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!

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.