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.

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.

The Results Are In

I have now been sharing my story via my blog for almost two years, and luckily in that time have also remained stable on my latest Immunotherapy drug, having had my last major surgery in the summer of 2016.

This week is also very significant as it marks exactly 13 years since I was initially diagnosed with stage 1 malignant melanoma via a mole on my neck when I was only 18 years old. I have now been living as a stage 4 patient for almost 8 years. I was told back then I may not make 25 and now I’m 31, struggling sometimes but I keep picking myself up again. Cancer has been with me my whole adult life, which is something I don’t think I’ll ever be able to accept.

In some ways my stage 4 diagnosis seems like a lifetime ago, but in others not much had changed. Not long after I had started recovery from surgery to remove my brain tumour and lung tumour I moved to London ana went back to work. I’m still living with friends in the capital city and attempting to navigate the working world as best I can. Around three years ago I moved form South West to East London, so it almost feels like London is a new city, having discovered parts I would never have seen before.

I still get too caught up in the moments when I feel well and then book in too many activities, so last weekend I spent a lot of time relaxing and napping in preparation for the week ahead. I had a chest infection and needed antibiotics, which I think have since cleared everything up. I need to be on good form for the Northampton Half Marathon on Sunday to raise funds for The Lewis Foundation.

I had a PET CT Scan last week and travelled to Leicester to get the results yesterday. I am delighted to say my news was all very positive and takes the pressure off over the next few months.

However, no matter how many times I’ve heard positive news over the last two years there is always the fear my world will fall apart again at any moment. In some ways it feels like I’ve been given a golden ticket, but tomorrow I could find out it’s actually fake after all. I am of course relived, but the fear doesn’t disappear over night.

I’m now very used to the three weekly routine and cycle of my treatment, in way it has become staple part of my life up until this point. Travelling to and from the hospital gets me down, it’s mentally stressful and physically exhausting, but it’s nothing if it means I have a functioning life the rest of the time. I need to try and shift my attitude so that I am ‘living with’ cancer rather than all the negatively that plagues me about dying from it.

Here’s to LIVING!

Down To Earth With A Bump

I’ve taken a bit of break from blogging over the past month, it wasn’t a conscious decision, but a combination of a new job and various busy weekend activities has meant finding time to sit and write hasn’t been at the top of my agenda. When I’ve had some down time, my priority has been to eat and sleep and generally prepare myself for the next few days ahead.

Generally things have been going well, and I am due another PET CT scan in a few weeks time. However, I was feeling almost on top of things until earlier this week, when an unexpected headache lasting almost four days bought me back to down to Earth with a huge bump. However much I try to push it away, cancer always ends up at the forefront of my mind. It’s a reminder that my cancer will never go away, I will not be one of those patients who gets to ring the bell in the chemotherapy suite at the end of my treatment whilst onlookers cheer and clap, celebrating a successful voyage into a life post cancer. I find that whole process very strange, but I know my headache was a reminder this won’t be me.

There are many reasons for headaches, my suspicions says it was due to not drinking enough water, stress and tension; but another part of me will always fear it’s a reoccurrence of brain metastasis. I know too well that this is not an irrational thought, having joked to friends years before that my symptoms suggested a brain tumour, only to find out a short time later that I was right all along. Usually I like being right, but not then.

Having drank copious amounts of water over the past 72 hours I’m feeling much better than at the start of the week, both physically and mentally.

I’d been panicking a lot over the past few days, I know things could be much worse right now, but I also know I’m not ready to die yet, and the thought of having another brain tumour filled me with fear, most likely making the headache ten times worst. It was a huge reality check. My life is never going to be easy or plain sailing, but I am doing well right now, and I must keep telling myself that. There are so many more things I want to see, do and accomplish in my lifetime, even if it’ll be short. I am not ready to go, death isn’t on my to do list in the near future as far as I’m concerned. I don’t think I’m scared of dying, but worried about leaving others behind.

Now I’ve come back down to Earth with a bump, I’m going to take some more time to rest and hopefully start to feel on good form again, even with my next dose immunotherapy just a couple of days away.

Being Dealt A Bad Hand 

My stage 4 cancer diagnosis means that I miss out on so much, having serious health problems means there are many things I will not be able to do in my lifetime, which I find really upsetting. I have been dealt a bad hand in this life and at the moment I’m not coping very well. I’ve had sleepless nights over the past couple of weeks just wishing things could change.

