The Day My World Turned Upside Down

Today marks nine years to the day I was told the small subcutaneous lump I’d had removed form my right forearm a few weeks before was cancerous. It was the day my world turned upside down.

A few months before I found a the offending lump and was Immediately concerned, as it became painful and had grown over fairly quickly. When i visited my Oncologist in Oxford we decided that even though didn’t appear to be any real cause for concern, I would be able to have it removed if I wanted. I thought this was best as it was uncomfortable and unsightly.

Six months went by from visiting the team in Oxford to having the lump removed at Northampton General Hospital in September 2010. By this point I had graduated from University and moved to Windsor to start my first job as a graduate.  After I had the lump removed, I was told by the surgeon’s team that I would have to come back a week later. From my previous experience of having the cancerous mole removed from my neck five years before alarm bells began to ring. I gave myself a little pep talk and convinced myself it would simply be because i needed to have the stitches taken out. Looking back, I’m sure the surgeon who removed the lump could tell there was something wrong.

I’d had so many follow ups in clinic during the five years before that had come to nothing so I thought I knew what I was doing. The clinic ran late and when I finally got called in for the appointment I was asked to change into a hospital gown. I was on my own and the surgeon came in followed by a lady who I later discovered was a MacMillan) and I knew something was really wrong.

My memory of this meeting is a somewhat hazy. The surgeon examined my neck and arms for any other lumps. Looking back he was probably looking for any swollen lymph nodes. He asked if I had brought anyone with me to the hospital as I was on my own. I was told the lump was melanoma and it had spread from my original mole five years earlier. I was then swiftly booked in to an appointment with an Oncologist specialising in melanoma at Northampton General Hospital the next day. I’ve now been seeing the same Oncologist for nine years. That’s 3287 days!

Subsequent MRI and CT scans showed a single lung tumour and a single brain tumour. In the month that followed I went from being a seemingly well 23 year old graduate to a stage 4 cancer patient, registered disabled and unable to go to work, and facing the very real prospect of an imminent departure from the world. Talk about life throwing me a curveball

I am certainly not a statistic and me being alive and well and writing this post it as close to a miracle I will ever get. For me, September is a month full of various triggers and cancer related anniversaries, but October is just the same, closely followed by Christmas and Birthdays as well as Summer time, so in effect the whole year.

I have spent the past 14 years of my life as a cancer patient and next year marks a decade as a stage 4 cancer patient. Its a life sentence and some days I find the whole situation beyond comprehension. Being focussed on the now is much easier said that done with cancer demons floating above, ready to pounce at any time.

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. It’s looked very bad for me numerous times and I know my family felt it too. I’ve been on sick leave from work and had to come to terms with the fact I might never go back.

Three and a half 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 I was unrecognisable from my ‘old’ self. Now I look like the 2010 version of me, with a full head of hair and most of my cancer scars covered up. On the outside I look the same, but I am a whole new version of myself compared to nine years ago. My twenties were really exhausting and stressful, and I feel like I missed out of so much, relationships, work opportunities and generally having fun. So far the first 2 years of my 30s have gone better than the majority of the last decade. I am treatment free and my oncology appointments are currently kept to a minimum. I hope cancer continues to lay low and not dominate the next decade of my life. My world has been turned upside down but I’m living on the flip side and that seems ok for now. Keeping everything crossed for my scans in two weeks.

September Sadness

This month has gone very quickly, having been away on an exciting work trip to Japan I am now back in the real world. My three year blogging anniversary took place whilst I was away. The past year has been the most significant as I stopped taking Immunotherapy drug Pembrolizumab, having had my last infusion in December 2018 and my last major surgery during the summer of 2016.

September is also very significant as it marks exactly 14 years since I was initially diagnosed with stage 1 melanoma aged 18. I have now been living as a stage 4 patient for almost 9 years, with the end of next month marking the date I was told my diagnosis was Stage 4 cancer and I had to have two major operations to remove a lung tumour and brain tumour which had been growing inside me during my final year at University.

September is a month full of various triggers and cancer related anniversaries, when I was diagnosed in 2010 I thought I may not make it to 24 or 25, and now I’m 32! I woke up this morning, or in the middle of the night with it being 4am, still jet lagged from my long flight home. My work trip and travelling bubble has well and truly burst. For me, September is full of sadness and so many bad memories which have changed the course of my life forever. In this case i’m not sure if the memories fade or that time heals old wounds, but it really doesn’t feel like it today! My wounds are sore and as raw as ever right now.

