Trying To Live My Best Life

It’s well documented how hard a life with cancer can be for those going through it, however what seems to be less recognised is how hard life can be post treatment, not just from a mental health perspective, but emotionally and physically too. The past couple of weeks, for whatever reason, have felt especially challenging.

I am desperate to get on with my life and try to move forward, but having to balance this out with the expectation from others that I am doing amazingly makes it harder and harder to navigate. I’m forever living in an ‘in-between’ state from scan to scan. I am doing really well, but it’s not an instant ‘fix’.

Now I’ve been drug free for over six months I am slowly finding out what a life away from being a cancer patient is really like. I went to the GP yesterday for the first time in weeks, which feels strange considering my life revolved so heavily around doctors and hospitals appointments only a few months ago. Whilst this can only be a much needed and welcome change, it’s also been tricky to adjust to. I feel traumatised from the last 14 years of my life so it might take me at least another 14 to begin to move on.

I have been trying my best to take it easy, but also live life to the fullest as much as I can, and the two seem to juxtapose each other. It feels like I’ve been given a second chance in life I never thought possible but I’m not going to be skipping down the street in the rain anytime soon.

My friends would say that on the whole I am very positive, however it takes a lot of hard work to put my game face on. I still feel as though my life is restricted and will be short lived. I’m waiting for that lightbulb moment where the switch in my brain goes off and I start thinking otherwise, however I don’t know if it’ll ever happen, or if I’ll be able to find said switch.

I try my best not to think too much into the future, no one ever really knows what’s in store for them, and no future is ever mapped out to perfection. Recently I overheard a conversation on my commute with two people talking casually about future plans, which honestly made me feel scared for what may lie ahead. I still have the fear that I won’t be alive. I feel like I don’t know who I am without the cancer patient label. I attempt to push these thoughts to the back of my mind but it’s so hard, particularly when discussions such as this are frequent and often. The fear is what takes me to a dark place.

Over time I have learnt that nothing can ever be planned out like one would hope. I certainly don’t have a five year plan, It’s more like a five day plan to try and get through the working week and remain as sane as possible

A few weeks ago I finished my last counselling sessions and I currently don’t have any follow up lined up. I’m feeling ok right now, however I’m concerned about not having that outlet where I can fully speak my mind and not worry about judgement or upsetting others.

The phrase ‘Living My Best Life’ is thrown around so often, but for me this is it. This is the best it’ll get and it isn’t an Instagram worthy hashtag showing photos of me drinking cocktails on a beach. I feel like I am trying to balance on a unicycle, and if you know how challenged I am when it comes to riding a bike that department you’ll know just how difficult that is. Hopefully I’ll find a way to balance soon.

Melanoma Awareness Month

May is Melanoma Awareness Month, so I thought I would take an opportunity to write about the signs and symptoms. After all, it is the reason I write this blog in the first place.

For those who might not be aware, I was diagnosed with Stage 4 melanoma in September 2010 at the age of 23, having originally been diagnosed with Stage 1 melanoma five years earlier when I was 18. I am almost 32 and have been living with cancer the whole of my adult life. I initially began my blog to share my story and raise awareness, and since then I have appeared in numerous campaigns for cancer charities, featured in a BBC documentary A Time To Live and told my story in the Daily Mail’s You Magazine. I never have, and never will be a sun seeker, but my experience goes to show there is no discrimination when it comes to getting cancer.

When I was diagnosed with Stage 4 cancer, everything felt very out of my control and I felt all my independence was taken away from me. Looking on the bright side, I’ve now been living with my diagnosis for almost 9 years, and in some ways I am stronger than ever. The experience has shaped my whole life, so unsurprisingly I talk and write about it a lot. I struggle with the mental and physical of my diagnosis on a daily basis and are a constant reminder of what I have been through.

