cancer free, but as it stands I am continuing having Immunotherapy every three weeks. I am now a stage 4 patient with hair, which is better than not having any, so onwards and upwards in a way.  I’m sure I will get used to it in a few weeks. I know there is every chance my hair might fall out again in the future, so if it does happen then hopefully I’ll feel more prepared.

I’m looking forward sporting a new shorter summer hair style and eventually feeling more like my old self. It’s a lot of money but hopefully it’ll be worth it. 

 

Top Tips For Good Sleep

Over the past few months I’ve struggled with my sleep cycle a lot, some nights hardly sleeping and others lasting the best part of ten or eleven hours. It often depends what I’ve been doing that week, if I’ve been at hospital or had some sort of work event, or ended up being awake late catching up on a TV programme I’ve been meaning to watch.

I’ve come up with a few tips which have helped me over the past few weeks and thought it might be worthwhile to share. Likewise, if people have any other tips I would really appreciate it. 

Bath with Epsom Salts

When time allows I’ve been trying to have more down time before going to bed. I’ve read numerous online articles about the benefits of using Epsom Salts, having first discovered this when training for a half marathon in 2015. I still can’t believe I actually did that!

The theory is that when the salt is added to a warm bath, the body is then re-supplied with magnesium. It helps to produce mood lifting chemicals in the brain, also helps to reduce anxiety and promote calmness. Bathing helps to relax muscles and reduce joint pain when absorbed through the skin, which I guess is why runners often recommend it. I’ve also heard of people using magnesium oil sprays before going to bed.

Wear An Eye Mask 

Wearing an eye mask, like the ones you get on a long haul flight has often helped  me sleep when I’ve been feeling stressed. Blocking out light and relaxing tired eyes makes it much easier to sleep. Strangely, I often sleep really well if I stay in a hotel, you’d think this would be the opposite, but I think it’s sometimes down to the use of clever black out blinds which keep the room nice and dark.

Use a Sleep Spray

I stayed in a hotel in Stratford-upon-Avon at the start of the year and a This Works Travel Sleep Kit was left on my pillow. The kit I received contained two small bottles, a lavender spray and a scented roller ball. Ive only used this when feeling particulary anxious but do feel the kit has helped me, I also love the smell of lavender! There are a number of similar kits available which also include eye masks and sleep balms. 

The roller ball is used on pulse points and then inhaled deeply just before going to bed. The idea is the blend helps to calm the mind, therefore encouraging a deeper nights sleep. The spray should be used on the pillow just before going to bed to help improve sleep quality. 

Turn Off Technology

I am often very guilty of watching tv until right before I go to bed. I’m consciously trying to break this habit and create a proper routine. I know I sleep much better when I’ve had time to wind down for the day, I’ll either watch tv, or if I come in really late from work my bedtime routine goes out of the window altogether. Forgot the three step cleanser, toner and moisturiser, who cares when all you want to do it sleep? 

I’m also often guilty of checking my phone for the time if I wake up in the night, again I know this is a big no no when it comes to needing a good eight or nine hours sleep. Ive since bought myself an alarm rather than setting the one on my phone. I think I will be less tempted to look at my phone this way. I remember using a small travel alarm clock whilst on a school trip, but thanks to the smart phone I haven’t owned one in years.

Avoid Afternoon Naps 

It pains me to say this, as I do love a little afternoon nap when I’m not working, but trying to avoid these, no matter how tired I am has been a really positive step forward. For the last couple of weeks I’ve avoided day time sleeping, even if I means I go to bed at 8pm! I have found this beneficial as I then feel in need of rest, so more likely to go straight to sleep rather than think about my upcoming PET CT scan results. 

Exercise Daily 

It has been said that regular exercise can help to reduce insomnia and in turn experience deeper sleep cycles. This includes light exercise such as walking, which is great news for me as I’m often travel to and from the train station to go to work. I also try to go to morning yoga sessions or the gym before work, but the frequency of this depends entirely on how busy my week is. If I haven’t exercised in the morning there is a 90% chance that I will get too tired and opt out of going to the gym altogether. I am always a morning person when it comes to exercise, I want to get it out of the way! Having said that, I know when my body craves sleep, so exercise shouldn’t come and then expensive of a good sleep pattern.

