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.

Read All About It

A quick blog post to update people on my latest media venture.

A little earlier in the year I was interviewed for Mail On Sunday’s YOU Magazine, and the article comes out this Sunday (22 July).

The piece focusses on my story, talking about my cancer experience so far and how my family and friends have helped me navigate through the toughest journey of my life.

I hope it helps to raise further awareness of what it is like to live with stage 4 cancer, and all the ups and downs that come alongside it. In the article, I talk about my initial diagnosis, treatments so far, my work / life balance and raising money for charities such as Trekstock, who have been a huge help to me over the past couple of years. Nowadays I struggle to remember what it was like to live without cancer, to live my life and not feel as though I am in constant fear every single day. Cancer will always be part of my life, so it’s important to acknowledge that, but it is not all I am about.

If you’re able, do go and pick up a copy and have a read over your breakfast / exercise session / bath on Sunday morning. Thank you so much to the lovely Rosalind, Charlotte and all the team at YOU Magazine.

UPDATE: You can read the online version here

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!

The British 10k

I’ve decided to take on another race, the The British 10k in preparation for my Northampton Half Marathon in September. I know, I know, here I go again…

I recently took part in the Lake District 5 Peak Challenge for Trekstock. I know I’ve since moaned a lot, but It was the most mentally and physically tough challenge I’ve set myself to date, and I’m still a little injured because of it. Despite everything I wouldn’t change a thing.

Completing the 10k will determine if I’m on track for the Half Marathon for The Lewis Foundation in Northampton in September, so I am testing the waters so to speak. I’ve ran a half marathon before however I was much fitter then and the treatment I was having meant I could sustain a good training routine. This time around I haven’t done any running and have hardly set foot in a gym since late last year. My body moves slower than it used to and the frequency of treatment means I suffer debilitating fatigue for days on end.

Despite everything I feel like I have to do something, even raising a small amount could help make a big difference. I know the weather is set to be much nicer than when I did the London Winter Run 18 months ago for Cancer Research UK with family and friends, so that is a bonus.

Over the past few months I’ve been following the story of fellow stage 4 melanoma patient Emily Hayward via Instagram and You Tube and learnt today that she has sadly passed away. I know I am not alone when I say her story touched so many lives, both with or without cancer. I found her vlog really compelling as there are so many parallels with our journeys. She has inspired so many people with her strength and positivity, not just those with Melanoma but others undergoing immunotherapy and chemotherapy too. She maximised the good days, and chatted about making her days matter, and making her life count even though the odds were stacked against her. Emily accepted her diagnosis and lived life to the full every single day. There have been other great Melanoma blogs such as Dear Melanoma and Wrestling Melanoma I’ve followed over the years but sadly those people have since passed away too. Who is to say I won’t be next? No one.

News like this hits home hard! It’s a scary reality and I’m petrified about what may come, in an instant one can realise that life is so fragile, and so bloody unfair. The cancer club is a horrible club to be part of, but it is full of very incredible people.

I need to feel like I’m doing my bit; as I’ve said before it gives me a sense of purpose and focus. I want to make sure my life counts, and make each day really matter, I guess perhaps we only have one life after all?

The NHS is an incredible resource which we are very very lucky to have in the UK, but charities like Trekstock offer support that I haven’t always found elsewhere and feel it’s only right to try to make a difference in the hope it’ll help others like me moving forward, either experiencing a life with cancer, or a life after cancer.

If anyone is free early morning on Sunday 15th July and in central London, do feel free to come and cheer me along during The British 10k. I’m not sure I’ll be running, as I still need rest and don’t have time to train, but even if I’m walking I don’t mind, just as long as I cross the finish line. If anyone does wish to sponsor I’m looking to raise £200 from this event, and will also be raising money in August ahead of the Northampton Half Marathon. A link to my page for the 10k is here.

I’ll never understand why life deals some people such a bad hand; I feel overcome with emotion just thinking about it, and at the moment I’m one of the lucky ones which seems bizarre. Life is short, and I want to live mine to the fullest for as long a possible. I don’t want to waste a moment of this precious life. I just wish I had the answer on how to fix things.

