I Should Have Been Dead By Now

It’s almost my 31st birthday. This year, like every year I’m beyond grateful to have had another 365 days on this Earth. Looking back over the previous year I realise how much I have achieved. I might have travelled less than previous years, struggled a lot with my mental health, and seen friends and family less frequently that I would have liked, but I’m still alive. Quite frankly I should have been dead by now. In fact, on paper it should have died years ago.

I was told upon diagnosis in 2010 that people with my type of cancer at such a late stage lived for an average of 18 months. There have been numerous points over the past few years when I truly thought that I wasn’t going to make it for much longer. Having been diagnosed with stage 4 melanoma in two sites (brain and lung) at 23 it was a shock I made it to my 25th birthday, let alone my 30th last year.

Any money I have managed to save during working life has gone towards living a good life when I’ve worked less, paying for been able to live independently when I’ve been signed off sick from work for weeks on end, or going on trips and holidays to make the most of life when I’ve been feeling well enough. Saving towards a house or something more substantial feels impractical because I’m not sure I’ll have a future to be around and enjoy it. Now I’m 31, but I’m not sure how much ‘good’ time I have left.

Two years ago I was in hospital, having had surgery to remove cancer from my bowel for the second time. I had hardly any hair of my own, and what I did have was unrecognisable from my usual self. Four years I was also spent my birthday in hospital, having initial been admitted for suspect appendicitis at St George’s Hospital in London. It turned out to be my first bowel tumour and marked the start of me receiving systemic cancer treatment in hospital every few weeks.

I do feel as though I put pressure of myself to do things whilst I am well enough and feel able, therefore making the most of the time I’ve got left until I start to deteriorate. In reality I want to make the most of things, however lack of time and energy are huge factors. Naturally I want to make most of what I’ve got now, but I also need to stop, look around and appreciate what I have. It might not last must longer, so I need to pause and take stock. Some days are better and others are much worse, and accepting that has been one of the hardest parts of living with cancer.

When I was in my early 20s I thought I wouldn’t see my younger siblings grow up. Now they are grown up and are taller than I am! In a way time flies, but the long road has been full of twists, turns and more than my fair share of major challenges along the way. I’m often trying to charge forward in life and catch up with all my friends along the way, but I need to accept this is unlikely. Just to be alive and well feels like a miracle sometimes.

I should have been dead by now, but I’m still alive and considering my dire prognosis it’s a huge win for me to be doing so well.

The Rough And The Smooth

I used to find it so clichè when people described having cancer as being on a rollercoaster, but at the moment, it feels like one of the best ways to easily articulate daily life living with stage 4 melanoma.

In my previous post I mentioned that amazing news that my last PET CT scan results were stable. Despite this, I have felt very up and down over the past three weeks. Sometimes I find living with the side effects of cancer treatment can be harder that having the treatment itself.

Sadly the results don’t mean all my side effects from taking Pembrolizumab disappear over night, it’s probably quite the opposite as somehow I feel more aware of my body than ever before. Living with cancer has so many ups and downs, it’s mentally challenging and know from experience that the good news can change to bad very quickly.

Last week I dreamt I had five brain tumours, not one, but five! Negative thoughts like this will always haunt me, and dark clouds will follow me around wherever I go. I worry so much, particularly about getting a brain tumour. I had one removed when I was initially diagnosed with stage 4 cancer in 2010 so for me this isn’t an irrational thought.

Over the past few weeks I have been attending regular CBT sessions in order to help me managed my anxiety surrounding my diagnosis and the depression that comes with it. It is hard to accept that having been labelled as terminally ill it essentially means I am dying. It might not be today, or tomorrow, or in a month or perhaps even a year, but one day cancer will get the better of me. For all those people who suggest I could get hit by bus tomorrow and die instantly so I shouldn’t worry; trust me it is not that same thing. At the moment I’m taking each day as it comes, taking the rough with the smooth so to speak. When I’m in a negative spiral it can often take a little longer to ride out, even though I try to be a positive as possible.

