Scan Results And Festive Freedom

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

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

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

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

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

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

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

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

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

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.

Seeing Scars

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

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

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

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

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

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

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

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

Loving The Skin We Are In

As I come to the end of relaxing few days away in Cyprus it’s dawned on me just how many people are dying for a tan, and will go to any lengths to get that sun kissed look all the holiday adverts suggest we should have. What happened to loving the skin we’re in and looking after it?

Last summer I wrote a post called Why Everybody Needs To Wear Suncream and for me these words will always ring true.

Wearing sunscreen on a daily basis is the best thing to do to keep skin looking youthful and healthy, but people do the exact opposite to get a tan, exposing it to the strong sunshine or tanning bed lights for hours on end. I know people who wouldn’t go out of the house without make-up and wouldn’t let their own children go out without sun cream on, however chose not to protect their own skin against UV radiation.

Sometimes It can upset me that people don’t take this seriously despite knowing about my Stage 4 diagnosis, particularly those who are close to me and have followed my journey. Strangers on sun loungers in Paphos can almost be forgiven, but part of me wishes I had a sign around my neck explaining why they should cover up. Something like, ‘Stage 4 skin cancer, spread to brain, lungs and bowel, dying to live, don’t die for a tan’. Might be a bit much though?

Our skin needs protecting just the same as the other organs in our body. We are all at risk no matter what climate we live in, but it’s certainly heightened when we holiday in sunnier climates. Just because someone has been wearing factor 20 or 30 all week doesn’t mean there skin is ‘used to’ the sun and they can then go without. By trying to tan quickly using a low factor SPF, people increase the risk of damaging skin long term.

My personal belief is that everyone should be wearing high factor protection. I didn’t get melanoma from direct sun exposure, and the desire for a tan, but for me wearing anything less than factor 50 would be stupid.

Over the course of the week I’ve seen so many people with bright red faces and bodies basking in the glory on the early October Mediterranean heat. Cyprus has been described as a year round destination, so I can see why people come here to get there summer sun fix, particularly before winter sets in. It’s painfully obviously that red skin is not a good look and doesn’t turn into a tan afterwards, it peels and flakes off and not to mention it’s painful too. I’m currently sitting on a sun lounger in the shade and can spot at least 5 people in my immediate vicinity with severe sunburn.

As someone who is fighting to stay alive I don’t understand why people see sun exposure and even getting a tan as so important. I’d rather been a pale Patsy than a red Ruth any day. But maybe it’s because I know how unpretty, heartbreaking and soul destroying a life with a serious cancer diagnosis really is.

A few years ago prior to my stage 4 diagnosis I watched a BBC documentary about people’s love of tanning with one of the signers from Girls Aloud called Nicola Roberts: The Truth About Tanning.

In the documentary, Nicola, a pale red head explore the culture of tanning amongst young women and men in the UK, and the extremes they will go to in order to obtain the perfect tan. She meets women whose love of tanning has become an addiction, using sun beds 5-6 times a week and someone who inject untested tanning-aid drugs bought online in the quest for the ultimate tanned body.

Even though I hadn’t had my stage 4 diagnosis at this point I remember crying to my mum whilst it was on television as It was far too close to home for me; one of the segments featured a mother who had a daughter who died from melanoma which had started as a result of frequent sun bed use. I cried as I told my mum that it could have been me that died from melanoma. Little did I know that my life would change forever as a result of the same disease shortly after.

Fake it, don’t bake it! Love the skin you’re in as the Oil of Olay (or Ulay) advert once suggested. You never know, protecting it might just save your life.

The Results Are In

I have now been sharing my story via my blog for almost two years, and luckily in that time have also remained stable on my latest Immunotherapy drug, having had my last major surgery in the summer of 2016.

This week is also very significant as it marks exactly 13 years since I was initially diagnosed with stage 1 malignant melanoma via a mole on my neck when I was only 18 years old. I have now been living as a stage 4 patient for almost 8 years. I was told back then I may not make 25 and now I’m 31, struggling sometimes but I keep picking myself up again. Cancer has been with me my whole adult life, which is something I don’t think I’ll ever be able to accept.

In some ways my stage 4 diagnosis seems like a lifetime ago, but in others not much had changed. Not long after I had started recovery from surgery to remove my brain tumour and lung tumour I moved to London ana went back to work. I’m still living with friends in the capital city and attempting to navigate the working world as best I can. Around three years ago I moved form South West to East London, so it almost feels like London is a new city, having discovered parts I would never have seen before.

I still get too caught up in the moments when I feel well and then book in too many activities, so last weekend I spent a lot of time relaxing and napping in preparation for the week ahead. I had a chest infection and needed antibiotics, which I think have since cleared everything up. I need to be on good form for the Northampton Half Marathon on Sunday to raise funds for The Lewis Foundation.