Melanoma is a type of cancer that develops in the cells (melanocytes) that produce melanin, the pigment that gives skin its natural colour. Melanin helps to protect the body from UV radiation from the sun. According to the NHS website melanoma is the fifth most common cancer in the UK and there are around 13,500 new cases of melanoma are diagnosed each year. Stats also suggest that more than 2,000 people die every year in the UK from advanced melanoma, which is higher than I expected, although I’ve always been told not to look at the numbers.

Melanoma is caused by skin cells that begin to develop abnormally. Exposure to ultraviolet (UV) light from the sun is thought to cause most melanomas, but there’s also evidence to suggest that some may result from sunbed exposure too. In 2018, Melanoma UK launched a petition for the ban on sunbeds in the UK after a successful ban of commercial sunbeds in Australia. The skin is the bodies largest organ so it’s important to take care of it as best we can. The charity also recommend regular self examinations can help lead to an early diagnosis and in turn increase chances of successful treatment.

The most common sign of melanoma is the appearance of a new mole or a change in an existing mole which can occur anywhere on the body. In my case, I had a suspicious mole removed form my neck in 2005. The NHS website has a handy guide on what to look out for which is detailed below.

ABCDE

  • Asymmetry – the two halves of the area may differ in shape
  • Border – the edges of the area may be irregular or blurred, and sometimes show notches
  • Colour – this may be uneven. Different shades of black, brown and pink may be seen
  • Diameter – most melanomas are at least 6mm in diameter. Report any change in size, shape or diameter to your doctor
  • Elevation or enlargement – some melanomas increase in size and may then become raised above the surface of the skin. Sometimes the mole can remain the same size and the area around or under it can appear to swell.

Follow Melanoma UK on twitter to find out more about Melanoma Awareness Month. It’s not ‘just’ skin cancer.

Learning To Love Myself

I feel like I am under a constant storm of clouds right now, just trying to stay dry whilst chaos ensues around me. I’ve finally caught the cold I seem to always be on the edge of and I also have a chest infection so I’m feeling a little sorry for myself this week. I’ve been spending as much time as possible in bed, where I finished this post I’ve been working on for the past four days. Still, I’ve got a weekend away to look forward to which I am very excited about! I just want to feel well; like when I wake up in the morning I can tackle the day ahead, rather than struggle to get out of bed. Hopefully a dose of antibiotics will do the trick!

It’s been a year since I wrote my blog post Singles Awareness Day. As I am sure we are all aware, today is February 14th aka Valentines Day; this is a day when everyone focuses on love, relationships, red roses and pink heart shape gifts. Perhaps, if you are like me it makes you focus on the lack of the above.

The suggestion is always that one needs to be happy in themselves before looking for love. It’ll probably always be a challenge for me to learn to be truly happy and love myself (scars and all) before I can let my barriers down and let anyone else in. I need to feel better from the inside out, I’ve neglected myself a lot over the years and this needs to change. It’s not going to happen over night, but if I’m not happy in myself, I’m certainly not going to let a man get close to me. If I don’t feel proud of my achievements, how will anyone else? Self love sounds very cheesy, but if I cannot see the positives in myself others around me won’t either.

At 31, if you’re not settled down It appears as a society we question it. I think others must think there is something wrong with me, but there is! I have incurable stage 4 cancer! I still have single friends, but increasingly couples are settling down, moving house and starting families. Days like Valentines Day serve as a constant reminder I’m not at the same stage in life. My successes (staying well, managing to work full time) are not the same as my peers, these are a given for 90% of those around me, they are just ‘the norm’ for others. I’ve been told multiple times over the years that I am ‘not the norm’ and boy do I feel that now!

It’s time to stop being so harsh on myself, to stop judging; and stop putting myself under the microscope of never ending scrutiny. There is no point in comparing my life to that of my peers, we aren’t in the same place, and it’s not a competition.

It would be nice to feel like a relationship could be possible one day. As I always say, I would’ve liked the choice, but I feel its been taken away from me with my diagnosis. I know it’s even more unlikely if I don’t make some changes to my attitude. I’d admire the ‘like it lump it’ and ‘this is me’ attitudes of other cancer patients I follow on social media, but it’s just not me.

