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.

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!

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.

A Spring In My Step

Over the past ten days I’ve started to notice a major change since the end of my cancer treatment. After approximately six months of being free from Immunotherapy, I’ve finally started to feel less fatigued, or at least I think I have!

I recently had a couple of weeks off work, which allowed for some much needed down time; it culminated in a trip to the Isle of Wight to see one of my friends get married. It was a fantastic weekend, full of sunshine and dancing and on the evening itself I didn’t get to bed until the early hours! I couldn’t tell you the last time that happened, and I’m not sure I could’ve done that a few months ago! The day after the wedding I felt exhausted, but in a different way to after hospital treatment. I felt really tired, but it certainly felt different to the extremely fatigued, glazed over sop-you-in-your-tracks feeling that I have been so used to. It was a great realisation that perhaps the long term effects of receiving cancer treatment might be fading slightly, therefore allowing me more room to breathe. Once I’d caught up on sleep, I felt really happy I’d danced the night away.

Despite feeling as though I have more of a spring in my step, I still feel broken by everything I have been through, and I know that feeling will never go away (or at least not easily). Over the past two years I’ve seen three different counsellors, had CBT and now take regular antidepressant medication and I am not sure my mental health will ever truly recover.

No matter how hard I try, I still have days where I am completely exhausted by the whole process of just living my life. It’s hard to navigate in this new world I’ve suddenly found myself in, I’m still baffled that I haven’t been to go to the GP in the past month. It’s literally blown my mind! This must be what other people feel like?!

I still live in constant fear of disease reoccurrence and I have frequent dreams about my demise, include finding out I have another brain tumour, or being in constant abdominal pain due to another bowel tumour. Sometimes I wake up and It takes me a moment to two to realise it wasn’t real after all. I don’t want cancer to define me, but it has been such a huge part of me that I am finding it hard to separate my life with cancer and my new regime without treatment. This is what I have dreamt and hoped for, but it’s much more difficult than I ever imagined it would be. I hope that in time I can start picking up the pieces of my shattered existence and start taking small steps forward again.

I haven’t written on much on my blog recently as I’ve been trying navigate in the new world I’ve recently found myself in, and hoped a blogging break  would help me to feel less like cancer is still ruling over my life. I do think it has helped, but I also find writing is a little like therapy, and helps in a similar way to my counselling sessions. 

I have a busy month ahead as I am due to celebrate another birthday in a couple of weeks. All birthdays are milestones for me, and I am very happy to be turning the glorious age of 32. My situation has changed beyond comprehension in my 31st year. Having been diagnosed with stage 4 melanoma with metastasis in my brain and my left lung at 23, it was a shock I made it to my 25th birthday, let alone my 30th a couple of years ago. I also never thought in a million years I’d seen the younger members in my family grow up, but two are about to enter into the adult world, and we had a new addition join our family at the end of last year, which has been life changing. These are life events I never thought I would be alive to see, and when I think about it, this makes me the happiest. I know I need to keep reminding myself of how far I’ve come and try to use this to my advantage.

I hope my energy levels continue to increase and get more plentiful as time goes on. I’ve already got the date for my next PET CT scan in July, so I am hoping and praying i continue to reap the rewards Pembrolizumab has offered me so far. 

Finishing Cancer Treatment

This is a blog post I never thought I would write, I’ve been keeping some news to myself over the past 12 weeks, which is a pretty big deal. I am no longer receiving Pembrolizumab on the NHS. For now, I have finished taking the drugs and am treatment free and am adopting a ‘watch and wait’ approach.

I am no longer making the trip to Leicester Royal Infirmary every three weeks for Immunotherpy and am now on surveillance. After receiving various chemotherapy and Immunotherapy treatments over 4 and a half years I have now pressed pause on this part of my cancer journey. This means I will have regular scans to check for disease progression and wait to see what happens, and make a decision about future treatment when the cancer returns.

For me, being told my stage 4 cancer diagnosis meant I’d likely live for 18 months back in 2010, It’s difficult to know how to process where I am at right now. This remains even more difficult to explain to others, and I am sure there will be many reading this blog post who will ask how and why this has happened. Some my query the status of my health, does this mean I am cured?! Sadly not, but for now at least, it appears that my melanoma is under control and my last few scans have appeared to show little or no evidence of disease present in my body. Melanoma is hiding away for now, however, it is an aggressive cancer so I really don’t know for sure what could happen later down the line. All I am able to do for now is to attempt to live in this new world and continue my day-to-day life, in the hope it’ll be a really really long time until I have to resume treatment.