I had a PET CT Scan last week and travelled to Leicester to get the results yesterday. I am delighted to say my news was all very positive and takes the pressure off over the next few months.

However, no matter how many times I’ve heard positive news over the last two years there is always the fear my world will fall apart again at any moment. In some ways it feels like I’ve been given a golden ticket, but tomorrow I could find out it’s actually fake after all. I am of course relived, but the fear doesn’t disappear over night.

I’m now very used to the three weekly routine and cycle of my treatment, in way it has become staple part of my life up until this point. Travelling to and from the hospital gets me down, it’s mentally stressful and physically exhausting, but it’s nothing if it means I have a functioning life the rest of the time. I need to try and shift my attitude so that I am ‘living with’ cancer rather than all the negatively that plagues me about dying from it.

Here’s to LIVING!

Wishing I Was Anonymous

As I come to the end of my two week holiday I’m looking forward to getting back into a routine. As much as I love being away and exploring new places there comes a point where my fatigue kicks and I am ready to rest in my own space and sleep in my own bed.

One of the best things about being on holiday is being anonymous. I travelled alone for seven days after my friends wedding; a whole week where nobody I encountered knew anything about my personal life, to them I was just an ‘ordinary’ person travelling alone, but for me the trip meant more than that. I didn’t have to feel the need to explain myself wherever I went, which was a welcome break for me. I’ve spent the last year worrying that my illness would mean that somehow I wouldn’t make it on to the flight. When I first booked the trip I kept thinking that if I die in the next year, would my family be able to get the money back I’d paid so far?. Morbid but true!

This holiday helped my realise I need to try and stop letting cancer define me. Like it or not it happens to me every day. I can be who I want, sometimes it isn’t always possible, but there are occasions when I can be completely anonymous and free from the poison chalice that is my terminal diagnosis. Even if it’s for a few hours it feels so nice to feel I fit in to the crowd. Looking well is a huge bonus in this situation as there are no questions asked. I enjoyed being a typical tourist exploring a new city.

For the first few days of my solo trip cancer was very far from my mind, however a few days in I received an email confirming my next PET CT Scan at the end of the month, so I am back in purgatory for the next few weeks whilst I play the quarterly ‘will or won’t my cancer be stable’ waiting game. You’d think after almost 8 years since my stage 4 diagnosis and approximately 4 years of active treatment I’d be used to this, but I’m not!

During my trip I noticed some spots of vitiligo getting worse, which I think could be down to overall sun exposure whilst away. Although I wear sun cream constantly I spotted a new area appear on my neck which made me feel really low. This change in skin pigmentation is a side effect of my treatment. Most of my vitiligo is in my torso and legs so not easily spotted by others, but the new area, along with the huge scar on my neck from my original melanoma is much more obvious. I also had a couple of nose bleeds, but I think this is likely to be down to the huge head cold and sore throat I got whilst in Chiang Mai.

When I look in the mirror I see I scars or marks of cancer treatment at every angle, the mark on my neck is another to add to my collection. I have scars on every part of my body from different operations, some more obvious than others; I have a protruding portacath for my immunotherapy treatment, vitiligo, raised scars, tattooed eyebrows and a slightly lazy eye. I had the last eye as a child but it got progressively worse again a couple of years ago so I had it operated on for the third time. The surgeon told me he thought it was very divergent considering I’d already had surgery twice, and the shift could be down to optical nerve damage that may been cause by my brain tumour a few years before. Although this is not necessary why, I can’t help but feel my tumour had something to do with it, because nothing is ever simple in my world. My left eye still remains slightly lazy, another reminder of all the crap I’ve had to go through. I so wish these things didn’t have an impact and I didn’t care, but I really do.

I should look in the mirror and be proud of my body, I know this because it has been so strong and fought back at every opportunity, but there are days when its difficult. The last few days have been hard, with no one there to help distract my thoughts about plans for the day or if the breakfast in the hotel will be good.

I really try not to let cancer define me, not to let it win, and It’s certainly not going to destroy me. When I feel low and depressed its not necessarily one particular thing that I can put my finger on, but a combination of the whole living with cancer package that throws me into turmoil. It’ll be something seemingly small, such as spotting the vitiligo earlier which will push me over the edge and then makes me feel down again.

All the scars and marks remind me there is a extremely unwell person staring back at me. That person is asking for the magic cure to fix everything. I have to dig deep for the mental strength to and carry on, only wishing I had the answer my reflection is looking for.

Being positive and picking myself up each day isn’t always simple, I try to see the good in situations and hope one day I’ll have the answers. I want to feel happy but it isn’t always the case. It goes without saying I’ve had an amazing couple of holidays over the last few weeks, I had a chemotherapy break, so when I go next week it’ll be the first time in six weeks, which is a rarity. America and Asia have been so much fun, but my reality is still the same as it was a few weeks ago, and it’s always hard come back from a good place mentally knowing it’s going to be a bumpy ride.