I try my best not to think about the more distant future, but no matter how much time passes I still feel like I am looking down the barrel of a loaded gun ever day, being away from London and my ‘normal’ life allows me to switch off a little, and there is a sense hope. Travelling home I started to think about my next long haul trip to America in 2020, and I am trying not to panic that something dreadful will happen between now and then which means I won’t actually go.

I am due a PET CT scan within the next month, and am awaiting a date for my MRI scan too, and will get the results at the start of November. I am starting to worry now that I know the date, particularly with the recent news about the hot spots of my last scan. Today I am full of misery and fear about what could be.

I’ve only been home five minutes but my mind has started experiencing certain triggers that are very distressing. This morning I discovered some hair in the plug hole and I immediately had a flashback from when my hair started falling out about five years ago. September is a month when I think about my diagnosis and the impact it has on my life even more. I really hope October will be easier!

Survivor Guilt

There’s no doubt that living with cancer for the best part of 14 years means I suffer from survivor guilt at times. I’ve had my fair share of ups and downs since I became a stage 4 patient in 2010, but right now I am treatment free and somehow I feel like I’m a fraud. I know I am one of the lucky ones right now but it doesn’t feel like it at times. It’s hard not to feel guilty about how I feel when people around me are dying.

In recent weeks, a number of people I’ve been following on social media with cancer have died. How is it fair that some people die within a year or two or diagnosis, but others like me live for almost a decade? No one deserves to suffer at the hands of this awful disease.

Over the years I’ve also followed stories of fellow stage 4 melanoma patients who have since sadly passed away. Some blogs I’ve found very useful, Dear Melanoma and Wrestling Melanoma provided me with a lot of information and comfort when I first began writing my own blog, despite not knowing them in real life. Following stories like theirs online has been both a blessing and a curse. I feel sad when I hear news about others, but selfishly I am also very frightened.

These stories have touched so many lives, both with or without cancer and have certainly inspired me with their strength, resilience and overall positivity. The truth is, as hard as it can be, we could all take a lot from people sharing their experiences.

It’s hard to comprehend that people at my stage in life are being taken from this world in such a cruel way. Even if age wasn’t a factor its still so unfair. I will always have the fear within me that I’ll be next one.

I initially felt guilt because I was convinced I could have done something to prevent my cancer; guilt for all the stress its caused my family over the years; guilt for surviving when fellow cancer patients have died, especially when they have had a similar diagnosis to me. Why do some drugs work well for one person but not another? I’ve also felt really guilty for taking time off work, particularly when I’ve been on long term sick leave. I hated not being reliable!

Overall I just feel guilt for being unwell in the first place. Now I am not on any immunotherapy drugs I don’t look unwell, and I worry people must think I was over exaggerating about my experiences. People don’t expect me to look ill so much anymore, but I shouldn’t have to feel bad about looking and feeling well. Not everyone knows what its like behind closed doors.

I feel guilty for being well right now; and I’ve felt guilty when I’ve been worse off and been a burden. I just can’t win! I thought it would get easier being off treatment, however I now have a whole other set of feelings to navigate. It’s tricky to shake off the labels I’ve been given as a cancer patient, especially as I am currently walking the line between sufferer and survivor. The majority of my adult life has been so uncertain until now, so its a a huge adjustment.

Summer Scan Results

A month ago I had my second PET CT scan since adopting a surveillance approach to my treatment for stage 4 melanoma. Like last time, I had to wait almost a month to see my consultant for the results. Yesterday I saw my team in Leicester an am happy to report that for the most part all has remained stable, which is cause for a celebration.

Annoyingly, I have been told there are a couple of very small ‘hot spots’ which were present on my most recent PET CT scan, one in my arm and another at the back of my throat / nose.

My Oncologist suggested there was no cause for any immediate concern, which is great, however I’m a bit thrown by these small spots appearing on my scan! I feel physically well and expected the results to continue to show no evidence of disease (NED), so the fact this isn’t quite crystal clear means I’ve been caught off guard. I’ve been riding the NED wave for some time now, so I’m disappointed.

I was offered the option to be referred to an ENT specialist to investigate this further, but my Oncologist felt this unnecessarily so I decided to trust his judgment. I’m also still enjoying the freedom of having very few medical appointments and I’m not keen to start adding to the load again unless it’s 100% necessary.

A PET CT scan doesn’t diagnose cancer itself, so It is very likely that the hot spots might have been caused by other factors such as a blood test / injection or even a cold.

The current plan is to carry on without treatment and take a look at my next scan in a couple months and act then if there is any reason to. It’s feasible that these spots will have disappeared by then, and no further action will be needed, but it’s certainly freaked me out a bit. I guess this is the nature of being on ‘watch and wait’.

