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 my local surgery 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 managed 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.

Lake District Five Peaks Challenge

Last weekend I conquered the Lake District 5 Peaks for charity, including England’s highest mountain Scafell Pike in just one day. I did this in aid of Trekstock, a young adult cancer charity I’ve frequently mentioned in my blog.

I found out about Trekstock through social media, and over the last 18 months I’ve found them a great source of support. Through the charity I took part in their RENEW exercise programme and also became involved in the BBC documentary A Time To Live by Sue Bourne. I have also benefited from other events they’ve organised for those who have experienced cancer.

The challenge, organised through the company Charity Challenge was without a doubt one of the hardest things I’ve done in my life! It was the most difficult physical challenge I’ve set myself so far. I was on my feet walking for the best part of 12 and a half hours straight and I found the trek both physically and mentally tough. I felt so many emotions in one short space of time; I laughed and I cried! (A lot!), but I’m proud to say I did it! I was the last person in my challenge group of 44 people to finish on the day, and I’m sure I said I couldn’t do it about 1000 times. My hips and legs became so tired that I had to give up my backpack for the last four hours, and the Charity Challenge team kindly carried it for me. I kept joking that the leaders should apply for World’s Strongest Man as they carried my backpack (as well as their own), whilst navigating across the boulders and rough terrain of the landscape. The whole experience reminded me of the type of person I am; I’m a fairly nervous person, I get scared easily, and the weekend confirmed that I’m certainly not an outdoor enthusiast! It took me longer than average to learn to swim, ride a bike and drive a car, so I shouldn’t be surprised I found the trek tough going! I know I won’t be signing up to adventurer Bear Grylls next TV show in a hurry.

Despite my initial disappointment at finishing last, I have to remind myself it wasn’t a race, I also had chemotherapy last Monday, so I know I should be especially proud. Initially it felt bitter sweet; the challenge reminded me that I am not invincible, and that having stage 4 cancer means I will inevitably find it difficult to do things that a healthy person could do more easily. As first I felt really upset, as it was a reality check, but it hindsight I’m just glad to have finished.

I’m still very sore and in pain, and pretty sure I’m going to loose a toenail but it was worth it!  Without sounding like an awards acceptance speech; I am grateful to my two wonderful friends that completed the trek with me (they must be mad!), I’ve never been so happy to see two people before. Huge thanks to the Charity Challenge team who made sure I powered through, and of course to the lovely Trekstock team. I know the money raised will continue to make a huge difference to people like me. It was lovely to meet so many other people connected to the charity, who gave me encouragement, supported and cheered me on until the bitter end. I’ll certainly be visiting the Lake District again soon, it isn’t an area of the world I’d visited before, and the landscapes were stunning. It goes to show there is so much beauty in England so close to home, I still have The Travel Bug, but I’d love to explore the UK more.
 At the moment I’m not sure the Lake District 5 Peaks would be something I would do again in a huge rush, but knowing me I’ll probably end of signing up to something else in few weeks. Perhaps I should opt for a simple bake sale instead? Overall I feel a great sense of achievement. and I’ll be riding high on that wave for a while, even if I am still hobbling.

Raising money has helped to give me a sense of purpose, and it’s a great feeling knowing it can make a real difference, helping to improve the physical and psychological wellbeing of people in similar shoes to mine. In total I’ve raised over £1,100 for Trekstock so far, and if you’d still like to donate you can do so here.

I am also delighted to say that I had stable scan results at my oncology appointment last Monday, which is of course fantastic news. Now that I know, I hope I can relax more over the next few months and enjoy my summer adventures and birthday celebrations.