Perhaps I’ve met a man I could be with, but I’ve been too busy keeping barriers up and focussing on my health that I haven’t even noticed? The idea having a relationship still feels so unlikely; like a fictional version of my life that will never really play out into reality. Who knows! Despite how positive things are looking In terms of my treatment I feel deep down no one wants to be with a terminal cancer patient. In the back of my mind I feel I don’t deserve it because my cancer status doesn’t make me a worthy candidate.

To be honest, I wouldn’t even know where to begin. For the past nine years I’ve put my body through so much; including multiple operations and some brutal treatment options which have multiple side effects. Each leave their own harsh physical and mental scars and often it is too much to deal with.

In order to move forward I need to accept what I’ve been through, and hopefully learn to be happy in myself first and foremost. I am a huge worrier, I am am not sure I can be truly happy and content in myself when I often feel my body is trying to kill me.

Every day I panic things will take a bad turn again. Cancer has magnified fears I didn’t have before, however It’s goes without saying that it has also highlighted the strength I can find within to keep going. I must stop beating myself up over my diagnosis and worrying I could have changed things. In this instance it doesn’t always feel like time is a healer!

Here’s to waking up tomorrow and feeling more over the weather than under it! And a happy goodbye to the Valentines gifts and paraphernalia for another year.

“Self-love is not selfish. You cannot truly love another until you know how to love yourself”

Fighting Fatigue

Since Christmas, I’ve noticed I’m in need of more sleep, perhaps In part it’s the cold winter weather and dark mornings, however I feel I have been fighting fatigue more than ever recently. It’s not ideal given that I had a chemo break over the new year, and in theory I should be feeling more awake and energised than usual.

I long for the day when I wake up and actually feel revitalised and refreshed from catching my z’s, rather than feeling like however much I sleep I get it’s never going to be enough. At the weekend I slept for 11 and a half hours, only to wake up get washed and dressed and go back to sleep. I’d slept for nine and a half hours the previous night so I can’t blame it on a lack of sleep the night before.

Everyone always tells me to listen to my body, but right now I feel as though it’s constantly running on empty without a way to refuel? Sometimes I’m so shattered that I practically spend a whole day in bed, I worry that I’m wasting the day away, this precious time whilst I am ‘healthy’ but feel like I have no choice! It is so frustrating being chronically tired, I think it often adds to my depression and negative feelings.

I’ve learnt there is a lot of power in taking a nap, but it’s certainly not the fatigue beating cure I’m searching for. Perhaps it makes things worse? Recently I’ve been going to bed around 9pm and sleeping for as long as physically possible, by the time 4pm comes around at work I feel like a zombie, struggling to keep my eyes open, I am done for the day and in need of a sugar hit to keep me going. At the weekends naps and a must, and I wonder how on earth I manage Monday – Friday without them. I sometimes wish my office had a little room where I could go and lie down for an hour.

Often, even though I’m exhausted, I have nights where my worries keep me awake and it’s difficult to settle, which make the following day even worse. Tiredness affects me both mentally and physically, and it can be really isolating as I am always envious of others who seem to have boundless amounts of energy. I often end up postponing or cancelling plans because I simply don’t have the energy. Having spent the past four and half years on treatment I don’t think I know what being awake and refreshed feels like anymore. I thought I’d gotten used to feeling this way but perhaps not if that past few weeks are anything to go by.

I know that keeping active can really help reduce tiredness, but it can also make me more exhausted, so I feel like I can’t win. Hopefully it’ll pass as the days get longer and lighter. I’m bored of being physically, emotionally and mentally tired.

Blue Monday

According to reports, a combination of bad weather, post-Christmas financial struggles and failed new year’s resolutions make today the most depressing day of the year, aka Blue Monday. This is the day when we as a nation are supposedly the most miserable; the nights and long and the days are dark, and its still a week until pay day! Understandably, all these factors contribute to feeling a bit low at this time of year, however I read that the term was originally made up by a travel company as a gimmick to sell summer holidays a few years ago. Interesting!