I am simply waiting, and taking things one day at a time, as only time will tell if and when my cancer will return. I have been on ‘watch and wait’ earlier in my stage 4 journey; after surgery to remove my lung tumour in January 2011 I remained disease free until May 2014. I still had the occasional subcutaneous lump crop up somewhere that was surgically remove, but for the most part was considered NED (No evidence of disease).

Pembrolizumab has been my life line over the past two and a half years and 40 odd cycles later I am going solo. For me, this is incredible news that until just before Christmas seemed like a total pipe dream. Immunotherapy is still so new, so it has been difficult to predict what the future holds with limited data on treatments, and the likely effectiveness they could continue to have in the future.

To cut a very long story short, I visited my oncologist in November last year and he informed me that it was looking likely that The National Institute for Health and Care Excellence (NICE) were planning on making some changes to how advanced melanoma is treated, specifically for patients who had been taking the drug for over two years and were currently NED. He explained that the current guidelines were set to change, which meant that if I stopped taking Pembrolizumab I could be re-challenged with the drug again if necessary in the future, therefore giving me a chance to have a break for the gruelling routine. This came as a huge shock to me, as it was the total opposite to what I had been told before. I have been living in the knowledge that I would be on the drug for the rest of my life, or until it stopped working, as I wouldn’t be able to take it again should I stop voluntarily and recurrence occur.

My oncologist told me that when the drug was first given on a trial basis eight years ago it was only given for two years, so I believe there might well be some people out there who are doing well six years post Pembrolizumab, but the data doesn’t go any future back. If so, I’d love to hear experiences of these patients. Naturally, I am sure the decision by NICE is also a cost saving measure, as it is so expensive to produce. I guess it works out cheaper for patients to re-challenge later down the line rather than be on the same drug for years on end. I am ok with this approach as long as I know I have options. When I first took Pembrolizumab in 2016 it was my only treatment option, but now there have been other drug developments in the field, meaning in the future I might not have to put all my eggs in one basket. It is petrifying, but I am hopeful there will be more positive change around the corner.

In late January, after a delay in the final decision I was told I would now be under surveillance. This was just two days before I was due back for chemo following a Christmas break. Being under surveillance makes it sounds like I am been threatened with as ASBO, or about to take an exam under timed conditions!

As my portacath is currently not in regular use it now needs to be flushed frequently. Right now I am unable to have it removed, I asked my oncologist about this and he said it should be left in for the foreseeable future and we might be able to discuss removal at some point down the line. Due to my hospital being far away from where I live this has taken longer that usual to sort out but hopefully my portacath will play ball at my scan tomorrow.

Over the last three months, the decision to stop chemotherapy has had a big impact on my mental health. This hasn’t come as a huge shock to me as I have felt as though a rug has been pulled from under my feet. All of a sudden the security that I once knew has disappeared and I am in uncharted territory. As much as I hate having treatment, I felt like I was doing my part to keep this awful illness at bay, but without it, I feel like I am going into battle without any armour. Surely I can’t just do nothing?!

I have been cautious not to mention this to many people, as the future is so unpredictable, but it’s now been 12 weeks since my last infusion and I am due my first PET CT scan tomorrow to check for any progression. This is the first time I have had a scan since early December, so I am keeping everything crossed the drugs are continuing to work after treatment has ended.

I’ve heard a couple of stories from people who have also stopped Pembrolizumab, but have done so in the knowledge they cannot be re-challenged. Apparently, it takes a few months to adjust, so unsurprisingly I haven’t felt better in myself as yet. I am waiting for some new energy levels to kick in sometime soon!

If I am honest I still can’t believe it, given all the negative things I have been told during my cancer journey it is a lot to get my head around. Despite everything, I know how lucky I am, even on days when I don’t feel good. I will never be completely rid of cancer, it will always be a huge part of my life, but for now things are ok.

I will update with my news once I’ve had my results in a few weeks.

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”

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.

Scan Results And Festive Freedom

Yesterday I received results from my last PET CT and MRI scans and I’m relieved to say that the results were good and everything continues to be stable.

