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.

The Season Of Good News

Following a recent report from Macmillan, there have been a series of articles in the news over the past few weeks stating that there are now thousands of people in England who have the most advanced cancers, and that they now surviving for several years after their diagnosis. There has been a lot of coverage in the news, for example on the BBC and Guardian websites.

The research, revealed at the National CancerResearch Institute Conference in Liverpool is based on data from England’s national cancer registry. The data captures people who were diagnosed with one of ten different types of cancer between 2012 and 2013 and were still alive at the end of 2015. For me, this isn’t really breaking news so to speak. Two years doesn’t seem like an awful lot of time to me, but its better than nothing, and who knows what the future will hold. It is of course good news! The data shows that new and improved treatments such as immunotherapy mean some cancers can be more manageable, similarly to that of other long term chronic illnesses. Sadly, this is by no means a cure. I still have a terminal illness, and I am still dying, but at the moment the disease progression is slower than I have been predicted in the past.

At my last appointment with my oncologist in Leicester I was told that my most recent PET CT scan was stable, there are no signs of disease progression at present. I ultimately can’t change the path my life has set out on, but I am always so happy to hear those words.

I have been a cancer patient my whole adult life, and stage 4 patient for over 7 years. Last May, after my second bowel surgery to remove melanoma one of my surgeons suggested I should think about giving up work altogether, given my diagnosis. Although that person was clearly incorrect, moments like that really hit home, and are a terrible reminder of how cancer has changed my life irreversibly. It bought me back down to earth with a huge thud. Life isn’t as simple when melanoma is involved.

My friends and family often comment on how brave I am, and suggest they wouldn’t be able to do the same in my shoes. I just try my best to get on with my life, I have no other choice. There is no other way to deal with the situation, so it’s actually pretty simple, despite my life being overly complicated. I would be lying if I said it wasn’t mentally and physically exhausting to get out of bed every day and carry on like there is nothing wrong; but there is no other path I can take, no alternative route. I feel unwell and exhausted a lot of the time, more than most people realise, but I just have to get on with it.

Lately, I’ve had many more down days than I have done previously, there has been a lot of late night crying in bed. I need to keep positive, but its those moments when I am all alone and more vulnerable that I think too much. I’m not finding baths as relaxing as they give me too much thinking time! When the door is locked it feels like a gateway to my emotions opens up and everything comes flooding out. I am trying to be kinder to myself and allow a few melt downs or sad moments which I otherwise would have brushed off. it is worse to bottle everything up, but emotionally it drains me of strength and energy.

I am still the same person inside, however I am just overly emotional at the moment. I’ve cut down on a lot of social activities in the lead up to Christmas and December is upon us. I am finding sometimes it’s just too much for me, particularly with the seasons changing. It’s so dark and cold outside, I want to go home straight after work and sleep. Sometimes this can be detrimental, as it gives me more time to dwell on negative feelings.

The positive news about my PET CT scan is something good to focus on, as well as all the exciting events in the lead up to Christmas time. It might be dark and cold but T’is the season to be Jolly! Perhaps this is the season of good news.

Why Everybody Needs To Wear Sun Cream

The recent change in the weather and the feeling of summer in the air has made me think more about the importance of wearing sun cream. Its important to highlight just how dangerous sun exposure or the desire for a tan could be. Although over-exposure to the sun is not how I got Melanoma, it would be silly for me not to start talking about it, as its something I think about frequently. In some cases situations such as mine could be avoided or prevented altogether, and I don’t want any one else to go through an ordeal such as the one I’ve been going through for the past 11 years.

I’ve spent many sleepless nights wondering if there was anything I could have done to stop this from happening to me, I think the ‘what if’ question will always be there at the back of my mind, along with a pang of guilt for the situation I now find myself in. I’ve never been a sun worshipper, and always cover up as much as possible, but the worry will always be present. I’ve been told my Melanoma would have developed regardless of the climate I live in. Still, regardless It’s easy to know the right thing to do after something has happened, but it’s always hard to predict the future.