In other good news, I’ve been told that all being well we can discuss the possibility of getting my portacath removed once I’ve been off treatment for a year.

For the most part my glass remains more than half full, something I’ve been trying to tell myself over the last year or so. There are plenty of adventures planned before I have both an MRI and PET CT scan in October, so hopefully my mind will be occupied.

The Beauty Of Friendship

I’ve always known how important my friends are, but the last few weeks have highlighted just how lucky I am to have a solid cohort of friends behind me.

I am lucky to have spent last weekend with some of my oldest friends, and no matter how much times passes our friendships remain intact. We may not see each other often, but we are still there for each other in times of need (thank goodness for mobile phones and what’s app).

The vast majority of my friends are well and truly settle down and some have children too. I am very aware I’m a fair few stages behind when it comes to these matters and I always count my cancer diagnosis as part of the reason for this. It’s shaped who I am today, much like my friends own experiences, but ultimately we still have a close bond.

The great thing about our friendship is that we love and respect each other, even if we don’t always have the same opinions. We don’t all have the same interests either; I love theatre, eating out, and travelling, but I am not a fan of Love Island, and it doesn’t matter. As teenagers we had similar interests, such as being old enough to go out in town and go drinking for the first time, it was fun at the time but as adults we embrace our differences. I prefer to stay in and watch Netflix than go out to a bar, and that’s ok too. We’ve learnt to embrace our differences, and it’s probably one of the reasons we have stayed friends, each to their own after all! We are all individuals however together we work. I am lucky to have many friends from my school days, some that have stayed in the midlands and other who live close by in London. I was also lucky to find some wonderful friends and University too, as well as in the various jobs I’ve done since graduating.

In the last month I have caught up with two friends who have visited the UK from Australia, one from Japan and two from America. These are not people who are in my life of a daily basis, and I met them and different times during my life, but despite the distance they are frequently in my thoughts. We communicate as often as we can, sending long updates about life via what’s app it that occasional Skype call.

I often wonder where in the world I would be be without these people? Nothing compares friends getting together for a good catch up full of laughter, and last weekend was no exception.

True friends are those you can be 100% honest with, and they still like you anyway despite what they know. These friends are people you can sit in silence with for hours and it not be awkward. These are the ones who will be with you during the best and worst times and lift you up when you are in a bad place. I’ve had my fair share of rough rides and I am eternally grateful to those people.

Some friends are relatively new ones, but they are just as important to me.  During an average week I spend more of my time and work and socialising with friends than seeing family which makes friendship (and of course family) so key to my overall happiness. I feel fortunate that I have those I can confide in, act like counsellors, and overall support systems. I am always trying my best to be a good friend in return.

Whilst I await my next PET CT scan results I am forever grateful to my wonderful friends for keeping me sane.

What A Difference A Day Makes

I had a very busy weekend, with a much anticipated theatre trip to see both parts of Harry Potter and The Cursed Child followed by a day trip to West Sussex on Sunday to walk from Amberley to Arundel with some friends.

I’ve been pretty busy over the past few weeks, including during the weekends, and felt like it all came to a head yesterday after I had my PET CT scan in Leicester. My body felt exhausted; I guess It was a mixture of aching from the walk, lack of sleep, lack of food as I was only allowed water prior to the scan, and a recently shoulder injury. Luckily, desipte not being able to be cannulated via my portacath the scan went ahead as planned.

I got worked up and anxious when I was told a nurse wasn’t available to cannulate me via my portacath. Previously I had been sent away from a PET CT scan after two unsuccessful attempts to put a cannula in my arm and had to come back another day for the scan to take place. At the time it was very distressing as I travelled to Leicester on my own for the scan, thinking I knew what I was letting myself in for. I’ve learnt that with cancer I never know what I am letting myself in for!

Over the past couple of years my portacath has been my saviour and I’ve not been to a scan on my own since. Fortunately, one of the radiographers managed to put a cannula in my arm on the first attempt so the radioactive tracer could be injected into my bloodstream. Considering how many times my veins have failed me I was pretty impressed. Now I have to arrange another visit to the chemotherapy suite for my portacath to be flushed (never a dull day!)

After the initial hiccup my scan went smoothly, I did my usual hour long wait once I’d had the tracer injected and then spent 45 minutes being scanned form head to toe. I am due to see my consultant for the results in the next month. Each scan comes with its own level of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago. As the months pass and I learn to live on my new ‘watch and wait’ routine I can’t help but feel like my world could fall apart again at any moment.