Can I go back to being anonymous please?

Becoming An Adventurer

I am about half way through my holiday right now, so far I’ve visited Phuket and Chiang Mai in Thailand. I’ve created some wonderful memories, taking me well and truly out of my comfort zone, perhaps I am more of an adventurer than I thought!

The main reason for booking the holiday was to be a bridesmaid for my school friend in Phuket. In total there was a group of about 50 people who had travelled from England to watch the beautiful couple say ‘ I do’. It was so much fun spending time with friends and their families, as it wouldn’t happen ordinarily. Cancer has been very far from my mind, especially sipping coconut water from a real coconut at a beach bar overlooking the ocean! The venue and wedding itself were beautiful, it was an idillic setting, despite the delayed start due to a storm. I can’t wait to see all the photos.

Whilst in Phuket my friend and I took a day trip to Phi Phi, it was stunning however the weather was awful, making the boat journey very scary, however we made it there and back in one piece and lived to tell the tale. Whilst there we took a long boat out from the shore went snorkelling. Not one of my usual weekend activities and very much in my red zone of being scary and unsafe (not the fish, but the boat itself).

I’ve also eaten numerous times on my own, apart from day time cafe jaunts to write blog posts I would never have dreamt of going out to a restaurant for dinner alone whilst in London. ‘Table for one’ just doesn’t seem like the done thing, but when on holiday anything goes!

After my Phuket adventures I flew North and explored Chiang Mai for four days, I’ve found it to be a relaxed and friendly city, and I’ve been able to continue my down time. A few months ago I booked a trip to an Elephant Jungle Sanctuary which feels like a must when in Chiang Mai. As many people know I am not a really an animal person, so getting up close was an interesting experience. You can see form my Instagram photos that I’m pretending I’m not petrified!

Despite having a huge cold (mainly thanks to air conditioning) I’ve enjoyed the time alone; being able to wonder around and not worry about anyone else is a bonus. I’ve slowly been loosing my voice, I’m sure it’s down to a mixture of the cold and not speaking to people very often, I’m just glad it’s nothing more serious.

On paper this trip was one of the most scary things I’ve ever done, I thought spending so much time alone would be boring and was worried thoughts of cancer, dying abroad and my upcoming scan towards the end of the month would take over, not having anyone there to distract me. Two destinations down, and two to go! Perhaps I am becoming more adventurous? So far it’s been a success, I’ve been too busy exploring to think about cancer. All the negativity surrounding my illness is very far from my mind, I just hope it lasts when I get back home.

Flying Solo

Next month I am flying solo in more ways than one. I’m heading off to Asia for a wedding, and then doing a little bit of travelling alone. Being a stage 4 patient the thought of being in another country travelling solo is petrifying, especially when it’s to countries I’ve not been to before. I keep waking up in the night panicking that I’m going to die on my travels with none of my family around me, this probably seems ludicrous to others, but it’s something that has been playing on my mind. No matter how much I try this always niggles at me when I’m far away. Realistically, I don’t want to travel alone but I am sure it’ll be an amazing experience, I didn’t go travelling during my last minute gap year so It seemed like too good an opportunity to pass up. I had a bit of a YOLO (you only live once) and FOMO (fear of missing out) moment when booking the trip around a year ago. I just kept hoping I would be around and well enough to see it through, and thankfully I am.

I begin my trip at a wedding with around 40 other guests, including spending the first part of the trip with some very close friends, so I won’t be short of people to chat to and share experiences with there. It’s been a long time coming and I literally cannot wait to spend quality time with friends! I also end my two week trip in good company, which is very lucky. I’m spending about 7 days on my own in total, and although I’ve travelled to places by myself to meet friends before, I’ve never spend that much time exploring alone. I am a little apprehensive about it, but there is no backing out now. A few years ago I spent three days in Barcelona on my own, I loved the city but I missed sharing the experience with another person.

I’ve chosen to travel alone because I may not have much time left; I love going on holiday and always want people accompany me, but I want to seize the day and create some good memories of life outside of the terminal illness vortex, companion or no companion. I am yet to figure out exactly what I am going to do yet, but I do love a plan! I have my bridesmaids dress, factor 50 sun cream, malaria tablets and new camera at the ready, and I intend on spending this weekend looking at guide books and scouring the World Wide Web to find out more about my go place and activities for each destination.

I am sure its going to be an amazing once in a life time trip, and I’d rather travel alone than not go at all. It would’ve been nice to have someone to share the experience with, but I didn’t want to miss out just because I’m single. I’ve been told by many experienced travellers I’m bound to meet people along the way, but if I don’t that’s ok by me. I just hope I don’t end up talking to myself too much!

