Radiation, Results & Scan Reductions

Three weeks ago I had my third PET CT and my first MRI scan since adopting a ‘surveillance’ approach to my cancer treatment. I have now been immunotherapy free since December last year, almost twelve months ago.

After a hugely stressful day at Leicester Royal Infirmary yesterday, I am relieved to report that I don’t have another appointment for a scan until April next year, six whole months away. I’m not sure I’ve had a six month break between scans for the past nine years, and calculated that I must’ve have around 50 scans in total since my stage 4 diagnosis.

My day started off stress free, arriving at the hospital four hours before my appointment in order to have my portacath flushed at the Chemotherapy suite. I then began the long wait for my scan results during the afternoon clinic. Around 30 minutes after my my appointment time I was called in to see my Oncologist who explained that the MRI on my head was clear, however my PET CT scan showed a ‘hot spot’ at the top of my spinal column.

Having been diagnosed with a brain tumour nine years ago one of my huge fears is being diagnosed for a second time. The surgery and recovery were brutal and I get emotional just thinking about it. I’ve worked hard to try and block out parts of my life around that time, but it all cane flooding back to me.

Within an instant I felt very distressed, as there were two areas where the scan contrast showed a small area of uptake at my previous follow up appointment. I’d seen the ‘hotspot’ on the scan on the computer screen as I walked into the consultation, and this felt like a nightmare coming true. My mind was racing, worrying that I had another brain tumour, something I’ve been living in fear of for years, and that I didn’t know how I would ever be able to cope with another set back of such a huge magnitude. I have made plans for next year, and have a life to live outside of the cancer bubble. Cancer affects my mental health every day and I felt like the walls I had worked so hard to build up started to crash down around me.

My Oncologist explained that he needed a second opinion, as the MRI result was the more robust and reliable of the two, but something wasn’t quite right. It didn’t stop my mind going into overdrive during the next hour when my parents and I went back to the hospital cafe to try and kill time. Fortunately I didn’t have to wait long for a follow up call, and went back to see my Oncologist a little later. Having discussed with various colleagues in radiography, the conclusion was that I must’ve moved my head slightly during the PET CT scan which then gave a false reading. Who’d have thought moving my head so slightly could cause such a drama!

My scan was a PET CT, PET scan are often combined with CT scans to produce even more detailed images, however it’s likely that I moved slightly meaning that when the two types of images are put together it gave a false reading that I had a ‘hotspot’ at the top of my spine. I’ve had dozens of PET CT scans and never experienced this before, however 45 minutes is a long time to stay still whilst the scanner works it’s magic.

Once the panic had passed and the cause of the contrast uptake determined, we began a conversation around future plans for my follow ups. I find it mentally challenging to keep attending regular scans as each once presents a lot of worry and anxiety in the lead up. With results taking up to a month, I spend about six weeks in every three month period worry about having the scans and then worry about the results once it’s taken place. I’m just going around in circles and the results will never been in my control, no matter how much I wish I could change that. It’s no exaggeration to say after nine years I’m at the end of the road with it and can’t take much more.

I’ve had multiple scans over the years, I’ve lost count of exactly how many. During me appointment my Doctor and I also discussed the frequency of scans and exposure to radiation; as I am now expected to live longer than when I was diagnosed in 2010, and have surpassed expectations, so much exposure could negatively impact my health in the future. We now need to be mindful of how much radiation I’ve been exposing myself to as it may increase my risk of other illnesses, including different types of cancer in the future, oh the irony!

It was decided that as I am not currently showing disease I’ll wait six month for my next scan and follow up results, which hopefully will allow me some breathing space. I want to try and figure out what’s important to my outside of the cancer world, raising money and awareness for charities will always be important to be, but I feel I’ve lost my way and I’m not really sure who I am anymore. I’d like to attempt reignite some of my interests and live the life a 32 year old in London should be living, and not living in constant fear.

It’s so hard living In a world where I’ve been potentially offered a ‘cure’ or long term disease stability when all I can do is worry about my cancer returning. I struggle to shake off the cancer label, but also realise that it sometimes feels like my USP, which is very strange. I got asked recently in causal conversation what was important to me, but didn’t feel like I wanted to expose my diagnosis by telling people that raising awareness and funds for charities was close to my heart. It’s great, but also a bit of an awkward conversation, as I’d feel I would need to give context. I didn’t go on the This Morning sofa with Holly and Phil and speak about my life in YOU magazine for the sheer fun of it.

I am going through a phase of feeling very lost, like I don’t belong or have a place in the world where I feel I fit in. I have some many ‘lost’ days where I feel like I can’t relate to anyone or anything around me. With cancer everything feels like such a battle, from medical appointments to just getting up and getting out of the house every day. I really hope that reducing the frequency of my scans, and only having two over the next year will have a positive impact.