According to the NHS website, Cognitive behavioural therapy (CBT) is a type of talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat depression and anxiety, and is based on the idea that negative thoughts and feelings can trap a person in a vicious cycle. The therapy aims to help people deal with problems that feel overwhelming in a more positive way, by breaking them down into smaller parts. Essentially learning how to change negative patterns and become more positive, looking for practical ways to improve a persons state of mind.

Through my experience so far I think CBT has been beneficial, however as I write this I am mid hospital appointment, having just broken down in tears. A hospital is the last place I’d ever want to be, but I don’t have a choice about coming to have treatment. Sometimes it’s all too much, even if the appointments are running to time. It’s not one particular thing that makes me emotional, it’s the whole treatment process. A classic example of a day which had been pretty unstable; I feel like I’ve experienced so many emotions in one afternoon. Hopefully tomorrow will be a better day and the CBT will continue to help me move forward living with cancer.

This July marks two years on current wonder drug Pembrolizumab and 7.5 years of living with stage 4 melanoma. Any tips on helping manage emotions would be much appreciated.

Lake District Five Peaks Challenge

Last weekend I conquered the Lake District 5 Peaks for charity, including England’s highest mountain Scafell Pike in just one day. I did this in aid of Trekstock, a young adult cancer charity I’ve frequently mentioned in my blog.

I found out about Trekstock through social media, and over the last 18 months I’ve found them a great source of support. Through the charity I took part in their RENEW exercise programme and also became involved in the BBC documentary A Time To Live by Sue Bourne. I have also benefited from other events they’ve organised for those who have experienced cancer.

The challenge, organised through the company Charity Challenge was without a doubt one of the hardest things I’ve done in my life! It was the most difficult physical challenge I’ve set myself so far. I was on my feet walking for the best part of 12 and a half hours straight and I found the trek both physically and mentally tough. I felt so many emotions in one short space of time; I laughed and I cried! (A lot!), but I’m proud to say I did it! I was the last person in my challenge group of 44 people to finish on the day, and I’m sure I said I couldn’t do it about 1000 times. My hips and legs became so tired that I had to give up my backpack for the last four hours, and the Charity Challenge team kindly carried it for me. I kept joking that the leaders should apply for World’s Strongest Man as they carried my backpack (as well as their own), whilst navigating across the boulders and rough terrain of the landscape. The whole experience reminded me of the type of person I am; I’m a fairly nervous person, I get scared easily, and the weekend confirmed that I’m certainly not an outdoor enthusiast! It took me longer than average to learn to swim, ride a bike and drive a car, so I shouldn’t be surprised I found the trek tough going! I know I won’t be signing up to adventurer Bear Grylls next TV show in a hurry.

Despite my initial disappointment at finishing last, I have to remind myself it wasn’t a race, I also had chemotherapy last Monday, so I know I should be especially proud. Initially it felt bitter sweet; the challenge reminded me that I am not invincible, and that having stage 4 cancer means I will inevitably find it difficult to do things that a healthy person could do more easily. As first I felt really upset, as it was a reality check, but it hindsight I’m just glad to have finished.

I’m still very sore and in pain, and pretty sure I’m going to loose a toenail but it was worth it!  Without sounding like an awards acceptance speech; I am grateful to my two wonderful friends that completed the trek with me (they must be mad!), I’ve never been so happy to see two people before. Huge thanks to the Charity Challenge team who made sure I powered through, and of course to the lovely Trekstock team. I know the money raised will continue to make a huge difference to people like me. It was lovely to meet so many other people connected to the charity, who gave me encouragement, supported and cheered me on until the bitter end. I’ll certainly be visiting the Lake District again soon, it isn’t an area of the world I’d visited before, and the landscapes were stunning. It goes to show there is so much beauty in England so close to home, I still have The Travel Bug, but I’d love to explore the UK more.
At the moment I’m not sure the Lake District 5 Peaks would be something I would do again in a huge rush, but knowing me I’ll probably end of signing up to something else in few weeks. Perhaps I should opt for a simple bake sale instead? Overall I feel a great sense of achievement. and I’ll be riding high on that wave for a while, even if I am still hobbling.
Raising money has helped to give me a sense of purpose, and it’s a great feeling knowing it can make a real difference, helping to improve the physical and psychological wellbeing of people in similar shoes to mine. In total I’ve raised over £1,100 for Trekstock so far, and if you’d still like to donate you can do so here.
I am also delighted to say that I had stable scan results at my oncology appointment last Monday, which is of course fantastic news. Now that I know, I hope I can relax more over the next few months and enjoy my summer adventures and birthday celebrations.

