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!

Flying Solo

Next month I am flying solo in more ways than one. I’m heading off to Asia for a wedding, and then doing a little bit of travelling alone. Being a stage 4 patient the thought of being in another country travelling solo is petrifying, especially when it’s to countries I’ve not been to before. I keep waking up in the night panicking that I’m going to die on my travels with none of my family around me, this probably seems ludicrous to others, but it’s something that has been playing on my mind. No matter how much I try this always niggles at me when I’m far away. Realistically, I don’t want to travel alone but I am sure it’ll be an amazing experience, I didn’t go travelling during my last minute gap year so It seemed like too good an opportunity to pass up. I had a bit of a YOLO (you only live once) and FOMO (fear of missing out) moment when booking the trip around a year ago. I just kept hoping I would be around and well enough to see it through, and thankfully I am.

I begin my trip at a wedding with around 40 other guests, including spending the first part of the trip with some very close friends, so I won’t be short of people to chat to and share experiences with there. It’s been a long time coming and I literally cannot wait to spend quality time with friends! I also end my two week trip in good company, which is very lucky. I’m spending about 7 days on my own in total, and although I’ve travelled to places by myself to meet friends before, I’ve never spend that much time exploring alone. I am a little apprehensive about it, but there is no backing out now. A few years ago I spent three days in Barcelona on my own, I loved the city but I missed sharing the experience with another person.

I’ve chosen to travel alone because I may not have much time left; I love going on holiday and always want people accompany me, but I want to seize the day and create some good memories of life outside of the terminal illness vortex, companion or no companion. I am yet to figure out exactly what I am going to do yet, but I do love a plan! I have my bridesmaids dress, factor 50 sun cream, malaria tablets and new camera at the ready, and I intend on spending this weekend looking at guide books and scouring the World Wide Web to find out more about my go place and activities for each destination.

I am sure its going to be an amazing once in a life time trip, and I’d rather travel alone than not go at all. It would’ve been nice to have someone to share the experience with, but I didn’t want to miss out just because I’m single. I’ve been told by many experienced travellers I’m bound to meet people along the way, but if I don’t that’s ok by me. I just hope I don’t end up talking to myself too much!

Being single is a lonely, especially at 31, but so is living with incurable cancer and the two do not make for a great combination. As mention in my blog post Singles Awareness Day back in February, I feel due to my cancer diagnosis I cannot offer a future to someone else. I honestly can’t imagine having a permanent holiday companion and a plus one for life.

As we get older the stakes are higher, I’m sure there are loads of men out there with baggage, but the reality is my diagnosis creates a huge barrier. As we get older it becomes increasingly frustrating; the pool of soul mates keeps getting smaller and smaller, but my illness prevents me from letting my guard down. Maybe I have focussed too much on working and keeping sane that way? but nowadays it feels like there is a time pressure on finding someone and settling down. With life being so uncertain and fragile it feels like I have nothing to offer in that way. Who wants a life with terminal cancer patient on active treatment and on medication for depression anyway? Like it or not there is a huge stigma about being a single female in your thirties, all of a sudden it feels alienating, and with cancer on top this is a total nightmare!

At my age people start thinking more in the long term, I’m in the minority with most of my friends who are settled down. Personally, I cannot think in the long term; I feel like it doesn’t exist in my world, so how I am meant to move forward?. Having cancer has taken so much from me, not just having a wedding / holiday companion but the overall prospect of a relationship and starting a family. Cancer won’t ever let go of my life, there is no remission or stopping treatment in sight and I have to accept that I may never meet a man and settle down. The short answer is I can’t. I am not at the same stage as my peers, although part of me is relieved that a boyfriend isn’t going to be dragged through this living nightmare, the future does feel lonely. It isn’t so much that dating is on my mind, but singleness definitely is.

I’ve heard of people in unhappy relationships who have experienced a light bulb moment post diagnosis and left their partner, having a new found appreciation for life. I feel I didn’t even get the chance to really begin the search for ‘the one’. For me, the sky isn’t more blue, the grass doesn’t looked greener and I’m probably not appreciating the small things in life as much as other people, quite frankly I don’t like the feeling of sand between my toes – it’s too hot and it gets everywhere!