People talk about elite members of society being the privileged few, but It feels like a terminal illness makes me part of the unprevileged few, not able to have opportunities like others can. All I want is a future. Why do bad things happen to good people so much? So many unasnwered questions!

I am so grateful for everything I do have, and that at the moment my treatment appears to be working, but I do get upset over the loss of opportunity that plagues me every day. So often people talk about life goals or future plans, but it’s sad for me, as I know cannot make those plans, as I won’t be able to achieve many of the things I wish for. It isn’t fair, It really isn’t. I don’t want people to think all I do is compain, but It’s hard not to be sad when I feel as though I’m staring down the barell of a loaded gun 24/7. I feel as though Ive been forced into playing a game of Russian Roulette. It takes all my energy to get out of bed in the morning and sometimes distracting myself from the horrendous situation by cooking and baking just isn’t enough.

I lack control over so much of my life, it’s frustrating that other opportunities and options do not come more easily. As a disabled person it’s great to get subsidised travel and free NHS prescription, but it’s a high price to pay. The opportunities to work full time, pay off my student loan etc are non existent which is hard when all I want in life is some stability amongst all the uncertainty. Just a small amount of control. Seemingly small things such as not being able to get a life insurance policy makes me feel like someone is telling me my life is worthless.

Each hospital trip fills me with dread and anxiety, I keep thinking that out of nowhere I could easily be signed off sick from work for weeks. The negative thoughts and worries constantly fill my head with the ‘What If’ secanrios. The sad thing is they aren’t irrational thoughts. I didn’t do anything to deserve this awful disease, but yet it found me regardless.

Society tells us we should have achieved a whole host of things in life by a particular age; from going travelling, establishing a career, perhaps getting promoted, finding a soul mate, getting a house together,  getting married, and then start thinking about a family. Although nothing in life is a guarantee for anyone, I feel I am not able to achieve these goals, and it makes me feel like an unworthy outcast. I know others might think differently, but I do see my health issues as a huge barrier. I’m so happy for others, but its still really unfair. I wish some of these things would be made easier for disabled people rather than harder. I wish more than anything I was able to do something to change it, If only it was simple. I want to run away from life’s problems and stick two fingers up to society. Sometimes society makes me feel like I’ve failed. Big time.

It’s amazing to see new lives entering into the world, and I admire my friends for their amazing parenting skills, however, for me it’s tinged with sadness as I know I won’t be able to have children myself. I just wish I had the choice rather than feeling like I have been robbed of the opportunity.  Similarly with feeling settled in a house, another constant reminder of all the options that are off the table for me. Travelling back and forward for treatment and not being able to put my mark on somewhere or save to put roots down is frustrating. I want my independence away from treatment, but it’s becoming more apparent I can’t have both, I’d just like to feel as though I have a future ahead of me like my peers and more choices.

The phrase health is wealth feels very apt, having a disability makes me feel like options are servelry lacking for me. I’m plagued by fatigue more and more every day and it makes doing things really difficult, much more so lately. I feel worse than I did when I started pembrolizumab a year and a half ago. I can feel so alone even in a room full of people who I know are my family and friends and care about me.

Of course, nobody knows what lies ahead, and naturally no one can have everything, but the grass certainly looks greener without stage 4 cancer. I’d like to be in anyone else’s shoes but mine just for a day, so I didn’t feel like I had the weight of the world on my shoulders. If there is someone upstairs looking down on us they clearly don’t like me very much. Sometimes at night I think about everything and get so worked up I can’t breathe and feel so overwhelmed with sadness it’s too much to bear.

I think mentally I’d be able to sustain this treatment and find some form of contentment if I knew cancer wasn’t going to kill me in the end. It’s so exhausting fighting a battle I know I am going to loose. I’m full on stress and anxiety with my next set of PET CT scan results just over a week away.

I want to be able to wave a magic wand and take the pain away. I wish I could win the Euro millions, and use it to do good and find a cure for cancer but until then I just have to keep going.

Why do bad things always happen to good people? I wish I was the quiz master with all the answers. I just want someone to hug me and tell me it’ll all be ok and teach me how to play my cards right with this terrible hand I’ve been dealt.

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.

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.