The Waiting Game

I am now playing the waiting game, having had a PET CT scan last week to check for any disease progression. I am keeping everything crossed and hope more than anything that my scan indicates my cancer has remained stable over the past few months.

Due to a Christmas break and Easter holidays It’s been over five months since I had my last scan, so I’ve had an extra long break from the anxiety that usually comes every three months. It’s safe to say if something is wrong I’ll be kicking myself for not having had a PET CR scan sooner.

Luckily I’ve been fairly busy over the past few days, which forms acts as a good distraction from all things melanoma related, but it doesn’t make the thoughts and feelings go away all together. I’ve had a few nights where I’ve been laying awake panicking about dying, a very real concern, but a very unhealthy thought process.

Waiting for results is the worst past of cancer treatment, my mind races with so many different thoughts it’s hard to keep on the right track and keep a grip on reality. In the past week alone I had three different medical appointments on three separate days, which in itself is exhausting. Having stage 4 cancer is a full time job and it will always be more important than anything else going on in my life.

My last four blood tests have shown I’m suffering from anaemia, which is not at all unusual for me, but is a bit of red flag. I’m normally boarder line when it comes to my haemoglobin levels, so I’m now taking iron tablets prescribed by my GP religiously in the hope they will help me feel less exhausted. I’m off to the Lake District to do the 5 Peak Challenge for Trekstock next week so I need to be on top form. I just hope it doesn’t lead to a blood transfusion!

When I had my PET CT scan last week I had a problem with my portacath. Over the last 12 months It’s been completely reliable, taking away the anxiety and stress of having a cannula fitted or blood taken every few weeks. Despite the nurses best attempts my portacath refused to bleed back, even though it was flushing normally. In the end I had to have the radioactive tracer for the scan injected via a vein in my arm, which was not ideal, as I have the world’s most pathetic small and thin veins! Luckily it was fine in the end, however there was probably about 20 minutes of failed attempts when my anxiety levels were through the roof (I previously had a couple of extremely bad scan related experiences).

Hopefully my portacath was just having an off day and will flush ok when I go for my next chemo appointment, otherwise I may need medicine to help unblock it! It’s the least of my issues but certainly adds to the stress of the whole treatment process.

Keeping everything crossed for my results!

I Can Hear The Bells

No, not wedding bells, but end of treatment bells! A few months ago a bell was installed in my local hospital’s chemotherpay suite. The tradition is that patients ring the bell when they have completed their final chemotherapy treatment, to signify moving on to the next chapter, and the end of a dificult journey, like some sort of graduation ceremony.

The words on the plaque next to the bell read:

Ring this bell
three times well
its toll to clearly say
my treatment’s done
the course is run
and I am on my way!

As this new initiative comes into play I have been hearing the bells more and more frequently on my hospital visits. The idea is that it is a celebration, onlookers cheer and clap to celebrate whilst a person rings the bell after their last round of treatment. Personally, I have found this particulary difficult during my more recent visits; having a stage four diagnosis, and no end date for treamtment means that i’ll be recieving immunotherapy for the rest of my life, so I won’t get that chance to ring the bell…ever!

Part of me understands the process and why it is important, however I’ll be the first to admit that I feel sad and also slightly angry that I don’t get to ring the bell, and can’t help but feel it’s a bit on an insensitive process for those who can’t. Not everyone will make it to the end of their treatment, or like me do not have an end date. If you’re in my shoes no treatment is a sign of impending death, as I cannot live without it.