Still hoping for a miracle.

Confidently Speaking About Cancer

It seems that for the most part I can write blog posts about my feelings, even speak on national television about my cancer journey, but often when It comes to smaller settings, or even a one-to-one, I clam up and become emotional. Having cancer has affected my confidence in so many ways, it varies each day depending on how I am feeling.

I can struggle to express things to friends and family, often just opting for telling people I am ok, but I don’t mind frequently sharing my thoughts online for anyone who wants to read. I don’t quite understand why I react in this way. Perhaps because some forms of sharing feel like the are more for the ‘greater good’, and could help others as well as myself, so somehow feels more worthwhile. In some ways I feel more detached from my story, but if an individual asks me about my hospital visits, even if I know them really well, I start forming tears almost instantly. My confidence levels can change daily, I certainly don’t feel confident when I am having my treatment on the chemo suite surrounded by lots of other unfortunate people. During one of my recent visits I had what I would describe as a breakdown moment. sitting in the chair waiting for my drugs to arrive I became overwhelmed with negative thoughts and burst into tears. Life is unfair, it really is, I needed a good cry that day, but no amount of crying will change my situation. One of the nurses kindly pulled the curtain around the area I was sitting (not that a flimsy blue curtain is at all soundproof) and went to get and get my mum who was in the waiting room.

A friend asked me a few months ago if I had considered filming a blog or starting a podcast, but the idea scares me much more than writing things down. With a vlog or podcast it is different; I feel I would be judged in so many other ways, and feel as though I wouldn’t have anything new to say. What if no one watches it except my parents, and, if people do, I fear it won’t be interesting or engaging enough. Vlogging or creating a podcast seems like a bigger investment somehow. Who really wants to know what I did on a day off? I also don’t like the sound of my own voice; it is my voice however, and it isn’t going to change, so I should just be comfortable with it. I also have a lot of scars, including a particularly huge one of my neck form my original melanoma site, so the thought of creating a video where I am the subject feels strange to me. When Sue Bourne and he team filmed me for A Time To Live they followed me around for a few days, I got to know the small crew and felt secure with them. I still think I look odd and slightly uncomfortable on camera though!

If someone was asked to describe me I’m not sure what they would say; in some ways I’m confident, but in other ways I feel cancer has crushed my confidence and I can’t move forward. On the outside I seem fine, but on the inside it can be a different story. My fear with vlogging would be that others would be hoping to see a happy person or hear encouraging words on how to be powerful and strong and brave, but I often don’t feel that way. People want to see positive stories, but what if I can’t give that? Not every day is a good day, I try to muddle though as best I can.

I’m often happy with my own company, or having the house to myself for a night, but cancer is a lonely place, and I don’t think I benefit from having down time, as it’s gives me too much room to think. Towards the end of 2017 I felt I was in a dark place and was prescribed antidepressants which I’ve now been taking for over six months. This has helped take the edge of and feel like I can still get through a day unscathed. Often, if I am around people I trust and love I can be the most chatty person in the room, but put me in front of  new people and it is a different story all together and my confidence is non existent. Ultimately I am just me and I should accept it, but cancer has changed me forever in so many ways, and I can’t go back to the younger, carefree, drama student version of myself.

I Should Have Been Dead By Now

It’s almost my 31st birthday. This year, like every year I’m beyond grateful to have had another 365 days on this Earth. Looking back over the previous year I realise how much I have achieved. I might have travelled less than previous years, struggled a lot with my mental health, and seen friends and family less frequently that I would have liked, but I’m still alive. Quite frankly I should have been dead by now. In fact, on paper it should have died years ago.

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. Having been diagnosed with stage 4 melanoma in two sites (brain and lung) at 23 it was a shock I made it to my 25th birthday, let alone my 30th last year.