Happy snoozing!  

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.

Why Everybody Needs To Wear Sun Cream

The recent change in the weather and the feeling of summer in the air has made me think more about the importance of wearing sun cream. Its important to highlight just how dangerous sun exposure or the desire for a tan could be. Although over-exposure to the sun is not how I got Melanoma, it would be silly for me not to start talking about it, as its something I think about frequently. In some cases situations such as mine could be avoided or prevented altogether, and I don’t want any one else to go through an ordeal such as the one I’ve been going through for the past 11 years.

I’ve spent many sleepless nights wondering if there was anything I could have done to stop this from happening to me, I think the ‘what if’ question will always be there at the back of my mind, along with a pang of guilt for the situation I now find myself in. I’ve never been a sun worshipper, and always cover up as much as possible, but the worry will always be present. I’ve been told my Melanoma would have developed regardless of the climate I live in. Still, regardless It’s easy to know the right thing to do after something has happened, but it’s always hard to predict the future.

As the summer weather reaches it peak I have a feeling I will see more news articles and images of sun burnt brits on social media often accompanied by laughing emojis or captions such as “LOL”. It’s difficult to comprehend why people don’t take this seriously, its no laughing matter. According to the Macmillan website, each year about 14,500 people in the UK are diagnosed with Melanoma, and it is one of the most common cancers in young people aged 15 to 34.

Often skin damage doesn’t show up straight away, perhaps a few weeks, months or even years later, with increased fine lines and wrinkles, and even skin discolouration. It is a vital part of a skin care routine which often gets forgotten about. Wearing sunscreen on a daily basis is the best thing to do to keep skin looking youthful and healthy. I know many people who wouldn’t go out of the house without make-up but chose not to protect their skin against UV radiation. If I am being truly honest it baffles and upsets me that people don’t take this seriously despite knowing about my Stage 4 diagnosis. It’s not healthy or good for a persons to expose themselves to such extreme conditions which our bodies are not built for. Our skin is the largest and fastest-growing organ and needs protecting just the same as the other organs in our body. Cancer does not discriminate, not matter who you are. Bob Marley passed away from Melanoma in 1981 after it began under the nail of one of his toes. It just goes to show we are all at risk no matter what climate we live in or ethnic background we come from.

I so grateful that my Mum made me get my suspicious mole on my neck looked at when I was younger. Once she spoke to me about it I developed a bad feeling about it almost instantly. I remember clearly raising these concerns with my Dad when staying at his house one weekend. I’m fortunate that the GP referred me so quickly, It just goes to show that If you have an overwhelming feeling that something isn’t quite right, you should trust their instincts and pay a visit to the GP. As the saying goes, if at first you don’t succeed, try, try again. I for one know my own body and what feels right or wrong. Often others seem hesitate to book a GP appointment because they consider their aliment to be something minor, or not worthy of the time of a professional, and we all know how stretched the NHS is. I’ve learnt that nothing is minor when it comes to your health and wellbeing, it is what the service is there for in the first place after all. When I was diagnosed with a brain tumour I had a few friends tell me that it prompted them show suspicious moles to their Doctors.  I know people who have since had moles removed as a result of a routine visit to the GP. Action such as this are great, and I am pleased people have been so proactive, but it shouldn’t take such an life altering event for this to have an effect on people. If in doubt, get it checked out!

I am fighting to stay alive due to an illness that is beyond my control, but there is a chance for others that it could be prevented. The side effects such as nausea, fatigue, diarrhoea, hair loss, rashes, joint pain, itching, headaches and reduced appetite are bad enough let alone the stress and physical and mental trauma of actually going for treatment at hospital every three weeks.

Naturally people should continue to enjoy the sunshine over the next few months if they wish, but I would ask anyone reading this think twice before heading outside without sun protection. I hope most of the tans I will see are from a spray can or bottle.

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.

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