As the summer weather reaches it peak I have a feeling I will see more news articles and images of sun burnt brits on social media often accompanied by laughing emojis or captions such as “LOL”. It’s difficult to comprehend why people don’t take this seriously, its no laughing matter. According to the Macmillan website, each year about 14,500 people in the UK are diagnosed with Melanoma, and it is one of the most common cancers in young people aged 15 to 34.

Often skin damage doesn’t show up straight away, perhaps a few weeks, months or even years later, with increased fine lines and wrinkles, and even skin discolouration. It is a vital part of a skin care routine which often gets forgotten about. Wearing sunscreen on a daily basis is the best thing to do to keep skin looking youthful and healthy. I know many people who wouldn’t go out of the house without make-up but chose not to protect their skin against UV radiation. If I am being truly honest it baffles and upsets me that people don’t take this seriously despite knowing about my Stage 4 diagnosis. It’s not healthy or good for a persons to expose themselves to such extreme conditions which our bodies are not built for. Our skin is the largest and fastest-growing organ and needs protecting just the same as the other organs in our body. Cancer does not discriminate, not matter who you are. Bob Marley passed away from Melanoma in 1981 after it began under the nail of one of his toes. It just goes to show we are all at risk no matter what climate we live in or ethnic background we come from.

I so grateful that my Mum made me get my suspicious mole on my neck looked at when I was younger. Once she spoke to me about it I developed a bad feeling about it almost instantly. I remember clearly raising these concerns with my Dad when staying at his house one weekend. I’m fortunate that the GP referred me so quickly, It just goes to show that If you have an overwhelming feeling that something isn’t quite right, you should trust their instincts and pay a visit to the GP. As the saying goes, if at first you don’t succeed, try, try again. I for one know my own body and what feels right or wrong. Often others seem hesitate to book a GP appointment because they consider their aliment to be something minor, or not worthy of the time of a professional, and we all know how stretched the NHS is. I’ve learnt that nothing is minor when it comes to your health and wellbeing, it is what the service is there for in the first place after all. When I was diagnosed with a brain tumour I had a few friends tell me that it prompted them show suspicious moles to their Doctors.  I know people who have since had moles removed as a result of a routine visit to the GP. Action such as this are great, and I am pleased people have been so proactive, but it shouldn’t take such an life altering event for this to have an effect on people. If in doubt, get it checked out!

I am fighting to stay alive due to an illness that is beyond my control, but there is a chance for others that it could be prevented. The side effects such as nausea, fatigue, diarrhoea, hair loss, rashes, joint pain, itching, headaches and reduced appetite are bad enough let alone the stress and physical and mental trauma of actually going for treatment at hospital every three weeks.

Naturally people should continue to enjoy the sunshine over the next few months if they wish, but I would ask anyone reading this think twice before heading outside without sun protection. I hope most of the tans I will see are from a spray can or bottle.

A Time To Live 

In October last year I was one of twelve participants interviewed for a documentary about people living with a terminal illness. The documentary, A Time to Live explores the question​ of​ what would you do if you were told you had a terminal diagnosis and may only have months to live?

​For so long I’ve had to face the uncertainty of a Stage 4 cancer diagnosis. I often wonder Why me? Why now? Did I contributed to this? Did I do something wrong? Is there a way I can change the final outcome?

​I haven’t yet fully accepted my diagnosis, and I don’t think I ever will. For me, this something that is an ongoing struggle to accept, but I’m determined to take something positive from it all. This is partly why I started a blog after all.

Blogging is ​a process which ​has helped me be more open about my feelings, and I believe it has also helped my friends and family have a clearer understanding of how I feel about my life ans all its challenges. I also hope my writing has helped other people who may be in similar shoes. For such a long time I thought I was on my own, it turns out thanks to the World Wide Web that I am not. There are plenty of other people, both young and old going through an equally challenging time who are also living their life to the fullest. Isn’t that what you would do?

During the filming I talked about my thoughts and feelings on having cancer and how I deal with the knowledge I have a limited time left on this earth. At 29 It is often hard to believe that my impending death will be much sooner than others. I have no control on the outcome and when that might happen. Do I wish I didn’t know? Yes.