The Wait for Autumn Scan Results

I have been pretty quiet on my blog lately, life has become very hectic, the month has flown by, and I simply haven’t had time to check in on here. I Just returned from a wonderful day trip to Manchester, and my precious weekends have also been spent travelling to see friends around the country. Whilst I’ve loved every moment, I think the fatigue has really caught up with me now and I am glad to have made a few less plans over weekends in November and December.

I had a PET CT and MRI scan last week and I am anxiously awaiting the results in early November. Last time I found it difficult to be pleased with my results given I was made aware of two small ‘hot spots’ which appeared on my scan. My Oncologist, who has treated me for over nine years suggested there was no cause for any immediate concern, however I was really thrown by these small spots appearing on my scan! At the time I had been physically well and expected the results to continue to show no evidence of disease (NED), so when I found out I was caught off guard.

A mixture of a cold and burn out has descended and I don’t feel so well in myself as I did prior to my summer scan results, however this may also be because I’ve not been going to the gym much since I returned from Japan in September, and I know I’ve not been going to sleep as early as I should. I probably need to go back to basics, go to bed earlier and do my best to look after myself.

I’m all for the positive mantra and keep telling myself not to worry about the scan results, as ultimately it won’t chance anything, but there is something niggling at me that I can’t shift. I have been distracted since scan day and find myself drifting off into a negative thought cycle about what may be to come.

The waiting game is really stressful, and it doesn’t get any easier with time. I’ve lost count of the amount of times I’ve been in the oncology waiting room getting ready to speak to a Doctor about my results. I’ve normalised the situation in my head, but it’s really not normal to go thorough this cycle multiple times a year.

Last week I had both my scans within two days of each other which was very anxiety inducing. Once I’ve been cannualated having the scans is easy, it’s the waiting around on the day or for results weeks later that is the worst. I have an MRI scan on my head roughly every six months, as having had a brain tumour one can’t afford to take risks. Praying my noggin is still behaving itself almost 10 years on.

I am fed up of living scan to scan feeling unable to get on with my life, but this is my life now. I hope over time this will continue to get a little easier. By Christmas 2019 I will have been off treatment for a whole 12 months and that is a huge achievement. I will never get rid of the fear around scans, I would love to be able to get the results instantly rather than go through the painful waiting process.

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 every 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 shower plug hole and although this is totally normal 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.

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.

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.

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”

Another Year With Cancer

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

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

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

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

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

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

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

The 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. 

Living With Scanxiety

My next PET CT scan date is looming and my major fears about the future have reared their ugly head once again.

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to an imaging scan, during the scan and whilst waiting for the results to check for disease progression. I’ve read about the term a lot over the past few years as it’s frequently referred to within the cancer community.

Over the last eight years I’ve had countless scans; MRI scans, CT scans and PET CT to name a few. Each come with their own levels of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago! I spent the night before Christmas Eve in hospital as a result and it’s fair to say the day itself passed me by and I only woke to eat and went back to bed again as soon as I could. It wasn’t such a Merry Christmas after all. Now I am contrast free and go for PET CT scans every three months, which eliminates the use of contrast, instead using a radioactive tracer which I’ve so far had no issues with.

My anxiety levels have increased over the past few weeks, I’ll go from feeling fine to the brink of bursting into tears on the short walk from my house to the tube station on my way to work each day. I keep having nightmares about my diagnosis; being told Pembrolizumab isn’t working and there isn’t any more treatment that can help me, or loosing my hair again.

When you have cancer, all the focus is on physical health and trying to keep disease at bay. The constant cycle of treatments, particularly with invasive chemotherapy and Immunotherapy appointments over the past four years has meant its my full-time job. I worry often that my mental health suffers as a result, and it’s only in the past year or so I’ve really focussed on trying to get myself mentally stronger. Lately I’ve been feeling as though I am having a bit of a midlife crisis, and dealing with cancer daily is more than I bargained for, more on that in a future blog post!

Despite me being a ‘lifer’ in cancer terms it seems I would be used the routine but in reality it doesn’t make the multiple appointments any less worrying. The ridiculous thing is that regardless of me loosing sleep or not, the outcome will still be the same. What will be, will be after all! What I know is that it is something that consumes my mind from the moment I wake up until I go back to bed at in the evening, there is no rest.

I have been feeling sick and suffering from headaches, which I’m sure are a sign of the worry and stress, or maybe I just need to eat breakfast when I wake up. My experience means that my mind jumps from headache to deadly brain tumour in a instant. I know all the signs because I’ve been there before, so have had a couple of acupuncture sessions in the hope some tension will be relived.

The next few weeks are going to be testing. I’m wishing time away again so I know where I stand.