After getting over the Scanxiety, I was feeling somewhat confident that the results would be stable, however the worry is never too far from my mind. Hopefully this means I can relax a little over the Christmas and New Year period.

I am fortunate enough to be having a chemo break and am not due back to see the oncology team at my hospital in Leicester for another six week. In my 2 and a half years of receiving Pembrolizumab this is a rare occurrence, and one I am especially grateful for at this time of year, fingers crossed this will be a blissful time of freedom over the festive period.

I haven’t written a blog post since The Truth About Depression three weeks ago. Part of me has been living in purgatory waiting to get my scans over and done with, and the other part has felt like I’ve not really got anything more to say. I haven’t suddenly snapped out of my downward spiral, but I am taking more steps to try and help myself.

I have now had my 41st cycle of Pembrolizumab and the fatigue seems to be hitting me more than ever. Lucky I have been working from home and resting which always helps, but powering through never feels like an option when it comes to post treatment tiredness. This is something I didn’t appreciate before I started having Pembrolizumab. A while back I wrote a post called Tired of Being Tired, which summarised my feelings on being physically and mentally exhausted. After reading it back, I feel the same as I did back then, annoyingly getting used to it doesn’t make me feel any less exhausted.

Exhaustion comes in waves, and when it hits it seems to affect my energy levels straight away. There is something about being in a hospital waiting room which makes me feel so sleepy, even with all the alarms and buzzers going off every few minutes. Having the treatment itself makes me become a total zombie, and I often struggle for a few days afterwards, making small things such as walking up the stairs or packing a bag seem like a huge struggle. I don’t trust myself to drive after chemo as my judgement certainly isn’t what it should be. I long to feel free and full of energy again, so perhaps having a treatment break over Christmas is exactly what I need.

A couple of people have asked me if I planned to celebrate my stable scans results. A few years ago I used to mark them as more of an occasion, but I honestly don’t think about them as a moment to jump up and down for joy. Nowadays I am too scared of what the future holds and I’ve been feeling particularly vulnerable over the past couple of months.

Of course I am so grateful to be in this position, even if living with cancer does take its toll, but I prefer to try and reset my mindset to one that isn’t in complete panic mode. I want to try and look forward to the next few months rather than just celebrate one moment. Hopefully I will feel less like I’m holding a poisoned chalice and perhaps as though I am holding a glass half full instead.

Fingers crossed for more good news in 2019. Until then I need to go back to sleep, rest and try to fight off a cold I think is coming my way as I’m a bit under the weather.

The Truth About Depression

The truth about depression is that there is no one size fits all approach, it affects people in different ways; young or old, male or female, the experience differs for everyone. I have been experiencing depression in some form for a number of years and I can say with 100% certainty that cancer is the major reason why I feel the way I do.

As a society we tend to define happiness by some key factors; health, work, location and relationships. The idea is that if a person has all of these plates spinning at the same time, they will be content and happy, however if one falls that person becomes unbalanced.

I feel I live in a constant state of flux, only having stability in some areas means I’m loosing focus on what is good in my life, and small changes can feel like the icing on top of the cake, like all my spinning plates are crashing down and breaking into pieces all at once. On social media I keep reading the phrase “When life gives you lemons, make lemonade”. Turns out I didn’t get any lemons, but instead got given a pile of shit, and what do I make with that…a shit sandwich?!?!

As a cancer patient I need options, and I need hope that things will get better, and living with terminal illness has meant I’ve been frequently deprived of these, halting my ability to try and move forward with my life. I feel I am frozen in time, like I’ve heard there is huge storm coming but there isn’t anywhere I can run and hide for shelter. I am not asking for the world, just some hope that my life will get easier. I don’t aspire to look like the Instagram influencers I’ve never met online, likewise I don’t want to be paid a lot of money to travel from country to country documenting my life. I only want a life to live in the first place. I just want to be happier, I don’t think that is asking a lot.