A few years ago I would never have dreamed of being involved with a charity such as Trekstock or being part of something so public as a documentary​. Participanting in this  has allowed me to talk about my diagnosis in such an open way. I may have a drama degree but I am very much a behind the scenes type person! I spend my time organising interviews for others rather than being the one who gets interviewed. My friends and I frequently send documentary recommendations to each other, so it feels bizarre to on the other side of things, Its the sort of thing I would tune in to watch​! alongside programmes such as 24 Hours in A&E, Child of Our Time and anything Louis Theroux does (who doesn’t love a bit of Louis).

The documentary crew filmed me having my eyebrows tattooed and hanging out with some of my friends as well as filming me at work. Its these seemingly ordinary activities which have helped keep me sane, especially since starting active treatment in September 2015. Cancer has became my whole life, not just an inconvenient visit to the hospital every three months, but something that effects my life every single day. I am however a glass half full person, and I hope this comes across in the film.

On that note I’ll shortly be heading away for a few days to Prague, while I still have time to live! Please do tune in if you can, I’m sure it’ll be interesting viewing. You can watch my TV debut A Time to Live on BBC2 on Wednesday 17 May at 9pm. There is also extended footage available on The Open University website.

Huge thanks to Sue and the amazing team that put it together.

A New Reality

Two weeks ago I had an operation at the John Radcliffe Hospital in Oxford which I wrote about in my previous post Another Hospital Stay. The operation was closely followed by another cycle of Pembrolizumab. I didn’t realise how much of an effect a general anaesthetic can have on a person, I’ve had a lot more rest than usual and have been sleeping around 10 – 11 hours a night. This weekend things haven’t gone exactly to plan, having a severe bout of sickness has meant I’ve been on bed rest for the last couple of days, so all my work and bank holiday plans have gone out the window. No mater how much you work towards something, how much time and effort you’ve put in, cancer can take that away from you in an instant. After a couple of frantic calls to the chemotherapy 24 hour emergency helpline fearing that I would need to go into hospital things have now eased off. An unplanned hospital trip is my worst nightmare, and it with it being bank holiday could have been a long ordeal.

I have lots of celebrations coming up in May and a busy few weekends, including a trip to Prague. Its never easy living like this, life isn’t always as it seems from the outside. One minute I’m busying myself with work to distract myself from reality and the next I’m napping for numerous days in a row, or suddenly unwell. I’m either stuffing my face or have no appetite and I’m not really feeling a happy medium at the moment. Situations like this make me wary of making new plans. This summer I am going to six weddings, but I’m now panicking I won’t be able to make it to all of them, no matter how much I want to be there. In the past I’ve missed a number of weddings due to surgery or hospital treatment, so I’ll be hugely grateful if I manage to attend all of these event over the summer months. Cancer is my new reality and I have to take it one step at a time.

I don’t often let things hold me back but sometimes my situation changes rapidly and things become out of my control. Having my operation with one weeks notice was hard, it felt like bad timing, but with treatment cycles every three weeks there was never going to be a good time. I might not always portray it that way, but life isn’t a walk in the part, I struggle a lot with finding balance, I just try make the most of things when I am able to, but sometimes that comes at a price.

I often lay awake at night thinking about my future, and if there will even be one. We all know how this will end, but it’s still impossible to believe! Surely this can’t be my life? Of course the prognosis is bad, but it appears Pembrolizumab has given me a life line for now. Sometimes I don’t know what to think anymore because it doesn’t feel like this is normal. I’m sill working and going about my daily life. How can this really be happening to me? I know I have to accept it as a consequence of being alive, but lately I have been finding that waves of illness and generally feeling exhausted are becoming more and more frequent. It saddens me to think my life has become like this. A new reality.

I know I’m lucky to have lived well for so long, and that despite a few bumps in the road recently, for the most part I am continuing to do so. There are so many people who have been taken too quickly, or far too soon. Shortly after starting my own blog I came across two incredible blogs from melanoma patients who have since passed away, Wrestling Melanoma and Dear Melanoma. Reading these blogs made me realise that I wasn’t the only young person going through such an ordeal, and they gave me the confidence to keep writing about my experiences.