Being single is a lonely, especially at 31, but so is living with incurable cancer and the two do not make for a great combination. As mention in my blog post Singles Awareness Day back in February, I feel due to my cancer diagnosis I cannot offer a future to someone else. I honestly can’t imagine having a permanent holiday companion and a plus one for life.

As we get older the stakes are higher, I’m sure there are loads of men out there with baggage, but the reality is my diagnosis creates a huge barrier. As we get older it becomes increasingly frustrating; the pool of soul mates keeps getting smaller and smaller, but my illness prevents me from letting my guard down. Maybe I have focussed too much on working and keeping sane that way? but nowadays it feels like there is a time pressure on finding someone and settling down. With life being so uncertain and fragile it feels like I have nothing to offer in that way. Who wants a life with terminal cancer patient on active treatment and on medication for depression anyway? Like it or not there is a huge stigma about being a single female in your thirties, all of a sudden it feels alienating, and with cancer on top this is a total nightmare!

At my age people start thinking more in the long term, I’m in the minority with most of my friends who are settled down. Personally, I cannot think in the long term; I feel like it doesn’t exist in my world, so how I am meant to move forward?. Having cancer has taken so much from me, not just having a wedding / holiday companion but the overall prospect of a relationship and starting a family. Cancer won’t ever let go of my life, there is no remission or stopping treatment in sight and I have to accept that I may never meet a man and settle down. The short answer is I can’t. I am not at the same stage as my peers, although part of me is relieved that a boyfriend isn’t going to be dragged through this living nightmare, the future does feel lonely. It isn’t so much that dating is on my mind, but singleness definitely is.

I’ve heard of people in unhappy relationships who have experienced a light bulb moment post diagnosis and left their partner, having a new found appreciation for life. I feel I didn’t even get the chance to really begin the search for ‘the one’. For me, the sky isn’t more blue, the grass doesn’t looked greener and I’m probably not appreciating the small things in life as much as other people, quite frankly I don’t like the feeling of sand between my toes – it’s too hot and it gets everywhere!

Having said that, of all the bad things cancer has given me I’ve certainly been shown a lot of love and compassion over the years. I am fortunate that there are some wonderful people in the world experiencing this awful journey with me, even if they aren’t my wedding plus one.

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.

Independence Day

I write my latest blog post for America on July 4th, celebrating Independence Day with one of my oldest and closest friends. Unsurprisingly I’ve felt really happy and content during our trip so far, as I’m removed from the realities of my daily life. It’s exactly two years since I started taking Pembrolizumb after my second bowel surgery to remove a tumour from my small bowel.

Thanks to Pembrolizumab I’m celebrating another kind of Independence Day; one that is free from cancer and all the worries that come alongside it. I’m in full on vacation mode right now and it feels lovely to have a long break from work and get some headspace.

Ten years ago at the age of 21 I studied in America as part of my university degree and I made some incredible friends from all over the world along the way. I was lucky enough to be a bridesmaid for one of my closest friends in Maryland over the weekend. America and the people I met remain very special to me, and I feel very fortunate I’ve been able to return to the states over the last decade, even though there have been times when I felt it would never be possible again.

Looking back, I wish I’d gone travelling on my gap year, however nowadays I feel even more grateful that I was able to experience living in another country as a young 20 something.

Health insurance can mean the America ends up being one of the no-go places for cancer patients, particularly those who haven’t been given the all clear or are classed as in remission, however I managed to get a reasonable insurance cover policy through a company called Insurance With. They recognise Immunotherapy treatments alongside chemotherapy which has made the insurance process much easier.

I’ve been caught up with everything at home over the last few months; a new job, moving house, a charity trek and the never ending cycle of hospital appointments. So much so that I hadn’t realised I need to take some time out. Walking through a stunning National Park yesterday made me feel like I hadn’t a care in the world, I’ve been so relaxed in the beautiful setting in Maine I’d even forgotten what day it was. I’ve been spending time with my oldest friend who I only see around once a year, so it’s even more special. If you follow my social media you’ll see my various holiday photos.

Often I feel as though I’m living in the shadows of the life I had before, but not today. Despite tiredness and aches and pains from hiking up a beautiful mountain yesterday I’m ready for a new day. It seems crazy to think just over a week ago I was having Chemotherapy back home, my 34th cycle of Pembrolizumab. What a difference a few days can make! I have vivid memories of having this drug for the first time; I remember the smell of medicine and cleaning products on the ward and the long wait for treatment whilst sitting in a side room. I thought the wait was a one off before I understood how the drug is made at the hospital pharmacy.

Two years is a long time to constantly receive treatment, especially as I’d been on other treatments before, but I’ve been given another two years of a good life, so no complaints there.

Happy Independence Day!