Having said that, of all the bad things cancer has given me I’ve certainly been shown a lot of love and compassion over the years. I am fortunate that there are some wonderful people in the world experiencing this awful journey with me, even if they aren’t my wedding plus one.

The British 10k

I’ve decided to take on another race, the The British 10k in preparation for my Northampton Half Marathon in September. I know, I know, here I go again…

I recently took part in the Lake District 5 Peak Challenge for Trekstock. I know I’ve since moaned a lot, but It was the most mentally and physically tough challenge I’ve set myself to date, and I’m still a little injured because of it. Despite everything I wouldn’t change a thing.

Completing the 10k will determine if I’m on track for the Half Marathon for The Lewis Foundation in Northampton in September, so I am testing the waters so to speak. I’ve ran a half marathon before however I was much fitter then and the treatment I was having meant I could sustain a good training routine. This time around I haven’t done any running and have hardly set foot in a gym since late last year. My body moves slower than it used to and the frequency of treatment means I suffer debilitating fatigue for days on end.

Despite everything I feel like I have to do something, even raising a small amount could help make a big difference. I know the weather is set to be much nicer than when I did the London Winter Run 18 months ago for Cancer Research UK with family and friends, so that is a bonus.

Over the past few months I’ve been following the story of fellow stage 4 melanoma patient Emily Hayward via Instagram and You Tube and learnt today that she has sadly passed away. I know I am not alone when I say her story touched so many lives, both with or without cancer. I found her vlog really compelling as there are so many parallels with our journeys. She has inspired so many people with her strength and positivity, not just those with Melanoma but others undergoing immunotherapy and chemotherapy too. She maximised the good days, and chatted about making her days matter, and making her life count even though the odds were stacked against her. Emily accepted her diagnosis and lived life to the full every single day. There have been other great Melanoma blogs such as Dear Melanoma and Wrestling Melanoma I’ve followed over the years but sadly those people have since passed away too. Who is to say I won’t be next? No one.

News like this hits home hard! It’s a scary reality and I’m petrified about what may come, in an instant one can realise that life is so fragile, and so bloody unfair. The cancer club is a horrible club to be part of, but it is full of very incredible people.

I need to feel like I’m doing my bit; as I’ve said before it gives me a sense of purpose and focus. I want to make sure my life counts, and make each day really matter, I guess perhaps we only have one life after all?

The NHS is an incredible resource which we are very very lucky to have in the UK, but charities like Trekstock offer support that I haven’t always found elsewhere and feel it’s only right to try to make a difference in the hope it’ll help others like me moving forward, either experiencing a life with cancer, or a life after cancer.

If anyone is free early morning on Sunday 15th July and in central London, do feel free to come and cheer me along during The British 10k. I’m not sure I’ll be running, as I still need rest and don’t have time to train, but even if I’m walking I don’t mind, just as long as I cross the finish line. If anyone does wish to sponsor I’m looking to raise £200 from this event, and will also be raising money in August ahead of the Northampton Half Marathon. A link to my page for the 10k is here.

I’ll never understand why life deals some people such a bad hand; I feel overcome with emotion just thinking about it, and at the moment I’m one of the lucky ones which seems bizarre. Life is short, and I want to live mine to the fullest for as long a possible. I don’t want to waste a moment of this precious life. I just wish I had the answer on how to fix things.

Still hoping for a miracle.

Confidently Speaking About Cancer

It seems that for the most part I can write blog posts about my feelings, even speak on national television about my cancer journey, but often when It comes to smaller settings, or even a one-to-one, I clam up and become emotional. Having cancer has affected my confidence in so many ways, it varies each day depending on how I am feeling.