I felt really unwell after my scan on Monday and had to go back to bed when I returned to my mums house. I slept solidly for almost three hours, and it just goes to show what a difference a day makes.

Twenty-four hours earlier I was waking through fields with my friends, feeling energised without much worry, and within such a short space of time I felt like an invalid. When I tried to get out of my dads car when I got back I felt like I’d suddenly aged 40 years – walking seemed so difficult and I felt sick and exhausted. All I’d done is lay there in the scanner but it took so much out of me! It felt as though I’d just come home from treatment and my body was drained of energy.

I don’t often share the moments when I physically struggle online, because I want to focus on the positives, but also because ‘dear diary, I was exhausted so spent the day in bed’ doesn’t have the same ring to it. It hit me hard, but I need to keep my head up and keep going.

That ever changing 24 hour period was a harsh reminder of how fragile life with cancer can be. I am slowly beginning to feel better, after some research, Dr Google suggests I might have a trapped nerve which is causing shoulder and neck pain, so have booked in for some more acupuncture in the hope that the symptoms will be alleviated. I know I should really google me symptoms either!

A cynical voice in the back of my mind is linking the pain to disease progression, but I don’t want that negative energy to impact me. I haven’t had any other worrying symptoms over the last few months. Another part of me thinks my oncology team would ensure I get the results much quicker if there were any red flags from their end.

The next few weeks are going to be testing, and I really hope Scanxiety doesn’t kick in. It’ll be easier once I know where I stand so I can breath again.

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 in that department when it comes to riding a bike, 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!

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. 

The Power Of The Cancer Community

Over the past couple of weeks there has been a lot on social media about a recent campaign by Marks and Spencer and Fashion Targets Breast Cancer to help raise awareness and funds for breast cancer research. It certainly raised a few eyebrows and the general feeling was it massively missed the mark. Understandably, there have been many people speaking out about this on social media.

Marks and Spencer are donating 30% of the purchase price of tote bags and t-shirts to help raise vital funds for Breast cancer research. That’s no small change, however It appears that on this occasion they seem to have painted a unrealistic image of cancer through the media, including the use of celebrities in their campaign, and have been criticised for completely missing the opportunity to use real women living with cancer in the campaign, of which there are so many spreading such valuable messages on Instagram.

I do agree with this in part, however we cannot tell if someone has been affected by cancer just by the way they look, I am a stage 4 patient who was having immunotherapy every 3 weeks until very recently, but I look well on the outside. The same goes for the celebrities, perhaps they have friends or family members who have been unfortunate enough to be diagnosed with cancer. Part of me believes that If seeing one of the Marks and Spencer adverts, or even an instagram post from a celebrity about the campaign means women pay attention to their bodies and it gets people talking, then they have done something positive.

I agree the slogans ‘two is stronger than one’ and ‘good things come in twos’ are insensitive and could have been thought out better. It’s clear the campaign has caused offence and upset, which was not the intention at all. It would seem this does not translate well when you’ve had a mastectomy, whatever the intention, and I don’t blame people for being upset.

Marks and Spencer are raising money for a hugely important and valuable cause and sadly, I feel the message of this campaign has been lost with all the commotion. The campaign invites people to dress in solidarity, and champions strong friendship. They missed the mark, but I believe this is a good catalyst for a better conversation about these sort of campaigns, and fingers crossed it is something that is considered better in the future.

After the initial backlash, Marks and Spencer then posted patient stories on social media and on the Fashion Targets Breast Cancer website. I agree that they should have led with these stories in the first place as it feels more powerful.

The campaign seems to have fulled some fire about breast cancer getting a lot of coverage in the media compared with other types of cancer. I am not sure why this has all become a game of ‘which cancer is worse’. All cancer is horrific, it is awful no matter what stage you are diagnosed. Yes I’d like other cancers to get awareness, I know charities like Melanoma UK don’t get enough attention, and I’d certainly like to see more information out there about other cancers too, but it doesn’t mean the funds and research for breast cancer charities are any less important.

This was a prime example of the strength and impact social media can have, and the campaign has led to the development of True Cancer Bodies a patient led campaign that put all cancers at the heart of its message. Seriously well done to all those involved! Of the 20 people in the campaign many different types of cancer were represented,  including breast, bowel, liver, lung, colon cancer and Hodgkin’s lymphoma. The aim is to enlighten the public as to what cancer really looks like, and I think they have done a great job.

I’ve always said that having cancer is like being in a members only club you don’t want to be part of, but this has shown how the cancer community has come together to try to make change for the better, so long may it continue.