Depression isn’t about feeling down for a few hours when I wake up in the morning, It’s the constant cycle of highs and lows and it becomes more obvious when I start having more bad days than good ones. A lot of changes recently have made me feel I am going through a particularly dark stage and last week I burst into tears because the warning light came on in my car and I only had an MOT and service a couple of months ago. Out of the blue something small acts as a trigger and I fall apart over and over again, but each time I put myself back together I am missing another piece. Of course, it’s not really about the car, however it becomes another issue that has to be sorted out, another reason why I feel I am failing. Depression is one extreme to another, I’m either high with happiness or feel like I am falling down and no one will be able to catch me. I believe the voice in my head telling me negative thoughts and leaving me feeling hopeless for days at a time.

Some days are better – for a split second I feel that maybe, just maybe I will start to feel human again one day. Depression is serious and ugly and affects so many people from all backgrounds and walks of life, it doesn’t just disappear when you’ve had enough, but manifests over time. I am not going to wake up tomorrow morning and decide not to feel hopeless because that isn’t how it works.

I’ve read books where people have said they have a new appreciation for life since they were diagnosed with a serious illness, that the small things in life become more significant. I don’t jump out of bed every day grateful to be alive singing happy tunes at the top of my lungs, and no one else does it either! I am constantly told I’ve been lucky so far, so feel I should be eternally grateful. It goes without saying that of course I know it could be much worse, but I don’t see others celebrating in some special way just for being alive. I’d be fine with my lifestyle and accept the all things I can’t have if I felt I had some element of control, and could potentially live a long and healthy life. It’s not easy to believe everything will work itself out when I’ve been fighting fires for the last eight years.

Currently It’s not one particular thing that makes me emotional, it’s the whole process of being a terminally ill patient. It feels like everything and nothing at the same time. I am an outsider in a world full of insiders and It’s no coincidence that cancer has affected the way my life has panned out thus far, and I’ve failed because of it and I’m constantly trying to look for answers in a world where they don’t exist. It has changed every single aspect of my life and each day there are multiple reminders thrust in my face which only serve to highlight exactly why I am depressed. It could be seeing my scars in the mirror, using my Freedom Pass or Please Offer Me A Seat badge to travel, my constant blood tests, GP visits, the struggle it takes to get myself out of bed and go to work, and the antidepressants I take when I wake up each day. I have been having what I like to call ‘mini-breakdowns’ over the last 4 weeks so I feel an adjustment of my medication is needed.

I am now at an age where 85% of my peers are getting married, having children and buying houses. Cancer aside, when I was in my twenties I felt I had a lot of close friends and allies doing similar things to me, but now I am the odd one out. It doesn’t feel so bad being in a group, but nowadays It can feel isolating. It’s so difficult not to compare myself to other people when I’m surrounded by what I am missing out on every single day, and I feel like I am a failure in comparison.

I feel like the chance at a future has been taken away from me, which is a major issue when in comes to relationships. How do I find ‘The One’ when I feel there won’t ever be anyone for me? Nobody could take on the burden of my illness, I don’t want someone to care for me, just about me, I want someone that can help pick me up when I am down. Having not settled down with someone in my early 20s I can’t give a man the future they deserve because I believe I wouldn’t be enough, and quite frankly feel I don’t deserve it. In reality my life is far from the disney fairytales everyone seems to hope for. The thought will always in the back of my mind that If I take a turn for the worst, would someone want to be there with me side by side until the bitter end? Not exactly the opening line of a dating profile. What I do know is how precious life is. It is fragile and uncertain, I know what it’s like to be told that cancer is in multiple organs and what it’s like to spend hours attached to a chemotherapy drug pump fighting for my life. I can’t bring someone in to that life.

I’m not angry at friends for being settled and having children, but am I sad for myself I can’t do that? yes 100%. I am only human after all, and although I don’t blame anyone for my sorry excuse at adulting it is extremely hard and unsettling right now. However, I don’t think of other peoples problems as insignificant to mine; I know people have awful times too which I could never relate to, and they aren’t less valid because they don’t have stage 4 cancer.

Being upset doesn’t mean I don’t want to see people and their children. However I have to acknowledge it is a challenge because my options are non-existent in comparison. I feel like an outcast when I compare myself to others, and I often need to do some self preservation, but I know it’s not other people’s fault. It would be easier to try and blame someone, however my life a series of unique and entirely unfair circumstances that I cannot control. Right now I am emotionally, mentally and physically exhausted and feel I can only pick myself back up again so many times before I collapse into a heap on the floor.