I can struggle to express things to friends and family, often just opting for telling people I am ok, but I don’t mind frequently sharing my thoughts online for anyone who wants to read. I don’t quite understand why I react in this way. Perhaps because some forms of sharing feel like the are more for the ‘greater good’, and could help others as well as myself, so somehow feels more worthwhile. In some ways I feel more detached from my story, but if an individual asks me about my hospital visits, even if I know them really well, I start forming tears almost instantly. My confidence levels can change daily, I certainly don’t feel confident when I am having my treatment on the chemo suite surrounded by lots of other unfortunate people. During one of my recent visits I had what I would describe as a breakdown moment. sitting in the chair waiting for my drugs to arrive I became overwhelmed with negative thoughts and burst into tears. Life is unfair, it really is, I needed a good cry that day, but no amount of crying will change my situation. One of the nurses kindly pulled the curtain around the area I was sitting (not that a flimsy blue curtain is at all soundproof) and went to get and get my mum who was in the waiting room.

A friend asked me a few months ago if I had considered filming a blog or starting a podcast, but the idea scares me much more than writing things down. With a vlog or podcast it is different; I feel I would be judged in so many other ways, and feel as though I wouldn’t have anything new to say. What if no one watches it except my parents, and, if people do, I fear it won’t be interesting or engaging enough. Vlogging or creating a podcast seems like a bigger investment somehow. Who really wants to know what I did on a day off? I also don’t like the sound of my own voice; it is my voice however, and it isn’t going to change, so I should just be comfortable with it. I also have a lot of scars, including a particularly huge one of my neck form my original melanoma site, so the thought of creating a video where I am the subject feels strange to me. When Sue Bourne and he team filmed me for A Time To Live they followed me around for a few days, I got to know the small crew and felt secure with them. I still think I look odd and slightly uncomfortable on camera though!

If someone was asked to describe me I’m not sure what they would say; in some ways I’m confident, but in other ways I feel cancer has crushed my confidence and I can’t move forward. On the outside I seem fine, but on the inside it can be a different story. My fear with vlogging would be that others would be hoping to see a happy person or hear encouraging words on how to be powerful and strong and brave, but I often don’t feel that way. People want to see positive stories, but what if I can’t give that? Not every day is a good day, I try to muddle though as best I can.

I’m often happy with my own company, or having the house to myself for a night, but cancer is a lonely place, and I don’t think I benefit from having down time, as it’s gives me too much room to think. Towards the end of 2017 I felt I was in a dark place and was prescribed antidepressants which I’ve now been taking for over six months. This has helped take the edge of and feel like I can still get through a day unscathed. Often, if I am around people I trust and love I can be the most chatty person in the room, but put me in front of  new people and it is a different story all together and my confidence is non existent. Ultimately I am just me and I should accept it, but cancer has changed me forever in so many ways, and I can’t go back to the younger, carefree, drama student version of myself.

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.

Its great feeling knowing the money raised 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 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 ever 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 It is clear that I need a little help at the moment.

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.

New Year Challenges

After deciding against another running challenge in 2018, my lovely school friend Emilie has taken one on and is doing the Brighton Marathon to raise funds for Macmillan in April. I’m proud of one of my oldest friend for taking on this marathon challenge  (pun intended) and I’ll be going to cheer her on during the race. You can find out Em’s story here.

Macmillan have been a huge source of support for me, from my Skin Cancer specialist nurse to various online resources and assistance with various different application forms. I’m really appreciate Emilie’s dedication to a cause that’s so close to home. Later in the year I am going abroad for her wedding to be a bridesmaid so it’s set to be an epic 2018.

I’ve decided take on a different challenge in the new year and I am hoping to do the Lake District 5 Peak Challenge with Trekstock later in the year. I’ve never been to the Lake District before, so I thought it would be a great way of doing something new whilst also raising awareness for young people like me experiencing cancer. Over the past 15 months I’ve received a lot of support from the small London based team which has been invaluable. The challenge runs over one day. The climb goes up to over 3,000 feet, covering approximately 14 miles. I need to work out some sort of training that might help. Any one up for a walk around Hyde Park with a large backpack?

I am seeing in the new year by relaxing at home, which seems like a nice chilled out end to 2017. I am keeping everything crossed that my cancer will continue to be stable in 2018 as I have new opportunities and adventures in the pipe line!