Like many Stage 4 patients I know what’s coming, but I can’t imagine what my family will do when I’m not here anymore. In some ways I refuse to believe it, because for me It would be accepting defeat. I have already been alive for 6 and a half years since my Stage 4 diagnosis, around 5 years longer than predicted. I have learnt that sometimes there are situations which we cannot change, no matter how much we want to. Although we don’t have control over what has happened previously, we are the ones who make our life what it is. I could look at this negative situation and (often rightly so) see nothing but darkness, or I could look and see the glimmers of light which show hope. I guess it is how we deal with these situations shows our true personality.

The bottom line is, it really doesn’t matter what type of cancer someone is diagnosed with, how old they are, or what the overall prognosis is. When your life is on the line and it could be cut short without notice its completely terrifying. Wondering if you are going to live or die or not something anyone should have to go through. It is ok to not have the answers, I know I don’t. Its really difficult to fully understand what goes through another persons head until you’ve experienced that death is there, just waiting for you around the corner. Sadly its a frightening reality for some.

Another Hospital Stay 

On Wednesday I’m due to go into hospital for another short stay, my first and hopefully only one of 2017. Just another day in the life of a stage 4 cancer patient! This time it’s not for Immunotherapy, but for an operation to remove the piece of metal that is protruding from my head and causing me pain. In my post Not Just In My Head I wrote about how my craniotomy scar has caused me a lot of pain over the years, and finally finding out why this was a few months ago. After a couple of consultations and different scans, it appears that the rogue piece of metal is a surgical staple or crainial fixer that was originally used to connect two pieces of bone in my skull back together after my brain tumour removal in 2010. Naturally there shouldn’t be anything poking out of my head! I could try to leave this as it is, however the area around the scar site swells up intermittently, so needs to be dealt with to stop causing me pain.

Last week I went to a pre-operative assessment appointment at the John Radcliffe Hospital in Oxford. During the visit I had various tests to make sure I am fit and well enough for surgery, including an ECG, MRSA swabs and blood tests. One of the nurses in the Nuerology outpatients clinic explained the whole procedure to me, and gave my a swag bag to take home with mouthwash, antiseptic cleanser and nasal ontiment in preparation for surgery. Being a bit of a pro and major operations I had used these before so wasn’t particularly phased by the procedures. The smell of the antiseptic cleanser reminds me of hospitals so I’m sure I will fit right in. Although the operation requires general anaesthetic it’s isn’t major surgery, such as having a tumour removed, it isn’t a life or death situation, but it’s certainly not common or without risks. I am also pretty sure it isn’t supposed to happen! In an odd way I’m looking forward to getting it over with so I can finally lean on both sides of my head again. 

Back in February I returned to the John Radcliffe hospital for perhaps only the second time since my major surgery at the end of 2010. During my consultation I saw the surgeon who performed my original operation, a man essentially credited for saving my life at the time. He explained the removing the fixer is a fairly straightforward procedure, which is always good to know, but that it wasn’t your every day occurrence. I’m not sure what has caused it, but these random things always seem to happen to me, so I’ve learnt not to be shocked. I always seem to be reminded that I am ‘not the norm’. The Surgeon asked how I had been since I last saw him, and remarked that I looked well, to which I responded ‘well, I am still alive so that a bonus’. A bonus indeed given the dire prognosis I had, expecting the surgery might buy me more time, a few months at best rather than years. 

Often my hospital stays are not planned, so at least this time I am able to pack and overnight bag. I’m really glad I will be seeing my old Surgeon for the operation, it makes me feel much calmer knowing that he knows my case and isn’t just going in there blind. More often that not I’ve found myself in an A&E hospital bed with no clean clothes or a phone charger, so planning ahead feels like a bonus. There is nothing worse than feeling unprepared and uninformed.

I keep reminding myself it’s just a short hospital stay and a few stitches so I am hoping I will feel fine by the weekend. Now I’m off to remove my nail varnish in preparation.