As my treatment cycle takes place on a Monday, I’ve had my fair share of my own Blue Mondays over the past few years. My low feelings are not dictated by a formula, or specific date in the calendar so I’m not sure Blue Monday is as legit and some make it out to be, however it can only be a good thing if it encourages people to talk about feelings and therefore acts a chance to break down stigma and in turn raise awareness of mental health issues. I’ve made no secret of my struggles over the past few years, but more specifically over the last 18 months.

I’ve not written a blog post since the start of January, mainly because I haven’t felt like I’ve got much to say, but I’m also consciously trying to cut down on my technology and social media use, particularly during the working week. While social media is an incredible tool, sometimes aimlessly scrolling through apps doesn’t help my my mental state, and I am sure I am not alone in that. It’s certainly not one to help on a Blue Monday! As I wrote my previous post Goals For 2019, I am trying to shift the focus to doing more of the things I enjoy, such a cooking and socialising.

Yesterday I made two dishes for the week; a leek, potato and pea soup from a recipe by Jamie Oliver, and Deliciously Ella’s warming winter curry recipe. My week feels more manageable if I’ve done some prep which means I don’t have to come home and think about what to cook for dinner. I find the working week tiring enough! I’ve enjoyed doing a bit more baking recently and I also made some very questionable looking (but very tasty) cinnamon rolls. Baking was about the only activity I took part in when I was living back at home after I had my first operations to remove an brain tumour and lung tumour around eight years ago. It was something creative I could do without the need leave the house. Encouraged by my family, baking a cake gave me a goal to aim for and I found solace in this solo activity. The first recipe book I was a given was the Hummingbird Bakery Cookbook and I’ve gather a collection of books over the years, from Mary Berry, 15 Minute Meals to Part-Time Vegetarian to name a few. For Christmas I was given two new books, New York Cult Recipes and The Little Swedish Kitchen.

As well as being organised for the week ahead I’m going to go for a walk this morning to go to a local cafe on my way to the gym before going home to work. Nothing says Happy Monday more that a nice little treat too start the week. I know there will be plenty more Blue Mondays and down days to come, so making the most of the good days when I feel well in myself is really important.

Goals For 2019

I am not really a fan of new year, and setting resolutions, let’s be real, Its probably not going to happen, so why am I pretending! Like many years, I just hope I’ll be well enough to see the next one in! I have problems which I know cannot be solved, and trying to force myself to be someone new just because it’s a new year isn’t going to make those problems disappear.

I came across the below quote on instagram the other day and thought it summed up perfectly exactly what I should be focussing on over the next year and beyond.

“So, what if, instead of thinking about solving your whole life, you just think about adding additional good things. One at a time. Just let your pile of good things grow.”

2018 has been a year with some huge highs but also some massive lows. I think the whole ‘coming of age’ thing has been a huge part of my insecurities and I have really struggled with my mental health. As each year begins, I start to worry about the year ahead, and the challenges life may throw at me, both with or without cancer. It’s hard enough being a single 30 something trying to get by in life without having a serious illness to contend with. I have a GP appointment next week, followed by pre treatment bloods and then I am back in for chemotherapy mid-January. Although a Christmas break is much needed, it doesn’t take much for the focus to shift back to the dreaded C word. I’ve come up with a short list of things I am going to try and do to make life seem a little less daunting each day, just taking some time for myself to focus on non-cancer related successes or key moments. Not a resolution which will no doubt be broken, but key things to try and help me live my life as well and happily as I can.