I often think the ringing of the bell might be a bit premature, some patients may have to return for more treatment in the future, without having had a scan to check the drugs have done the job they were meant to. It seems to early to celebrate something that is so unpredictable, although I’m sure that being able to acknowledge the victory of reaching the end of a cycle is important and empowering to patients, but part of me will always feel it is unfair on those who aren’t able to celebrate in the same way.

I am sure that the bell ringing creates a feeling of positivity and hope for some, and marks the beginning of a new chapter. I can only imagine a life free of treatment and hospital appointments, and having something to symbolise the end of an awful ordeal. Maybe I am being overly negative or sensitive, but If someone rings the bell or not it doesn’t determine if they will go into remission or stay cancer free. Perhaps there are other ways patients can celebrate without it being so public?

I understand that there are now a number of bells in chemotherapy suites up and don’t the UK, and I am sure it is great for many patients and their families. However, I know I am not the only stage 4 patient in this position. No matter how hard I try to stay positive, I know I won’t get to the ring the bell, as I don’t have a future without cancer in my life. Yet again, I can add it to the long list of things I am missing out on.

Back To My Roots

The end of 2017 marked a significant change for me, no longer wearing a wig or having hair extensions, which had been a huge part of my life for the past two and a half years. Hair loss is daunting, heartbreaking and isolating, so I thought I would write a short post that might be useful for those who are currently experience hair loss due to cancer treatment, and are perhaps thinking about wearing a wig. I documented my personal experience with a couple of blog posts, Hair Envy and Letting My Hair Down.

Although I’m so pleased to have my own hair back, the thought I could loose it again with future treatment is never too far from my mind. I started to loose my hair towards the end of 2015 when I first starting taking Vemurafenib, and wore a wig on an almost daily basis for over two years. Due to a change in treatment, last summer my hair had finally grown enough for me to start wearing hair extensions, and I got rid of the wig all together. Sadly I didn’t manage to get rid of the wig before I turned 30, which was my original goal, but so far this year I’m be sporting my own long, curly hair, which is the best gift I could have asked for.

I had my extensions removed late last year before starting a new job. Fortunately a change in treatment has meant my hair is no longer affected by the cancer blasting drugs and my own hair has returned to its natural state. It looks the same as it did before it started thinning and falling out.

As a female loosing my hair was one of the worst  things that could have happened alongside my treatment, because it made me feel so ugly. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. Nothing screams I have cancer more than having no hair and eyebrows. When this happened It hit me just how serious my situation was. Now I have my own hair again I feel much more confident, althought the seriousness of the situation will never go away.

I’d read about how most patients loose their hair during treatment, and that when it does come back, it can come back a different colour, or a different texture. I’m lucky that mine has returned to how it was before my hair loss started.

When my hair loss first started I began to use gentle hair products and non-medicated shampoos, conditioners, and body washes, so without parabens. My scalp and skin became very sensitive so I steered clear of my usual go to products. When washing my hair I used gentle strokes and patting motions to clean my hair rather than scrubbing as I would have done previously. I used various products from Aveeno, Timotei (thanks poundland) and Sanex and also cut down the amount I washed my hair, having previously washed it every other day. I have since read that leaving a longer time between washes doesn’t prevent hair loss, but the less time I spent starring at clumps of hair in the bath plug hole the better. My scalp still feels fairly sensitive now I am taking an immunotherapy drug, so I still use the similar products on a daily basis.

I stopped using a hairdryer to dry my hair, instead using a towel, and made sure to rub it very gently. I found it was best to avoid too much heat from hairdryers or hair straighteners, so started going for a more natural look. This goes against everything my Nan said when I was younger, she’d always say leaving hair wet would mean I would catch a cold!

Once I began wearing a wig it became important for it to look as normal and natural as possible. I got two wigs on the NHS via Macmillan Cancer Support, althought I only ever ended up wearing one. It got to a point where it was my new normal, It was only when I took my wig off when I got home in the evening when it really hit me. I would go past a mirror and catch a glimpse of myself and suddenly remember that I was extreamly unwell, and that the drugs I have been taking to keep me alive and try to make me feel better were actually poisoning my body so much that I lost my hair, eyebrows and most of my body hair. I was filled with an overwhelming sadness and I still feel emotional thinking about it.

