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.

Post-traumatic Stress Disorder

A couple of weeks ago I had my second PET CT scan since adopting a ‘surveillance’ approach to my stage 4 cancer in January this year. I am now playing the long waiting game and am not due to see my consultant for another two weeks.

I have so many reservations about this, but I know deep down (or at least I think I do!) that if there were any hot spots coming up on my PET CT scan I would be called in earlier to see my oncologist. I’m now an outpatient, so currently not seeing my oncologist and his team nearly half as much as I have done in previous years. It feels strange to have let go of the stability of having the hospital on speed dial and trust that the people who have been keeping me alive for the past decade are still doing the right thing.

I almost feel abandoned now that my appointments are few and far between. It feels like trying to ride a bike without stabilisers for the first time without any instructions. The anxiety and fear around this will never leave me, but hope in time it’s easier to cope with. It’s become apparent to me that I am suffering from some PTSD, aka post-traumatic stress disorder since I found out I had stage 4 cancer.

I haven’t officially been diagnosed, but I think that most of people who have a cancer diagnosis must suffer from PTSD at some point; life changing events such as surgery and chemotherapy are bound to have an effect. Some of the side effects induced by particular treatments might lessen in time and become less severe, but even the diagnosis itself can be earth-shattering and seems like the perfect place for PTSD fester. I know I have suffered with this for a while, even prior to my Immunotherapy finishing. Thanks cancer for giving me something else to deal with!

I am still in disbelief that I am not on treatment right now. I’ve had trouble coming to terms with this, even though I hoped and prayed for it for years it doesn’t feel like I expected it to. It would seem that cancer is the gift that keeps on giving!

I’ve been open on honest on this blog about my struggles with anxiety and depression over the years, and have only come to recognise this fully more recently. I kept kidding myself that I should be grateful my cancer is treatable despite being stage 4. Living with cancer, palliative or not is one long nightmare!

Over the years I’ve noticed the increasing number of PTSD triggers I have that I can’t seem to control. I’m never going to forget I have melanoma; but some sights, smells and sounds remind me of the multiple hospital trips and specific events such as major operations. My mind is constantly taking me back to moments that will be etched on my memory forever more. Certain triggers cause me to suffer vivid flashbacks that are often deeply distressing and sad. Not a day goes by that I don’t think about my diagnosis and the impact it has on my life.

There are so many misconceptions when it comes to PTSD. People reading this might suggest that I should move on and try to get over what has happened. But I’ve suffering from anxiety and depression around my illness for so long and having PTSD isn’t a choice. I can’t ‘just get over it’ when it impacts my life so much.

Back in 2010 when I got told I had brain and lung tumours I suffered emotionally in private, I wasn’t ‘out’ on social media like I am today. I deleted Facebook for almost a year and didn’t use any other social media platforms back then. Over time I’ve tried to stop feeling guilty about the way I feel as I know have been through a lot, it’s pointless and detrimental to me to pretend I haven’t and that its not been a struggle.

Talking about my situation helps immensity, but in the past I have often kept things quite from family and friends because in some ways only other people who have had cancer can fully understand. I don’t want to make others sad or reminded that they could be next, so for a long time I suffered in silence and put on a front.

Sadly a life with cancer doesn’t end when treatment ends. I can’t wait to gt my scan results out of the way and hopefully my PTSD symptoms will die down for a while and I’ll have some space to breathe.

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.

The New CRUK Obesity Campaign

Over the past couple of weeks a few people have asked me my thoughts on the latest ad campaign by Cancer Research UK, highlight obesity as a leading cause of cancer.

A couple of weeks ago Cancer Research UK released new figures showing that excess weight is now fuelling over 4,000 more cases of bowel, kidney, ovarian and liver cancer than those caused by smoking. Its a shocking statistic and I think the national campaign is pretty hard-hitting.

Part of the new campaign is a billboard poster advert showing cigarette packets in which brand names had been replaced by the word obesity. At first glance this looks like an advert for Malboro Lights or Silk Cut but look again and you will see something very different. A direct and harsh message designed to grab the viewers attention.

Cancer Research UK say that by implementing this campaign, they are calling for a change in policy, asking the government to lead the way in providing an environment which makes it easier to maintain a healthy balanced weight. The ambition is for the government to halve childhood obesity rates by 2030, and also to introduce a 9pm watershed for junk food ads on TV and online. I agree with this wholeheartedly, however it has left a bad taste in peoples mouths, with some suggestions the ads are ‘fat-shaming’.

I think the campaign is clear and clever, but I hope it doesn’t lead to people hiding away, feeling ashamed of their weight, and not getting help when it may be needed. There needs to be some guidance as to where people can get help if they need it. We are in a era of body positivity so people shouldn’t be made to feel singled out because of how they look. Male or female, obese or underweight, tall or short, we are all at risk. Over the years I’ve toyed with negative thoughts that somehow its my own fault I have cancer, although I’ve been assured multiple times there is nothing I could’ve done to prevent it, it isn’t nice to play the blame game. No body who gets cancer should ever feel it is their own fault.

Cancer is a complex disease and its not often linked to one particular element, and not only those who smoke or are obese get cancer. I sit here writing this as someone who seemed completely healthy when I was a initially diagnosed as a teenager; I hardly ever drank alcohol (in later years I was always the one who drove on nights our), I had a healthy lifestyle of a busy young adult and I certainly wasn’t over weight. I also have never been a sun worshipper, but I still got melanoma. I know people who have lung cancer who have never smoked in their lives, which just goes to show how there is still so much to learn about cancer. There are so many different forms of cancer that to highlight obesity as a cause for all is completely wrong.

Having said this, I like a message which grabs peoples attention, which makes them sit up and think; and I think the obesity campaign does this well. I’d love for a big campaign like this to support Melanoma UK in the ban on sunbeds, or to highlight just how damaging getting sunburnt can be for our health. It would be great to see the UK follow the lead of Australia and ban the use of commercial sunbeds. Although exposure to UV radiation from the sun or sunbeds are the main risk factors for developing melanoma, they are not the only ones. There are many things that may lead to the development of melanoma, as there are with other cancers.

Of Mountains And Minds

I was recently fortunate enough to to be invite by the lovely Caroline McKay to be a guest on her podcast Of Mountains and Minds.

Caroline began the podcast to help shift our culture to talking more about struggles and stigmas. She has interviewed a number of people who have been through/are going through major challenges in life. Conversations on the podcast have included depression, addiction and grief as well endurance challenges like Everest. You can listen to Caroline’s podcast on Soundcloud or ITunes.

The great thing about this podcast is that It’s not intended to send a message that after navigating major challenges everything is healed and happy-ever-after, which I highlighted In my last post. The idea is to highlight the difficult, messy and inconvenient realities of trying to move forward after something so life changing.

Caroline asked me to to talk to me about the everyday realities of my cancer diagnosis and carrying on with life both during and after treatment, as well as my experience with depression, all of which has been well documented on my blog. I’ve never been a guest on a podcast before, so I can now tick that off my list alongside tv appearances and magazine interviews which would never have happened without melanoma.

I will post again when the podcast goes live in a few weeks.

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.