Any money I have managed to save during working life has gone towards living a good life when I’ve worked less, paying for been able to live independently when I’ve been signed off sick from work for weeks on end, or going on trips and holidays to make the most of life when I’ve been feeling well enough. Saving towards a house or something more substantial feels impractical because I’m not sure I’ll have a future to be around and enjoy it. Now I’m 31, but I’m not sure how much ‘good’ time I have left.

Two 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 what I did have was unrecognisable from my usual self. Four years I was also spent my birthday in hospital, having initial been admitted for suspect appendicitis at St George’s Hospital in London. It turned out to be my first bowel tumour and marked the start of me receiving systemic cancer treatment in hospital every few weeks.

I do feel as though I put pressure of myself to do things whilst I am well enough and feel able, therefore making the most of the time I’ve got left until I start to deteriorate. In reality I want to make the most of things, however lack of time and energy are huge factors. Naturally I want to make most of what I’ve got now, but I also need to stop, look around and appreciate what I have. It might not last must longer, so I need to pause and take stock. Some days are better and others are much worse, and accepting that has been one of the hardest parts of living with cancer.

When I was in my early 20s I thought I wouldn’t see my younger siblings grow up. Now they are grown up and are taller than I am! In a way time flies, but the long road has been full of twists, turns and more than my fair share of major challenges along the way. I’m often trying to charge forward in life and catch up with all my friends along the way, but I need to accept this is unlikely. Just to be alive and well feels like a miracle sometimes.

I should have been dead by now, but I’m still alive and considering my dire prognosis it’s a huge win for me to be doing so well.

The Rough And The Smooth

I used to find it so clichè when people described having cancer as being on a rollercoaster, but at the moment, it feels like one of the best ways to easily articulate daily life living with stage 4 melanoma.

In my previous post I mentioned that amazing news that my last PET CT scan results were stable. Despite this, I have felt very up and down over the past three weeks. Sometimes I find living with the side effects of cancer treatment can be harder that having the treatment itself.

Sadly the results don’t mean all my side effects from taking Pembrolizumab disappear over night, it’s probably quite the opposite as somehow I feel more aware of my body than ever before. Living with cancer has so many ups and downs, it’s mentally challenging and know from experience that the good news can change to bad very quickly.

Last week I dreamt I had five brain tumours, not one, but five! Negative thoughts like this will always haunt me, and dark clouds will follow me around wherever I go. I worry so much, particularly about getting a brain tumour. I had one removed when I was initially diagnosed with stage 4 cancer in 2010 so for me this isn’t an irrational thought.

Over the past few weeks I have been attending regular CBT sessions in order to help me manage my anxiety surrounding my diagnosis and the depression that comes with it. It is hard to accept that having been labelled as terminally ill it essentially means I am dying. It might not be today, or tomorrow, or in a month or perhaps even a year, but one day cancer will get the better of me. For all those people who suggest I could get hit by bus tomorrow and die instantly so I shouldn’t worry; trust me it is not that same thing. At the moment I’m taking each day as it comes, taking the rough with the smooth so to speak. When I’m in a negative spiral it can often take a little longer to ride out, even though I try to be a positive as possible.

According to the NHS website, Cognitive behavioural therapy (CBT) is a type of talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat depression and anxiety, and is based on the idea that negative thoughts and feelings can trap a person in a vicious cycle. The therapy aims to help people deal with problems that feel overwhelming in a more positive way, by breaking them down into smaller parts. Essentially learning how to change negative patterns and become more positive, looking for practical ways to improve a persons state of mind.

Through my experience so far I think CBT has been beneficial, however as I write this I am mid hospital appointment, having just broken down in tears. A hospital is the last place I’d ever want to be, but I don’t have a choice about coming to have treatment. Sometimes it’s all too much, even if the appointments are running to time. It’s not one particular thing that makes me emotional, it’s the whole treatment process. A classic example of a day which had been pretty unstable; I feel like I’ve experienced so many emotions in one afternoon. Hopefully tomorrow will be a better day and the CBT will continue to help me move forward living with cancer.

This July marks two years on current wonder drug Pembrolizumab and 7.5 years of living with stage 4 melanoma. Any tips on helping manage emotions would be much appreciated.