I knew people would notice when I started wearing a wig, as the style and colour were very different to my natural locks, so getting it cut and shaped by a professional hairdresser was really important, It made me feel more comfortable, as it looked more natural and felt less heavy on my head.

I used a hair brush from Denman specifically desgined for people with wigs or hair extensions, and washed the wig every few weeks in luke warm water using gentle baby shampoo, I was pretty shocked at how much dirt came out!

The best tip I was given was to use a clothes steamer to straighten my wig, it sounds bizarre, but it worked wonders on my wig after weeks of excessive brushing, which sometimes left the ends looking dry and brittle. I bought one from Amazon which helped to give my hair the glossy newly washed look.

I had hair extensions for about six months before it had grown long enough for me to feel happy and confident going back to my roots. It was very expensive, but I justified the cost by thinking about how much money I’d saved from not going to the hairdressers for a cut and blow dry for over two years! I’d reccommend to anyone if they want to speed up the hair growing process. I got too impatient and wanted to feel like I fitted in with everyone else.

I am due a PET CT scan in the next few weeks, which I’m already very anxious about. I’m hoping that pembrolizumab keeps me stable for the foreseeable future, as well as the obvious it would also mean I can continue to enjoy having my own hair again. I always used to want straight hair as a teenager, but nowadays I’m not fussy, I guess it’s one of those things you might not truly appreciate until it’s gone!

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.

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 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. 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 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 other person. I don’t like to think about my prognosis, my immunotherapy is working well, but I know ultimately the outlook isn’t good.

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 to someone 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 with stage 4 cancer? 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.

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.

World Cancer Day

Today is World Cancer Day. World Cancer Day takes place every year on 4th February and aims to save millions of preventable deaths each year by raising awareness and education about cancer, and pressing organisations across the world to take action against the disease. According to the Cancer Research UK website, Cancer is the biggest killer worldwide. however research has helped double survival rates in the last 40 years. The day is an ideal opportunity to spread the word and raise the profile of cancer in people’s minds and in the media.

Some game changing cancer treatments, such as Pembrolizumab, the Immunotherapy drug I am currently receiving have only been available in more recent years. My situation would have been very different if I had been diagnosed earlier in life. It’s incredible to think how much the treatment process for melanoma has changed over the last decade. Although huge progress has been made, treatments are painful, debilitating, and for others like me they are long-term.

Sharing my own story doesn’t always come easy to me, as I can be a fairly private person, but I know that is for the benefit of others as well as myself. In some ways blogging about my journey is part of my grief process for the life I once had; expressing myself through my writing is something I previously didn’t think was possible. I really want to make sure something good comes out of this horrific situation.

For me, the metaphorical and physical scars will never been healed; its is as though I am a puzzle which now has a few missing pieces that will never be fully complete again. When I was initially diagnosis with melanoma at 18 I felt my life was over before it had started, but its thanks to pioneering research that I am still here at 30. I know I am one of the lucky ones. Perhaps I don’t fulfil the typical demographic when it comes to my cancer journey, but what is actually considered normal? As they say, so far so good. I have my good and bad days, but I thank my lucky stars every day that I am still alive.

I passionately believe we need to continue research to help find a cure for this awful disease and am beyond grateful to those who dedicate their lives to finding it. I have huge respect for those who continue to raise funds and awareness of all forms of cancer. both individuals and charities such as Cancer Research UK, Macmillan Cancer Support and Trekstock. One day I know a positive result will come from all the hard work.

The Struggle Is Real

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

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

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

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

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

When you look at television adverts or posters, cancer patients are often seen in a positive light, overcoming illness and defying expectations. I guess this is meant to reassure us that cancer can be beaten by everyone, but it is often hard to comprehend the true reality. So far, taking antidepressants has made a significant shift in how I feel; I still struggle every day but the sadness and frustration feels less overwhelming. It seems there can be a stigma surrounding taking antidepressants, but I am not ashamed to admit I need a little help at the moment.

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