Make regular lists of things that make me feel happy…and do more of them

This could be something small like going out for brunch with a friend or family member, calling a friend I’ve not seem or spoken to in a while, or going out for a walk and getting some fresh air. If I make a list then I hope I’ll put more effort into doing them again because i know they bring me joy. I used to be a huge theatregoer, having graduated with a drama degree before my stage 4 diagnosis, but I could count on one hand the amount of times I’ve been to the theatre (non work related) in 2018, and feel so out of the loop with what is happening in theatre land, even though I practically work in the West End. I need to put more of a focus on doing things for myself, no matter how small they may seem. I love the theatre so I want to try and add this as one of my additional good things over the next year. Not doing this seemingly obvious things makes me feel like I’ve lost my way slightly and in turn lost a bit of my personality. Do shout if anyone has any good theatre recommendations, both London and beyond.

Spend time with supportive people

It’s important for everyone to be around good people, or in situations where there is a lot of support. We need radiators and not drains in our life, a good friend of mine uses this analogy often and it really hits the nail on the head. Radiators are those who give warmth, those who gave something back to others. They naturally have their own problems and situations where they need support, but generally, seeing them, or interacting with them is a hugely positive experience. For me, these are the ones who lift me up and listen, those who make me feel better about the injustice of the world. Drains are the opposite; those who drain energy and take more from the friendship than they give and don’t always listen to others.

Be grateful

No matter how hard it seems we all have something to be grateful for, even on the darkest of days. I went on amazing holidays in 2018, which I am hugely grateful for. My trips in 2019 will be much smaller scale, but it was completely worth it and the experience will stay with me. Apparently those who take time to notice and reflect upon the things they’re thankful for can experience more positive emotions, it’s a no brainier really. Focus on the good! Being grateful doesn’t need to be reserved for big occasions, but simple daily activities that bring joy. Part of this also includes thinking more carefully about my use of social media, and be sure to use it for good, rather than comparing my life and my successes and failures to people online and feeling bad about it. I must remember I survived the last year and I am grateful for that. My ultimate goal is to stay alive!

Here’s to 2019!

Another Year With Cancer

Another year seems to have gone by in a flash! Christmas 2018 is upon us and I’ve been thinking about everything that has happened over the past year.

In some ways in been a quiet year in cancer terms, I recently had my 41st cycle of Pembrolizumab and all remains calm on that front. Luckily I have a break built in over the holidays and I am not due back at Leicester Royal Infirmary until mid January. Hooray!

My scan results in early December indicated all remains stable, which is fabulous news. It doesn’t mean I’m cured of cancer, or that I’m in remission, however it shows how amazing Immunotherapy is and that things are continuing to move in the right direction. I know my fourteenth year with Melanoma will continue to challenge and surprise me, but hopefully I can turn this in to more of a positive.

In the last twelve months there have been some highs (trips of a lifetime, new family members) and some lows (feeling overwhelming sadness for the life I feel I’ve lost, getting major FOMO, feeling left out and generally feeling not good enough for others). The stability of my mental health has been hugely challenging, and there have been multiple times where I’ve felt I had control of life; only to realise that I couldn’t be further away from feeling in control and it actually feels as though my whole world has come crashing down around me. Even as recently as last week! I haven’t felt as bad as this since I was first told I had a brain tumour over eight years ago. With another year looming I’ve began to worry about the year ahead, and the challenges living with cancer might throw at me. No amount of therapy or medication will make this disappear, but it’s slowly making things a bit easier. I know that I will have to continue combating my anxiety and depression in 2019 no matter what life throws at me.

In truth, I’ll never quite get my Christmas miracle of a cure for stage 4 cancer, but I can still dream. Deep down what really matters is spending time with family and people I care about during the holidays. Last January I started a full time job alongside chemo, and it’s meant down time has been less of a feature in 2018. That crazy thing is, I did it! I held down a full time job whilst having treatment for twelves months and I am determined this will follow through into next year and beyond. Often I don’t feel as that I have many ‘successes’ so to speak, but If I had to pick something I am most proud of in the last year, that would almost certainly be it.

As ever I’m apprehensive about the next 12 months and hoping it’ll be peaceful and calm.

Wishing everyone a Merry Christmas and a very Happy New year!

The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

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 and 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 North East London, so it almost feels like a new city, having discovered parts I would never have seen before.

I still get 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!

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.