Dear 18-Year-Old Me

Within the blink of an eye another year has passed and I am almost 32! I am beyond grateful to have lived another year on this beautiful planet we call home. Who’d have thought I’d be happy about getting old?!  So far 2019 has been good to me, and my life has changed beyond recognition, having only stepped foot through the doors of Leicester Royal Infirmary a couple of times this year, for a PET CT scan and subsequent results. This is the stuff dreams are made of, and despite multiple daily reminders I am slowly getting used to being free from cancer treatment.

Over the last year I have been fortunate enough to travel a fair bit around America and Thailand; I also visited Cyprus in the autumn and have since been on a couple of city breaks Florence and Vienna, as well as various trips around the UK to Newcastle, Torquay, Nottingham and the Isle of Wight. Right now, it’s not all bad.

I’ve beaten the statistics in so many ways, I almost feel I don’t really deserve to be referred to as a stage 4 patient right now. Melanoma is being treated so differently to five years ago and currently I feel like I’ve been given a golden ticket and a chance of freedom.

Three years ago I was in hospital, having had surgery to remove a tumour from my bowel for the second time. I managed to get discharged the night before my birthday, but the celebrations passed me by that year. Five years ago I also spent my birthday in hospital, at the time I was admitted to St George’s Hospital in Tooting, South London for suspected appendicitis. It turned out to be my first bowel tumour, and I remained in hospital for ten days before being admitted to Leicester for emergency surgery. In July, once I’d recovered from the operation I began receiving Pembrolizumab in hospital every three weeks.

Who knows how the next year will go? At the moment it feels very promising, but nothing will ever be certain. With it also being Melanoma Awareness Month, I started to think what advice would I give to me pre cancer 18-year-old self if I could write them a letter about what was to come over the next 14 years.

Inspiration for this letter is taken from the 2011 video ‘Dear 16-Year-Old Me’ by the David Cornfield Melanoma Fund.

Dear 18-year-old me: A letter to my younger self.

Congratulations for making it this far! This is a big year; far bigger and more challenging than you will have ever known before. Some fantastic things will happen this year; you’ll pass your exams, your driving test (at last!) and go on a fun girls holiday. Despite this, you’re going to have a lot of shit to deal with other the next few years, so don’t sweat the small stuff.

When you hear the words ‘you have cancer’ and find out It’s stage 1 melanoma, please don’t panic. Its not nearly as bad as it seems (for now anyway). Melanoma is a type of skin cancer, It develops from skin cells called melanocytes. The mole you had removed from your neck was melanoma – A key piece of advice – don’t ever go to hospital appointments on your own again!

The next 12 months won’t work out the way you would have liked, you must remember not everyone’s path is the same. I know a gap year seems like the last thing you want right now, but it’ll all work out in the end. You didn’t want to go to university in Scotland anyway! Stop comparing yourself to your peers, it won’t help. All good things comes to those who wait, right?

The small scar from you mole removal will become a lot bigger, and more prominent. People will ask you about it; but don’t let it get to you. They won’t know how to react to your story and this won’t really change over the next decade. Embrace university life, believe it or not this part will be the calmest and least stressful of all.

You’ll find out you have stage 4 melanoma at 23, but you can handle it. You’re tougher than you think. It’s not an immediate death sentence despite what you’re told.

You will recover from major brain surgery, and lung surgery too. It’s a lot to take on, but your vision won’t be affected permanently, it’s always been bad anyway! Once you’ve had you lung tumour removed it’ll be seriously painful, but you’ll be able to breathe and walk properly again. A short post-surgery cropped hair cut will actually suit you. Thank Emma Watson for the hair cut inspiration!

Your life will be so so mentally draining and physically tough, but you will get there. Listen to your body and be kind to yourself.

Your friends won’t disown you because you are ill; it turns out this brings you closer together. You’ll still laugh with them like you did before cancer stole your freedom. You’re driving licence won’t be revoked forever, it’s not the end of the world. You will drive and have your own car again in a few years! Your friends will visit you when you are unwell and give you an excuse to get outside. Eventually, you will go back to work; you could’ve done with a bit more time off but you were being stubborn. Remember, part-time work is the way forward, don’t be fooled, only stupid people work full time!

Embrace your down time, you’re going to need it. Post brain surgery chronic fatigue will plague you for two years, but you will eventually get a handle on it. All will be relatively clam for the next few years and despite what it seems, your oncologist is capable of giving you good news as well as bad.

You will make a lot of new friends over the next few years who don’t care that you have cancer. It’s not what they see when they look at you, so please make sure to keep reminding yourself of that.

Like a boomerang, melanoma will come back again, this time in your bowels. Sadly it felt inevitable and you knew that. Try to embrace your scars, they tell you story of survival. You must remember that you cannot blame anyone or anything, it’s not your fault you have cancer. Anyone who tries to tell you differently can do one because they aren’t worth knowing.

When you start systemic treatment you will loose your hair, much of the confidence you’d built back up will be lost again. People will treat you differently now they can see you’re unwell. It won’t last forever, other treatments are been developed and believe it or not you’ll only wear a wig for two and a half years before you hair grows back. It sounds like a really long time, but just like your driving license it’s not forever.

You’ll feel close to death numerous times. You’ll write your will because you are sensible; cancer didn’t change that. You’ll have a lot of different treatments over the next four and a half years and by some miracle you’ll survive. You spend time  learning about treatments and how to pronounce words you’d never heard of  before. The NHS is incredible, be thankful. Always.

Eventually you’ll find the strength to tell you own story, and not feel so ashamed. You’ll write a blog, and be interviewed in magazines and on television to help raise awareness of skin cancer. Your story will inspire others so keep going. Talk to someone when you need to, its not a sign of failure or weakness. Just do what you need to do to get through the days / weeks / months and years living with this illness. Do all you can to raise awareness of melanoma and the important charities that have helped you along the way.

Stop worrying about what other people think and be yourself. You’ll make it to at least 32 and be alive for so many moments you thought you would miss. Tell people to cover up in the sun, repeat it over and over again and don’t stop; never ever apologies for it.

Just Live!

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 to be 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 ago I 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.

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.

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?