Cancer has a lot to answer for and sometimes I feel worthless, as though I’m running around in circles trying to catch up with my friends; but we are not even in the same race! My path is going on a different route to that of my peers who all seem like they are running alongside each other. For years I’ve been held back because of my diagnosis, so I guess It no coincidence that I don’t fit in. I only want a fraction of what other people have, just some stability and options in life. I don’t feel like I am asking for much. It is unsettling and frightening standing in my shoes without options, like being given a series of multiple choice quiz questions with no answers to pick from. 

Seeing Scars

The clocks have gone back and right now I’m feeling grateful for winter coming our way. I don’t want it to be freezing cold all the time, but like many people I’ve started feeling the need to hibernate as the days get shorter and it gets dark so early. The colder days give me a good excuse to say no to things without being questioned. After work I want to get home as quickly as possible and hide under my duvet and escape from the world.

The winter months mean its easier to cover my many scars from surgery and cancer treatments with high necks and warm layers, which I am very grateful for. My scars tell a story, a huge narrative within my life, often they are scars that no one else sees or notices, but I know they exist and they get me down a lot. I have multiple scars all over my body, including a large one on my neck form my original melanoma site. Often, when I tie my hair up I worry other people will notice and stare at it, or ask questions about how I got it. My scars make a feel vulnerable and despite being 13 years old, the one on my neck is still prominent, and its the last thing I would want to talk about.

As human beings we are a curious bunch (aka nosy) and over the years there have been a few incidents where I have been asked about the scar of my neck by total strangers. Needless to say I’ve not been impressed by this! Another memory that sticks in my mind when I saw someone from school on a night out when I was back from university for the summer, they saw me and said; ‘what the f*** happened to your face?’ I’m not quite sure I knew how to react, but one of my friends quickly jumped in and told the person in question where to go! Firstly, It’s not my face, its my neck! Secondly, what a way to make someone feel terrible about themselves and shatter the little confidence they had left! Years have passed and I’ve not seen that person since, but the memory is still vivid. Clearly they weren’t taught tact and manners growing up – who does that?!

My hatred of my scars will always be there, during my holiday to Thailand in the summer I noticed some spots of vitiligo getting progressively worse; this is one of the side effects of taking Pembrolizumab, so I know I shouldn’t let it get me down, but it becomes another reason to dislike what I see, and it’s something else I cannot control, like all the other ugly marks on my body. The majority of my vitiligo is on my torso and my thighs and legs so it isn’t easily spotted by others, but I know its there and it certainly has an impact on my confidence and what I choose to wear.

I try to overlook my scars when I look into the mirror, but they’re not easily missed, I am able conceal some, but others are too noticeable or in too much of an awkward place to hide. In some ways I should be proud because they tell a story of everything I’ve been through to stay alive, they should be constant reminders of how strong I am, but the person I now see in the mirror is totally different version of me. In reality I hate my scars and the story they tell.

I’ve been thinking about getting a tattoo for some time, possibly over my portacath site. I got one inserted two years ago after numerous issues with my veins meant it was getting more and more challenging for nurses to successfully cannulate me for chemotherapy.  Despite being discreet and easier to manage than the other options, my portacatch protrudes slightly from my chest which I find ugly. When I have dark days I wish I could rip it out of my chest, like the scars and vitiligo it is another physical reminder of my diagnosis. I am not sure what tattoo I would have, it’s just be an excuse to cover up something I hate. Maybe I’ll become addicted and get them all over my body! I had my eyebrow tattoos done around two and a half years ago and it was one of the best decisions I made at the time.

All the scars remind me there is an unwell person staring back at me and I constantly have to dig deep for the strength to keep going. I don’t want all the scars to define me, that’s not who I am, but sometimes its hard to get past. It’s more than just the physical effects, but it’s the psychological ones too. Cancer has changed every single aspect of my life and the scars are a permanent reminder of my lack of control.

The various systemic treatments I’ve received over the past 4 years have shattered my confidence, made me loose my hair and eyebrows, made my skin itch and become sensitive, made me sick to my stomach, hardened my veins and kept me awake with fear and worry for hours and hours on end. They have fundamentally changed me as a person. My scars will always be a reminder of just that. I need to learn to embrace them, right now all I feel is sadness each time I catch my reflection in the mirror. All I see are my scars.